Michael's Road to Recovery

First Half of 2011 Summary

2011-05-31T18:47:00.013-04:00

I haven't posted much on this blog about Michael, because I do daily updates on Facebook. Most of our family & friends are there, plus it's soooo easy :)

But, I thought for those of you who read the blog, but not our FB updates, I should post some new information today.

Michael is currently finishing up his last month of 6th Grade. He'll be going to Jr. High School next year. Can't believe it. He's also grew a lot- probably about 5'3'' or so. We stopped chelation last March (2010). Michael's still in a class with 24 kids. He gets some special help- like an aide & an additional teacher for the class (Special Ed teacher). Everyone has been really great at school. Michael has done a lot this year. Again, he was in the drama club. They did Aladdin this year. He still plays violin in the orchestra. One activity was different- he played in the volleyball club recently. They met once a week before school. Michael also joined the Yearbook club and helped to put the Middle School yearbook together.

This winter was VERY cold & snowy on Long Island. We had snow on the ground for at least two months- so we didn't do much outside. Reminded me of my old Buffalo days :) Spring/Summer is here now FINALLY & we're excited. The pool is open & we'll be taking another roadtrip this summer (NY-->MN).

Here are some recent photos of Michael:
Thanks again for keeping up with Michael's progress. We've been very lucky. Michael continues to work hard & is closer to "recovery" every day. Socially, he still has challenges & the peanut allergy is a pain in the neck- but basically he leads a pretty normal life. Michael likes watching iCarly, Sponge Bob & Glee. He rides his bike, swims, goes to church, plays in the orchestra, etc. His teachers have described him as "the most behaved kid in the class". We are all so very proud of him.

The only thing biomedically we have changed is we added "Amino Support" from Kirkmans a few months ago (saw increased speech). He's still gluten/casein/soy/nut/sesame/pea/garlic/beef/pork/seafood free. We are also still giving him Coromega, MB12 from Kirkmans, Super Nu Thera from Kirkmans, Vit. D, Calcium, TMG, Glutathione, MSM, ALA, NAC & probiotics (including Nystatin).

Video- Sept. 2010

2010-09-14T21:40:00.002-04:00

He looks a little odd laying in bed- but Michael wanted to do a "you tube video" and show his progress. He just turned 11 last month and started 6th grade last week. He's in a class with 24 kids (along with an aide).

You're NOT going to believe this!

2010-05-17T15:33:00.002-04:00

There have a been a lot of changes since last year. First, we stopped chelating last month. After 3.5 years and seeing all the progress, we felt like we got all we could of of chelation- which was a lot. But, I think now we have to focus on the social & school stuff.

Speaking of school stuff, Michael is now FULLY MAINSTREAMED in a 5th grade class. He does have a shared aid (to help with social & keeping him away from deadly peanuts), but now he's doing all regular work and tests. His new teacher is WONDERFUL. She has a nephew with low-functioning autism and REALLY understands Michael. More than that, she really LIKES him! And we like her too!

Michael performed in the school musical (for the second year in a row) and still plays the violin in orchestra. He has NYSSMA coming up soon- so lots of practicing! But, Michael spends a lot of his time riding his bike & scooter, going to the beach, attending church & doing research on the computer. Sounds like a 10 year old to me!

Of course he's not fully recovered, but personally I couldn't be happier and appreciate every single gift/miracle. Every time he says something to me or we have a great adventure somewhere, I consider it a gift. I know not every parent is THIS lucky and so I count my blessings.

Not sure yet what we're going to try. But whatever it it, I'll be posting about it. Thanks again for reading about Michael's road to recovery!!! What a trip!

Update: 2009 & 5th Grade

2009-11-18T17:48:00.003-05:00

Hello everyone. I know I don't post here much anymore. I do most of my updates on Facebook, so look for me there.

Wanted to do an update on Michael currently. Of course, he's doing GREAT. We're still doing IV chelation with Dr. Imam. It's been a little over 3 years (with a few short breaks in between).

Michael's attending Middle School and is in a class with 15 kids. He has a shared aide. He's also in orchestra (violin) and drama club. Today we got his report card. (see picture). Amazing! I just can't believe my kid with autism is doing SO well. Taught me a big lesson. Sometimes your expectations are actually limitations. I never thought he would do this well and I was wrong. Thank god.

More updates and pictures soon!

Video from October 2009:

Singing in Musical, May 2009

2009-07-02T22:25:00.001-04:00

Recent Video of Michael

2009-06-16T13:14:00.000-04:00

Michael is pretending to do newscasts to the camera. I think he can see his reflection in the lens because he makes some silly faces. He's been watching Sports Night and using phrases from the show- like "we'll be right back."

"Perfect"

2009-06-13T13:23:00.003-04:00

The end of the school year is coming and I can't believe Michael is going to middle school this year. I think of all he has accomplished the last 2 years- it's amazing. I've also been reminded, time after time, that sometimes your EXPECTATIONS are really LIMITATIONS.

I've said things like "he'll never be out of a 6" or "he'll never go to college" and I was wrong. Another wrong prediction was "he can't play violin" and boy was I wrong, again.

Michael started playing last fall in school. It took a few weeks and then he got the hang of it. The kid LOVES to practice. He usually does about 100 minutes a week. Most times I don't have to remind him to play. It's all beginner stuff, but he gets better everyday.

A few weeks ago Michael participated in NYSSMA. That's a music competition where kids go in front of a judge and play or sing. They get graded. The best kids go to all-county or all-state. It's very important for serious musicians in New York State.

The school asked me if I wanted him to do NYSSMA and I thought YES! Back a million years ago, when I was in high school, I played piano and sang in the competition. I remember going to Riverhead HS and playing on a grand piano in the aud- scared out of my mind. Experiences like that build character :)

Anyway, Michael played his Level One solo and we got the results. He scored a PERFECT score! He even did scales and sight-reading. I'm flabbergasted. Never, never, never in my wildest dreams did I think MY son with autism would play the violin and get a perfect score in NYSSMA. Usually the words are "delayed" "special needs" "autistic" "handicapped"-- not "perfect". The amount of pride and joy in my heart cannot be measured.

HE accomplished this because of his hard work and dedication. I'm so happy he found something he loves.

This week Michael played 4 times in concerts. They did the 4th grade concert- two for the students and one for the parents (at night). He also played with all the strings in the school district. He played, waited with the other kids, followed directions, etc. The staff didn't even pay attention to him, in a way. They don't "worry" about him. Of course, I was a little nervous because he doesn't have an epi-pen with him in these situations and he's got a deadly peanut allergy. But, he just blends in.

The other kids are usually nice to him, but I do notice he keeps to himself a bit. I think a lot of times he doesn't know what to say or how to socialize with them. He's a lot more ease with 4 year olds then 9 year olds. But, hopefully that skill will come with time.

Michael came home from one of the concerts and said "I want to be a music teacher". LOL- I think this time I'll keep an open mind and believe that anything is possible.

Presidents on Parade

2009-03-20T12:25:00.005-04:00

Last Sunday we had the traditional St. Patrick's Day parade in my hometown of Rocky Point, New York. This was the first year Michael really got into it. We stood for about 2 hours watching marching bands, fire trucks and boy scouts. Of course I spent most of my time talking approximately 800 pictures and Michael stood by my side the whole time.

One photo is Michael with our US Congressman, Tim Bishop and NYS Assemblyman Marc Alessi. Marc sponsored a bill for vaccine exemptions and has been VERY supportive of our community. Congressman Bishop has been too. He also has a nephew with Aspergers (a form of autism).

Anyway, there was this funny moment when the Rocky Point Historical Society came marching down 25A. They had a couple dressed as Mr. & Mrs. Abraham Lincoln. Michael saw them and his eyes got really wide. He LOVES LOVES LOVES presidents right now. He gets about 10 books a week on presidents from the library and read them over and over. Right now he's learning about first ladies.

Michael points to the group and says "Look, it's someone dressed like Abe Lincoln!". I was laughing to myself thinking, "Most kids would rather see Derek Jeter or Brittany Spears. But, MY son's favorite people right now are the US Presidents".

Last month we visited Monticello in Virginia, Thomas Jefferson's home. I hope this summer to travel around the East Coast as much as possible and visit other president's homes, birth places and graves. There are probably some presidential libraries too along the way.

I'm excited to learn right along side Michael about US history. We really are sharing the experiences. I keep thinking more and more that someday he will go to college- something that I thought at one time was impossible. But, I was wrong-thankfully!

Playing at Church - Video

2009-03-11T01:27:00.001-04:00

Here is a video of Michael playing violin at church in front of about 25 people. So proud of him!!!!

After 2.5 years of Chelation

2009-02-07T14:50:00.007-05:00

(Photo is Michael
at the beach
in Virginia
December 2008)

After 2.5 years of chelation, Michael is on grade level academically, playing the violin, got a part in the drama club musical and can pretty much go anywhere without a problem. I'm so proud of him and so grateful for Dr. Imam and Nick- and everyone else at the office (Center for Advanced Medicine in Center Moriches).

There is so much LESS stress in my life right now. I don't worry about him running into the street anymore. I don't have to remind him to do his homework. We can eat in restaurants. I can go to a party and relax. Car rides are a breeze. He gets out of the bath, dries off and gets dressed all by himself. He can get his own food and drink now too. I get comments from people like "he's the best behaved kid here". MY KID? My kid with autism?

If you didn't know Michael when he was little- check out the videos on You Tube. But, just know that he was anti-social, non-verbal, very stimmy, and lower functioning then he is today.

Right now he's practicing violin in the other room. I didn't even have to ask or remind him. He just does it because he likes to. Yesterday, he was doing math problems on the computer and saying "math is fun". Goodness- I know that didn't come from ME. He has learned so much at school. Next month is the state Math exam and then the Science test. Unfortunately it takes MONTHS to get the results back. But, I know he'll do well. The best part is how is enjoys taking the tests. He even pretends he is a teacher and sets up a classroom at home- preparing the "pretend kids" for the big tests.

What's next? I don't know. He goes to Middle School next year- which is going to be a huge change, but he's excited to go. I'm not going to worry about it.

We're going to keep going with the chelation. We met with Dr. Imam last week and he thinks everything is going great and we should just continue.

As for the summer- who knows? We can't really afford camp, but I hope to spend a lot of time at the beach. When I was a kid, my mom took me to the beach a lot. We live 10 minutes from the North Shore (Long Island Sound) and 20 minutes from the Atlantic Ocean. There are beaches everywhere. Finally, we'll be able to enjoy them together. Michael went thru a long period, from about 3 years old to 7 years old, where he hated the beach. He didn't like the sand. He was scared of the ocean. Now, you can't keep him out of the water.

I love how adventurous he has become. He wants to visit Washington DC and the White House. He gets books from the library about all sorts of things and asks questions. I could probably take him to more concerts and finally a Broadway play-- and he would love that. I get frustrated that we have to stay here in NY and can't move back to Virginia. But, at least there are a lot of things to experience here.

Progress Report- Fall 2008

2008-11-19T11:10:00.006-05:00

Sorry I haven't been posting THAT much. After posting every day during the summer road trip, I was a little posted out. Plus, with Michael's progress- I keep losing track of all the new things he does and says. Isn't it great just to be at that point?

Anyway, Michael is still at Ridge Elementary School in a class with 15 students. He was in that class last year, but with only 12 kids. It's a full class this year.

Michael is now sharing his aide with another kid. Part of the reason is because he doesn't need her as much. The other reason is because the child could use the help. Longwood has been so helpful over the years, I didn't feel right being selfish and holding on to the aide like that. Plus, Michael was the one who didn't want her around so much. He would even say so at times. It's not that he didn't like her, because she does a great job and is very caring. I think it was more him trying to be independent.

Michael is now playing the violin. And I mean PLAYING. Honestly, I thought the instrument was never going to work. I played piano, flute and sax, but didn't know how to play a string instrument. So, I was worried that I couldn't help him. But, he is doing great. He plays everyday for at least 20 minutes. He's very good about it (just like his homework). He's reading music! Sometimes I pull the keyboard out and we play songs together. It's just so cool. I NEVER thought that would happen. I don't know what his band teacher thinks- but I think he's doing wonderfully! I CANNOT wait until his concert. THAT will be on YouTube for sure. LOL!

Michael has a new friend- the kid upstairs. They get along so well it's scary. "Jessie" is about 7 years old and moved here over the summer. They go to the after-school program (SCOPE) together. The cutest thing is when they see each other at home, each of them jumps up and down and yells the other's name. It's like they haven't seen each other in 20 years. LOL. Sometimes Jessie knocks on the door and asks if Michael can come upstairs. Jessie's Mom keeps saying to me "I wouldn't know Michael had autism if you didn't tell me". Well, he still has autism- but it's great to hear that. Last weekend we went to an Islanders Hockey Game. The boys had fun. I'm so happy for both of them- since they are only children. And I'm very grateful that Jessie's whole family is so accepting. Oh, and the boys went Trick or Treating this Halloween too (along with Paul).

The funniest thing happened the other day. I picked up Michael from SCOPE and he didn't want to leave until this one boy left. Michael was staring at this kid's Mother when she walked it. We had to follow them out. When we got to the door, the woman says to her son "get in the car Billy" (or whatever), but in a raspy voice. She sounded like Kathleen Turner after smoking 1000 cigarettes. Michael gets in our car and says "Billy's mother has kind of a weird voice". I was laughing so hard I couldn't drive.

I wasn't laughing at Billy's Mother. I just couldn't believe that Michael noticed it in the first place. And the way he said "kind of a weird voice". He didn't say that she sounded like a man. He used language that was more abstract. Which is awesome! Plus, I turned it into a whole exercise about why you shouldn't smoke. LOL.

I saw a report and Michael is on a 2nd grade level for Math and English. Which doesn't make a lot of sense to me, because he scored average or above average on his 3rd grade State Exams in both Math and English. I'll find out tonight- we have our yearly parent-teacher conference. I'm looking forward to it. I always have with these meetings. Maybe during pre-school I didn't, but I can't remember that far back. LOL. But, at Ridge they have always been so helpful with Michael, there is no fear there.

We're still going to Dr. Imam's for IV chelation. Everything is going well with that. Nothing new to report. We took 2 months off from chelation during the road trip. Michael was fine- but it's hard to say whether he was affected by NOT having chelation because we were on the road. But, overall- he was great. I don't want to stop the IV's until we know we have all the heavy metals out of him. We'll be doing a urine test this Saturday.

Summary: We are so lucky that Michael continues to do so well. Both his teachers and the SCOPE people say he's the most behaved kid in the class. He does his homework without having to remind him. He's playing violin now. He's continues to make friends. He's happy and social. He does continue to have some stims- like the weather and his "pretend kids"- but that's a lot better than touching the bushes (which he rarely does now). He's very independent- he brushes his own teeth, fixes his own meals, dresses himself, picks out his own clothes and always finds something to do (watching tv, reading, coloring, etc.) I notice a few times he stutters or need a second to form a sentence- but his use of words is amazing. I need to do another video update and post it.

Again, thanks for reading Michael's blog. I cannot say enough about the people at Ridge/Longwood School District and Dr. Imam's office. We are truly one of the lucky ones in the autism community.

Swimming Video

2008-09-27T18:26:00.001-04:00

I just uploaded a video from July. Michael was swimming with Ethan and Stan Kurtz in California. Ethan was once dx with autism, but is now recovered.

On a side note- Michael is doing great. I'll write some more updates soon.

Trip Blog

2008-07-11T00:56:00.002-04:00

To read about our Summer Road Trip please visit:

http://www.heerenroadtrip08.blogspot.com

Thanks,
Christine
currently in AZ

Summer Poetry

2008-06-19T21:24:00.001-04:00

You've got to see this. Michael did such a great job reading poetry and singing!

Conversations with Michael

2008-06-13T10:46:00.002-04:00

I call this video "Conversations with Michael". I wanted to show everyone how much his speech has improved. Notice how he comes up with new ideas- like how Michelle was a substitute for me on field day. I was not feeling well that day.

He's also doing some "silly talk" where he talks about Calliou or bad behaviors. I guess you can call it a verbal stim. He also does some stimming off the towel rack. I guess right now the stimming and the social piece are our biggest problems. Everything else is on track.

We leave in eight days! Holy cow. I can't believe the date is almost here. I'll be blogging the details of the trip here: http://www.heerenroadtrip08.blogspot.com. If you can't remember that, just come to this site, click on my profile and it will list the other blog. Thanks.

Video from the Rally

2008-06-07T19:29:00.000-04:00

You can see 5 other videos by visiting my YouTube page: http://www.youtube.com/watch?v=XreRnkigDCU

Green Our Vaccines

2008-06-05T17:12:00.009-04:00

Wow. What a crazy two days. Michael and I drove down to Washington DC on Tuesday and stayed with our friends Casey, Cara and Holly. Michael entertained the girls by guessing their ages and playing school.

We woke up the next morning praying for good weather. Both of us have a strong dislike for standing next to a tree with an umbrella in a thunderstorm. But when we arrived at the Washington Monument around 9:30am, the taxi pulled up and I found myself getting emotional. There were so many people I couldn't see the end of the line. There were thousands! The last rally had 400. This one had 10 times that amount. The first rally I ever attended had about 40.

This was the first rally for Michael. In the past I left him home so I could take pictures and video. It was hard to have to keep my eye on him, but he did VERY well. When we got our picture taken with Jenny McCarthy and Jim Carrey Michael had the biggest smile on his face. It was so cute.

After the rally we met with our congressman Tim Bishop. Michael almost fell asleep on the couch, but I spoke to the congressman about the rally and autism. He was great. The first thing he said was "sorry to hear about your mother". Near the end of our meeting there was a tornado watch and we weren't allowed to leave the building. Bishop's office gave us passes for the Capitol so we went to the see the House of Representatives. My first time. I was trying to explain to Michael what we were looking it- but how do you explain politics to an 8 year old? LOL

We finally got home around 1:30am. It was a LONG day. Michael said he had fun. I think he did. Plus, it was good practice for our roadtrip. I can't believe it's less than 3 weeks away.

The Common Crow

2008-05-29T18:48:00.005-04:00

Today Michael and I went on the Ridge Elementary 3rd Grade class trip to the Holtsville Ecology Center. It was the first time I saw him on the class trip with typical kids. He did great. It was also nice to spend some quality time with everyone- the teacher, aide and the students in his class. We even got to ride the big bus. Which of course made me a little car sick, but it was fun to live on the edge. Holy cow did the bus driver speed around. I didn't realize buses could break the law like that...

Anyway, we saw many different animals. Some very cool- like black bears and eagles. And some were... interesting- like the deers, cows, raccoon, ground hog, parakeets, and my favorite- "the common crow". That's what it said on the poor guy's cage. I just looked it up and this type of bird is sometimes called "common". But, who would want THAT title? And what's weird is when I walked up to his cage the crow walked to the front, stuck his beak in the fence and looked right at me.

Michael said his favorite part of the trip was the "duck poop". Gotta love it. We even walked around this big trail and Michael did great. He just loves being around kids. His whole face lights up. No wonder he loves school SO much. The kids are kind to him. and the staff are so loving and caring.

After the trip we went to one of our weekly chelation sessions. They are so effortless now. Michael spends most of the time on the laptop or drawing on a wipe erase board. Today he kept talking really loudly. He's starting to add things to certain conversations. It's kind of weird for me. Of course it's good. But, I'm not used to Michael completing my sentences. LOL.

In the next week we have a lot going on. We're going to Washington DC for the "Green our Vaccines" rally with Jenny McCarthy and Jim Carrey... and about 5000 members of the autism community. I'm SOOO excited that Michael can join me. I'm be taking a million pictures and will post some of them here. The rest will be on AutismRally.com. That's one of my websites that I put together to share information.

Spring Concert 2008

2008-05-21T20:54:00.002-04:00

In addition to the Yankee Game yesterday, Michael had his 3rd grade spring concert at school. Michael's in the blue striped sweater. If you remember the past videos- he barely sang. This year he did great. Check it out.

The Last Goodbye

2008-05-21T13:39:00.009-04:00

If you’ve been reading this blog since it started about 18 months ago, you know that I’m a huge Yankee fan. One of my dreams as a child was to be able to bring my OWN children to the Stadium, just like my parents did back in the 70’s. If you ask me where is my favorite place on earth to go, I would say “Yankee Stadium”. So, when I heard recently that they were building a new Yankee Stadium, it broke my heart. The old stadium is going to be destroyed, put down, killed, exterminated--- what ever horrible word you want to use. All I know is it’s going to be gone. So, last night was my last night at the “house that Ruth built”.

Michael, my roommate Michelle and I went to the 7pm game vs Baltimore. It rained ALL day. So the whole way into the city we didn’t know if the game was going to be rained out. But, we were willing to take that chance. It takes us about an hour and 15 min. without traffic to get to the Stadium.

I decided to take the Triboro Bridge (there are like 4 different ways to go) and didn’t know the exit off the Long Island Expressway (LIE). I yelled to the back of the car “Hey Michael- what exit do we take for the Triboro?”. Michael thinks for a second and says “24a” (or whatever the number is). He was absolutely correct (as usual).

By the time we got to our seats, the rain had stopped. We even started to see blue sky. Plus, we were lucky enough to be in a section that was covered- so no wet seats! Things were looking up.

The first inning Baltimore scored 6 runs. LOL.

