Progress Report- Fall 2008

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

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

To read about our Summer Road Trip please visit:

http://www.heerenroadtrip08.blogspot.com

Thanks,
Christine
currently in AZ

Summer Poetry

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

Conversations with Michael

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

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

Green Our Vaccines

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

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

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

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!

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!

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

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

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

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

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?

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

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"

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!

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

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

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

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

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.