One step forward..

Today was a pretty good day overall, but the end was pretty depressing. I understand that Michael still has huge, enormous sensory issues, but I just don't understand how he can throw a tantrum over watching more doors after spending half an hour riding elevators and watching doors. Lately, he's been able to express his desire for the one thing that will let him leave happily(one more ride, playing a game when we get home, etc.). Today, he just couldn't. So, he dropped to the ground and screamed.

I'm pretty much over being embarassed by the tantrums, but it still depresses me to see him lose control. In some ways, the better he gets, the harder it is to see him lose it. So tonight, I'm just going to be thankful for the days he can hold it together and not focus on being disappointed when he can't.

Starting Over!

OK, summer is quickly ending and it's time to start thinking about getting back into a routine. So, my new resolution is to get back to posting here. I miss sitting at the end of the day and reflecting on it. Some days are great, others not so great, but it's nice to keep track.

Today has been a mostly great day. We needed to take Michael for blood tests this morning. (I say 'we' in the most general sense of the word. Steve and Dan (my BIL) actually took Michael because they can only handle one traumatized person at a time.) Anyway, it has always taken at least two people to hold Michael still for the draw. Now that he's gotten so much bigger, it's pretty much impossible.

Today, Michael started out fussing and crying and then realized he just had to do it. He told the phlebotomist to 'take the blood out of my arm' and actually talked with her during the process! I couldn't believe it when Steve told me about it. But, it really sank in when I saw how proud Michael was.

Michael has struggled all summer with self control and behavior. It's nice to think that maybe he's finally making progress in holding it together and not melting down. Now, I'm sure that we still have tons of meltdowns ahead of us, but I am really taking this as a positive step.

Of course, after we got home Michael wanted to go ride elevators. It's his favorite treat in the world. And one that no one else likes. But, we had enough guilt that we took him to the mall and let him ride different elevators for over an hour. So, he was thrilled with that and still proud of himself for the rest of the day. I like good days!

Treat the child not the numbers!!

OK, I hear that phrase a lot from biomedical doctors. It always seemed fairly obvious to me. Until yesterday. Michael had his 8 year old check up with his regular pediatrician. He weighed in at 56.6 lbs and 50 3/4 inches. (49th and 55th percentiles according to my math) I'm guessing that the nurse charted him incorrectly because the doctor was all concerned that his weight jumped to the 65th percentile.

We are talking about a child who has always been underweight. You can still see his ribs when he breathes in. I asked the doctor how we could possibly need to watch his weight when he is so obviously skinny. She said that obesity is a big problem and that doctors have to watch children carefully. I was absolutely floored. (Did I mention those ribs???) So, I came home and did my own math and felt better that he didn't suddenly jump several percentiles, but really question how such a smart professional can be so blind!

Hurray for Captain Underpants!

Michael taught himself to read shortly after he turned 3. Since then, he has been able to read anything you put in front of him. Teachers, therapists, doctors, were all convinced that because he couldn't answer questions about what he read that he wasn't understanding it. This week, we finally got proof that he does understand!

My brother-in-law had given Michael a set of Captain Underpants books for Christmas a couple years ago. Michael had not been interested in reading them because of his overall fear of reading. I guess that he was so stressed about all the comprehension questions that he just decided not to read at home anymore. Every time I tried to suggest it, he just put the book down and wandered away. Between Steve and me I knew he had to have a reading gene in there, so I have been (trying to be) patient about it.

Last week I came across the boxed set sitting lonely on a shelf. I realized that it had a sound effect whenever you opened the box. Michael can't resist sound effects. So, when he was in another room, but could still here, I opened the box. Pitter patter of tromping feet. It took another several days before he would open any of the books. But, this week, a major breakthrough. Michael actually explained the books to my mother-in-law! She had never heard of Captain Underpants and was curious. If Steve or I had asked about it, he would have run into another room. But, because it was Grandma, it was OK. Based on his explanations, we knew he understood everything he read. And, better yet, he asked for the next four books in the series. Life is good! (OK, not exactly Watership Down, but I'll take it!!)

I am going to explode!

We got back from Autism One very early this morning (around 3:30am). When I went into our room, I noticed Michael sleeping in the middle of the bed. I guess he figured we weren't using it, so he might as well camp out. We tried really hard not to wake him, but he woke up when we got into bed. He was genuinely happy to see us. We got several "I missed you guys!" before we finally got him back to sleep. He was still too excited to sleep well and was up several times before getting up for real around 6. Poor Dan! But, it was nice that he really did miss us, and was able to express it.

Then, we went to Whole Foods to do some catch up shopping. Normally, it's a terrible idea to bring Michael with us, because he likes to go up and down the aisles, watch the doors, anything but shop. Today, he actually helped push the cart and let us get what we needed. Very nice!

So, it's been a fantastic day, on top of a phenominal conference. I'm going to try to make sense of my notes from the conference over the week and share them. Plus, we got to do a lot of interviews for the movie, and things are going great. I'll be updating the movie sites this week as well. Dunno where I will find all the energy I'm going to need this week!

Autism Healing and Hope - the MOVIE!

We are either totally insane, or extremely inspired. Steve and I have decided to make a documentary for parents of newly diagnosed kids. We started filming at the DAN! conference and hope to continue at Autism One later this month. One of the things that hurts the most is when a parent tells me that their doctor thinks autism is hopeless and that treatments are a sham, not to waste their time or money.

We have seen with our own eyes the difference that treatment can make in our son. Not every treatment works for every child, but there is a lot of scientific evidence that there are things you can do to help your child. Even if the "only" results you see are better sleeping or less tantruming, who among us whouldn't love that?

So, we are interviewing top doctors and therapists to briefly describe what treatments are available, and which kids they have the best results with. If you have any ideas for someone perfect to interview, please send a comment. If you want more information about the movie, please look here.

Apology and good info!

I am so sorry for being away from the blog for so long. Between allergy season, the DAN! conference, and general life, things have been nuts. Plus, we have a special project that I'm hoping to announce this week. I know it's a tease, but trust me, it will be worth it. (At least in my opinion!)

The news that I absolutely had to share was that Generation Rescue is offering grants to help families who are just starting biomedical treatments. Applicatins are being accepted now until May 31, 2010. I am hoping that most of you won't qualify because you are already doing biomedical treatments with your child. However, if you haven't started, or have a friend who is thinking about it, now is the time!