I didn’t care THAT much if the Yanks won the game, because I was there to say goodbye to the Stadium. But 6 runs? Come on. Also, Derek Jeter got hit with a pitch and left the game. We left around the 8th inning. I took a final walk around the stadium to say goodbye. Michael didn’t want to hold my hand. He’s getting so independent.

I’m surprised he lasted that long. It was about 10pm. At one point Michael took the beach towel I brought to wipe off the seats and put over his head. He just didn’t seem to enjoy this game as much as the other two. But, I think part of that was where we were located. You couldn’t see the field that well. In the past we were high up and could see everything. It was also cold as heck. Probably around 40-45*F. I could see my breath! I could honestly say I’ve never seen my breath at Yankee Stadium. We must have broken a record because it seems like the coldest May night ever!

The highlight of the night for me was when Kevin Millar on the other team hit a homerun in our section. We all started yelling “Throw it back!” to the poor guy who caught the ball. After making a decision between keeping the baseball or living, the guy threw the ball back onto the field. My roommate, who is from Buffalo, was confused, “Why would you throw the ball back?”. I said “because it’s the right thing to do”.

That’s just one of the great traditions of Yankee Stadium. It’s like no other place on earth. I’m so happy that Michael and I could say “goodbye”, literally. When we were leaving Michael turned around and said “Goodbye Yankee Stadium”. I know he understands that there is a new park next store and this one will be gone, but he doesn’t understand the history of this place like I do. I’m just happy that I was able to take Michael to three games. It was something that I thought would never happen after the “autism kicked in”.

So, we’ll be grateful for what we have and look forward to new memories at the new Stadium.

Three Strikes and You're Out!

2008-05-16T13:13:00.003-04:00

We got some free tickets to the Mets game on May 10th. It was the official Autism Awareness Day, so I thought we would give it a try. Now, I'm a DIE HARD Yankee fan. But, I thought it would be nice for Michael to get to Shea before they bulldoze it. They are building a new stadium right next store.

After about 20 minutes Michael, Grandpa and I were ready to leave. Michael got into it alittle- routing for the other team- which was FINE with me :) After the game we drove through a Chinese neighborhood in Queens. There was one of those store where they sell things on the sidewalk and I commented that people were buying flowers. Michael said without hesitation "They are buying flowers for Mother's Day". WOW. Didn't expect him to say that. He just continues to amaze me.

Here are some pictures from that day: (and yes Michael got a haircut)

Say AHHHHHHHH!

2008-05-14T10:28:00.002-04:00

This morning we went to the pediatric dentist for a checkup and cleaning. This is an office that takes special needs and typical children. Kids with autism have SO many issues when it comes to tactile defensiveness- they don't like people touching their mouths. It took years to get a toothbrush into Michael's mouth.

Anyway, this dentist will only take ASD kids first thing in the morning- for many reasons. But, today his cleaning went so well, the dentist said Michael could be put with the other typical kids and not HAVE to come at 8:30am. I also remembered this time to bring Michael's fluoride free toothpaste! LOL. The staff didn't give me a hard time like in the past. I just don't like giving Michael fluoride because some people say it's poison, especially to kids who can't detox.

The dentist also took a copy of Evidence of Harm by David Kirby and said "this will be my spring reading". He's interested in learning about the mercury- autism connection.

So, overall- good appointment. Got to school on time. Michael did great. Who would have thought going to the dentist would be such a pleasurable experience?

Mother's Day

2008-05-09T23:44:00.010-04:00

Happy Mother's Day to all of the Moms out there.

Sunday is the first Mother's Day without my Mom, Joan who passed away in January from Pancreatic Cancer. In the last two weeks I found out one of the best friend's Dad has lung cancer and my ex-mother-in-law is getting checked for breast cancer. I also have a college friend who is currently going through chemo.

When you have a child with autism you think the whole word revolves around autism. But, it doesn't. You think that autism is the biggest problem in the world. But, it's not. You think there is "nothing worse" than autism. But that's not true. When you find out your child has autism you think there is nothing you can do. But you are wrong.

There are so many mothers out there who amaze me. My son would not be where he is today without the help of many people. From Jo Pike in South Carolina who basically introduced biomedical treatments to me, to Mary from CA who helped me start the diet, to Julia Berle, also from CA, who inspired me to start chelation..... These Moms I will never forget.

But, there are other "mothers" who have helped my son, like his past teachers and therapists. One in particular is Jackie Rosenfeld. She was Michael's teacher from Kindergarden to 2nd grade (three years). When I first talked to Jackie on the phone I was nervous that she was very strict with ABA and wouldn't be flexible enough for Michael. Then a week later when I met her at the school I knew instantly that this woman knew what she was doing.

At 5 years old Michael entered the school district with very little skills. He wasn't potty trained. Could barely do ABA. Said about 30 words. Didn't want to play with other children. He would spin cars all day long. At one point he got so obsessed with tracks we had to take the cars and trains away- so then he started visually stimming off lines. The lines on his pants, the lines on his shoes. Holy Cow- we couldn't stop him.

I had a conversation with Jackie that first year. She said "one day we're going to lose him". What she meant was he was going to one day move out of the autism program and be mainstreamed. I laughed "no way". Honestly, I didn't believe a word she said. Jackie responded "trust me- one day he'll be gone and we'll miss him".

I didn't spend a lot of time obsessing over a future so far ahead it was impossible to control. But, I didn't think Michael would leave the autism program, graduate high school, get married or have children (isn't that the list?).

That first year a new student joined the class and Michael started picking up bad behaviors. The stimming was getting worse. So, Michael's teacher Jackie set up a program. She got a timer and said to Michael "Ok- you have 10 minutes to play with the cars and then you are finished". Then it was 8 minutes, then 6, then 4, then 2.... Finally, Michael learned how to control his stimming. It was a MIRACLE.

All I had to say to him at home was "ding, ding, ding- cars are finished". Then eventually "cars are finished". Now Michael started paying attention. He wanted to play with other kids. He went to parties and did more than put his face to the carpet and line up cars. He started singing in concerts and playing basketball. A new world opened up to him.

At the same time, Michael started learning how to read, write and do math. Slowly the words started to form sentences. Jackie used to say that Michael was a "sponge" and she was right. This kid would pick up things so quickly they would have to change his program. What took some kids a week to learn, Michael would pick up in 10 minutes.

As the years went on Michael started reading books, writing poems, pretending to be a teacher. Best of all- HE LOVES SCHOOL. He loves learning. He loves reading. He is happy with himself.

OMG- what else can a mother ask for? While we were working on cleaning up his gut, giving his brain the ability to process, and DETOXING his injured body- Jackie and the staff at his school were filling in the gaps. They came to his birthday parties. They attended my Mother's wake. They are basically family. These women have done more for me and my son then some of my own family members.

Last September the autism program "lost" Michael to a higher functioning special ed class. Michael is no longer in a class with ASD children. His classmates have ADHD and reading delays- but they are verbal. Today I stopped by the classroom and saw my son. He was sitting in his seat, following along by himself, reading the spelling words, participating.... If a stranger walked in they wouldn't even know my son had autism.

That would have NEVER happened if it wasn't for a school district that cared and put the money into the program. I know the skill level of most of the aides in school districts in this area- and the aides that worked in Jackie's class had the most experience out of all of them. I was an aide many years ago, so I know it's not an easy job. But, personally, I have never experienced anything but love, kindness and respect from my son's teachers and therapists.

I could remember days when Jackie and Gina (the main assistant in the classroom) would see me after school and tell me a story about something amazing Michael did that in the classroom- and the three of us would just cry. We were so happy. I never thought that a teacher could care THAT much about her kids. Jackie used to say that she, along with Gina and Kat (the psychologist) wanted to adopt Michael if anything happened to me.

Never in my wildest dreams did I ever think that my disabled son would contribute so much. It always hurt my heart to think that MY child would be a burden on the school district. Everyone would have to work around him. Everyone would have to sacrifice for him. He would cost sooooo much money. When Michael was 2.5 years old the district said "do you want home services in addition to preschool?" and I said no, because I didn't want to take too much. I wanted to wait and see if he needed it.

But, I was wrong. Because Michael was doing so well they started mainstreaming him. I had parents coming up to ME saying "Thank you for letting my typical child work with your son." These parents talked about how Michael taught their children patience and acceptance. This would have never happened if Michael was not at the point where he could be mainstreamed. I owe that to many people- including the staff at his school.

So many times in this blog and in life in general I'm talking about the biomedical interventions we do with Michael. They have been a HUGE part of his life and progress. And it may seem that I kinda slight the behavior side. I don't mean to. It's just that this blog was started right when we started chelation- so the purpose was more about biomedical treatments and sharing the experience with other parents. Just like Julia Berle shared her recovery story about her son Baxter, I wanted to document Michael's treatments.

But, the reality is- Michael would NOT be where he is today without Ridge Elementary and the Longwood School District. I would not have been able to organize conferences, travel to Albany to help pass laws, take pictures of events in Washington DC, talk to other parents for hours about treatments, go to conferences in Chicago, produce educational videos for autism schools, etc. if I had to fight my district for services. I was able to channel my energy into something positive. I was able to spend time researching biomedical treatments, instead of reading all the legal crap about CSE's and IEP's. I was able to take my kid to the park or a Yankee Game and not be stressed about his school.

Michael LOVES school so much that he cries if he misses the bus or is sick and can't go. He talks about his 3rd grade teacher, Mrs. Williamson, and his classmates all the time. He talks about graduating high school, going to Cortland College, becoming a teacher and just today he told me he was going to have "four" kids. (last week it was three).

I don't care if Michael never gets any better or recovers- HE IS A MIRACLE! And everyone involved- from his school district to Dr. Imam's office where he gets chelation- are miracle workers. I will always be grateful. I don't need flowers or candy on Mother's Day because I truly have the best gift in the world--- a happy child.

THANK YOU! THANK YOU! THANK YOU!

Sunday is Mother's Day, so I celebrate not only the Moms, but the women in my son's life... You know who you are.

My Mom was always so happy with Michael's progress and his teachers. There was a point where my Mom was so sick she couldn't get out of bed. I remember one day her laying there and saying to me "I'm worried about Michael after I'm gone". I said "don't worry Mom- he's in good hands". I would have never said that if it wasn't true.

Thank Goodness For Spring

2008-05-08T15:54:00.005-04:00

WOW- what a long winter.

But, it's spring in NY! And with the arrival of spring comes BASEBALL. We are planning to go to games both at Yankee Stadium and Shea (where the Mets play). Michael's so interested in the fact that the two places are being demolished and new stadiums are being build.

Michael started playing on a Little League team a few weeks ago. It's a challenger league- basically about 12 kids with disabilities- mostly autism. It really is a lot more fun that I thought it would be. They got the coolest uniforms. Michael is so excited too. And I don't MAKE him that way- LOL. Just got lucky. I love baseball and played when I was younger. It's so much fun to see Michael out there.

Last week we had the big kick-off Sunday to the season. The kids marched around the track along with all of the other baseball and softball teams. Michael had such a good time. Here he is walking with 2 of his teammates- waving at the crowd. He also met the Supervisor of Brookhaven Town, Brian Foley. For those of you not from this area, our town gov't covers about 1/2 a million people. Supervisor Foley is a great guy and I've taken pictures for him in the past. He came right up to us and spoke to Michael. Of course Michael had no idea who he was, but it was nice to guy a picture of the two of them.

Anyway, Chelation is going great. Now that the weather is better, he's playing outside with the neighborhood kids. They are a little wild and not the best roll models, but it's nice to see him playing kickball and baseball. Yesterday he decided to be the coach when they were playing kickball. I try to limit his time with these kids, because they do beat the crap out of each other most of the time. But, the poor kid is an only child and LOVES to play outside. It's funny because I trust him more than the other kids, and they are "typical".

I can't even list all the things that he is doing now. He does his homework every night by himself. Last night I wasn't feeling well and I handed him the phone. He talked to Michelle and they had a real conversation. The only thing I was worried about was him saying "mommy isn't feeling well. Her head hurts. She laying down". I grabbed the phone because I didn't want Michelle to think I was passed out on the kitchen floor.

The other day Michael said to me (out of no where) "I was loving you all day long". I NEVER heard him say that before.

It's like this whole new world has opened. I'm explaining things to him like babies, death, baseball, autism, etc. I decided to take Michael to the "Green our Vaccines" rally in DC. It's on June 4th and Jenny McCarthy and Jim Carrey are heading it up. As you know, Michael has already met Jenny. There might be around 5000 people there. It will be largest autism rally EVER! After the event on June 4th, I'll post my photos on AutismRally.com. That's a website that I put together.

Happy Spring everyone and thanks for reading our blog. Doesn't Michael look SOOO happy in this picture?

Melons

2008-04-24T23:42:00.003-04:00

Ok- this may not seem like a big deal to many of you. But, about a year ago Michael only ate about 10 foods. If you gave him different things- he would pretty much gag and throw up. So, yesterday I was very impressed that he ate watermelon, cantaloupe and honey dew for the first time. We went to a Chinese Buffet with my Dad and there wasn't much to eat. He also had home fries (aka french fries) and carrots. He also drank water out of a glass with ice in it. No gagging at all!

Then today Michael went to the mailboxes and got the mail- all by himself. We live in an apartment and the mail is in a small box that needs a key. It's not THAT easy to open and close. He was so proud of himself. A few years back Michael and I walked to the mailboxes and he took off. That was one of the scariest days of my life. He was running down the center of the street and almost got hit by 2 cars. So, I thought it was ironic that Michael walked down to the boxes and got the mail. Sometimes I think he's a different kid.

It will be interesting to see how he is this summer when we stop the IV's. I'm still going to give him glutathione and transdermal EDTA, and of course all his supplements. But, he's been getting the IV's for about 1 1/2 years now and doing great. I guess we won't know until we do it.

No school this week. Michael has been fine, but a little lonely. He's been asking for an 8 year old brother or sister. I guess we all have dreams.

Another trip to NYC

2008-04-21T12:35:00.018-04:00

Yesterday Michael and I drove into NYC to see They Might Be Giants. It's our 3rd time seeing the band. Honestly, they are one of my favorite bands and 20 years ago in college I used to play their RECORDS (not cd's) at the college radio station (WSUC-FM). The last 5 years they have come up with a couple of children's cd's- which are really fun. Michael loves them. It's always a special treat when we go together to a concert. Something I would have never dreamed of 20 years ago, or even 6 years ago when Michael's autism "kicked in".

Anyway, Michael was great- dancing around and sometimes singing to the music. Also, it was good practice for our 2 month roadtrip this summer. Oh, I learned an important lesson too. When you park your car in a garage and hide your EasyPass, it doesn't work unless you put it on the window. I went through the tunnel and started freaking out cause I couldn't find my EasyPass. I will NOT do that again. I need to learn to trust. Mostly because my memory is so bad anytime I hide something, I can't find it. Thank goodness Michael has a photographic memory. A lot of times I tell him the address of where we are going, just incase I need that information later in the trip. It's come in handy a few times.

I also have some photos from the Hockey game we went to last month. It was an Islanders/Flyers game. First time Michael has ever seen hockey. Not my favorite sport- but easy to follow. Michael enjoyed himself- that is what's important. Of course I forgot the tickets at home and had to buy new ones when we got there (see a pattern?). Michael remembered that fact when I couldn't find the They Might Be Giants tickets on Saturday. Thankfully I got them thru Ticketmaster and used a credit card, so when we got to the box office they just printed new tickets for us.

Our tickets for the May 20th Yankee game are taped to the side of the fridge right now. If I lose those, it will be a hat trick for me (see I know a little about hockey). At this rate, I'm going to be a disaster on the roadtrip. I think I need to make a huge list of everything and pack REALLY well. That is going to be a challenge- but one I'm up for.

I'm still going to blog while on the trip. I'll post pictures and video along the way. As far as chelation I plan on bringing some transdermal EDTA and glutathione with us, because he won't be getting IV's for 9 weeks. I'm going to keep the same supplements for the most part too. One trick is keeping certain things cool. So, I'm bringing this HUGE Igloo cooler. If you keep in close, everything stays cold for days. At least Michael is eating chicken in restaurants now- so I don't have to worry as much about carrying food with us, so we'll just have to worry about the meds/supplements.

As far as the IV's lately, everything is fine. Pretty uneventful. Oh, update on the whole "ingredients in the uterus" thing. Michael told me I needed more babies and I told him maybe he could buy a baby at Wal-Mart (it was a joke). But, of course he took it seriously and said he would pick up the ingredients there for me. Then I explained to him all the bad things about having a sibling- like you have to share your mommy and there is less money to do fun things, etc. I'm just saying ANYTHING to make him not want a sibling (cause it ain't gunna happen anytime soon). Our neighbor had a baby last week- so I think that is why Michael has been thinking about it. I should just have him sit in the room with the crying baby for 10 minutes and he'll change his mind.

Vacation this week- no school. Our big event is baseball practice tomorrow night for Michael's challenger team. I'm going to take some pictures and post them. I forgot my camera last week (big surprise). I'm glad he's getting into baseball- again something I never thought he would do.

OK- that's it for now. Thanks everyone for reading my blog. Remember you can leave comments now, if you wish.

How Long Did I Bake?

2008-04-11T14:56:00.005-04:00

Last weekend Michael and I drove a couple of hours west to NJ/PA to visit our cousins and attend the DAN! Conference. Michael was so great on the trip. Couldn't ask for anything more. He was so well behaved.

Some of the highlights were:

1. We met spokesperson Jenny McCarthy
2. Michael was playing with our cousin's pets (dog and cat)
3. Michael asked "where does cousin Lisa live?"
4. When my cousin Steve asked Michael "Do you have homework?" Michael said
"I only have homework Monday through Thursday when there is school".
5. Before chelation Michael asked "Why are we going to chelation on Thursday instead of Friday?"
6. At chelation he was playing with his "girlfriend" Juliet. He's done that before, but this time he was making up these games with some balloons that were left in the office.
7. At the conference Michael tried gluten/casein free bagels, waffles, english muffins and bread. He's never eaten waffles or english muffins before.
8. At brunch on Sunday he was dancing around the restaurant. There was a live band. He was so cute- I wish I had video of it.

I'm noticing Michael has started to ask "WH" questions. That means why, what, where, how, etc. questions? The other day he actually asked "how long did I bake in your uterus?". Then I explained to him how babies are born. The conversation grew and I ended up asking him "do you know what autism is?". He's heard the word "autism" a million times. He didn't know. So, I explained it to him and told him how lots of kids have autism. And lots of people are on special diets- even me. I've been a vegetarian for over 20 years.

I didn't think we would have that conversation so soon. But, he's really starting to understand things and ask questions. He's also asking to go visit his Grandmother Joan's gravesite. I think we're going to go in about two weeks, when he has vacation.

BTW- Michael was dx with mild-moderate AUTISM, not PDD-NOS or Aspergers. But, full-blown Autism. I'll have to scan the paperwork and post it on the site.

Thanks and Happy Spring everyone!

Road Trip Practice- NYC

2008-03-25T12:41:00.005-04:00

A few days ago a friend from England called and said they were staying in NYC and wanted Michael and I to come for a visit. So, we took the Long Island Railroad into Manhattan. The train takes about 90 minutes.

The last time I remember taking the train in the city was back when Michael was about 20 months old. It was July of 2001. Of course I had the wonderful idea to bring the big stroller. Which of course worked wonderfully on the subway. I had to carry the stoller and Michael up 3 different flights of stairs.

After arriving at the south end of the island, I refused to go back on the subway, so we walked about 40 blocks north to Times Square, in the rain. It took me years before I tried that again- taking the train in with Michael. One or twice we drove for events. But, I was afraid to take the train. So many things could go wrong- power outage, late trains, violence, falling through the gap and the dreaded terrorist attack. I just didn't want to take the chance.... until this past Sunday.

Michael LOVED the train. He was so well behaved. Sometimes it's funny because he's easier to travel with then some adults we know. Michael stared out the window- trying to figure out what town we were in. He would announce out loud every time we came into a station "We're in Brentwood!". I also noticed him saying out loud the names of major roads. He goes online all the time and looks at Google Earth- so it didn't surprise me that he knew a lot of landmarks.

Anyway, Michael did great and played with the kids we were hanging out with. Once in a while I could tell he got a little ansy and started his "banging" with his hand on the seat. He does that for attention, I guess. I have to make sure when we go places that he is well fed and entertained. When we are on the train or in the car it's not really a problem.

I call this post "Road Trip Practice" because Michael and I are driving cross country this summer. Last weekend I kept saying to Michael "we're practicing for our road trip". It actually worked and helped him focus (and behave). We'll be going into NYC again next month to see They Might Be Giants. It will be the 3rd time we'll see them in concert. I'm very excited.

We also have our first hockey game on Saturday- the Islanders! They play about 40-60 min. away. There is a group of people from the autism community going. I'm excited about that too and will take LOTS of photos.

Happy Spring Everyone!

"I Love It"

2008-03-16T22:40:00.016-04:00

Wow- what a weekend. Michael said and did so many new things. I hope I remember everything.

1. Saturday afternoon we went on Michael's first Easter egg hunt. Michael saw a poster at school about it and asked me if we could go to the event at the Ridge Park. There wasn't even a flyer in his backpack. He even reminded me to bring my camera. I think that was on the poster too.

