Sunday, December 17, 2006

Four Month Update

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.

Saturday, December 16, 2006

My Giants

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!

Saturday, December 02, 2006

Basketball Video

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."

Friday, December 01, 2006

He Shoots, He Scores

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.

Wednesday, November 29, 2006

Turkey Day

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.


Monday, November 13, 2006

"I like to _____"

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.

Monday, November 06, 2006

The Dunkin' Donuts Mystery

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.

Sunday, October 22, 2006

"If He Can Make it There..."

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

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

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 ;)

Monday, October 16, 2006

What a Weekend

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.


Sunday, October 15, 2006

New Blog

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.


Sitting Right there in the Cabnit

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

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.


Don't even ask about the cast

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....


Inspector Michael

Saturday, September 30, 2006
Inspector Michael
Current mood: exhausted

What a day today. I picked up Michael from school and did our weekly visit to Dr. Imam's office. Michael sat pretty good for the needle and again, sat for about 2 hours with the IV fine.

About 5 min after he was done, Michael started walking around the office. He goes behind a wall where items are stored and says something like "No wonder if you can't find anything Nick, your workshop is a mess". The whole room started laughing. Gotta love Michael- honest to a fault. ( I also asked my friend if she ever heard Michael say that and she said he got part of it from a Franklin video- but he definately put a couple of ideas together).

Then we went to my sister's for a party and Michael was awesome all night. He played with this kid Jonathan (who used to hate him). They were chasing each other, hugging, laughing, screaming... It was so cute. Michael wanted to sit at the table for dinner (he never really did that before this year). He also said a few new statements while there. The house was full of people- probably 40. About 5 people came up to me and said "michael is doing so much better". These people remember 4-6 years ago when Michael would sit in the boy's room and watch the ceiling fan- for hours and not play with any kids.

Michael was so at ease- so happy to be around the other kids- listened so well. It's like I'm at the point where I do have to worry about him. I know he won't run out the door or play with knives. Best of all, the other kids look out for him, give him toys to play with, they understand him. They try to include him. They don't make fun of him. We are all really lucky.

Oh ya, we got our 2nd urine test back today. We do it every 8 weeks. Michael had high levels of aluminum again, less lead (which is a good sign) and same amounts of most of the other stuff (mercury, arsenic, etc). Again, we haven't seen any negative side effects. No stomach or gut problems, no increased yeast, sleeping fine. He did very well in school this week. Overall- going great in my opinion.

I think the best part of the night for my mom was when Michael came running over to her and gave her a BIG hug. I think as time goes on, we will see more and more improvement- or miracles as I like to call them.

Take care everyone and thanks for reading my blog.... Christine

Social Butterfly

Thursday, September 28, 2006
Social Butterfly
Current mood: tired

Wow. I think my son is turning into a social butterfly. You know, one of those people who talks to everyone.

This past week we've been hanging out with a family from Nigeria. They are here to do chelation on their 9 year old son. We met them in the office last Friday. They are really nice and stuck with not much to do on the off days. So, Michael and I have been taking them places- the outlets, Fun4All playground, Health Food Store, etc. Anyway, it's so cute to see Michael with the boy (who he actually calls "boy" because it's hard for him to say his African name) playing together. When we went to the outlets, they were holding hands and wouldn't leave the store without each other. Seriously this is amazing, because a year or two ago, he wouldn't care about other kids.

Michael has this thing where he likes to follow other kids around- especially in the playground. Sometimes he finds a kid who likes the attention. Usually I hear "stop following me" a hundred times. Well the boy from Africa doesn't mind Michael following him- so of course they are like best friends now. Michael is very easy to please :)

Then last night (Wednesday) I left Michael with my Best Friend Nicole and her two kids (5 and 7). Nicole told me that the boys were playing and Michael was very social. He also cleaned up, ate dinner with the family, and had a good time. She said he seemed much better since June (when they had a pool party in the backyard). Honestly, Nicole's son, Kyle, used to be scared of Michael because he went thru a period of knocking kids down (thanks to Calliou) and now he's not scared. Which really means a lot to me. For those of you who don't know Michael, he's a pretty cool kid to be around. He loves to snuggle and give hugs. He's silly and many times just breaks into song. I hated that Nicole's son was scared of him. I understand it- because Michael did freak him out a few times. But, they are getting along. Even at Michael's 7th BD party in August, Nicole's son sat RIGHT next to Michael at the table and gave him a big hug.

