Wednesday, September 30, 2009

Autism

I just saw these videos for the first time, I think they are hilarious and smart. I have been thinking a lot about diet and autism, especially, because I'm reading this book about a woman who 'saved her son from the abyss of autism' or something like that. I like it because she created an ABA program for her son, but I don't like it because she is big into the Gluten Free/Casein Free diet and also because that ridiculous Jenny McCarthy wrote a review of the book. I am using it for my needs, which are to understand autism better and especially to understand ABA better. I'm also reading a book by Temple Grandin, who has written several books about being a person with Asperger's Syndrome.

In the book I'm reading, the boy has terrible illnesses through his first year. He sounds a lot like Anthony, from a colicky standpoint, but that's it. He had many, many doses of antibiotics because of ear infections, etc. He also had high fevers, that caused super red ears. This struck me because Anthony has red ears too, a lot of the time, but no fever. Do all autistic children have red ears? What the hell is that about? He also has bad stomach troubles, from really bad d-ha, as my friend Emily calls it, to terrible constipation.

Anthony has never had stomach troubles. He never had any antibiotics until early this year, when he had his first ear infection. He has never really had a fever, until this year when he was so sick. But by that point, I think we can all agree that the autism ship had sailed.

So I read these books and I think, should I try it? Should I start making GF/CF pancakes and chicken nuggets and whatever the hell? In the book, her son starts to come around a bit once she starts the diet but she also starts the ABA therapy at the same time. He is also younger than Anthony, two, when he starts. So who knows.

His therapy is going very well. We had to quit his OT this week, which sucks, because we and Anthony love her. It just doesn't make sense for us to have Anthony get OT on the other side of town and late in the day after having therapy all day. We already see differences in Anthony, but it is occurring to me lately that we are not going to have a moment where he shakes off the autism and starts rapping with us, like a typical four year old. But I don't care. I am not a person who thinks that my child with autism is a unicorn or something, a special, magical being. He is special and magical, but not because he's autistic. Just because he's ... Anthony. I know that sounds lame but it's true. We will take Anthony, however we get him. We are supporting him in his latest quest and I hope that it makes a big difference in his life but all we can do is try. I find it exhausting to worry about stupid vaccines or diet or whatever the hell people want to make up, so I'm not going to worry about it anymore. This does not mean that I don't believe other people's stories (well, excepting the Playboy bunny opportunist that is Jenny McCarthy), because I do. They just don't have anything to do with me, and more specifically, with Anthony.

Saturday, September 26, 2009

Saturday

 
 
Mike took Anthony and Maria to his mom's house today, and Mike's grandmother came over there to see them, so that worked out well. Here's Anthony, before he left, this morning. He slept well last night - man, he must be so, so tired when it's bedtime. He works so hard at that school, he's there for six hours and he's engaged the entire time. Yet he manages to drag himself out of bed and follow Mike to the door when he leaves. He's crazy. We are thinking about what clothes they will need for the fall and winter and he is going to be fine in his pants from last winter, but we'll need to get him some new shirts, as his 4T's are getting kind of snug. We're going to get him a new coat, too, but I like to get a fleece type thing because otherwise it makes the car seat too tight. He's doing fine so far this weekend, not too much sadness or crying, which is always good!
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Wednesday, September 23, 2009

Meeting

 
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The meeting went very well, it was nice to be able to talk to his therapists. He is going to start going til 3:30 here soon, I'm not sure when. They all seem to think it's normal, the crying, as he gets more language, he gets more frustration. Super! Really, it's fine. Anthony was at the meeting and they showed me stuff they're working on. Like one of his therapists said "Anthony! Come here!" and he came running over to her, which was incredible. I don't have time to write anymore because Anthony's sister is a demanding wretch, but it went well and I wanted to note it.

Monday, September 21, 2009

So Sweet

 
He is so sweet and earnest and he has been crying a lot lately, which is KILLING US. I have a meeting at his school tomorrow and I'm hoping they say "oh, of course, it's normal, don't worry!". Keep your fingers crossed.
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Sunday, September 20, 2009

Sunday*


*family portrait, taken last week*

Anthony has slept really well this weekend, which I think merits a post. Also, Mike took Maria out to pick up breakfast, Anthony is downstairs playing, and Veronica is finally napping in Maria's crib, so I have a moment.