After the hunt we got in the car and I said to Michael. "I was thinking we should buy you a special light so you can read in the car at night". Michael said "that's a great idea Mommy". I never heard him say that before.

2. Chelation- after the egg hunt we go to Dr. Imam's in Center Moriches. Nick, the nurse, is putting the IV in his arm and Michael says "I love it". He was actually talking about the IV.

3. Half way through Michael asks for cookies. I told him after he eats his lunch (gluten/casein/soy/nut free bread and meat) he could have some cookies. His response is, "Mommy, I don't like your rules". Again, never heard that before.

4. After his session Michael asked to go into the HBOT. HBOT is a hyperbaric oxygen chamber. Many children with autism use this type of therapy. Basically, it repairs brain cells. Nick was nice enough to put him in it for a few minutes. Michael went right in with no fear. As the pressure went higher, his ears hurt (which I expected). When he got out I asked him if his ears hurt and he said yes. But, he also said he wanted to do it again. I was just amazed that he wanted to go in it in the first place.

5. Saturday night I told Michael to tell our roommate Michelle thanks for baking his bread all day. He goes up to Michelle and says "thanks for making the bread. You are the number one champion". Again... never heard him say that. I was in the next room laughing on the floor. Michael runs in and says "I love laughing".

6. Sunday we go to church. I'm officiating the service and up on the alter. There is a segment where people light candles and share their "joys and sorrows". Michael goes up to the front. I join him. He lights a candle (he's done this before with me). Then he grabs the mic and starts talking. I say "Michael-say what you are happy about". He says something like "yesterday I went on an easter egg hunt and then at chelation I went into the chamber". I had to explain to the crowd what he meant. But then I lit a candle and said "My son just said his own joy for the first time!".

7. After church we had a meeting my accountant in her office. For two hours Michael played nicely and we got our work done. Also, I didn't know how to get to the office in Islip, so Michael told me what exits to take- he's memorized a lot of the roads and exits off the Long Island Expressway.

These were just some of the amazing things that happened over two days (that I could remember). We also went to this puppy store after church and Michael didn't freak out. He doesn't like dogs very much- which breaks my heart. But, he's getting better. I think he hates when they lick him. It's a sensory thing. But he hung out with me while I held the little golden retriever puppy for 20 minutes.

Looking forward to the next few weeks. We're going to our first Islanders Professional Hockey game soon! Making exciting things to come. Thanks for sharing the joys!

Top of the Mornin' to You!

2008-03-10T16:53:00.007-04:00

Sunday was the annual St. Patrick's Day Parade in my home town of Rocky Point, NY. In the last couple of months I've been working on geneology stuff and just found out that I'm part Irish. So, this year was special, because I always looked at it as an outsider. I've even marched in the Parade. In 1st grade, 6th grade, 8th-12th grade and when I was about 22 years old. I have to find the photo, because no one believes me. But, when I was 22 I worked for my local bowling alley and I was "BIF" the bowling bug in the parade that year. I wore this big, green costume- which basically scared all the children. But, it was fun. So, the parade and I have a little bit of a history.

Of course, I took Michael when he was little and then we stopped going- probably from 3-6 years old. That was the bad period for most things. It's nice to get back to having fun! Here are some pictures of Michael at this year's event. This one Michael pulled down his hat because he couldn't stand the cold. It was about 40*. That's another thing I've noticed. He used to never care about being too hot or too cold.

Another cool thing is before we went to the parade, we attended our church in Jamesport. After the service, we had our yearly budget meeting. Michael played outside with 4 or 5 other kids the whole time. I just checked on him once in a while. In the past MIchael would run right into traffic.

As for as chelation, everything is going well. We collected urine this weekend for another challenge test. Every couple of months we test of metals in his pee. We'll have the results in a week or two.

We'll be starting baseball soon, really looking forward to it. I bought Michael and I gloves so we can practice- just waiting until it gets warmer than 40*.

2 + 2 = 4

2008-03-06T20:46:00.004-05:00

Well, Michael came up to me tonight and wanted me to write a new post in his blog.

I'm going to let Michael type what he wants to say. Here we go:

"I did good on my math test. I did a great job!"

Back to Christine here.... Michael took his 3rd grade New York State Math test today and yesterday. I saw his teacher at an event at school tonight and she said Michael did a wonderful job. We won't have the final results until the end of the school year, but she said today he only got 1 wrong on the test. She also mentioned that Michael will probably have the highest grade in the class. She was very proud of him and couldn't stop smiling when she was talking about it.

I will admit that Michael is now officially better in math than me. That's not saying too much. But, it's true.

I'll have more to write later. It's been a huge news day today- with a press conference about vaccinations and autism. I'll tell you more about it soon.

Thanks and take care everyone.

February 2008

2008-02-11T15:12:00.003-05:00

Here is the latest video of Michael. The first clip he is reading a book, the second clip he's telling me that he wants to sit on the bed, the last clip he's singing "I never go to work" by They Might Be Giants.

Photographs

2008-01-17T19:34:00.000-05:00

Michael grabbed my Blackberry the other day and took a bunch of pictures. I wanted to post them here. I have additional photos Michael took in NYC a few months ago. Once I find those I'll post those also. That bunch I consider his first official pictures. They are really good too. Which is surprising, but not THAT surprising....

The New Year

2008-01-15T15:31:00.000-05:00

Well, it's 2008 and I'm glad to say goodbye to 2007. Really other than Michael doing so well, it was a hard year. My mom passed away on January 6th after 7 months of suffering from pancreatic cancer. I also organized my last autism conference (at least for a while) in October. My new focus is on Michael's education and our Road Trip this summer. He took the New York State ELA (English Language Arts) test last week. It was the same days as my Mom's wake. Good timing huh? Michael's teacher said he did pretty well, except for some behavior problems. I think that's understandable. A lot has been going on. Here is a summary:

December 30th my Mom goes into St. Charles Hospital in Port Jefferson. They put her in the hospice wing. Hospice is for terminal patients. It was VERY hard being there. My family took turns staying with my Mom. Michael even came about every other day. Thank goodness they had a lounge, so we hung out watching tv and playing with the computer. Michael didn't like going into my Mom's room (honestly neither did I). The look on his face was between confusion and horror. My Mom was about 60 pounds or so and looked nothing like usual self. Michael kept saying "we have to be quiet because the sick people are trying to sleep".

January 6th Michael and I go to St. Charles around 3pm. We went to check on my mother around 5:15pm and she wasn't breathing. The nurse came in and said that my mother had passed. Michael's first reaction was to add the day of death on my Reunion Geneology program on my laptop. His second reaction was to say "now Grandpa can sell Grandma's car". I found that funny, since my Mom hadn't driven in about 3-4 months. But, it was right.

January 8th Michael goes to his Grandparent's home and says "Grandma's not here because she is in heaven".

January 9th the wake begins at the funeral home in Miller Place, NY. My roommate took Michael into the room beforehand, so he could see the body. He poked my Mom and said "Grandma's dead".

January 10th I found Michael in the basement of the funeral home with about 20 other children. He had them all sitting on the floor listening to him reading a book. He was playing school. It was such a sight.

January 11th we had the mass and burial. Michael did well overall. It's hard enough for ME to sit through an hour long Catholic mass. After the burial we went out to eat at a local restaurant. No problems- Michael went with the flow. I know he was a little off at school because of the constant change in schedual, but overall he was great. So many people (family & friends) said Michael looked great. A couple even said "I would have never guessed he had autism if you didn't tell me."

We didn't miss any chelation with everything going on. Also, Michael has been eating more and more new foods. I still can't get more fruits and veggies- but at least he's trying new things. The good stuff will happen eventually. Michael also has gained about 4 pounds in the last 2 months. He gained 4 pounds in the 12 months before that. So, we were surprised by his weight gain. He also went from a 7 slim to a size 10 in pants.

Another thing I wanted to mention is that I think it helped to read some books about death BEFORE my Mom passed. Plus, we talk about it everyday. We told Michael that he can talk to Grandma, but she can't talk back. So, sometimes we catch him talking to her out loud.

Thanks to everyone who posted on my Mom's guestbook on the Newsday website. I think it will help my Dad to see caring words from people all around the world. Here is a picture of my mom and her three grandchildren taken in September 2007 at the beach.

Happy Holidays

2007-12-27T16:02:00.000-05:00

A few quick things:

Here is a video of Michael during his most recent Holiday concert at school. This is the 4th year he sang in the holiday concert. The first year he sang about 15 seconds. The second year- 30 seconds. Last year- about 1 minute. And this year he sang for about 1/2 of the show (about 10-15 min). I didn't post the whole concert on the video- but I just wanted to give you all an idea of how he did. Also notice the kids from his class. He blends in pretty well. I also wanted to mention that Michael is a little out of it because his nose was running and he didn't have a tissue.

I changed the comment preferences on this blog- so now people can post comments. Needless to say if anyone posts anything negative the comments will be deleted.

Also, Michael and I downloaded a bunch of footage and will be posting more Youtube videos soon.

Take care,
Christine

Chelation Update

2007-12-16T13:26:00.000-05:00

Well, we have been doing IV chelation with Dr. Imam & Nick since Aug. of 2006 (about 16 months). Michael is still showing incredible progress. You can read this blog in date order to get the whole story (start with Oct. of 2006).

I did a urine test last week and got the results a few days ago. I thought the levels of chelation were different than the challenge levels, but Nick told me Friday that because Michael has been chelating for so long- the levels would be the same, whether or not we are doing a challenge. In the past the challenge levels were higher. Anyway, long story short- it just means that the metal test can be better compared to the one done 4 weeks ago, because the amount of chelation given was the same. The only difference is that last week we took out the DMPS- one of the 4 things he gets.

Here are the tests results. They are black and white because the results were faxed from the lab to the doctor on Friday. As you can see Michael "dumped" or got rid of less metals than 4 weeks ago. It could be because we got rid of the DMPS or because he just didn't have the metals in him. I also suspect that he must be getting rid of metals via poop. People can also detox through hair and sweat. So, unless we test all the different ways, which can be expensive, we'll just do the urine every 2 months. I did the test last week because I wanted to see a non-challenge day (not knowing beforehand the levels were the same). But, it did show us a test without DMPS- which is interesting in itself.

I'm still happy with the results of the IV's (chelation, glutathione and some other stuff I don't remember how to spell). I plan on doing the IV's until June. I also wanted to mention that Michael's yeast problem has gotten under control. We changed probiotics, added Yeast Fend from Vitamin Shoppe and have been giving him the Nystatin once a day. We noticed when we take away the Nystatin some problems come back (smelly farting). So, we make sure to give it to him every morning with his supplements.

I've also been giving Michael some gluten & dairy. Just little amounts about once or twice a month. Yesterday he wanted goldfish crackers and ate about 20 of them. He started to get more stimmy. When he ate cake in the past- I didn't see a change. But then, he's always at a birthday party- which is crazy to begin with. Well, we're not doing the goldfish again. Not worth it. He has gluten/casein free crackers and pretzels now anyway. They should be good enough.

I Think He's Going To Be A Teacher

2007-12-16T13:07:00.000-05:00

Today is one of those cold, rainy, stay-at-home Sundays. I'm trying to get some editing done, but Michael keeps wanting me to do things with him (imagine that?). He got a bunch of notebooks and made tests up for me. He handed me the notebook and started asking me questions. He made up spelling words and everything. I think he got the format from the practice exams they do in school. Michael is going to be taking the NY State tests in Language Arts (English) and Math.

Last summer when we were finalizing Michael's IEP (education plan) the school didn't want him to take the state tests. It was one of the few times I had to stand up and say "I think Michael can do it". I said I didn't care if he got a "0". The main reason I wanted him to take the test was because his whole class was going to be preparing for these tests specifically. What would Michael do in that time? Be sitting in the corner finger painting?

I believe the state tests for 3rd graders are around March. I think his teacher is doing a great job preparing him. It was pretty amazing how he handed me the test and gave me instructions. He really sounded like a teacher. "Ok, now I'm going to read off the words and you write them down". At one point I wrote a capitol "C" instead of lower case and he yelled "lower case" and pointed to it. Holy moly the kid is a perfectionist. I got all the answers correct, but Michael only gave me grades like 50 or 10. I think it's done on a point system or something, because it didn't make sense to me. I'm really looking forward to the tests next year.

Tuck Me In

2007-12-14T12:08:00.000-05:00

To give you a little history, Michael used to be a horrible sleeper. It took him 18 months to sleep a straight 8 hours. I'm not exaggerating. Then at 3.5 yrs old he started sleeping through the night on a more regular basis. At the same time we started him on his new diet (gluten/casein/soy/nut free). Around 5 years ago Michael got into a good schedule- bath 6pm, dinner 7pm then bed at 9pm. I used to lay with him for about an hour, watch TV and wait for him to fall asleep.

About a year ago I told Michael he had to go to sleep by himself. He took it pretty well. Now, at age 8, he comes in the living room every night at exactly 9pm and says "Mommy can you tuck me in?". We went from Directv to Cable/DVR's recently, so I don't have cable in the bedroom anymore. I hooked up a DVD player, so Michael watches a video before he goes to sleep. I used to set up the TV/DVD player and throw the blanket over him each night. But now he sets up the DVD himself and has everything ready beforehand. Very admirable.

A couple of weeks ago I had to have a talk with Michael about death because my mother is dying from pancreatic cancer. I think I wrote about it in another post. Anyway, we started doing this thing where I lay with him and we have a little talk. It's so weird because for the longest time Michael couldn't understand anything abstract. You really couldn't have a conversation with him. It's amazing to see the look on his face when I say certain things. It's like his brain is trying to process everything and then find the language to express what he wants to say. He's getting better at it too.

Another thing he is getting better at is talking about death. We were driving in the snow yesterday and Michael kept screaming "we're going to die, we're going to die". I then tried to give him a talk about positive thinking. Wish I had that one on tape. But, he's been talking about it more- which is ok. I bring it up too. He said the other day that I have to live to be 105, because he's going to die at 85. We are 30 years apart though so I don't know how that will work- hey- what am I worried about 105? Ha. But, I think it's good that he talks about it- even if it's at inappropriate times. Last week at chelation Nick was taking the needle out and Michael said "I'm dying". I think this is just the beginning. Of course I try not to make him feel bad about saying these inappropriate things. Darn, I did it as a child too. I once asked my father's friend "Why is your name Mr. Green if you are black?".

Remember last week we stopped the DMPS? I haven't seen a huge change, but Michael has been a little more defiant. God only knows what that is from. I learned today that there is a new kid in his class with behavior problems. That doesn't help the situation- Michael feeds off of kids getting in trouble. I think it's going to be a long winter. With everything going on with my family I've got to find productive things for us to do during these cold months. I think it's already snowed more this year that all of last winter. I do miss living in Virginia Beach. The winters there were about 2-3 months, not 5-6 months. And you could still do things outside most of the time.

I'm very grateful that we are planning our Road Trip next summer. I think that is going to be the key keeping me sane through the cold weather. Well, that's assuming that I'm sane now- lol.

Today we go back to Dr. Imam's for chelation. It's so nice to not have to worry about it. I did a urine test last weekend because I wanted to see the results from a non-challenge day. A "challenge" is when you give Michael a certain amount of chelation and collect his urine for 12 hours. Then you send it off to a lab (Doctor's Data) and they analyze it for heavy metals- like lead, mercury, arsenic, etc. We might get the results back today. Last week was a normal dose (lower than the challenge dose) AND we stopped the DMPS (different than the last urine test). I'll post it there when I get it.

By the way, Michael has been asking for Goldfish crackers.

My Little GPS

2007-12-06T13:57:00.001-05:00

I have a new nickname for Michael "My Little GPS". He loves Google Earth and Maps lately. He memorized all the exits off the Long Island Expressway (LIE). Whenever we go somewhere, he gives me a route. Perfect skill for a kid who is going on a x-country road trip next summer.

Anyway, he's made these signs all over the apartment. He gave every room an exit number. I like this one that says "Backyard". He makes these up and cuts them out himself. He's very independent like that.

Here he made a Behavior Chart for ME! They have one in his classroom. He just loves when kids get in trouble (we're working on that). One of his favorite things is to give me warnings. Like if I try to wet his bedhead hair he screams NO and gives me a check. The really funny part is the punishment he picked out. 15 minutes off my email. At school they get 15 off recess.

Baby It's Cold Outside- Kinda

2007-11-26T00:05:00.000-05:00

This November has been very weird. The peak for the leaves changing color was about 3-4 weeks late. We went over to my Sister's house for Thanksgiving and I took this picture of Michael in the backyard. It was also 60* that day.

A few days later, it got down to about 35* at night. Ok- I believe you- winter is almost here. It's going to be a long winter too. Thankfully Michael has been obsessed with Map Quest and Google Earth- so he keeps pretty busy looking things up. He is really getting to know ALL the roads on Long Island. Autism can be a pretty cool thing sometimes. :)

Tomorrow Michael is back at school. Most people hate Mondays, but I really like them. I usually shoot photos/video on the weekend- so Mondays are usually my day of rest. I actually hurt my back a few days ago- nothing serious. But, I could hardly get out of bed this morning. I don't usually have back problems, but when I do- moving around works the best. I did shoot interviews at an autism school today. I'm sitting here with a heating pad on my back praying that tomorrow morning I'll be able to put Michael on the bus.

We had a visit with Dr. Imam last week. We decided to take Michael off the DMPS and see what happens. His level of mercury has been going down on his urine tests. I'd also like to see if his progress slows down or we see any side effects. Dr. Imam gave Michael a great compliment, "he's our poster boy". At first I thought "that's sad". Because Michael is doing very well. But, I wish all the other kids were doing just as well, if not better.

We skipped chelation this week because of Thanksgiving. We'll be back on track this Friday. Btw- Michael has been eating some food with gluten in it with no side effects. He's also been eating some new foods. I bought a bunch of gluten/casein free stuff- crackers, cereal, bread, etc. I REALLY REALLY REALLY want him to like fruits and veggies. I would also like to phase out the meat he eats- so he's a vegetarian again. I'm just so happy he is trying new things- that is a very good sign and encouraging.

Hope you all had a nice Thanksgiving Holiday. I might not be posting as much as usual. I'm going to be busy the next month. I have a lot of video editing to do and I also suspect my Mom is going to pass away in December from pancreatic cancer. So, all hell is going to break loose soon. In a way, worrying about how Michael is going to handle death has been a good distraction for me. I guess everything in life is a lesson- right?

Thanksgiving 2007

2007-11-19T08:45:00.000-05:00

I think all the time about the things I am thankful for.

This weekend Michael was playing this computer game called "letter rip". It gives you tiles with letters on them and you have to make them words. The kid is on level 44. You can save the game and play it later- so he's been doing that for days.

This morning he said "I'm going to keep playing this game and get higher and higher, until I'm older". He also mentioned that he was going to do it all by himself. I'm pretty amazed that he would play 1 game for so long AND that he wants to do it alone (although he did come to me for help a few times). But, I don't know how to explain to him that there is no top level. There is no end to the game. I guess I'm going to have to pick a number, like 100, and tell him that's the end of the game. But, what number should I chose? 100? 200? Why should I limit him?

Michael has been understanding abstract concepts more and more lately. I had to explain "death" and "funerals" to him recently. My mother should be passing from cancer in the next 2 months. Michael made a few comments, like "when you have cancer you sleep a lot". We never told him she had cancer. He is really picking things up.

I got a couple of books about dying- one even about Grandparents dying. I was afraid he would get obsessed with it (talking about dying all the time), but thankfully he just mentioned it a few times.

I think this Thanksgiving is going to be bittersweet and not too enjoyable. I just keep saying how grateful I am that Michael is doing so well. It's the only thing keeping me going these days.

Michael's latest urine tests show that he level of mercury he is excreting is going down, so we may stop the DMPS. That is one of the 2 chelating agents we are using. I also wanted to mention that the Nystatin once or twice a day really helps. A few months ago Michael's yeast got worse and you can tell by the increased stimming and farting. The Nystatin, in addition to probiotics (good bacteria) and natural remedies (like garlic, caprylic acid, uva ursa, etc) have been working nicely. I definitely see a decrease in the stimming.

Also, Michael got his first report card for this year. He got perfect attendance (can you believe it?) and pretty good grades. They give number grades in 3rd. 1 is "really needs improvement" and 4 is "doing great". Well Michael got mostly 2's and 3's with just a couple of 1's. I'm happy with that. The grading system is for typical 3rd graders- so expect him to be a little behind.

He also got all 3's for Music, Art and Gym. He never did that before. Some other things he teacher mentioned at the parent/teacher conference: Michael's volume goes up and down- they are working on that. Michael gets along with all his classmates & they think he is funny. His biggest problem is paying attention, but usually he knows the answers. Michael's teacher also said that he's the best in his class at Math.

This year he's in a class with 10 kids- most have ADHD or some type of reading problems. There are no other kids with autism, or with Downs, MR, bad behavior problems, etc. His teacher said he couldn't be with a better group of kids this year. I have to say too that the 3 adults in the room (teacher, assistant and aide) are doing a wonderful job. They are very dedicated and caring. Michael really enjoys school this year and gets upset if he's not involved with the other kids. I'm really happy with the situation and couldn't ask for more.