So, as the days go on I see more and more improvement with Michael. I can't say for sure if it's the chelation or glutathione. I guess it doesn't matter- as long as he's getting better.

One thing for sure, as the days go on I'm more and more grateful that I have a wonderful kid. Autism or not, he's "the best".


A Challenging Day

Friday, September 22, 2006
A Challenging Day
Current mood: thankful

Ok. From my title you would think that it was a hard day at the doctors. But, it wasn't. Today we did a "challenge test". We give an amount alittle more than usual of chelation and then test Michael's urine for 12 hours. It's the same amount we gave the first week (8 weeks ago). The results will tell us if he is getting rid of certain metals. His Lead and Aluminum were high last time. I can't wait to see the next results. The peee goes in the mail Monday and the results may be available on Friday (the next dr. visit).

Michael did really well today. First, he sang Maroon 5 songs the whole way there, looking into the mirror and making funny faces. There was a new kid in the office. He and his mother came all the way from Africa to do chelation. WOW. I got all the info from themom and I hope to spend some time with them while they are here. I'm trying to find them a therapist too.

Anyway, Michael sat pretty well (like the first couple of weeks). He said "no spray", so Nick didn't use the spray. The spray numbs the area so he doesn't feel the needle going in. I think Michael doesn't like the spray because it's cold. It took 3 or 4 tries to get the needle in and working. I didn't have to sit with Michael this time. And, of course, once it was in he sat for like 2 hours and played with 2 MagnaDoodles.

Michael got pretty tired at the end of the session. In the car I didn't hear much from him. Then I saw some horses in the back of a truck and I said "Look- horses". Michael paused and then added "they are going back to the farm". I thought that was so funny. Then when we were driving down and up a hill- Michael was saying "down, down, down, up, up, up". I NEVER heard him do that before. Then in the bathtub, he was talking and singing for like an hour. I definately see improvement everytime we use the Glutathione. Interesting.....

Well, Chelation is going well and both his dad and I are working hard to pay for it. I'm working on next year's conference, which will be Oct. 20-21, 2007. I'm very excited and we're having it at a beautiful hotel next year. I hope by then Michael will be able to give a speech or something- at least say the pledge. Who knows- It's 13 months away.

Thanks for reading my blog and making comments. I'm so grateful for Michael's progress. Everyone has been working so hard.


The Day After

Saturday, September 16, 2006
The Day After
Current mood: mellow

I keep noticing the day after Michael goes to the doctor he seems to talk up a storm. We spent all day together, playing and watching tv. Michael actually WANTED to watch the Yankee/Red Soxs game. Which, of course, made me VERY happy. We also spent some time looking things up on the internet. I did a YAHOO search of trees and snow. Michael is very into the change of seasons and keeps talking about the snow. He was looking at the photos on the computer screen, saying things like "that is winter. there are no leaves on the tree" and "The trees are blowing in the wind".

It's hard to describe, but I see a difference in him. I was talking to this Mom the other day (she has a kid with ASD) and she said something like "you know how in the past you thought your child was improving, but he wasn't?". She was talking about her own experience, but I really couldn't agree with her. I felt kinda bad to say "well, actually Michael shows a lot of improvement and it's real. Other people see it too".

I have some other friends whose children are SLOWLY improving. Some of them can't read or write. This amazes and confuses me. Why can Michael read and write and not their kids? What is it about my son's brain? Is it genetics? Is it the suppliments? Many of them use suppliments too. OK. So, I get it. It's random. There is no reason to any of this.

So, how do I encourage other people without "bragging and showing off"? How can I be a proud mom? I'll tell someone with typical kids my son said whatever- and they don't get it. I tell someone who has a kid with autism my son said whatever- and it hurts their feelings. So now people can't be happy for each other? It's a contest? It's a race? And it's not about who tries harder or spends more money- because I've spent a lot less money than some people- and their kids have progessed very little. Then I know some parents who dedicate their lives to their kids- some are still affected- others are recovered.