He had a good week, although more than once his therapists noted that he was 'weepy'. Oh, it can break your heart, when he gets weepy! One of them told me that it wasn't like a tantrum, or like he didn't want to do something (both of which I guess she's seen), but that he seemed really sad. Last weekend, my mom and I sold stuff in our neighborhood garage sale, so we were down on the sidewalk. I looked up the stairs at Anthony, and he was crying and crying, tears were *streaming* down his face. I went up and asked him what was wrong, but of course he didn't answer, so I just hugged him for a while and he felt better. God only knows what was bothering him then, or what was bugging him at school - it's a mystery, for now. He certainly feels emotion, and his face matches his emotion, which are two things that I always read don't happen with autistic kids.

He has been sleeping badly and I'm sure that explains his rough afternoons at school. BUT he had some good things happen, too. He was "very verbal!" mostly every day, he said "BYE!" to his therapists every day. Yesterday, I took him over to my mom and dads, just the two of us. I can't remember the last time I went with him alone over there. It's been a long time. Anyway, out of nowhere he wanted to do his alphabet and count to twenty for my parents. It was so, so great, and his voice is just adorable. He adds real inflection to every letter and number. He loves the applause that follows, too. Ooh, he drives us crazy with his cuteness and also with his not-so-cuteness.

Friday night we were going out to dinner with some friends and my parents were coming over to babysit. Veronica seemed really out so I laid her down and figured if she woke up, my parents could just go get her. Usually we just transfer her sleeping self to my mom before we leave. Mike put Anthony to bed and for the first time in a long time, he fell asleep. Veronica stayed asleep too, so for the first time EVER, my parents just babysat by *sitting* here and watching tv. Anthony slept all night, he didn't wake up until around 8:00 yesterday morning, which is almost 13 hours! Last night he didn't fall asleep when Mike left, and was kind of weepy again, but I went up with Veronica shortly after that and he was quiet, so I think he went to sleep early again. He was up around 6:00 this morning but that is still pretty good. Now I'm just hoping (against hope) that he sleeps well tonight and then he can start well at school. I have a meeting with his therapists this week, it will be monthly, but this is our first one. They are really great with him and as usual, seem to really care about his success.

We are trying to figure out the insurance and how it's going to work. Anthony's speech therapy bills have to be paid by us and then we have to get reimbursed. Of course, the scumbag insurance companies are making us jump through every hoop that there is to get them paid and it's a lot of money, so we are jumping! We still haven't had our new insurance pay out anything, they have just claimed (so far) that we have another insurance company that should be paying. Sigh. As long as someone pays, I don't care, but I am nervous that no one will. It's so great now, there's no way we could ever take it away from him. But I am keeping a good thought that it will all work out, you all should too! :)

Thursday, September 10, 2009

With Maria

 
Mike took these. He just looked out and there they were. She is always right up in his grill, which I think is good for him, although he might not always think so!
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Tuesday, September 08, 2009

Monday, September 07, 2009

Bumbo

 
Ha, I didn't have a Bumbo when he was little so maybe he's making up for lost time? He seems giant to me lately, but I don't think it's all my imagination. I think he's grown a little bit here lately, he seems like he's all knees and elbows. We're off from school today but going to OT, which he missed last week because his OT was sick. I'm sure he'll be happy to go, he loves her.
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Sunday, September 06, 2009

Sunday Again

I realized I hadn't posted a picture of him in a week today! That's a long time for me, but I don't take as many pictures of him because he's in school and then when he's home it's so crazy I don't always have my camera. But I wanted to mark how well he is doing.

We have been leaving him awake in his room and he has been up, noisy as HELL, until around 9:00 or usually more like 10:00. Then he sleeps all night until we get him around 7:00, usually. If he's been up late, we can let him sleep until 7:30 so he has a half hour before he leaves for school. Mike usually leaves a little bit before 8:00 with him to try and get him there for 8:30. Then Mike races to work. I go and get him around 2:00 to pick him up at 2:30. It's easier for me because it's much less trafficky when I go. It's hard to get used to traveling so much by car, people are terrible drivers!

On Friday when I went in to get him, I told him to say 'bye! to the therapist. I always say it and he never does. I have been telling him to say bye for YEARS and he never has. But Friday he said "BYE!" to his therapist and I almost fell over. Then this morning Mike and I were talking about how he fell off his chair (he stands on it in front of the tv, don't judge) and he JUMPED off the chair and I said "No! Anthony, you can't jump off that chair!" and he said "Careful!". Mike and I are in shock, all the time, anymore. But it's a nice shock. :)