So, as you see, I have a lot to be thankful for this year. I hope you will too. Oh and another thing I'm grateful for- all of you reading this blog. I have no idea who you are or how many of you there are... but thanks.

I'm Back

2007-10-27T12:11:00.000-04:00

Wow. A lot has been going on lately. I hope I can remember everything. LOL. First thing, Michael is doing great and still improving everyday. We had the Long Island Autism Conference last weekend. Michael opened the conference with the pledge and did a great job. I just posted a clip on YouTube:

He also did the pledge the second day. I have to upload and edit that before posting.

Michael seemed to have fun at the event. His cousins were there and some of his old classmates stopped by. So, he was able to swim and play a bit. He even sat in on at least 2 of the breakouts. I can't believe Michael sat quietly in a room for over 30 min. at a time. Sometimes I can't even do that. Dr. Imam did a breakout and we showed a video of Michael and it was reported to me that when the video played he pointed to the screen and said "that's me!".

I think Michael really understands a lot more of what was going on. And I was so happy he was able to really participate. Here is a picture of Michael with his good friend Paul looking at a bubble machine on one of the exhibitor tables.

On the Thursday after the conference Michael had his first teeth cleaning. Again- amazing job. He sat there and only once did he gag (no throwing up). I was very surprised. Honestly, I was alittle too tired to get all nervous and stressed out about it. Sometimes I get to the point where I say "it is what it is". I knew stressing over the dentist wasn't going to help, plus I just didn't have the energy. About a month ago this one dentist said Michael had 5 cavities and he wanted to put mercury filling in them. The new dentist said there were 2 or 3, but they weren't that bad, so he was going to leave them alone. So- good news indeed. The next teeth cleaning is in 3 months.

School Update: Michael's teacher said he's doing great and he is less of a problem than the other kids in the class. Michael is in a special ed class with 10 kids and 3 adults. He's the only one with autism. The other kids are ADHD, dyslexia, etc. Michael had also been getting all 100's on his tests. He got one 90. At this point I may have to get a DNA test because there is no way this kid is related to me. I wasn't a bad student- but all A's.... hummmmmm

Michael is also doing his homework behind my back. He takes it out of the folder, puts down all the correct answers, puts it back in the folder and then puts the folder in his backpack. One night he asked for my help. But, he's really great at it. I'm very grateful that his teachers are so loving and understanding.

I get to see Michael in action on Tuesday. I'm the class mother. First time for me. I actually have no idea what is expected- but I think I do the parties. We are going to have our "fall party" next week. I'm going to pick up some bagels and snacks. I also have some special cookies that Michael can eat and then give it to the whole class. That will be a first. The cookies are good too! It's made by a Jewish Bakery in Nassau County about an hour from here.

Chelation: Michael is doing fine with chelation. Yesterday I didn't even sit in the room with him the whole time. I was hanging out in the back room with my friends. I'm going to miss chelation when we are done in June. It's been a good support for me too.

"His brain is all better"

2007-10-12T13:29:00.000-04:00

Last monday Michael went bowling with my best friend's kids. When her kids got home they told their dad "We went bowling with Michael. He did so good. He even beat us. I think his brain is all better".

When these kids were little they wanted to know why Michael didn't talk and lined up cars all day. So, being that they were preschoolers at the time, we explained it like Michael had something wrong with his brain- kind of like a boo-boo and it was hard for him to pay attention or talk.

So, these children, 5 and 8 years old, thought Michael was better. The 5 year old even said "I love him". They didn't play together a lot as children (michael didn't play with many kids to begin with). But, they knew him back then.

It was just a great thing to hear.

Pinstripes

2007-10-07T19:47:00.000-04:00

Two more weeks until the BIG conference. As you can tell, it's all I do and think about for the months leading up to October 20th and 21st. Right now I'm watching the Yankees play the Indians in the payoffs (3rd inning) and getting depressed. Roger Clemens just walked off the mound for the last time. George said that it would be Joe Torre's last game too if they lose. Then I'm thinking how it might be my mom's last game. She LOVES the team and watches religiously. She started another round of chemo, but I just don't think it's working at all. Well, other than making her sicker.

I just hope they pull it out and give Yankee fans something. You know, it's one thing when someone around you gives up and another when it's yourself. I feel so empowered lately because I feel like It's so important to not give up (as I'm writing that the Yankees just scored).

I have this good friend, Danny. He's a Yankee fan like myself. He told me one day how there are 2 different types of people in this world. Yankee fans and Yankee haters. It's not about baseball really.

There are people in this world who WANT to win. They make no excuses and go out there like winners. I guess the main thing is they BELIEVE in themselves. I know, it sounds hokey. But, it's true. Yankee fans expect the team to be in the playoffs every year. For years, Red Sox fans were just waiting for the moment the team would crumble. I don't expect the Yanks to lose. And when they do, it's heartbreaking. But, they are the team in ALL of sports that has won the most championships. ANY SPORT! (OK, I heard of a high school badmitten team that won like 125 games in a row- so I guess I should say "all professional sports".) But, you get my meaning.

Next year will be the last year at the old stadium in the Bronx. The new one is under construction. I just can't imagine them playing somewhere new. I also couldn't imagine my son talking or being in a class with kid who weren't autistic- but it happened.

After watching my mom get sicker and the Yankees crumble (please prove me wrong guys) I'm more empowered to help my son. Because it's something I can do. I pick his supplements or decide on how long he does chelation. Yes, I have regrets. But, I'm really happy the way things are going. Michael just came in here and asked for "the new bread". He's eating store bough rice bread. In the past he would gag and throw up on it. There are so many little things he's doing lately.

I made a list of things I want Michael to be able to do at 18 years old.

Graduate High School
Go to College
Drive a car
Play Piano
Be able to hit a baseball
Have friends
Read on his grade level
Ride a bike
Dress himself
Do his own laundry
Brush his own teeth
Make his own food

I'm learning that I have to set the bar a little higher. I have to be like the Yankees and New York City and expect GREATNESS!
But, regardless of where Michael is at 18 years old- he will always be a superstar and my most valuable player.

Go YANKS!!!!!!!!!!

Checking In

2007-09-27T22:40:00.000-04:00

Ok. I'm taking a break from conference stuff- for 30 minutes to write in Michael's Recovery Blog. I'm just so happy about something I needed to share.

Michael was dx (diagnosed) was mild-moderate autism in March of 2002. In December of 2002, I started getting involved with national groups and learned about biomedical treatments. In March of 2003, we started a special diet (no wheat, gluten, soy, nuts). So, for over last 5 years I've been praying that someone will speak up for parents- especially moms. We are first, watching our children get sick and then second, watching them get better (or at least in Michael's case). It's very frustrating to watch the medical community laugh at you and think you are crazy. MERCURY- ha. Why would a neuro-toxin be unsafe? hummmm Let me count the ways.

Anyway, parents have watched show after show on television misrepresent autism and the biomedical movement. We've seen real MD's go on CNN and say "vaccines are perfectly safe", when it's proven that they are not (just visit the VEERS). We've heard "experts" say that the only proven treatment for autism is behavioral therapy- when it's a bold face lie. Almost everyone says "there is no cure", and then I'm meeting children who are no longer autistic.

Years of frustration, yelling at my tv, getting pissed off... and then come a wonderful, beautiful, kick-ass mom named Jenny McCarthy. All of us have been saying for years- "wait until someone famous has a kid with autism". Well, those people have come and gone. But Jenny is different because she recovered her child. Amazing isn't it? Not only do we have a mom talking on national television about autism and biomedical treatments- she is talking about recovery... and vaccines, mercury, yeast, diet... holy cow (i've been saying that a lot lately since Scooter died). but HOLY COW. It's a miracle. She's a miracle. Her son is a miracle.

Jenny and her son were on the cover of People Magazine, Oprah, Larry King Show, 20/20, Good Morning America and even Access Hollywood. She is kicking ass and taking no prisoners. I just can't say enough about her.

I now have to watch tv with a box of tissues next to the couch. But, it's tears of joy.

Yesterday Jenny said on Larry King "I would never vaccinate my children again". It just makes me emotional thinking about it.

You see, when you have a child with autism, most people don't "get" you anymore. They don't understand the poop problems, lack of sleep, diet issues, the feelings of being handicapped- although your child is the one with the actual disability. But, i can't do the things that other parents do. Thankfully, I'm starting to do these things (like go to Yankee Games and rock concerts). But, more importantly, Michael is able to do these things.

Family, friends, strangers- you name it. Most people think you are nuts "No wheat- are you crazy?". If I had a dollar for every time my dad asked if he could give Michael a piece of Italian bread. The supplements, chelation, special food, everything- everything that autism does to you. Most of it is not acceptable in society. So, you have to buck the system. You have to be the rebel and not care what other people think- which is hard. But, I'm getting much better at it.

My point is- when I saw Jenny on tv, over and over speaking MY words, telling MY story- she validated everything I feel and think. Other parents told me that FINALLY their family said "oh, we get it. You were right". It took a famous person on TV to convince these people. Right or wrong- that is the way it is.

And, I thought it was hard for me to stick up for myself, look at Jenny. She is telling the world. Literally. She is my hero. And maybe only mothers of children with autism can truly feel like I do (and fathers of course). But, she is to me what Ryan White was to AIDS, or Michael J. Fox is to Parkinsons.

I wrote People magazine and all the tv shows she was on this week and thanked them. I hope this is the start of a new understanding of autism. And of course, I hope Michael keeps on his road to recovery. And also that parents have HOPE that recovery is possible.

Here is a photo of me and Michael at his 8th Birthday Party. It was a bowling party and we had a great time.

Conference Coming

2007-09-20T10:13:00.000-04:00

Well, as you've probably noticed, I haven't post much lately. I've been pretty busy organizing an Autism Conference. So, after October 23rd- I'll be back to blogging!

In the meantime. Here are some pictures of Michael and I at the beach.

OT Report from 2004

2007-09-06T19:10:00.000-04:00

This time I found an old OT report and wanted to post it. For those of you who didn't know Michael as a preschooler, this information may help you understand his progress.

DATE: August 6th, 2004

Chron. Age: 4 years, 11 months (this was his last eval at the preschool)

"Michael is a 4.11 yr old boy who continues to progress slowly towards his OT goals. Michael is frequently difficult to engage during treatment sessions, however he responds to vestibular and proprioceptive input. He demonstrates inconsistent eye contact with the therapist and decreased attention. According to the MEIDP, Michael exhibitors solid skills to the 28-31 month level with exception of an emerging skill to imitate paper folding. He demonstrates scattered skills to the 3 1/2-4 year level and few emerging skills in the 4-4 1/2 year level. Michael is able to cut scissors (32-35 mos.), build a three-cube bridge (3-3 1/2 yrs), and complete a simple puzzle (3 1/2-4 yrs). He is unable to copy a circle already drawn (32-35 mos.) and imitate drawing a cross (3-3 1/2 yrs)."

2004 Eval

2007-09-05T19:24:00.000-04:00

I found another old evaluation.

Date: August 13, 2004
Chron. Age: 4 yr 11 months

Some of the goals for the summer:

"use a spoon, use an open cup
indicate need to be changed, sit on toilet
point to pictures/objects/body parts
sort objects: sequence by size..."

Summary of Progress:

"Michael has maintained his skill level during the summer session. Michael can label and receptively identify over 100 pictures of common objects and 50 common objects. He is resistant to attempts at introducing a spoon and open cup. Michael will sit on the toilet during diaper changes and at times will indicate when his diaper is soiled. At times, Michael maintains eye contact with adults, but often prompting is needed. He is responsive to adult initiated play, but for a limited length of time (5-10 min)."

This is from his Speech Teacher:

"Michael's progress in speech this quarter has been inconsistent. At times, responses from him and overall awareness are right on target. At other times, Michael is very hard to re-direct from his own agenda. Prompts are still used to reduce echolalic responses and to increase overall awareness of adult/peers around him. Physical activity as well as songs have helped."

First Day of School

2007-09-05T19:22:00.000-04:00

Michael had his first day of 3rd grade today. I stopped by to drop some meds to the nurse and caught Michael and his class walking down the hall. Michael was fine. He adjusts pretty well. I look forward to open house, so I can meet the other parents. We handed out party invites for Michael's Bowling party. I'm excited about it. I hope the kids from his class show up. More on the party later.

Old Functional Behavioral Assessment Report

2007-09-03T21:34:00.000-04:00

I was cleaning my office and found this old functional behavioral assessment (FBA) report. Many people look at video of Michael and can't believe that he was dx with mild-moderate autism. So, I thought I would post this info from the report.

Date of Report: March 21, 2005
Age: 5 years, 6 months

Reason for Referral:

"The teacher had expressed concern regarding Michael's increase in behavioral problems since returning from the winter holiday vacation. Concern was expressed regarding Michael's perseverative verbalizations, screaming, and fake crying, as well as his lack of attending. It was reported that when screaming or fake crying, Michael appears to be agitated and tense. He may clench his lower jaws and fists. Once his behavior escalates, it is very difficult to redirect Michael back to work. It was also reported that Michael has been attempting to hug and climb on adults when he is agitated. There has also been an increase in his lining up manipulatives and chairs in the classroom."

I think part of the problem was that a new student joined the classroom in January of 2005. This student had many behaviors and Michael started imitating him. Plus, in Feb. and March- it's the end of winter and Michael spends a lot of time indoors. It's always a hard time of year. Also, back then I was working on the conference for the second year and spending a lot of time on it. Basically, he was bored.

But, it does show you a small window into what Michael was like in the past. As I find old reports, I will post them here.

Vacation

2007-08-25T01:55:00.000-04:00

The summer has been hard. Michael only went to school from 8am-11:30am. Last summer it was until 2:30pm. Also this summer he came home every afternoon wanting to do something- like go to the pool or park.

When Michael was around 2-3 yrs old he would just play home all day long. Lining up cars, watching Sesame Street. He was very happy. He never asked to go outside or play. He didn't want to play with other children. He just didn't care. He didn't even notice our 3 cats. Many parents with autistic children have to put special locks on their doors so their children won't escape. Michael only did that once, about 2 yrs ago when they first put the back door in.

It's so different now. Everything is different. Different but good. I break a smile when I write that. OK- honestly, I'm crying. I'm so lucky to have this kid. He is REALLY a good kid. Great kid actually.

We just went upstate for about a week. Just me and him and our new Honda CR-V. We were doing a dry-run for our summer trip next year. Everyone thinks I'm crazy, but Michael is really good in the car on long trips. Better than most adults actually. LOL. I also love driving, as long as there is no traffic.

I lived upstate a few times. 1987-1991 I attended Cortland State. Cortland is in the central southern tier- between Binghamton and Syracuse. It's about a 5-6 hr trip from my hometown.

I stayed in Buffalo two different times- for 2 months in 1990 while doing an internship for the Buffalo Bisons AAA Baseball team and for 7 months in 1992-1993 while working at Buffalo State at the NYPRIG Coordinator.

I also lived in Varick, NY. A town so small they don't have cable, internet or a post office. It's really pretty though and found between two of the finger lakes in Seneca County, kinda near Rochester and Syracuse, about 30 min north of Ithaca. It's about a 7 hr drive from my hometown. I was there for 6 months in '99 while pregnant with Michael.

OK. Enough for the history lesson. I've basically spent 5 years of my 38 years in Western New York. I wanted to show Michael where I went to college. He's actually talking about going to college after graduating high school. I also wanted to visit my college roommate Donna and her family. They were the ones who took me in when I was pregnant. Donna and Ken have 3 kids (ages 4, 7, & 10).

It was so great to see Michael with the kids. Except for 1 conflict with the 4 year old and a set of cars (no surprise) they got along great. They swam in the pool, played out in the backyard, participated in games of hide and seek, played board games, etc. Donna's cat even had kittens while we were there. Michael was slightly interested. A first for both of us.

We went to this awesome Children's Museum of Play in Rochester. Holy Cow- there was so much there to do. Michael had a great time.

They had this small stage, where kids could put on plays or sing or whatever. There was this one child, about 12 years old who was blind. He was on the stage singing his heart out. Donna and I noticed and I said "let's wait until he is done and clap". She happily agreed. Well, there was this blond kid, about 8 yrs old making fun of the blind child. He was poking him and making faces. I swear if there wasn't a wall right there, I would have knocked the kid on his ass- and I'm not a violent person. Donna and I got upset, as did another lady who was watching. We tried to grab the kid, but he wasn't listening. I looked for his mother, but couldn't find her. It was so horrible to watch this boy make fun of a child with a disability. That could be MY son one day. It probably has been my son before.

After he sang his song, Donna and I talked with the 12 year old. He was so smart and a delight to speak with. He was with his Aunt. She said that blond kid tried to bite her nephew too. OMG. We only caught the second half of the episode.

Anyway, the rest of the museum trip was great. But, I couldn't stop thinking about that blond kid. Argh!

For about 2 days, Michael and I went to Buffalo (about 2 1/2 hrs west of Donna's House). We went to a Bison game (lasted about 5 innings). The weather was so weird. It was very windy and these dark clouds kept moving over the stadium. Michael didn't like it. Minor league games are kinda boring anyway (nothing like the Yankee game we went to a few days before). Michael kept saying "Mommy, remember you worked here before?" I also showed him my old apartments.

The highlight of the Buffalo trip was Fantasy Island. It's this amusement park near Niagara Falls. It's actually right off the main highway- which of course Michael saw on the way to the Falls. So, as soon as we got to the Falls Michael wanted to turn around and leave. Oh, but first he wanted to walk across the bridge to Canada because he saw a Ferris Wheel across the river. Seriously. They have this bridge that people walk across. Michael is probably the only kid who ever wanted to go to another country for a Ferris Wheel ride.

So, after our 2 minutes at the Falls, we went to Fantasy Island. It was a nice place. First of all, they gave us the "handicap" discount and a pass to cut the line. That was a surprise (nothing on their website). I didn't use the pass for the first 2 hours. But, then we waited on this 1 ride for over 20 min. and Michael was getting very upset. Then he KNEW we had the pass and kept yelling "Mommy, let's use the special pass and cut the line" (people were probably thinking "autism my ass").

Michael will go on pretty much any ride. Me- well, let's just say I like to take pictures of people on rides. I had to go on the flume with Michael, which scared the crap out of me. I got so wet. It was about 70* that day- but just warm enough that it didn't bother me too much.

Before we left Buffalo, we met my friend (another mother) for lunch. Michael did great sitting at the Cheesecake Factory for almost 2 hours. On the ride back to Donna's we got the call that the first kitten was born. I might post the video on Youtube and link it here.

On the way home we stopped in Cortland and had lunch. I also showed Michael my old dorm. He knows 4 people who went to school there- so I was pointing things out to him. "there is where Mommy and Donna lived" "there is where the radio station was". I think he found it interesting that there was this school with adults in it. I got him a Cortland t-shirt at the school store. He was excited to go there. This summer they went to the school store a lot.

Michael kept saying "we need to go home and use the internet". While at Donna's we had no internet (that's why I'm doing the blog now). Michael likes to check the weather online. He was excited to leave and get back home.

The ride home was so pretty- going through the Catskills. I would read signs to Michael "Sullivan County", etc. He loved the NYS map I got. Many times he would open it up (all 3 ft of it) on the kitchen table and read the towns. I'm telling you, this kid is going to memorize all these facts. Currently one of his favorite things are the exits on the Long Island Expressway. I'm happy he finds all this stuff interesting while on the road. Gives him something to do.

Michael got so excited when we got home. He was singing for the last 15 minutes in the car. We were listening to They Might Be Giants. Then when we pulled up to the apartment he yells (and I mean yells) with joy "THEY PUT IN THE TREES AND BUSHES FOR MY BIRTHDAY!". His 8th birthday is this Monday. When he said it- it sounded so natural. Really, there were probably 5-6 times this trip where I said "he never said that before". I was really amazed at how he adjusted to things. As long as I give him the schedule and warning of any changes.

It was good practice for our cross country trip next year. I think Michael will be awesome. We just have to find amusement parks and children's museums all along the way.

Oh, I almost forgot (how could I?). We went to my old church on Sunday morning. It was so awesome. Michael sat through the whole service with only 1 outburst. They announced that it was Millie's 92nd birthday and Michael yelled "We need to go to Millie's birthday party today". Which was somewhat appropriate (and funny). Actually, her birthday party was the day before, which I later found out. But, it was so nice to visit my favorite church in the world with my favorite kid in the world. It was the perfect service- 5 women ran it and played music about every 10 minutes. People were clapping and singing and sometimes laughing- not boring at all. Michael hasn't been to church since he was about 3. Well, he did go to Christmas Mass with my sister's family a year or two ago, but that doesn't really count (it was a Catholic Church). LOL.

Anyway, it was a good trip. Michael had fun and it was great to see my old homes and my old friends. Part of me is starting to realize that the 80's and 90's are over and in the past. The memories of 2 feet of lake effect snow, baseball games every night and those beautiful rolling hills are great- but I'm back on Long Island. Even though it's not where I planned to be- it is where I am and where I need to be. I will always think of Buffalo, Cortland and Varick (and Virginia Beach) as my home.

In 1989, I took a greyhound bus to CA by myself and met this lady at a youth hostel. I was scared and she said to me "home is where the heart is". I never REALLY understood that common phase until that very moment. Every time I visit one of these places, I feel like I'm home. I felt so lucky to be able to share it with Michael. I think he understands a lot of it too. At least I hope so.