I wonder if parents who have children with Cancer go thru this. It must be just a part of the human condition. I guess I just need to focus on my son and not worry about what everyone else thinks (ha- easier said then done). One thing that I try to practice everyday is visualizing the future. I think about Michael graduating HS, getting married, etc. I have to. If I can't see something, I can't make it happen. So, that's my plan. And for the rest of it- it's luck. Wish us Luck :)

Don't forget the cold stuff

Friday, September 15, 2006
Don't forget the cold stuff
Current mood: content

Today we had another visit to Dr. Imam's office for Chelation and Glutathione. After talking to a friend, we realized that the last couple of weeks we didn't use this cold spray that numbs the area where the needle goes in. We used the spray today and got the needle in. It did take three times, but the 3rd time was definately a charm and took about 5 seconds. I hope Michael put 2 and 2 together and now understands that it hurts a lot less if he stays still. Of course, the rest of the visit he sat there, eating, drinking, watching Letter Factory and playing with the Magna Doodle. He was pretty mellow during the visit. When he got home he was talking a lot (like he usually does after). It was raining today and he was talking about it. He's been alittle obsessed with the weather lately.

During the week his teacher said he was alittle unfocused and calling out- but I think that had to do with the rain and seasonal allergies.

Sometimes Michael calls me "mother" which sounds so funny to me. I keep thinking of that book "are you my mother?". After living in Virginia and having the nickname in college, I always wanted my kids to call me "mama". Now I get "mother" and "mommy" and sometimes a "mommy christine". Hey- you know what? I'm just so happy my kid talks. I wouldn't care if he called me "mud".

Can't wait for the Red Soxs/Yankee series this weekend. Please stop raining.

thanks, Christine

Sing, Sing a Song...

Friday, September 08, 2006
Sing, Sing a Song...
Current mood: tired

Today we did another round of chelation and glutathione. My mom came with us. She's the 3rd person to come and watch. I think everyone is curious. I think they also want to be there for Michael- who is much loved.

First, I wanted to point out that school started on Thursday. Michael transitioned beautifully. He has the same teacher, but they are in a different classroom. I think there is a new student in his class, and some of the assistants have changed (get well gina). I stopped by the first day to give the nurse his Epi-pen and to bring supplies the teacher asked for, and Michael came walking down the hallway, saying hello to everyone. I actually heard him ask "how are you?" to one of the teachers. I've NEVER heard him say that unprompted before. His teacher also said Michael seemed to improve after his 3 week rest from school.

OK. So today was like last week. Michael didn't take the needle well, but the process was quicker than last time. We had to change the time from 3:30 to 4:30pm. The bus dropped him off around 4:05pm. So, because of the later start, the session seemed to last forever. Thank goodness for the TV/DVD in the office.

I think it really helped to have my Mom there. She met Nick, who does the IV's and saw that he knows what he is doing. She also saw another child in the office doing chelation too.

On the way home, Michael was singing, loudly, the whole way home. It was like he was happy. Then when Michael's Dad called, Michael started talking about him, in full sentences. Repeating phrases he already knew- but saying them so perfectly.

Well, overall, I think the process is going well. I do see Michael improving everyday. He's still happy, silly, and full of surprises. I look forward to the next challange test, where we will see the level of metals coming out of him.

Thanks for reading our blog :)


Mixed Day

Friday, September 01, 2006
Mixed Day
Current mood: tired

Today we had our 5th visit to Dr. Imam's office for IV Chelation. Usually it takes about 2-5 minutes to get the IV in Michael. Today it took 20 min and 3 people to hold him down. I don't know why he was so upset. Afterwards, he sat wonderfully for 90 minutes- no problems. I really hope next week he does better. I hate to see him so upset.

He had a good week- talking and playing. Of course, I see him getting better and better- but I'm alittle biased. But, other people are saying things to me. About how well he is doing. I'm very proud of him. We went to this amusement park called Adventureland yesterday. Michael waited on line and went on a ton of rides. There was one point, when Michael was waiting in line for the ladybug rollercoaster and I sat on the bench waiting. I didn't even feel the need to keep my eyes on him every second. It was as if he was a typical child. He ran from ride to ride- kind of skipping. He does this when he's really happy. It was so cute. I'm glad we went and he was able to enjoy it soooo much.


