Tuck Me In

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

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

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

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


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

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

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

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

My Little GPS

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

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







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

Baby It's Cold Outside- Kinda

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

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

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

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

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

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

Thanksgiving 2007

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

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

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

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

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

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

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

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

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

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

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

I'm Back

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



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

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

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

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


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

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

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

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

"His brain is all better"

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

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

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

It was just a great thing to hear.

Pinstripes

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

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

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

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

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

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

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

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


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

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

Checking In

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

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

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

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


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

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

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

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

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

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

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

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



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

Conference Coming

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

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

OT Report from 2004

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

DATE: August 6th, 2004

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

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

2004 Eval

I found another old evaluation.

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

Some of the goals for the summer:

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

Summary of Progress:

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

This is from his Speech Teacher:

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

First Day of School

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

Old Functional Behavioral Assessment Report

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

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

Reason for Referral:

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

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

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

Vacation

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Up, Up and Away- Kind Of

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













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













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

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

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

1 Year Anniversary

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

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

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

I am a person

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

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

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

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

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

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

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

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


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

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

July 2007 Video

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

Happy Birthday- Cha Cha Cha

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

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

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

Thanks for reading our blog!!!! -Christine

Waiting on the World to Change

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

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

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

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

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

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

WHY GEORGIA?

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

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

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

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

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

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

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

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



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