Today we spent some time with my Mom who just finished chemo and radiation for Pancreatic Cancer. Life is way to short. I've been thinking a lot lately how things just happen and you have no control over them. Well, you do have control over your attitude. I feel like now I can't even complain about my son's autism. He's such a joy that any person who doesn't want to be with him or is ignorant enough to make fun of him- they are the one's missing out. They are the one's with the handicap. Just like that blond boy dancing in front of the blind boy singing his heart out. I really hope he learns some compassion in his life.

Thanks everyone for reading my blog and emailing me feedback. Thanks for listening, sometimes you are the only person I can talk to about this stuff :) Take care, Christine

PS- Michael's Dad failed his physical and won't be going to Iraq this fall (mission accomplished).

Up, Up and Away- Kind Of

2007-08-13T12:17:00.000-04:00

This weekend Michael and I went to the Balloon and Music Festival. He was pretty excited to go. There were carnival rides, monster trucks, music and of course hot air balloons. Well, the balloons never went up in the sky- which was a big disappointment. The thing is no one knew and we all sat there for an hour watching them fill up. At that point (8:00pm) Michael wanted out of there. I don't blame him. I was ready too. Then it took us 30 min to find the car in the parking lot-lol. Michael handled THAT very well- almost better than me.

Usually when we go to a carnival we arrive just when the gates open. There are no lines. We weren't so lucky at the festival. At one point, there was a 20-30 wait for each ride. It was about 85* with no shade and people everywhere.

Here are some pictures of Michael and his mini-meltdown. Honestly, I didn't blame him. It was a difficult situation. After that we left the ride area and went and found some friends. Then we watched the balloons fill up.

When we first arrived, there were monster trucks and motorcycles doing tricks. Michael couldn't even care less. He made a b-line for the rides. Michael did play in the fire trucks. There was a cute moment when he jumped into a truck with another little boy and put on a hat.

Honestly, I don't think we'll go next year if they have it. There wasn't much for Michael other than carnival rides and we can just go to a local carnival for that. But, I was glad that we spent 6 hours there together. We have a lot planned for the next three weeks and then school starts up again (thank god). Tomorrow night- Yankee Game!!!!!!!

1 Year Anniversary

2007-08-13T12:07:00.000-04:00

I can't believe it's been a year since we started IV Chelation at Dr. Imam's office. Michael continues to do well. I would say 95% of the time we get the IV in his arm or hand on the first try. Michael sits well. The only thing that bothered him was the 4th bag would burn his arm alittle- so we backed down on it. This last week it didn't burn at all. The burning feeling is normal for this agent (phosphotidylcholine).

We got back both urine and blood tests for Michael last week. His urine toxic metal test showed that his level of aluminum is going down and his mercury is going up. Usually this is what you see. Mercury is a heavier metal and comes out after all of the other metals.

The blood work showed low Cholesterol (124), high B12 (we need to back off the powder) and low copper (I need to get a supplement for this). Michael has basically no saturated fats in his diet. The last two months he has tried some new foods. He eats 1 banana a day.

I am a person

2007-08-05T11:52:00.001-04:00

Michael actually woke me up this morning and said "I am a person. I want to cut my banana". Of course, I jumped out of bed before he could use the knife. But, it was weird to hear him say "I am a person". He's saying so many new things all the time I lose track. I wish I was on Big Brother or some show like that- where they videotape your every move.

Last night Michael and I went to see They Might Be Giants. If you've been reading our blog, last November we went to Brooklyn to see them- which was Michael's first official concert. There were about 150 people in a bar. Oh, don't worry. It was a kids show in the middle of the afternoon. TMBG started in the 80's. The two lead singers, John and John are now in the 40's and have kids, so they came out with a couple of Kid's albums. They really are fun and goofy. I used to play them at my college radio station starting in 1987, so bringing Michael to concerts means so much on many different levels.

The show last night was at the Planting Fields Arboretum Park in Oyster Bay (on the North shore of Long Island). I got tickets for the 7th row, which were really good. But, after the first song, the band invited everyone to come up to the front because there were a lot of empty seats (people just don't appreciate great talent around here-lol). So, we moved up to the 4th row. Michael was so cute. I told him a few times he could get up and dance. He does this "irish jig" thing, which the teenagers behind us found amusing.

Then after about 3 or 4 songs, the band asked people to rush the stage (gotta luv them) and we literally were standing right in the front. It was awesome. At the November concert, we were upfront also. Last week at John Mayer we were like 5 miles from the stage-so I really appreciate being close at TMBG concerts. Also, we weren't supposed to take pictures or video, so I felt a little weird taking photos. Of course, I had to. But, I kept feeling like the one singer was going to say something. I was like 10 feet away from him and he could totally see me with a camera. I did bring my small 4.0 mp Sony camera that I bought like 5 years ago and not one of my larger cameras. I don't think anyone cared about the camera. I'm just used to taking pictures whenever I want.

Michael was fine with the noise. I think one thing he really likes is the lighting show- I guess it's kind of a stim. But, he's pretty well behaved. I like how excited he gets about going. We also listen to the band on the way to the concert. That's a tradition. My sister and I used to do that when we went to Jones Beach as teenagers. I remember sitting in traffic after a Sting concert blasting his music in the parking lot and singing at the top of the lungs.

Anyway, after the concert Michael got his picture taken with the guitar player. The two main singers didn't come back on stage and Michael didn't want to wait anymore to see. I just asked him some questions:

christine: "what did you see at the TMBG concert"
michael: "A tent"
christine: "Did you have fun?"
michael:"yes"
christine: "do you want to see They Might Be Giants again?"
michael: "next year"

I told him we would see them every year. They usually play somewhere in the NYC area once a year- they are from Brooklyn.

Oh, I almost forgot. There was this great moment, which I didn't get a photo of, but one of the guitar players came down stage and let the kids play the guitar. Michael stuck his arm right out there a played a few notes. It was awesome. He blended in so beautifully last night. I'm just so grateful there is a band like TMBG. Music that we both love! I don't think I could sit thru a Barney show.

One more thing- 2 nights ago Michael and I went to see Underdog, the movie. Michael sat great, which was surprising because the movie wasn't THAT exciting. I was tempted to take him to see Borne3 :)

July 2007 Video

2007-07-30T14:47:00.000-04:00

Here is another video from last Saturday. I was surprised that Michael talked about eating new foods. He's really showing interest in foods around our home. I better start being careful. I also want to pick up some gluten free bagels (if I can find them). Michael also talked about eating his Birthday Cake. He NEVER wanted that before. I want him eating new foods- but I don't want those foods to be "junk". At least we added bananas, apples, celery and carrots this month.

Happy Birthday- Cha Cha Cha

2007-07-28T15:24:00.000-04:00

Michael wanted to make a YouTube video today. Here he is reading a book about birthdays and singing happy birthday.

He shocked me when he said he was going to be 17 in 2016. I know he was born in 1999 and all he has to do is subtract 1 from the year- but it's pretty cool that he can do that. I think when I asked him what year I will be 50- he had enough. LOL.

I'll post some more clips tomorrow. You'll be able to see how much he has improved. Yesterday chelation went well, but he's starting to get antsy at the end- so we are going to cut back a little. He continues to sit well, looks forward to going and his use of language improves daily.

Thanks for reading our blog!!!! -Christine

Waiting on the World to Change

2007-07-27T10:18:00.000-04:00

Last night was the big night. Michael and I went to see John Mayer at Nassau Coliseum. It's about 45 min. from where we live on Long Island. I bought the tickets months ago. Michael woke up Thursday saying "today we're going to see John Mayer". It was so cute.

The concert started at 7pm, so we got there just around 6:30pm. We found our seats, but Michael didn't want to leave them. He was saying "we have to save our seats". I tried to explain to him that they have numbers on them and no one was going to sit in them.

I got Michael a concert shirt and we put it over the shirt he was wearing because it was pretty cold there. Here is a picture of the two of us. Thanks to the guy sitting infront of us who took the picture.

At 7pm the concert started with some band I never saw before. I still don't know their name, but they're from England. Michael was ok with the noise- which was a problem in the past. He thought the lights were interesting and liked watching the people walk in- we were sitting on the aisle.

7:45pm Ben Fold performs with 2 other guys. Ben was pretty cool, very good on stage. He was playing piano and at one point took his shoes off- gotta love that. Michael actually fell asleep at this point. I was praying he would wake up for John Mayer.

9:15pm FINALLY John Mayer comes out. The crowd goes wild. Michael slowly starts to wake up, looks around... is this a dream? LOL John's 2nd or 3rd song was "Waiting on the World to Change", which is Michael's favorite song of his. We got up and danced a little. When John sang "Why Georgia Why" I started to cry. It's kind of a road trip song and made me think of a few different things. First, I first heard the song was a few years ago and I thought about how much my life has changed since then. I also thought about my college friend in Georgia who is going through "cancer recovery" (Hi Cathie). We are going to visit her in a couple of weeks. And I thought of my mom, who also has cancer. Here are the lyrics:

WHY GEORGIA?

I am driving up 85 in the kind of morning that lasts all afternoon,
I’m just stuck inside the gloom.
Four more exits to my apartment but I am tempted to keep the car in drive,
And leave it all behind.

Coz I wonder sometimes about the outcome of a still, verdictless life,
Am I living it right? Am I living it right? Am I living it right?
why, why Georgia, why?

I rent a room and I fill the spaces with wood in places to make it feel like home,
But all I feel’s alone.
It might be a quarter-life crisis, or just the stirring in my soul, either way...

I wonder sometimes about the outcome of a still, verdictless life,
Am I living it right? Am I living it right? Am I living it right?
why, why Georgia, why?

So what, so I’ve got a smile on,
It’s hiding the quiet superstitions in my head.
Don’t believe me, don’t believe me when I say I’ve got it down.

Everybody is just a stranger, but that’s the danger in going my own way,
I guess it’s a price I have to pay.
Still "everything happens for a reason" is no reason not to ask myself,
If I'm living it right.

Am I living it right? Am I living it right? why, why Georgia, why?

Oh ya, and I was just sooooo happy to be at a John Mayer concert with my favorite person in the world. He sat and watched the rest of the concert and didn't fall back asleep. He didn't freak out about the noise. Here is a short videoclip of Michael towards the end of the concert.

We lasted until the end. Michael actually stayed up until we got home around 12:30am. He missed in the bus in the morning and had a little meltdown- but got it together and made it to school around 9am. He only goes for about 2 1/2 hours a day. Next weekend we're going to see They Might Be Giants again. I'm very grateful that we can go to concerts now and I'm glad Michael had fun. When I was a kid, the first concert I went to was Andy Gibb- at Nassau Coliseum... John Mayer is a lot cooler. So, I guess I can say Michael has it better than me.

It's the Little Things

2007-07-18T21:20:00.000-04:00

When people ask me if I think the chelation is working I say "yes". Then I find myself listing about 20 different things. Little things that I've noticed. Or maybe things that other people have noticed and said to me.

This weekend we had dinner at my parents and my cousins were there. Gracie, who is also my Godmother said "Michael is like a different kid". She sees him about once a month.

I do feel like he's a different kid. We went to the Cheesecake Factory for lunch the other day and Michael sat through the whole meal. There wasn't this big fight to get him to sit quietly. He even asked to go to the bathroom himself.

Another person mentioned that he's the happiest kid with autism they know. That is the 4th person this month. I have to admit- he is pretty happy and fun to be around.

I got tickets to see They Might Be Giants again in a few weeks. We saw them back in November and had an awesome time- it was a dream come true. Next week we're going to see John Mayer at Nassau Coliseum (where the Islanders play). It will be our first BIG, BIG concert. This time I'm bringing my camera to take pictures. Last summer I went to see John at Jones Beach and was afraid to bring a camera. Everyone had one in the audience. Between digital cameras and cell phones- I guess they can't stop people anymore.

Oh, and I got tickets to a Yankee game this August. It will be our second game, but first night game. I remember seeing Yankee Stadium as a child and the lights made it seem like heaven. I can't believe they are destroying the stadium in 2 years. It should be a landmark and museum. Breaks my heart. Anyway, I'm excited to go again.

Well, more big news. We're getting a new car. It's an SUV actually. My plan is to drive across the country next summer for two months- WITH MICHAEL. Can you believe it? I think we'll have an awesome time- visiting friends & family- seeing great landmarks like the Grand Canyon. It's something that I always wanted to do and with my mom very sick- I just made a decision to DO IT. Michael and I are calling it our "road trip". I'm sure I'll be blogging and taking pictures the whole time to share the experience with everyone. Stay tuned.

This is my Sentra. Check out the bumper stickers: "demand vaccines without mercury" and "autism is reversible". I had to scrape the stickers off last week because I'm getting rid of the car. Kinda sad- but it served us well. Oh and I don't want to hear any negative Hillary comments :)

Well, the building it done. Pretty much. The garbage around the building hasn't been picked up- big surprise. But the major work is done. Three weeks of banging and trucks backing up at 7am. Argh. At least the building looks better. I don't have a picture with all the pretty bushes infront- but here is one after the siding was finished.

Once again, thanks for reading my blog. I can't believe it's been almost a year since we starting the IV Chelation. Michael is doing so well. We also started Nystatin last week and no bad side effects. It's to fight the yeast. I'll have to get him tested again to see if it's working.

Only Child?

2007-07-11T20:55:00.000-04:00

Today Michael went and did laundry with me. I usually don't take him. Today he was pretty good. He was actually playing with a 1 1/2 year old girl. They were laughing and joking around. The baby's mom came up to me and said "does your son have a younger brother or sister?" "No, why?". She said "because he plays so well with my daughter".

Wow. Never got that reaction before. I was so proud of Michael. I also changed the schedule today and he didn't get upset at all.

This morning was open house at summer school. I saw Michael in OT with 2 other special needs kids and in his summer school class. He did very well. The class had about 10 kids (9 boys and 1 girl). They all had some type of disability. One kid had Downs. Most of them talked. But, I wouldn't say they are a talkative group. One kid saw me and asked "are you Michael's mom?" The teacher said the two of them played together in the after school program. It's called SAIL. It's like a social skills thing.

The landscapers came today and put in a million bushes and a few trees in front of the building today. It was cute. Michael touches his chest and says "They are putting in bushes for ME". They look great and the building doesn't look like a dump anymore. FINALLY!

Construction

2007-07-04T20:49:00.000-04:00

It seems like a lot of things are under construction at the moment.

First, our apartment building. They came and tore up all of the trees and bushes, pulled off all the siding, put in new windows and then put up new siding. Michael found this whole process puzzling. Strange men around, banging at 7am, garbage everywhere... He couldn't even play in the backyard because of all of the nails and broken glass. It's been about 10 days so far. I can't wait until they are finished. Michael tells the men (who don't speak English) to "clean up the mess". Gotta love it.

Next, Me. I've started on a new healthy path (we're not calling it a diet). But, I bought a Vitamix blender to make smoothies. I got a ton of organic fruits and veggies. Best part if Michael's helps me. I cut up everything and he puts it in the blender. Then I let him power it up. He won't drink the juice, but I got him to eat bananas, carrots, lettuce & celery. He used to eat bananas when he was like 1 or 2 years old. This is a pretty big deal. He gagged on the celery, but didn't throw up. In the past he couldn't eat these foods- he wouldn't even touch them. I'm excited. We keep telling him "we're eating new foods". I think it helps that we are both eating new foods. Michael even gets upset when I don't make a plate of new foods for him while making a smoothie. My goal is for him to drink the smoothies in the near future.

And lastly, Michael. We got his tests results back a few weeks ago and he has yeast and bacteria problems. Many children with autism have gut problems like these. We added some yeast and bacteria fighters to his supplements. Olive Leaf, Grapefruit Seed Extract and Monolaurin. If these don't work, we'll going to try a prescription that is stronger. But, I'll like to try the natural stuff first.

The hardest part has been Michael's stims. He's been stimming a lot lately. He's also been rubbing his mouth, like he is nervous. Extra stimming is a sign of yeast problems. So, it makes sense.

Michael also started summer school on Monday. He goes for about 3 hrs a day. I'm not sure exactly what class he is in, but he's not in the autism class anymore. I need to go to the school this week and check out the situation. He was definitely happy to get back to school.

Oh, another thing we changed is Michael's diet. We cut out french fries, cereal (corn), orange juice and rice milk. That is about half his diet. We added Pear Juice. I'm also working on the whole "new foods" project too. LOL. We haven't had this much change since he was 3 and we had him start eating meat and took out gluten/casein & soy.

With all of this going on, Michael is still doing well- talking more everyday. Michael got the best compliment this past week. Three different people said Michael was the "happiest kid with autism" they had ever seen. He dressed himself today- even picked out his own clothes and they matched (kinda). I think if we can get the yeast & bacteria under control, which will result in less stimming- we'll be right on track. Wish us luck.

Praying for Clear Skies

2007-06-12T19:40:00.000-04:00

Saturday Michael wanted to go to the carnival across the street. We only have to drive by it once. He knows what days it's open by reading the signs. We thought Saturday afternoon or evening would be good because Michael's Dad was in town for the weekend. Well, it pretty much rained ALL day Saturday. Michael got very upset. I made the mistake of letting him see the weather report on the computer. It showed showers all week. He kept saying how he was never going because it was going to rain everyday. I'm writing down new schedules, explaining to him plan "b", etc.. doing everything I can to distract him. The only thing that worked was to yell at the cats "Kirby, you cannot go on the Ferris Wheel". Michael thought that was funny.

Anyway, Sunday comes and we are praying for clear skies. Right around 5:30pm when we arrived, the skies opened up. It was beautiful. We also met friends there- so Michael had 2 other boys to go on rides with. One has autism, the other Aspergers (which is like autism but with typical speech).

We were there for over 2 hours. Michael had so much fun- so did we (the parents). The boys were great and playing so well together. Most kids with autism like carnivals because they like to spin around. They also like the speed- it's like it feeds something in their brain. All I know is Michael loves rides, has no sense of fear and the best thing to do is get a pay-one-price wristband- because he doesn't know how to stop.

I'm so happy we can find places that are local. So many people have to take trips to Disney to entertain their kids. All Michael needs is $15 :)

Field Trip

2007-06-12T19:01:00.001-04:00

There is this place called the Long Island Game Farm. I remember going as a child and getting chased by deer and goats. It's grown alittle bit in the last 30 years. They have a giraffe, lions, monkeys, etc. It's like a very small zoo. The 1st graders from Michael's school went last week for a field trip. I went along with some other parents. We had 8 adults and 6 kids. LOL. Michael did great (as usual).

They have a merry-go-round too. I don't know why on earth there are no seatbelts or straps on the horses- but that's another story. I felt so lucky to have that day with Michael and his classmates. He was reading the signs. On the way out Michael yells "goodbye Long Island Game Farm started in 1972". He also got to take the big bus home. I've never seen him on one before- he takes a mini-bus to school.

We have Michael's CSE tomorrow where we will decide on what classroom he will be in during the summer and fall. I'm sure it will go well. This summer was not what I expected, with my mom getting sick, so I'll just take whatever they want. Part of me want to buy an SUV and just drive across the country with him.... maybe next summer.

Field Day

2007-06-12T18:48:00.000-04:00

Well, I missed the first half of Field Day because i was looking up cancer stuff online. I heard Michael was looking for me. Never heard that before. I made the second half and took some pictures and video. Michael did great. I mentioned in the other post how he fell asleep during chelation. Well, that night he had a fevor. Next day- woke up fine. hummmmm? Don't know what that was about. He rarely gets a temperature- maybe once or twice a year.

Oh, btw- we added a new ingredient to Michael's chelation. phosphadityl choline. I've noticed Michael's speech has improved since we started it. I mean, his language is constantly improving, but the last few weeks I've seen a jump in his skills. No side effects- again. Well, one day he couldn't poop, but we just added more Epson Salt to his bath water.

Back from Chicago

2007-06-01T20:34:00.000-04:00

I got back from the Autism Conference in Chicago on Sunday. I met a lot of new people, make some contacts, picked up alittle information. But many of us who have attended this conference in the past found it hard to learn something new this year. I did decide to do a test to check for viruses and yeast. I met a Dad whose child is recovered from anti-virals and nasal MB12 spray. Anyway, it was a long weekend- lots of information, not much sleep and was more of a "working vacation". I was glad to get home and see Michael on Monday.

I went to pick up Michael from my parents that morning and my mom was headed to the hospital. I didn't think it was serious- but then everyone was talking cancer. Pancreatic cancer- the worst type. Ugh. I know this is an autism and chelation blog- but my mom getting sick really affects our lives. My sister and I have been trying to figure out where to send her. There are so many different hospitals and doctors. This reminds me of the early days of autism- looking up things on the internet. I have to say though, so many "online friends" have been helpful- sending me names and phone numbers. Or just general encouragement. It's so important to reach out to people online- be it autism or cancer. I love reading message boards. Real people talking about their experiences. I learn so much from them.

Anyway, Michael continues to do great and I'm so incredibly thankful for that- especially with my mom sick. I was crying the other morning and Michael told me to "take the sad face off" or "sad off my face". I don't remember. A lot is a blur this week. But, he did say something like that. He also said "no sad face, like Michael" and smiled. I wish that smile could cure my mom's cancer.

We went to chelation and Michael did great. He actually fell asleep and took a nap. He had field day today and was very tired. I'll upload the photo later- it's pretty funny.

