Another trip to NYC

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



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

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



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


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

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

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

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

How Long Did I Bake?

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


Some of the highlights were:

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

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

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

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

Thanks and Happy Spring everyone!

Road Trip Practice- NYC

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

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

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

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

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

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

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

Happy Spring Everyone!

"I Love It"

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

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



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

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



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




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



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

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



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

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

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

Top of the Mornin' to You!

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

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

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

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

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

2 + 2 = 4

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

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

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

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

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

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

Thanks and take care everyone.

February 2008

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

Photographs

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

The New Year

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

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

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

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

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

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

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


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

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

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

Happy Holidays

A few quick things:

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



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

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

Take care,
Christine

Chelation Update

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

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

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

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

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

I Think He's Going To Be A Teacher

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

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

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

Tuck Me In

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.