"Mommy, put your seatbelt back on please"

Monday, August 21, 2006
"Mommy, put your seatbelt back on please"
Current mood: impressed

Of course I don't know 100% for sure that the Chelation or Glutathione is the reason, but Michael is talking up a storm. Today he said to me "Mommy, put your seatbelt back on please". I had to take it off for second and when I put it back on, he said "thank you". He just REALLY seems to be talking more- complete sentences- more natural talking. I just never know what is going to come out of his mouth.

We were at the book store today and I told Michael he could go into the boys bathroom by himself- for the first time ever. I walked into the lady's room. He walks in and I ask him "aren't you going to go in the boy's room?". He says "Michael use the boy's room on Aug. 25th". That's the day his father is going to visit- and he is the only one who takes him in the boys room. He usually goes in the lady's room with me.

I couldn't believe he connected all those actions. Also, when we were at the bookstore with my 2 friends, Michael kept saying "let's go Dory". He was very aware of the 2 other people we were with and didn't want to leave them behind. Usually he couldn't care less- every man for himself. Oh ya- and right before that we all went for Thai food and Michael sat at the table for the whole meal- eating his food and playing with a magnadoodle. It was one of the best times at a restaurant.

I'm just so proud of him- he's dealing with everything so well.


Third Round - Interesting

Friday, August 18, 2006
Third Round - Interesting
Current mood: shocked

Today we did the third round of chelation, plus we added Glutathione. Here is some information that can be found on the website


Glutathione helps to defend the body against damage from cigarette smoking, exposure to radiation, cancer chemotherapy, and toxins such as alcohol. As a detoxifier of heavy metals and drugs, it aids in the treatment of blood and liver disorders.

Glutathione protects cells in several ways. It neutralizes oxygen molecules before they can harm cells. Together with selenium, it forms the enzyme glutathione peroxidase, which neutralizes hydrogen peroxide. It is also a component of another antioxidant enzyme, glutathione-S-transferase, which is a broad-spectrum liver-detoxifying enzyme.

Glutathione protects not only individual cells but also the tissues of the arteries, brain, heart, immune cells, kidneys, lenses of the eyes, liver, lungs, and skin against oxidant damage. It plays a role in preventing cancer, especially liver cancer, and may also have an anti-aging effect. Glutathione can be taken in supplement form. The production of glutathione by the body can be boosted by taking supplemental N-acetylcysteine or L-cysteine plus L-methionine. Studies suggest that this may be a better way or raising glutathione levels than taking glutathione itself.

Glutathione is not technically an amino acid, however, due to its close relationship is normally groupedwith the amino acids. Most glutathione is found in the liver where it detoxifies many harmful compounds to be excreted thru the bile. Some glutathione is released directly by the liver into the bloodstream where it helps to maintain the strength of your red blood cells and also protecting your white blood cells.

Glutathione can also be found in the lungs and in your body's intestinal tract system. It is required for carbohydrate metabolism. Glutathione also appears to have anti-aging effects by aiding in the breakdown of oxidized fats that may contribute to atherosclerosis. As we get older glutathione levels in the body get lower and this can cause an increase in the aging process. Thus glutathione supplementation is useful to prevent this from occurring.

Glutathione deficiency maybe indicated by: coordination problems, mental disorder, tremors, twitching, nervous system disorder, and difficulty in balancing. Currently, believed to be caused by lesions in the brain.


Now, after the 2 hour doctor visit, we went to my sister's. Michael was sitting on my lap and pointed to me and said "Mommy is a mother". I have never heard him say this before. Then I told him he could play downstairs (by himself). All the kids were in the pool. I didn't want him to swim after doing the IV. He made a comment about how he didn't want to go downstairs alone because all the kids were outside. Usually, he runs down there and plays with the toys (aka lines up the cars). He actually had tears in his eyes. That was weird.