Well, basically life really sucks for my family right now- and will probably get worse. I wonder how all of this will effect Michael. He doesn't really understand death. What 7 year old does? But, I'm going to talk to the school psych. to find out what I should say to Michael. My parents have been so supportive of Michael's road to recovery. If you are reading this, please pray for my mom and my family. We are still waiting to do a biopsy and know everything for sure. Thanks for listening :)

All 4's!

2007-05-24T10:46:00.000-04:00

The school has this system. Everyday he gets a number 1-5. 1 is horrible behavior, 5 is "couldn't be better". Michael actually gets 3 numbers a day: Behavior, Academic & Social. Lately, he has been getting a lot of 3's with some 1's & 2's. We had some problems last month where he was making fun of other kids or getting other kids in trouble. His speech & occupational therapists are supposed to give him numbers too after every session.

I've gotten into this habit of opening Michael's backpack when he gets home and checking the numbers. If they are good, I make a BIG deal out of it. Sometimes we use the numbers as a reason to go to the gym or the park.

Well, this week Michael got all 4's. He hasn't done that in months. On Monday his teacher wrote "Amazing today! Great Behavior". She also said how he went to the other building (the school is actually 2 buildings- an old and a new) and did wonderfully with a class of typical kids. That's very exciting to hear since he'll be in that school next year.

The best comment he got was from his speech therapist:

"Such a great week!! I am so proud of Michael. We had a fire drill today, so speech was 10 min. late to start and R & B (the two typical kids who join him in speech once a week) had computer lab, so they couldn't come. I spoke to Michael about it, and asked him what we should do and he INDEPENDENTLY said "It's OK. We can do something else". His sentences have been fantastic and his grammar/syntax continue to improve. Way to go Michael!"

OK. Maybe his good behavior has something to do with the fact that he's planning on going to Adventureland on Friday (amusement park). He loves rides- things I wouldn't even go on. But, it's a great motivator.

Also- I'm going to Chicago for a couple of days for the Autism One Conference. I explained to Michael when he's leaving and coming back and that he can call me on my cell phone if he wants to talk. On Monday Michael was talking to himself and me going to Chicago and he said "I will miss you". Shocked, I asked him "will Michael miss Mommy or Mommy miss Michael"?
(sometimes he says a question because he wants YOU to ask HIM- like "do you want juice?")

He said "Michael is going to miss Mommy". WOW. He has never said those words in his life. I've gone away about 4-5 times where the trip was 3-7 days long. He rarely cared that I was gone or showed a reaction when I returned. How bittersweet it is to know that now he will be sad when I leave.

Another thing I noticed this week. He's been playing in the backyard where there is a tennis court. A lot of the neighborhood kids play there- riding their bikes, throwing balls around, etc. Michael has been asking to play there after school. I watch him from our deck. He's interacting, following the kids, sometimes talking to them. He's still not communicating on a typical level- but he is trying. And it's nice to see him play with a group of kids, since he is an only child.

The Body Boogie

2007-05-19T00:34:00.000-04:00

Michael had a concert this week and he did great. Again, needed very little help. Compared to years past- he is getting better and better. Chelation went great again today. When Nick called Louise to help him Michael yelled "Louise" too. Then Michael said "she's on the phone" and asked me to help him.

Check out in the picture how cute Michael is sitting. He sat like this for most of the time and enjoyed the show.

Again we are very happy with the way everything is going. The only part of his life that isn't improving is his eating habits. But, hey- if that's the worst thing. So, he eats the same food everyday. He's kicking butt with everything else.

Like my Dad says "he's the best". Here is a picture of my parents, who came to see Michael. It was also my Mom's Birthday- Happy Birthday Grandma!

"Happy Mother's Day" Never Sounded So Good

2007-05-13T22:15:00.000-04:00

What a nice Mother's Day I had. I met Michael Sunday afternoon at my sister's house. My parents had him overnight because I videotaped a Bat Mitzvah in NYC on Saturday. They actually took him to church Sunday Morning. My sister said he sat REALLY good for about 30 minutes. I take that comment as saying after the 30 min. he was difficult- which is understandable. I'm surprised he lasted that long.

Anyway, I get to my sister's house and Michael runs up the stairs- looks right at me and says "Happy Mother's Day". He had such a big smile on his face. He was so proud of himself. It was the best gift ever. So many parents NEVER hear their child talk.

Michael spent the rest of the day hanging out and playing with the kids. There was a 4 yr old, two 8 year olds and a 13 year old. The "gang" played tag & duck, duck, goose. I watched them for a little while in the front yard. Michael stayed away from the road and followed along- taking turns. It was great. He was the best I've ever seen with this group of kids. Two are his cousins.

When Michael was little he used to go downstairs and just line up cars for hours. When he was 3 his favorite thing was to sit in his cousin's room and watch the celing fan. Today he played, ate lunch, sang Happy Birthday to my Mom... doesn't that sound pretty typical to you? It was great- the best present ever!

This Time It's Bowling

2007-05-13T09:15:00.000-04:00

You know how I keep comparing Michael to past experiences and see a big difference? Well, a couple of weeks ago I took Michael to a bowling party for his cousin. It was at the same bowling alley where Michael was in a league one summer. Probably 3 years ago when he was 5. We lasted about 4 weeks then. Michael was running ALL of the place- onto the lanes, trying to touch the pins, sliding on the oil... it was horrible.

I grew up in a bowling alley, bowled 6 days a week, competed on the high school team, when to state tournaments. I even coached bowling after I graduated college. I take bowling very seriously. I even went to "bowling camp". Yes, there IS a professional bowlers camp- lol.

I always wanted to have kids and teach them how to bowl. That's why I was so excited when Michael was 5 and he started a league with a neighbor. But, he got so overwhelmed and out of control. The situation was actually dangerous. We never tried again.

I kind of expected Michael to be better at the party, because he's been adjusting so well to everything. He was GREAT at the party. All typical (non-autistic) kids. 25 of them (yes, it was crazy). Michael waiting his turn, threw the ball himself and he was very excited.

He also did this thing where he was hanging out with some other boys by the video games- pretending to play them. It was really nice to see.

The only bad thing was all of the kids pretty much ignored him. One kid sat down next to Michael and pushed his food away and make a face (after trying to steal his seat beforehand). Michael was washing his hands in the bathroom at the time. No one really talked to him, noticed him, played with him, etc. Sometimes when Michael would say or do something "odd" the kids would rolls their eyes. I really DISLIKE (because I don't want to use the word "hate") when children act like that. I don't care that they are 8 years old. I saw the same thing with some friends from out of town.

It's like there is a this HUGE need for people, including kids, to understand what autism is. My son is TRYING so hard to fit in. He's trying so hard to talk and communicate. I guess it's just the age old problem of accepting people. Kids in wheelchairs, with no hair, who talk funny, etc..... They are all kids. What are other parents doing to teacher THEIR children how to be compassionate? I doubt very much. They are busy playing video games and soccer.

With the amount of kids with autism (around 1 in 150) you would think EVERY child in America (or at least Long Island) knows someone with autism. Seriously, I can't drive more than 10 miles without seeing an autism awareness ribbon on someone's mini-van (it's always a mini-van-lol).

I know Michael is doing his part. He goes to the park near his school and sees kids he knows. They have always been so kind and understanding. I really do credit the school for educating them. I hope this continues in the future. Next year Michael is moving into a new classroom. It will be up to 15 kids, not 6- like he has had for 5 years. So, now he's be with non-autistic kids. I really hope that the students AND the teacher will understand him and see what a different person he is. And that being different is ok. We are all different- no one is the same. NO ONE!

Sprout Film Festival

2007-04-28T23:09:00.000-04:00

Today Michael and I drove into NYC to see the Sprout Film Festival. They show movies 2 min-2 hours long that are about people with disabilites. Some are even made BY people with disabilites. I went to this event about 4 years ago and it's very inspirational.

This was the first time Michael & I went into NYC by ourselves. We went to Manhattan in July 2001 with Michelle. Then last fall we took a trip into the city with our friends from Nigeria. Last year Michael and I went to a Yankee game & a concert in Brooklyn. But, we never went into Manhattan by ourselves.

I told Michael beforehand, so he knew where we were going. He was pretty cool with it all- except the movie bored him alittle. Then when I said we were going to leave, this guy asked me to take a picture- but I had to wait until some people were done answering questions. So, basically Michael was running around, getting upset. It's so hard to "change the schedule" with him.

We got to meet Chris Burke, who has Downs and starred in "Life Goes On". I used to love that show. He was very nice and it's great to see someone with a disability who is so successful and independant.

I'm glad that we went. Michael and I had fun. He said he wanted to visit NYC again. To find out more about the film festival you can visit http://www.gosprout.org

The Amazing Race

2007-04-26T20:21:00.000-04:00

Michael and I participated in the "Amazing Ridge Race" on Thursday Night. It was like the tv show- basically a savenger hunt. Michael did great- following along and saying hello to his friends in the hallways. I glad we did it.

I took some pictures of Michael when we got home. This one I just love. The trees and flowers are blooming and are so colorful. For this picture I asked Michael about one of his classmates. The two of them are very silly and sometimes get in trouble together. Which of course, Michael thinks is FUNNY as heck. All I have to do is mention the kid's name and Michael smiles. BTW- speaking of other kids, I think for the summer Michael is going to spend half the day with his regular ABA/Autism classmates and staff. Then he'll go to the camp for 3 hours. I still have to work out the details. I'm not totally happy with it and hoped that the school would have an appropriate class for the summer. And now I have to pay thousands of dollars for camp too. I don't HAVE to send him to camp, but I think he would get soooo much out of it. The poor kid is an only child. Sometimes he plays with the kids in the neighborhood, but they can be alittle "wrong". The other day they were shooting BB guns. Holy crap- I don't think so. Don't even go NEAR my kid with one of those guns. I'm hoping we find some more positive roll models for him.

The Greatest Haircut in the World

2007-04-24T19:06:00.000-04:00

On Thursday Michael and I are going to participate in the 1st grade "Amazing Ridge Race". Honestly, I have no idea what it is, but it about students pairing up with a parent and having a competition. Like the basketball tournament, it's for mostly typical kids and Michael will probably be the only one with autism participating. He's mainstreaming more and more- it's so great to see.

Anyway, I decided today to get Michael a haircut. We love his long hair and curls, but it gets alittle "bedheady". We walk into our usual haircutters. Michael sits in the seat, asks for the timer, sets it and tells MaryAnn she has 18 minutes. I ask Michael if he wants MaryAnn to use a buzzer or scissors. Michael wants scissors.

Ok- let's go back in time, so you can understand the importance of today. We used scissors for the first 3 years or so. By the time Michael was 2 1/2 he HATED to get his hair cut. It would take 3 of us to hold him. He was scream and cry. After about a year of that, someone suggested giving him a buzz cut. I thought the buzzer noise would drive him crazy (which it did), BUT it was so quick. A big improvement over the scissors.

Eventually Michael got used to the buzzers. I would say about a year or so ago he would sit nice for his haircut.

But now that his hair is longer, buzzers don't really work. So, today when he asked for scissors I was surprised, because he has NEVER liked them. But, today, for some reason, he sat PERFECTLY. He even tilted his head up and down when MaryAnn asked him to. He kept saying to her "you have 12 minutes... you have 10 minutes". When paying I said to MaryAnn "Miracles DO happen". Of course on the way out he tried to touch the fire alarm- but hey, you can't ask for everything.

Green Eggs & Ham

2007-04-20T02:40:00.000-04:00

Michael has this new thing. He takes 2 books, hands them to me and says "storytime". Then he calls the cats over to hear Mommy read a story. It's so funny. He NEVER wanted to me read books to him before. NEVER. He has tons of books. For a while he would stim off of them. This is a picture of Michael when he was around 3 yrs old flipping thru the pages of a book

Yesterday, Michael started making piles. He put 2 books on the bed and said "These are for Dr. Imam's office." Then put 2 more on the table "These are for Friday" "These are for Saturday" and so on. This morning he comes into bed with a book and asks me to read. I got thru half of it and he says "we'll finish the rest later". It really is an amazing thing. Not only does he enjoy me reading the books- he reads them too.

Michael reads the "Sam I Am" part of Green Eggs & Ham. And I read the other part "I would not eat them in a house...". I know he picked up this habit from school. They have library and storytime. It just finally clicked.

Also, Thursday we did another round of chelation. Michael did great. He sat fine, was laughing, telling the other kids what to do- typical Michael. He got alittle upset when I couldn't get wireless on the laptop, but there nothing I could do. I guess that is his biggest problem now-a-days- the anxiety.

I had his school meeting Thursday also. We set up everything for the fall, but not the summer. So, i'm meeting with the director of special ed tomorrow. Wish me luck. I hope I get the right placement for Michael. One thing his speech teacher said, which I never heard before-- she said that when Michael is with 2 typical kids in speech, he acts wonderfully. He takes turns, doesn't get in trouble, behaves, etc. I was thinking that is the perfect reason why he needs to go to camp this summer (with typical kids). Let hope it works out.

Also today (a lot going on) we got a urine metal test back. Michael dumped twice as much aluminum as last time. His mecury also went up. I was surprised. It's a good sign- the chelation is working.

Saturday we are going to get the bi-monthly blood work done. I'm not worried about that stuff anymore. He sits so nicely for it.

Ok- it's almost 3am and I should get to bed. Again, we are so happy with the way Michael is progressing. He's the only kid in the school program who is moving up. When he was 2 1/2 and dx with mild-moderate autism, couldn't talk, play, look you in the eye, pay attention, didn't sleep thru the night, etc... I never thought we would be at this point at 7 1/2... Moving up to a 15-1 classroom, going to a typical summer camp, winning MVP of the basketball tournament, singing in concerts, making typical friends, going to Yankee games and rock concerts, etc. It makes me say...

"I do like green eggs and ham!"

A New Day

2007-04-16T10:45:00.000-04:00

Well, the big storm is over, pretty much. We had a lot of rain and wind all night. On Sunday, Michael kept saying "Mommy and Michael are staying home another day". We also stayed in on Saturday while I got work done.

Spending so much time with him lately I've really had a chance to see how much he is improving and how well the chelation is working. And no side effects too. He likes going, his veins/arms look fine, he sleeps well, he's not in any pain- except for 5 seconds once a week. Giving a kid a vaccine is just as much pain, if not more. All his levels (kidney, liver, etc) are normal. And when we had him tested for metals 4 years ago (these results are not on the blog) he was very high in arsenic, alumimum and lead. So, there definitely was a reason to chelate a child with heavy metal problems- regardless of the autism.

So, I feel good about the whole process. I see my son getting better and better everyday. EVERYONE who knows him sees this- it's not just me, some "angry mom" trying to make myself feel better. MY kid is feeling better. My kid is happy. My kid can now express himself and share and make friends and ask for things he wants. It's changing every part of his life- for the better. And what is so great is that I live in a place, a country, a state, a world where I have the freedom to chose what my child is going to eat & drink, what religion my child is going to be, what baseball team we are going to support and I get to chose his medical treatments. I feel so blessed that the people who really matter- my family, Michael's dad, his family, my neighbors, my friends, Michael's school- they all support Michael in different ways and they are sooooo happy for him. They were there when he sat in a room for 2 hours and looked at a ceiling fan. They were there when we had to leave the Circus with him screaming bloody murder. They were there when he would line up cars and trains obsessively. Some were even there when he got up every night from 3am-6am for the first year and a half.

Go Michael & Go Yankees!!!

My photographs & videos

2007-04-15T20:21:00.000-04:00

Needless to say that if ANYONE takes my photographs or videos from this blog, my myspace page or my youtube account WITHOUT my permission, you will be held accountable. Just because I post something online does not give you permission to publish it else where. Consider this a warning. I've already taken action.

Plus, any negative comments about me, my child and how we live our lives will NOT, I repeat will NOT stop me from doing anything. You are sad people with no lives who are the real victims. I feel sorry for YOU.

I only hope the hatred you feel for yourself is not projected onto innocent children anymore. God help you.

-Christine

Virginia Beach Trip - April 2007

2007-04-07T18:46:00.000-04:00

Last week Michael and I drove down to Virginia Beach. We went last August a few weeks after starting chelation. It was nice to see people who hadn't seen Michael since then- because they all saw his progress. We visited with friends, ate out a lot, walked by the oceanfront, went on a ferry ride and took a nice walk on the farm where I use to work.

Michael handled himself pretty well. We just had one bad experience where I tried to give Michael a new food and he threw up. So, the sensory thing is still there :)

Another change we saw this week is Michael has been bringing books to me and asking me to read them. He never did that before. Books were things to stim off of or color with crayons. He even sat there and listened to the whole book. Today he brought a Dora book to me and where she says "help me by calling the tiger" Michael called the tiger. I've never seen him do that. He does it with the tv show once in a while- but never with a book.

Catching Up

2007-03-20T19:45:00.000-04:00

Some days it's hard to figure out if Michael is progressing. Kinda of like- you can't see the forest for the trees. Today wasn't one of those days.

We missed last Friday's chelation session because of an ice storm. So, today I took Michael swimming at the gym. We used to go once a week before he started chelating. We haven't gone since August and that was his birthday party.

The pool is very big with 4 lanes. Many people do laps. Sometimes it's a challenge because Michael thinks it funny to go into other people's lanes. Of course today there was an aquafit class. Usually about 5-6 older, less active women jump around the pool with an instructor. In the past, Michael would distrupt the class- screaming and yelling. You won't believe what he did today.

Michael joined the class, followed the instructor and even counted down the exercises...5, 4, 3, 2, 1. When the girl said "keep going", Michael would yell "keep going". Everyone laughed. He did this for about 10 minutes. I just sat back and watched.

Then Michael comes over to me and wants me to do some laps. Ok. So I do some laps. Then he starts swimming (with a lifevest) next to me, in the next lane. We are having a race. And another. And another. We raced for about 30 minutes. He has NEVER wanted to race before. I can't believe we did it for so long. I talked him through it. "Michael is leading, Mommy is trying harder. Michael touched the blue first- he wins. Good job. Michael is in 1st. Mommy is 2nd. Michael is the winner."

I let him win a lot of times- trying to build his confidence. But, I also let him lose- so he learns to be a good loser. Or at least to not have a melt-down when you lose.

Then Michael started narrating for me. "Mommy is catching up!". It was so cute. One time we reached the wall and I won. I said "who's the winner?" and he said "Michael". I couldn't disagree with him. He is the winner- always!!!!

Oh another thing I noticed- he didn't run when out of the pool, he only tried to play with my hair once and he only tried to stim off the water drips once. He used to do those stims (hair and water drips) for most of the time he was in the pool.

You're Too Loud

2007-03-14T19:51:00.000-04:00

Wow. What a week we had. Michael did a lot of things to surprise me. First of all chelation, got the needle on the first try this week and he sat still the whole time. He's been doing really well lately.

We had some visitors this week. First our old neighbor from Virginia, Joe. He's not my neighbor from Virginia, he's my neighbor from Virginia. OK. I need to be more specific. When I was a teenager Joe and his family lived across the street from my home in Rocky Point, NY. They escaped to Chesapeake, VA with their 3 small children around 1988. I went down to visit them a few times and liked it, so in 1993, I moved to Virginia Beach (next to Chesapeake). Then in 1999, I moved back to NY.

I guess I can credit them (among others) with the whole "autism experience" I had while living in Virginia. I worked with ASD kids as an aide, babysitter and therapist. That whole experience prepared me for my life with Michael.

Anyway, it's fun to visit Joe and his family in VA with Michael because everytime we go Michael is at a totally different stage. Last August we went and they saw such a difference in him (I think I posted about it back then). Well Joe spent a few hours with him Friday night (after the chelation appointment) and said that Michael seemed to be talking more. And he was impressed with his spontanious outbursts.

At one point we were all sitting around the table talking and Michael comes in the room with his finger in the air. He points to each of us and says "Mommy, Grandpa, Grandma, Joe- You are too loud". It was so funny.

Then on Saturday (the next day) Michael's Dad came from California to visit.

We were sitting down at the table (again) and Michael comes over and starts eating his food with a fork. He has NEVER done that- especially with a metal fork. He narrates the experience. "First you pick up the fork and then you poke the food like this...". He takes a bite and says "scrumpeous". don't know if I spelled that correctly- I never use that word.

There are just a few example of the things he has said this week. I'm finding he is really speaking full sentences and answering my questions very nicely. Oh ya- and he played dice for about 30 minutes with my family. He was keeping his own scare too.

Also, his behaviors have been better the past few weeks- thank god. It's always better when Spring comes along.

Overall- we are still very happy with the IV chelation treatments and overjoyed at the progress Michael has made since August.

Thanks everyone for reading our blog. :)

The Pledge

2007-03-10T08:38:00.000-05:00

Michael, 7 1/2 years old, says the Pledge and sings a few songs on the loud speaker at Ridge Elem.

Recent Video

2007-03-06T23:16:00.001-05:00

Michael is watching TV and seeing himself in the computer, which I had hooked up to the videocamera. Here are some things you should know. Chance is our cat. The K-Mart is closed and the road behind it has huge "do not enter" signs infront. We went for a walk that day and saw them. That's what Michael is talking about.

I've noticed an improvement is in speech the past 2-3 weeks and behaviors have gotten a little better.

