Back from Chicago

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

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

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

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

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

All 4's!

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

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

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

The best comment he got was from his speech therapist:

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

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

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

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

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

The Body Boogie

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

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

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

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

"Happy Mother's Day" Never Sounded So Good

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

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

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

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

This Time It's Bowling

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

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

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

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

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

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

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

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

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

Sprout Film Festival

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

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

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

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

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

The Amazing Race

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

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

The Greatest Haircut in the World

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

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

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

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

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

Green Eggs & Ham

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

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

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

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

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

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

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

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

"I do like green eggs and ham!"

A New Day

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

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

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

Go Michael & Go Yankees!!!

My photographs & videos

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

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

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

-Christine

Virginia Beach Trip - April 2007

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

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

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

Catching Up

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

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

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

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

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

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

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

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

You're Too Loud

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

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

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

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

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

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

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

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

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

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

Thanks everyone for reading our blog. :)

The Pledge

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

Recent Video

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

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

Thank You for Sharing

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

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

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

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

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

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

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

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

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

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

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

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

Thanks!

Why & Willie Wonka

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

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

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

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

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

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

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

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

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

Ups & Downs

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

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

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

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

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

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

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

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

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

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

The Long Winter

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

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

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

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

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

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

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