The past week he seemed to be talking more and after today's treatment- I really felt a difference. I'm very hopeful that the chelation is working and I'm very grateful to Dr. Imam and Nick and especially my friend Tina, who introduced me to Dr. Imam and attends the appointments with us (her daughter is getting chelated also).


ps- this morning he woke up and said "Michael and Mommy had fun at the Yankee game yesterday".... amazing

Michael's First Yankee Game

Thursday, August 17, 2006
Michael's First Yankee Game
Current mood: satisfied

If you don't know me personally, it's hard to understand my love of the Yankees. I was about 8 years old when I started watching games. Every year my parents would take me and my older sister to a game. One time I caught a ball in batting practice and got signatures from Don Mattingly and Tommy John. In college I interned for a triple A team in Buffalo and also kept score for the Cortland State team for a season. I don't know how college players do it. I pulled a 2.0 that semester- I just attended the games (not the practices).

Anyway, I always dreamed of bringing my kids to Yankee Stadium, teaching them about baseball, maybe even have them play in the Major Leagues. For the longest time my son with autism couldn't say the word "baseball" let alone play the sport. Parents always come up with "dreams" for their children- but most of the time, it's better those kids find their own dreams. This was definately one of those situations.

Michael was born in August of 1999- the Yanks won the World Series that year. I remember being so tired and falling alseep during the Series, but thinking it was a good sign that they won the year he was born. They also won the day he was born!

So, my plan was to take Michael to the Stadium as soon as he understood the game. Well, time went on and by 3 years old, Michael couldn't sit still, listen to instructions or tolerate VERY loud places. I didn't know if I'd ever be able to take him and felt bad that I didn't take him when he was 1 or 2- before the autism REALLY kicked in.

Last year, when Michael was almost 6, we went to 2 Long Island Ducks game. He didn't enjoy them. Wanted to run around and bang the seats. He got upset when they turned on the lights and it wasn't dark yet. We had to walk around a lot and he kept asking to go home.

So, today I drove over 2 hours each way to the Bronx and Michael went to his first game. It was against the Baltimore Orioles. We had seats behind the visitor dugout and about 3 rows from the top. Wow. They were high up. While making the walk up- with Michael holding my hand- I was thinking how crazy this was. I couldn't even look down- it was so scary. But, when we got to our seats- we were in the shade- awesome. It was about 85 degrees with little wind- and being in the shade was a life saver.

Michael sat in his seat for about an hour and a half and didn't move an inch. He was facinated by the music, people, vendors, diamondvision (or whatever they call that huge screen) and atmosphere. When Michael was little I used to teach him to clap and say "let's go Yankees". Well, when the crowd started that chant- Michael had such a cute look on his face. Like "hey, I know that one".

We lasted about 4-5 innings. Which was fine because the Yanks were losing 8-2 at that point and we had a long ride home. I never, ever, ever leave a game early- but Michael had had enough. I bought him a hat and t-shirt- which he wore. When we first walked into the stadium, they handed us two hats- it was hat day- lol. Well, now we have 3 hats. I guess you can never have too many. I wore mine. I think the last time I wore a baseball cap was 10th grade softball.

Overall- great experience. I got alittle chocked up when we first sat down. I was thinking- "look at us. Me and my kid. Sitting at a Yankee Game." He's enjoying it- I'm in heaven. I was just soooo grateful. He was so good, always holding my hand and listening. I was so proud of him today.

A couple of years ago I didn't think a day like today was possible. I was wrong. I'm glad I can say I was wrong. The Yanks ended up losing 12-2, but it was the best game of my life.


Second Visit

Saturday, August 12, 2006
Second Visit
Current mood: grateful

So, we had our second trip to the Doctor. There were 3 other people there and Michael's loved watching the other people get their IV's in. He told this one adult "It will only pinch alittle". LOL.

Michael did better with the needle this time. We were also more prepared- bringing my laptop and playing our friend's DVD of Monsters Inc. and plenty of snacks.

Michael's urine test came back and he got rid of Aluminum and Lead- which is great. We are testing his urine again in 5 weeks. I posted the urine test here- just click on it to see a bigger file. Also note that when we tested his hair 4 years ago, he had high levels of lead, aluminum, mercury and arsenic. Doctors say that lead and aluminum are usually the first metals to come out- the mercury is last.

Here is a photo of Michael with the IV in his arm. Thankfully, he rarely tries to get up.