Thank You for Sharing

2007-02-17T23:15:00.000-05:00

We've been using organic French Fries as a reward for pooping for the last 2 years. Michael wasn't fully potty trained until he was about 6 1/2. I don't think he even peed in the toilet until he was 5. It just freaked him out. Anyway, the FF's worked- so we've stuck with it.

Tonight Michael did his duty (pun intended) and I gave him some FF's. I heated up some extras for me. Of course I couldn't let him see them- because he thinks that they are HIS and HIS alone. But, he snuck into the kitchen and saw the fries in the toaster oven. His eyes lit up.

I'm like "Michael, tonight Mommy & Michael are going to SHARE the fries". Share. Share. He probably knows that word. But, being an only child- there isn't a lot of opportunity for sharing. He's not bad at it, especially in school. But, he's not used to sharing FF's at all.

I give him some and put the rest in my plate. He's all confused. He finished his fries and comes over to me. "Mommy is going to share the fries". I say "well Michael, I did, but here are 3 more". He's happy, but still confused as to why I have more than him. He's probably also confused in general because I'm eating his fries.

He eats the three and hits me up for more. I give him the last one "This is how much I love you kid".

About 5 minutes later I'm writing an email on my laptop and Michael walks over, puts his hand on my shoulder and says "Thank you Mommy for sharing the french fries". He looked right at me and the way he said it- it was perfect. I actually FELT that he was thankful. The fact that emotion came thru in what he said- well that's rare for him.

It was like one of those non-autism moments. I get these flashes of.... don't want to use that word normal.... typical behavior. It's like he can't say it any better. I see that in him once in a while. More recently than 1-2 years ago.

It's little things- like going to a birthday party and not having to follow him around. Or going to a movie and making it to the end. Sometimes it's just me asking him to get a pair of socks- and he does it.

The other morning the neighbor, who is Michael's age, ran across the grass- which was a sheet of ice and fell right on his face. I ran over to him to make sure he was ok and he was crying. What was Michael doing? laughing.

I just don't see that connection- that compassion most of the time. Fact is- I rarely see it. So, tonight, when he truly thanked me for sharing- it was amazing and perfect and the reason why everyone works so hard with him.

On a side note; We got his latest Urine test back. All his metal went down, except for Mercury- it went up, just alittle. I've seen 3-4 other kids and their tests and Michael has the lowest numbers (least amount of metals being excreted). But, it's doing well- so I'm not going to stress over it. He behaviors have been A LITTLE better this week and with vacation here (10 days off) we'll see how he is on the first day back.

Also: I rescheduled his CSE meeting so I can get together the information on the laws regarding Michael's summer program. I'm working with an advocate. The next meeting should be at the end of April. Again, I'll keep everyone updated.

Thanks!

Why & Willie Wonka

2007-02-10T00:20:00.000-05:00

I'm glad I'm not posting on Myspace where I have to say what mood I'm in- because I just don't know. One second I'm happy because Michael said something new like "The buses are leaving soon" when we left school today. And he sat so nice for chelation today- no problems at all. But then he wouldn't leave the office. He was laying on the chairs and refused to leave. Part of the problem was probably because he woke up 800 times the night before, scratching himself. No, not like a baseball player. He has these dry patches on his skin.

He also had a tandrum (again) at school. I really hate hearing about that. Months would go by between negative notes from his teacher- and now I'm getting them daily. The question of the day-- WHY?

I got a test kit for something called the Organic Oat Test. I send in his urine and it tells me if he has a yeast problem. You see many children with autism have yeast problems- and it makes them... uh... alittle.... "off". Sometimes they laugh too much. Other times they don't sleep. Sometimes they have bad gas and poops. But, it's a common problem. We give Michael probiotics- good bacteria- which I think has stopped yeast from being a problem the last 4 years. But, sometimes their bodies become immune from the good bacteria and you have to change formulas. That might be the solution. Again, I just don't know. And as with everything in the autism world- you just don't know until you try.

It's just so hard to hear about your kid misbehaving. Plus, it's time for his yearly review and decision by the school about where to place him next year. Come to think of it- once before he had some behaviors and then the week before the meeting he was ok and it was like nothing bad ever happened. That's one thing that sucks about these meetings. It's "what have you done for me lately". If Michael was 100 percent for 5 months and the week before the meeting hits a kid- that's all they remember.

I'm not sure what we are going to do for the summer. I want to send him to camp, but the school doesn't want to pay for an aide. They just don't get that they are saving money and I'm spending $1500 because THEY don't have a proper placement. So, now I have to fight that. I'm not going to post all the details here so anyone can read them- but I'll keep you up to date after everything is settled- just wish me luck.

Oh, btw- that Oat test costs $220. So, I'm trying to figure out if my insurance will pay for it. This drives me crazy. I can't just get a test that my son needs. I have to see if I can afford it first. I just did another urine test last week- that was only $55, but we do it every two months. I don't even want to tell you what the chelation costs in general- but it's been thousands of dollars so far. Most parents take trips to Disney. I take trips to Center Moriches for chelation. Hey- I'm not complaining. I'm very grateful for Dr. Imam's office and this opportunity. But, I wish the insurance would cover more of it. We sent some paperwork in recently and waiting to hear back. Again- wish me luck.

This past week Michael and I watched alittle of Charlie and the Chocolate Factory. He really likes it. Which surprised me because most of what he watches is preschool stuff- Dora, Backyardigans, Diego, etc. Little things like that really show me his progress.

So where are we? Michael has dry skin, he's not sleeping well, he's having tantrums, the summer is up in the air... but his speech is still improving, he sat well for his IV's lately, he's being bumped up to a bigger class next year (progress).

On Tuesday we are having the meeting with the school. So, soon I'll have a lot to report- hopefully it will be all good news.

Ups & Downs

2007-02-02T00:19:00.000-05:00

Today Michael and I went to the gym around 5pm. I dropped him off at the nursery and then pretended to work out (well, i did 15 min on the elliptical). When I got back, Michael was playing with another kid. REALLY playing. They were running around with big cars in their hands and Michael was repeating what the other kid was saying. They were laughing and smiling. It felt so good- because sometimes he just stims off the toys (like the my pretty pony hair).

Then on the way to Trader Joe's, Michael is in the back of the car singing "Waiting on the World to Change" by John Mayer (we both love him). I'm so happy and feeling so lucky and then BAMB....

we get to Trader Joe's and Michael is running around like an animal. I can't see him. He thinks it's a game. So, i'm thinking- it's small store and he always come back to me. I just need 10 min. I'll let him run around a bit.

Well, one of the employees comes up to me "do you have a son?". I just wanted to die. He continues "he's standing by the door, almost going out".

Michael would not stay with me. I had to finally hold him down by the cash register so he wouldn't run out the door. I also had to pretend I wasn't mad. Which is NOT easy- trust me. He was rolling on the dirty floor, screaming.... all the fun stuff.

Then he wouldn't LEAVE the store. Again, I was like "Michael, we are leaving and have to go home and take a bath." Then it was "fine- we'll wait until you are ready to leave" (as I stand in the cold). Then it was "GET OUT HERE NOW!" and I grabbed him. It's 30* out and I gave him a solid minute to decide what to do. I think he would have sat in that window for 5 days watching people come in and out.

So, basically, today was a roller coaster. Not one those fun-gotta do it again- rides. But those sick to your stomach, I want to go home rides.

I guess sometimes he is just doing so well that I forget that he has autism. And that he has limits. I REALLY need to always have reinforcers with me or set up a reward. Which I don't like to do- because at this point- he should do it because I ask or say so- not because he gets french fries.

I don't know how parents do it. The ones who have kids like this all the time. Michael acts up about 30 min a week- I can take that.

While getting in the car I was thinking about how I just want Michael to get better. I want him to be able to deal with life. I want him to be able to help me shop and someday shop for himself. I think it's going to take a while.....

The Long Winter

2007-01-31T23:21:00.000-05:00

Here is a picture of Michael with his cousin, who is the same age. They don't see each other much, but recently they have been playing together when they play together.

Man, February is a long month, even though it's the shortest month. If you don't know Long Island well, it's pretty cold and grey during February. We don't get a lot of snow, which really is god's way of saying "sorry" for winter. I lived in upstate NY for 5 winters and that is when I learned the purpose of snow. It covers the ugly, muddy ground. It's hard to drive in, but it's sooo beautiful. Like I've mentioned before, Michael understands winter and snow this year. He keeps saying that he wants it to snow, because he wants to make snow angels. We did get some flurries this past week- but nothing than stayed around for more than 12 hours.

Michael is getting obsessed with the weather. Everynight he wants to check wunderground.com on my laptop. He also likes to look at the radar- "blue means snow, green means rain". The only thing I'm worried about is that he's becoming alittle TOO obsessed. The past couple of weeks, he's also had some tantrums at school. Most of the time he freaks out because the schedule is different or because he misses out on something.

Sometimes I think it's good. I know- that sounds crazy. But, most people who do chelation with their kids say that they have bad side affects. You know the chelation is working because they get rashes or don't sleep or something else negative. This is the first time since August that we have seen something negative on a regular basis. Do I know it's a product of chelation? Not really. It could be the cold he had for about 3-4 weeks. It's almost gone. Michael doesn't get sick very often. I don't like to medicate him either. So, it really could be anything. I guess time will tell.

Michael has enjoyed going to the gym with me in the evenings. He plays with the big room of toys and sometimes even one of the kids. It's great because he's starting to see the same kids over and over. They are getting used to him. Plus, the girl who works there is very understand and good with him.

We are going to do a challenge on Friday- that means we are going to collect his urine after the IV's and check for metals. Last week it took 3 tries to get the IV in. Wasn't really Michael's fault. It helps to bring my laptop and let him play games.

Here are some other pictures I had. Thanks for reading my blog and sending me emails.

Waiting for the Snow

2007-01-17T23:27:00.000-05:00

It's mid January in NY and Michael is waiting for the snow. He wants to make a snowman and snow angels. A lot of the kid's shows that are running right now show the characters playing in the snow. So, Michael is alittle confused. It might snow this week- fingers crossed. I'll definately take pictures- maybe even video.

Anyway, Michael is doing well. He did catch a cold 2 weeks ago- so he's not 100%. He had a couple of episodes at school where he got very upset. I think one day he started throwing chairs around. What's up with that? I just have to think of it as a phase and know he will stop soon. Some parents talk about their kids banging their heads. I remember Michael doing it for 1-2 days (when he was around 2 years old). We totally ignored it and it stopped right away.

In a way, I think this is showing his progress. He is learning everyone's schedules. He wants to participate. So, when someone doesn't follow the schedule- he gets upset. I'm trying to teach him the word "maybe". This is the conversation we had tonight.

Me: "Michael, Maybe tomorrow you will go to school. Maybe you will stay home. We'll see how you feel".
Michael: "Michael will go to school on Thursday".
Me: "If you feel better".
Michael: "Michael will feel better Thursday".
Me: "If you don't, you can stay home with Mommy".
Michael "Michael will go to school on Thursday".
Me: "We'll see how you feel"
Michael "Mommy will drive Michael to school in the morning".
Me: "Dream on kiddo"....

They sent him home early today and he missed SAIL (social skills after school program). I'm surprised he didn't come off the bus crying. He was saying something like "Michael will go to SAIL next time when he's feeling better". He was repeated what the teachers told him. It worked. He was pretty calm. He just has this thing where he doesn't want to miss out.

Last night we went shopping. We stopped at Target and Michael had a gift card from his cousins Steve & Annette. I let him pick out whatever he wanted. I explained to him when we were driving there that he had $25 he could spend on anything. He was sooo good in the store, walking along side the cart. Usually he runs around like a mad man. He picked this board- magnet on one side- chalk board on the other. He played with it two nights in a row. It was a good choice. I've been trying to let him make his own choices- like clothes and toys. I think he gets a kick out of it. The trick is teaching him that he can't always get what he wants.

Chelation has been going well. We started this thing were we would get French Fries on the way and eat them after Nick put in the IV. This works well- but after he eats them- it's like the reward is given and now it's "fun time". Michael jumped up last week and pulled the IV out of his arm. He was trying to turn the lights off. It's this game to him. He did NOT like getting the IV back in his arm- so I think he learned his lesson. That's the first time he did something like that. So, no more FF before.

Last week we went to the lab and did blood and urine tests. I'm guessing the results will take about another week. Michael did pretty good with the needles. It took the staffer 25 min to get all the vials together. It took 10 min. to get the blood. Michael was running around the place (yes- turning the lights on and off). He was so bored. I don't blame him- he hadn't had anything to eat or drink in 10 hours too. We tested liver & kidney functions, as well as vitamin and mineral levels.

Well, that's about it for the latest update. The next 3 months are going to be long. Winters are pretty boring around here. Thankfully this winter we can go to the gym- Michael loves the nursery. After he is done with chelation, we'll hit the pool again.

Happy New Year

2007-01-02T13:43:00.000-05:00

So, it's 2007. I have to admit, 2006 was a pretty good year. Michael improved so much. I really think it's a combination of his great school program, chelation and suppliments.

We went back to Queens for Christmas Eve. Michael went upstairs by himself and came downstairs with a present labeled "daddy". He handed it to his father who was visiting from California. Of course the present wasn't for him- it was for my cousin's father. But, it was such a cute moment. Michael had this look on his face like "look what I found- open it".

Christmas day we opened a few presents at home. Then we went to my parents for dinner. Michael loved his aquadoodle. He played with his cousins and at dinner time he wanted to sit at the table with everyone. This is a kid who wouldn't sit for a meal 2 years ago.

We added extra glutathione the past two weeks and I've definately seen a difference in his speech. I notice other things too- like sometimes Michael says something softly or in a deep voice or with an accent. It's like he's doing voices.

The day before his father left, Michael was saying "last day with Daddy". He also said that he was sad and would be happy again on Tuesday at school. I really see him expressing himself more- being able to tell us how he feels. It will be interesting to see what his teacher says today in his communication book.

Four Month Update

2006-12-17T15:39:00.000-05:00

So, it's been at least 4 months since we started doing IV chelation with Michael. Still no visible bad side effects- unless you consider talking too much bad. Last Friday we had a typical visit. Michael sat great, Nick got the needle in on the first try, I got to sit and talk with other Moms... We are going to do some blood work in the next 2 weeks. We keep on testing his levels, vitamins & minerals, liver function, etc. These tests are done about every 2 months. Last test was done on Halloween and everything was fine.

Nick mentioned that he was going to up Michael's glutathione next week. I'm totally guessing here, but I think it will increase his speech. I still hear Michael saying more complex sentences, but honestly at this point- i've lost track. I can't remember because he keep saying new things all the time. I remember back when Michael was 3 and he said the word "cookie" for the first time. Actually, it was the first functional word he ever said. My neighbor asked him if he wanted a cookie and he said "cookie". I wasn't in the room and didn't believe my neighbor when she told me. Then, in typical fashion, Michael says "cookie" to me 2 days later and I had to call my neighbor and apologize. We had a good laugh.

Anyway, now he's saying things like "Excuse me Mommy, you need to close the door". "Excuse Me" is his favorite term right now. He says it to strangers in the store. They are like "yes?". But he doesn't have anything else to say. I'm also working with him on being polite. He screams out commands sometimes and it's rude. I need to start thinking of him as a typical kid and not let him get away with stuff. You know?

Another thing I wanted to mention is that Michael likes going to the doctors. When I mention going to Dr. Imam's, he is calm and accepting of it. When we get to the office, he runs in the front door and says "time to get weighed". He likes picking out a seat (he can chose from 4). I really think he likes to see the other 2 children that do chelation at the same time. He's getting to the point where having other kids around helps. Like the They Might Be Giants concert.

Speaking of concerts, Next week Michael is singing in the holiday concert, again. It will be his 3rd year. The 1st year (K) he sang about 30 seconds. Last year (1st grade) he sang about 5 minutes. This year (2nd grade)-- who knows? Of course I'll be videotaping it and I'll post the video on YouTube and put the link here. I'm very excited, because like the basketball- this is an event that one can compare, year after year. It's a great measure of his progress. I'm so proud of Michael. But the best thing is he is having fun.

My Giants

2006-12-16T23:25:00.000-05:00

Parents always talk about how they had "dreams" for their children. Like getting married or playing professional sports. And then when autism hits, the dreams are gone. It's very hard for parents to deal with.

I guess for me, I had a few dreams too. Things I wanted to do with my own children (after babysitting for 20 years). One dream was taking my kid to Yankee Stadium (we did that in August). Another was to take my son to a concert. When I was younger I went to concerts with my older sister and they were so much fun. I always wanted to be that "fun mom" and experience life.

Back in the late 80's, I was a dj at my college radio station and fell in love with a band called They Might Be Giants. Don't even ask me to describe them. They are kinda new wave, popish, alternative, etc. I don't know. You just have to hear them. But, they are fun and silly- which describes Michael. I started playing TMBG's cds after buying tickets to see them. Just like the Yankee Game, I didn't know if we would last 2 min or 2 hours. But, I had to be willing to drive all the way to Brooklyn (2 hr trip) and turn around and go home.

A year ago we had a surprise Birthday Party for my Dad's 70th. We had a dj and percussionist. Michael did NOT like the noise. Most of the party actually he played outside. So, the concert was a total crap shoot.

I tried to prepare Michael- showing him YouTube videos of past TMBG concerts and reminding him everyday of the date. The day before I asked Michael "who are we going to see tomorrow?". He said "my giants". close enough :)

We got to the place about 20 min before the doors opened. Michael stood very nicely online. There were many kids there. Actually, it was a kids show. A benefit for a local school. One of the lead members has a son in that school. I think a lot of people attending the concert were there more for the school then for their love of the band.

Regardless, Michael and I were ready to rock. The band comes out and starts playing- the moment of truth.

MIchael's eyes are wide. He's interested. He puts two and two together. Ohhhh- that's the band on the cd.

We spent the next 90 minutes singing, dancing, clapping our hands. It was great. His favorite song is "Dr. Worm". When the band started playing the song, Michael had the biggest smile. We lasted the whole concert and listened to the band on the way home. I really think he had fun.

I also had the chance to talk to 2 of the band members after the concert. I had Michael go up and say thanks. I told one of the guys how important this concert was- because it was a dream come true!

Basketball Video

2006-12-02T17:07:00.000-05:00

Ms. Hinton the gym teacher said before giving Michael his MVP award "This award goes to the student that I feel embodies the spirit that we display during this tournament- excellent attitude, perserverance- perseverance means they kept trying no matter what, no matter how hard it got and great skills. And this goes to Michael Heeren."

He Shoots, He Scores

2006-12-01T20:59:00.000-05:00

We had our first round of IV chelation in 2 weeks. The office was closed over Thanksgiving. Michael did well today. We did another challenge test. That is where we give him a certain amount and then test his urine. After we were done I was talking to some people in the office and Michael went to the bathroom himself. We have to collect his urine for 12 hours. So, of course I yelled a bad word. The nurse said it was ok, because it was too soon to have any metals in his urine at that point anyway. We collected the next two rounds at bath time. I think Michael actually liked peeing in the big orange thing. We have to mail it out on Monday.

When one of the moms got there, I told Michael to say hello to "Susan". He said "hello, Susan. How was your Thanksgiving?". It was so natural. I was really surprised.

Another surprise today was the basketball tournament at his school. Michael did well last year- but never scored a basket. Not even in practice. You see Michael's father and I are pretty into sports. We even met playing volleyball in Virginia. We both have a lot of natural talent and good hand/eye coordination. With Michael, it has seemed to skip a generation.

So, last night the 1st grade class he mainstreamed with had their first round game. They won by about 6 points (each basket is 2 points). On the second try, Michael got a basket. It was such a glorious moment. And a total shock to me. I know that Michael is doing well, but this was a perfect example of his success.

Then this morning they had the championship game. Michael's team lost by 2 points, but he got the MVP!!!!! They called his name and he walked up to the gym teacher and got his certificate. Last year Michael's friend and classmate got the award (for helping Michael out so well). This year HE got it.

I'm always so amazed how much the teachers and staff at this school love him. They are so proud. His classroom teacher was crying before he even got a basket. I'm so lucky that he is in a school that gives him a chance.

I'll never know for sure if it's the biomed treatments or school- but I really think it's a combo of both. You can gave the fastest, best car in the world- but if you put in cheap gas.... I was just so proud of Michael, again. I keep seeing more and more improvements and now actually believe his future will be glorious. People always say "anything is possible". It's such an overused term. But, in this case, it's true. Michael is always surprising me.

I'm looking forward to the They Might Be Giants concert in 8 days. Michael has been learning all of their songs. I think we are going to have an awesome time and I better bring tissues cause I'll probably be crying while he dances and sings with one of my favorite bands.

Here is Michael at the end of the basketball tournament with his teachers- Jackie and Gina. He is holding his MVP certificate.

Turkey Day

2006-11-29T01:09:00.000-05:00

For Thanksgiving we visited our extended family in Queens. I told Michael all week that we were "going to Queens". Of course at school he told the teachers he was "going to see the Queen". Ok. Understand that mistake.

On the way into the city, I played a bunch of They Might Be Giants songs from my ipod thru the car speakers. TMBG is a group from Brooklyn who has been around for about 25 years. I used to play them at my college radio station (when I was a dj). They are this quirky, new wave band that came out with a kid's album recently. They even do "kids" concerts. I got tickets for me and Michael for December. I know if I play their music, Michael will enjoy the concert better. It will be his first, offical "rock concert". He saw the women from "The Magic Garden"- but that doesn't really count. Anyway, the 2 hour ride in was a good opportunity to learn some TMBG songs.

Michael was great at Thanksgiving, sitting at the table with everyone. Right before we said "grace", I had Michael stand up on his chair and read the card he made in school. "Dear Family, I am very thankful for my family. I love you all. Happy Thanksgiving. Love, Michael". It was so cute. He had this big smile on his face while the 20 people around the table clapped.

Here is Michael helping his cousin blow out her birthday cake. He likes to get close to the action.

Another successful holiday. Boy that felt good. Oh, Michael did fall down the stairs at the end of the night, but jumped right up and didn't cry or even get upset. I can't tell if the kid doesn't feel pain- or is made of steele. Oh ya- A few family members (who see Michael about 3-4 times a year) said they REALLY see a difference in his progress. I keep getting these looks of surprise from everyone. Just wait until he is recovered- ha.

For the next week Michael requested TMBG songs in the car and the bathtub. He likes this one song "Dr. Worm". I'm really getting excited about the concert. He is actually walking around our home humming their songs. There is some footage on YouTube of their concerts too- so Michael and I sat today and watched them. I'm hoping he gets used to them as much as possible so the loud noise doesn't bother him- sometimes it does.

Also- I haven't been posting that much lately. I guess because Michael has been doing so many new things, I've lost track. We did miss a week of chelation (for the first time). The office was closed for 4 days.

Still no big side effects from the chelation. Michael has been alittle stimmy lately, but that might have to do with the weather and it getting dark so early. He's always been affected by the seasons.

The other day we were standing outside waiting for the bus and Michael is running his finger along my car window. You know how it gets wet in the morning and you can write words or draw pictures? I asked Michael to stop and he wouldn't. So, I wrote the word "no". He laughed. I couldn't believe he laughed. Then he wrote "yes" next to it and circled it.

Another first on Saturday. I had to videotape a wedding and hired a new babysitter (everyone else was busy). She's the aunt of a good friend and has family members with autism. Michael went to the indoor playground and the movies with her. The next day he said "Ann Marie is fun". This was the first time in 7 years he was with someone who wasn't a family member or friend. And he did great- I was so proud. I'm glad they both had fun.

Michael has his basketball tournament on Thursday. 8:45pm (right before bedtime- nice). I'll take plently of photos and video (like last year). I hope he gets a basket. Last year he wasn't even close.

Christine

"I like to _____"

2006-11-13T01:52:00.000-05:00

Sunday, Nov. 12th, I'm sitting with Michael at my parent's kitchen table and I make up a "worksheet". I write down a bunch of math problems or fill in the blanks- like school work. Michael actually loves things like this. So, tonight I write these sentences:

1. My name is _____
2. I like to _____
3. Grandma is _____

For number one he writes "Michael" (excellent). For number two he writes "talk". TALK? WTF. And he came up with the answer so quickly. Here is a kid who didn't call me "mommy" until he was six. Unbelievable. Oh and for the last one, I read "Grandma is blank" and he wrote "blik". LOL. He was trying to write the word "blank". He didn't understand I wanted him to fill in a word. But, the best part he is tries to sound out the words and write them.

Anyway, Chelation went great last Friday and it only took one try. Michael sat so well. It was Veterans Day and Nick, the nurse who does the IV's is a Vietnam Vet- so Happy Vets day to you Nick!

I've seen a big difference in talking the last few days. I was thinking recently that he hasn't surprised us much in the last 2 weeks or so, but the last couple of days- I see it. We went shopping at the mall on Saturday and then visited friends (who have 3 boys with autism) and Michael did soooo well.

The other day I came home and Michael screamed "Mommy's home. I love you" and opened up his arms for a hug. I tell you honestly, it was like a dream. A real dream. I wish I had it on video because I would loop it on this website and watch it all day long.

Final note- we got Michael's blood work back from the lab and everything was perfect. His liver and kidneys are working fine. We should be doing another challenge soon.

The Dunkin' Donuts Mystery

2006-11-06T20:07:00.000-05:00

Michael's latest thing is reading signs. We drive down the street and I hear him saying "Wal-Mart, McDonalds, Burger King...". Then one day he says "We have to go to Dunkin' Donuts". I ask everyone who babysits him "have you taken Michael to Dunkin' Donuts?". No one admits to it.

Does he pick things up from TV? from other people? could he be reading on his own? I hear him sounding out words all the time. Which is a really great sign. I love to see him progress. I tell him a word, he thinks about it, and then he says it a few times.

On Friday, I picked him up from school, so we can drive directly to Dr. Imam's for chelation. He wouldn't leave. He wanted to say goodbye to EVERY child that was being picked up. There were about 20 of them. As the parents came up to the desk, they would say "i'm here to pick up Sally". Michael would then yell (across the hallway) "Goodbye Sally, have a nice weekend, see you on Monday". Some of the kids turned around and responded. It was just so weird. But, in a good way. In a great way actually.

Sometimes we go to the park and Michael sees a kid from school. Many times he knows their names. There have even been times when we go to a store and an adult comes up to me and says "I know Michael". He always remembers their name and then has this total look of confusion. Like "why aren't you in school?".

Little things like these fill my days now. I see them as progress. As part of the bigger miracle. Last week we went for a blood test (chelation thing) and he sat soooo well- best ever. Then on Friday he sat really well for Nick (Dr. Imam's nurse). I didn't even have to sit with him when he got the needle.

Tomorrow is election day- no school! Michael has been telling me about it all week. I'm really enjoying the time we have together. Don't get me wrong- I always have. Since the day the kid was born he was by my side. He's my only child. And I'm his only Mom. But, the reason why i'm enjoying him more is because we're understanding each other better. We are able to enjoy typical activities- going to Yankee games and movies. We going to a They Might Be Giants concert in December. I'm really looking forward to all the things we'll do in the future. Possibilites seem unless these days.

I really think the reason why both of our lives are better is because of the all the biomedical treatments in combination with his staff at school. I know they are both important parts of his progress.

I posted a video on youtube of Michael, if you would like to see him talking & singing in the bath.

"If He Can Make it There..."

2006-10-22T15:05:00.000-04:00

On Saturday, October 21st Michael went into New York City for the first time in 5 years. We live about an hour east of the city. Back in July of 2001, we were crazy enough to take the train in with the big stroller. Never again! I had to carry that stupid thing up and down a million flights of stairs in the subway. I don't know how people in wheelchairs do it. New York City is not a "handicap friendly" city. We were so determined NOT to take the subway back to Penn Station that we walked 40 blocks North, in the rain. It was actually a nice walk- right up 5th ave. But, I never took Michael into Manhattan again. Well, until yesterday.

Like I've written before, Michael has a new friend from Nigeria who we met at Dr. Imam's office. He's 9 years old and has autism also. The boys play so well together and I wanted to get the family out of the boring hotel room. We ended up driving in around 1pm. The traffic wasn't bad and after a few u-turns, I found a parking garage. The family wanted to go on a carriage ride in Central Park (something I've never done) and Michael had fun.

Then we walked a few blocks south to Times Square. We went to this HUGE Toys R Us with a Ferris Wheel inside. It was really a sight to see. Michael enjoyed the store and went on a ride.

One thing we did was make a personalized puzzle. Michael picked out which picture he wanted and which background. I knew he would pick Dora and Diego. The kid is obsessed. He actually says frequently "mommy, abre the door". Did I spell that correctly? It's the spanish word for "open".

Michael really enjoyed the lights in Times Square when we got out of Toys R Us and it was dark. We ate dinner at Planet Hollywood. Which if you haven't been there before, is the noisiest restaurant on the planet. There were about 10 large screen televisions on the walls and the music was pumping. Definately don't bring your autistic child there if they are sensitive to noise. Michael was amused by it all. We ended up leaving the city around 9pm and Michael fell asleep in the car on the way home.

It was a nice trip. The boys had fun. Michael wasn't overwhelmed with the city and actually seemed entertained by it. The high buildings, beeping horns, big buses, crazy taxi cabs, bright lights. It was also nice to be able to enjoy the city. On the walk back to the car, we stopped at Starbucks and Michael was so interested in reading the sign in the window. He walked around the store, finding the word Starbucks on everything. I helped him sound out the word coffee. Today he was wanted to see the photo I took of the sign and was drawing it in his notebook. He really is learning all the important things in life :)

I asked Michael to draw the logo and this is what he did.

Chippendales Chelation

2006-10-22T14:31:00.000-04:00

Michael has various sensory problems. He won't eat regular food. He hates to touch the cats. One issue that has changed over the years is his clothes. He used to be able to sit in his own poopy diaper for hours and not care. Now, if the kid gets a drop of liquid, pee or poop on any article of clothes- off it goes!

So, this past Friday (October 20th) we go to Dr. Imam's office for chelation and 5 min. into it, Michael drips orange juice on his shirt. He didn't seem to care about being half naked and of course, it made for interesting pictures. By the way, this week Michael sat really nice and Nick was able to get the needle in on the first try. I think that was the first time it didn't take multiple times.

This week Michael's teacher wrote even more good comments "Michael is a sponge. He has been talking up a storm. His descriptions of things are so amazing. I see such a difference in him from last year, as well as from this summer! He is becoming more social too!" She also wrote how on Friday "he was making fun of his friends".

Oh No! He Understands Holidays Now

2006-10-22T14:04:00.000-04:00

Ok. First let me explain (for those who don't know me personally) that I'm not a big holiday person. I have a catholic mother and a jewish father. Michael and I are Unitarians. nyway, Michael used to go to the UU church in Northville with me until he was about 3 years ago. Everyone was very supportive from the church when we got the diagnoses at 2.5 yrs old. We stopped going when I realized Michael was disturbing the service. In a room with 40 people, you really can't have a kid running up and down the aisles screaming.

Our past experiences with Holidays include a crying fit in the arms of Santa when Michael was about 1.5 yrs old, Christmas 2000 and 2001 with Michael stimming off the wrapping paper and not wanting to open his presents, a horrible Halloween experience where I had Michael collect money for the Red Cross in Oct 2001 and people complained (after 9-11) and Michael freaking out from Fireworks.

In a way I was happy that he didn't understand holidays- then I didn't have to fake my way thru the last 7 years. I tried. I put in effort. But, I just got to the place where I thought "wow- this isn't so bad". I celebrate different holidays from most people- first day of school, last day of school, spring training, world series, election day, first days of spring & summer and of course, the beginning of the fall television season. I was even excited to see what new shows would be on Noggin this fall.

Ok, back to Michael. So, now that he is understanding more and participates in activities at his typical school, Michael now understands holidays. And not just the big ones. He can tell you what day is Memorial Day, Vets Day, Columbus Day and "the Jewish Holidays" (as he calls them). He is very interested in seasons, weather, days off from school, etc. He walks around saying "tomorrow it's going to rain- no school, vacation". He's also very into his pumpkins and brings them inside when it rains.

Then he sees some children's videos about Christmas and all he talks about is Santa is coming on December 25th and it's going to snow. NO!!!!!! Presents, Tree, Santa, Snow---- HELP! He singing Christmas songs- and it's October. Wait. MY KID IS SINGING CHRISTMAS SONGS AND WANTING TO SEE SANTA. Holy crap- it's typical behavior. It's progression. Wow. This is a big thing. And it's good. So, I'm going to take all the Christmas stuff out of storage and decorate this year. I'll keep you all posted on how it works out. Wish us luck ;)

What a Weekend

2006-10-16T11:05:00.000-04:00

This week we had our chelation appointment on Saturday, instead of Friday. Dr. Imam and Nick (who does the IV's) went to a training conference with Dr. Buttar. He's the doctor who came up with the chelation schedule that we use and used chelation to help his own son with autism.

Michael did really well. It took Nick 2 tries, but the second try was done in 6 seconds. I was counting outloud. There were some new kids getting chelation and Michael was VERY interested. He was actually standing over Nick, narrating the whole process "Put the rubber band on the arm, rub the alcohol", etc....

After the session we went to a birthday party. We actually got there early and Michael just hung out and watched the other parties. He started playing with other kids, following them around (as usual). Then, at the party he befriended a boy who said to his mom he had a new "best friend". Oh, that was nice to hear. Michael sat great, followed with the group, and I barely had to watch him. Parties are so much more enjoyable now.

Then on Sunday we went to the gym (yes, the gym) and then visited our friend from Nigeria at his hotel. Michael was stimming a little off the squares in the carpet (what's up with that). He does it just on that carpet. It's weird to see because when he was 2-4, he would eye stim ALL THE TIME. Now, I rarely see it. So when I do, it's kinda shocking.

The day got better from there. We stopped off at the open house at the Middle Island Fire Deptartment. I had Michael do this thing where he went into a "burning" building with 4 other kids and had to escape thru the window. There was fake smoke and everything. Michael was pretty scared. But, I was thinking that this was something he'll never forget and it may save his life one day. I don't think he was scared of the fake fire or smoke- but he was thinking "why am I going thru the window?".

After surviving the fire, we went to my dad's for his 71st birthday party. MIchael's cousins (age 7 and 12) were there too. The boys were actually playing. Michael made up worksheets for Nicholas. They also started throwing a ball around. I really felt like it was the first time they played TOGETHER. Again, great socialization and talking. We are still giving him the Glutathione pills each morning.

Christine

New Blog

2006-10-15T16:48:00.001-04:00

I started this blog on my myspace page about 2 months ago. But, decided to switch it to a more traditional blog, so I could add photos and video as I get them.

Thanks,
Christine

Sitting Right there in the Cabnit

2006-10-15T16:48:00.000-04:00

Friday, October 13, 2006
Sitting Right there in the Cabnit
Current mood: pleased

Sitting right there in the cabnit is a bottle of Glutathione that I bought probably 6 months ago. I had heard about Glutathione at autism conferences, but didn't really understand it. About 10 weeks ago we started chelating and using Glutathione. After each IV treatment, Michael would talk and sing the whole way home. I always had a feeling that the Glutathione helped him process and speak better.

So, on Tuesday, I was looking thru one of my kitchen cabnits. It's your typical shelf, but with rows and rows of suppliments. Sometimes I try things and they don't work. Or I get samples. Some bottles are suppliments I bought, but were afraid to try.

I noticed a bottle of reduced Glutathione from Kirkmans and thought "what the hell". He seemed to do better with the weekly IV, maybe taking the pills during the week will help. Wed, Thurs and Friday he got pills in the morning with his usual mixture of organic babyfood bananas and the worst tasting suppliments in your life (MB12, Vit. C, Fish Oil/Coromega, SuperNuThera, SNT Companion, MSM, TMG & Probiotics). He usually chases the stuff with OJ and some Gorilla Munch (gluten/casein/soy free cereal).

So. This is what his teacher wrote on his communication sheet today (fri) "Michael has been talking like crazy. He has so much more language than ever before!" Wow. Is it the new pill of Glutathione each morning? Maybe. I guess only time will tell. But, it was so amazing to get that note today.

I spent the morning at a breakfast with 600 people in the community- community of the disabled that is. There were people with Downs, MR, wheelchairs, autism, you name it. The panelists were talking about group homes, respite care and job training. I'm sitting there thinking "my kid is 7. I can't think about this now". Not because I don't want to plan for the future. I know parents have to do a lot ahead of time. It was more because I'm still hoping my son won't need these services. I still believe he can recover and lose his dx.

I sat at a table with an adult with MR (I think) who was put in an institution at the age of 2 (Kings Park & Pilgrim State). He's doing pretty well, living in a group home and working a job he enjoys.

Also at our table was a couple. They live in my hometown and have a 40 year old son with autism. The mother was telling me about how bad the services were back then. I could tell this woman has told this story a million times and is haunted by it. The dad just sat there with this glazed look in his eyes. None of us signed up for this. It's not easy. I tried to thank her and said "because of people like you, my son is getting the help he needs".

Is this how it works? people have to suffer? little children are put in pysch wards, parents are left to do everything themselves.... Does it make them feel better to know that the situation is different today. Oh, great. Now they can say "why you and not me?".

Why I am so lucky to have a child with autism in 1999? That's funny. Most people probably ask themselves "why did I have a child with autism?" and I'm asking "why I am lucky?". Isn't that weird. I never, ever thought this situation would make me feel lucky. People used to tell me that Michael was lucky to have a mother like me (since I worked with children with autism 10 years ago).

But then, something happened this afternoon. Michael gets off the bus, I read his comment from this teacher and I just didn't know who to call to share the good news. If I tell a fellow parent, I have to make sure not to hurt their feelings. If I tell a friend who doesn't have an ASD kid, they don't REALLY understand. I left a message with Michael's father. And then I called Julia.

(Nicole, Baxter, Julia and Christine at the LIAF&C)

Julia lives in California and has a son who is recovered. We were born the same week in the same state and both have 7 year old boys. One with and one without Autism (for now). Julia and her son are such an inspiration to me (and Michael). They both spoke at our conference last April. I watched the DVD the other day. It gave me renewed hope. I said to Julia "I feel like I'm in a limbo right now".

We are in between two worlds. But, I want to be in Julia's world. I want to have a child who is independant. I want to cherish each word, each friend, each ballgame, etc....
I met a mom today at that breakfast whose 19 year old son recently went to his high school prom. He now attends a community college. She showed me pictures. Guess what his name is? Michael

Thanks for traveling on this journey with me and my son. I really think we are witnessing a miracle. Please send positive thoughts and prayers our way... and to all of those other parents who feel hopeless right now. Thanks.

Big K-Mart

2006-10-15T16:47:00.001-04:00

Saturday, October 07, 2006
Big K-Mart

We had a good day today (Sat). First, we went to see a children's concert by Carol & Paula of the Magic Garden TV Show. Honestly, I think I enjoyed it more than Michael. Probably because he didn't know any of the music and I was such a TV addicted child that I probably thought these women were family (and Michael Landon was my dad-lol).

Anyway, after the concert I dropped Michael off at my parents to spend the night. Michael had his Magnadoodle and he kept drawing BIG K with a line under it. You see, we live in Middle Island. Our complex is across the street from the Big K-Mart. Well, I should say the former K-Mart. In August, they closed the store and took the Logo off the building. That is what Michael was drawing. He kept saying "the Big K-Mart is closed". My mom was sitting there with me and I asked Michael "do you like K-Mart or Wal-Mart?" (the Wal-Mart is down the road from us). He says "Well, the K-Mart is closed, so we need to go to the Wal-Mart". It was so perfect. My mom says "he's smart".

Then he starts writing some words on the board. AI ABALES 20 BERSLIN (something like that). My mom and I are trying to figure it out. Michael keeps pointing to the words and says "the K-Mart is closed'. It means something- but what? I'm asking him questions. He writes the same thing again on a piece of paper. He's putting his fingers on the words- trying to sound them out (it was so cute). finally, it hits me.

"Available for Lease- Breslin" There is a big 50 foot sign on the building right over the spot where the Big K-Mart sign was. I wrote "Available for Lease- Breslin" and Michael re-wrote it on the paper. I noticed his handwriting was better than mine (lord help me).

On the way home, I looked at the building and see the sign. It says "Available -phone number- Breslin" Michael didn't know the phone number, but he put some numbers in there anyway. The word "lease" wasn't even on there (i remembered it wrong). But, there is another sign by the road that says "lease". Anyway, this whole situation really shows how Michael is reading, remembering, putting things together, trying to communicate, sounding out words, etc.

Sometimes I try to figure Michael out and my mind races with all these complex possibilities. But, his actions were quite simple. He never got frustrated. He kept trying to write the words over and over. I just didn't see these things a year ago. He has really come a long way and there is still soooo much to learn. On both sides.

Christine

Don't even ask about the cast

2006-10-15T16:47:00.000-04:00

Friday, October 06, 2006
Don't even ask about the cast
Current mood: aggravated

Today we got to Dr. Imam's around 4pm. Michael sat really well and it took 2 tries to get the IV in. The only problem this week was the needle was so high on his arm that he had to keep it straight. Anytime he bent his elbow, the drip would stop. This slows the process. I kept saying "michael, please keep your arm straight" but he was busy playing with Dana's old Magnadoodle (the kid can sit with one of those for hours). After about the 10th time of asking him to keep his arm straight, I jokingly asked Nick "do you have a cast we can put on his arm?". Nick actually had one- so we taped it to his arm. It was more of a half cast. It didn't really work- but good try.

Michael was getting a bit ansy towards the end. I think that was because the other child there was watching Barney. Michael has never been a big Barney fan. Next week I have to remember to bring my laptop and dvd's for Michael.

Oh ya, Michael got Ringworm this week. It's not actually a worm, but a fugus- like yeast. He had alittle circle on his neck. He didn't even notice. Of course he noticed when I had to put the cream on him. I'm glad it didn't get bad. I saw some pix on the internet that were plain gross.

Well, overall the chelation is going fine. Michael is talking more and more each day. We got a script for blood work- which we'll do next week. We are going to check his liver and other levels. I love doing tests. Well, it's not the needle in MY arm, so I can say that. But, I love getting data back on Michael. It's proof. You know? So, when someone says "how do you know it's the chelation that recovered him?" I can show them the urine tests....

Thanks,
Christine