I'll show you crazy...

I have been thinking a lot about "Autism:The musical". When I watch things about autism, it becomes more about me, and my perceptions, and my son. I don't know if anyone else does this but whenever I see shows like this, I kind of look for answers. I know they are not there, but I can't help it. I want to see how parents are doing, how kids are doing, what school is like for them, do they have friends, are they 'ok' (whatever the hell that is). I get very emotionally wrapped up in it. I think overall the show focused a lot more on the parents, and I would have preferred more of the kids, but I do think it's an amazing program, and I thought that the woman running it put her heart and soul into it, and she was wonderful. Some of it made me really really sad. Listening to Wyatt talk about being bullied, made my heart ache. Watching Henry, who was so adorable, talk about his beloved dinosaurs, tugged at my heart as well. My husband and I chuckled when we heard him talk about reptiles and what they liked to eat, because he reminded us of bubs.
I was also struck by how 'weathered' all the parents were. When Adam's mom spoke about their marriage, it made me so mad. She said it was her job to make sure her son was 'kept out of an institution', and that their marriage suffered because of her devotion to her son. I think it struck a nerve with my husband and I. I also felt sorry for Lexi's mom. Sorry because she seemed to not be able to accept. Then I wonder about myself. For again, the whole thing is about me, right?

Ok, so now that I am in that mode of thinking, here's where the 'crazy' comes in. I take bubs to a 'kiddie kicks' class at a local gym. The owner of the place is one of bubs' home therapist. We love this woman. The place is great. It's open to all children and a lot of my friends take their kids there. I think it's common knowledge that the owner is also an aba therapist, so the 'nt parent's' are in general pretty cool. So we were there this Saturday for a special 'music and movement' class. Bubs was loving it. One of bubs' school mates was there, and I was hanging out with his mom. I thought it was pretty obvious that we were friendly. Now this little boy has some more visible affects of asd, he had a chewy tube around his neck to help him not chew on his shirt, and he was a little more on the active side. He is a sweetie and was having fun as well.

So I went to the bench to sit and watch my son have fun. Bubs tends to fly 'under the radar' these days, and I guess that's the reason this other mother of a neurotypical little girl felt comfortable saying what she said to me. She came and sat down on the bench next to me and was looking at the kids and said 'that boy is crazy, no?'. Ok, to give her the benefit of the doubt she was Russian, and it was obvious to me that English wasn't her first language. But the comment still had me steamed. I said 'NO, he is not Crazy, he has autism. Just like my son, they go to the same school'. I usually don't talk about bubs like this to total strangers. I feel like he has a right to privacy, and I tell only the people that need to know, like dentists and doctors and teachers (and sometimes even they don't need to know). Only when it helps him. But this just had the bile up in my throat, and made me angry and sad and proud of all the hard work that the boy and his mom endure. Ugh. I am sure she was just curious, but she could have used a better choice of words.

Ok, so how does this relate to the HBO show? I am not entirely sure, it's just that it's been on my mind. I am not sure I entirely understand autism, so how are people who are not directly affected by it going to get a grasp on it?

Celebreality

I just read that Colin Farrell's son has Angelman syndrome. For some weird reason, and I feel stupid for admitting this, it always makes me feel better when I hear about a celebrity who has a child with a disability. Not in a 'ha, ha' kind of vindictive feel better way, but in a 'I am not alone' kind of way. Even though I know I am not alone, and I have lots of support, it still kind of makes it seem like it will all be OK. It's like when I was little and I couldn't sleep and I was allowed to leave the TV on, it made me feel less scared, like the monster couldn't get me because Welcome Back Kotter was on. I don't know if that makes any sense. First of all I do not wish that any one's child has a disability, but as a long as you're here, come on in and sit down. At any rate, he 'came out' to People magazine this week. He talked about how proud he was of his son and how he just took his first steps at age 4.

I now have to discuss Jenny. First off, I think what she did for autism awareness was amazing. Her media blitz last month got everyone yapping about autism, which I think is fabulous. I also feel like she wrote my story. Except for the fact that I am not a hot m.i.l.f., and my son didn't have the health issues her poor son had, and my hubs wasn't a complete jerk, she really wrote my story. I could relate to 100% of what she said, and how she said she felt. I have passed this book on to any and everyone who wants to know what it's like (for me). OK, that's the good, now here's the bad. Before I read the book, we had kind of tapered off on the biomeds. I was becoming obsessed with it, and I really put a lot of pressure on myself to be the perfect biomedical mother. The diet wasn't too tough although schlepping gluten free casein free foods in a cooler everywhere you went (including Europe!) was no picnic. The supplements were OK, a little bit tricky trying to disguise them and get them in without a fight. I stopped at chelation, it scared me and we didn't want to do it (although I am in awe of the parents that can- good for them!). It was a huge leap of faith but also a huge commitment to perfection on my part. Every time my son laughed or stumbled I wondered if yeast was overtaking his cute little body. Every time he would pick up a toy car and spin a wheel I felt a stab of anxiety that I wasn't trying hard enough with the vitamins and stuff. I worried that he had too much sugar or an infraction occured without me knowing it. I was a real drag. Bubs was doing sooooooo well, talking and interacting and just being so amazing. Since he started school and they take data on everything, which I love by the way, I figured that the data would show whether or not the whole protocol was helping. So I took him off. I had to do it for my son, for husband and for me. I was nuts. You know what, he kept going, he kept learning, kept talking, kept singing, kept being his great little self. I chilled and things got better all around. Fast forward to Jenny on Oprah. I watched, I cried, I laughed, I called my other autism mom friends. Then that feeling in the pit of my stomach came back. That little voice whispered; 'you are not doing enough, you have to do more'. Bingo, the biomedical spirit overtook me. I read Jenny's book, realized that I did most of the stuff in there at one point or another. I started back slowly, just a little clo. Is that eye contact improving? Hmmm, is he being more conversational? Did he just ask a why question???? OK, suffice it to say I was hooked and more obsessed than ever. I am contemplating the yeast treatment, we have three lac and caprylic acid poised in position and ready to go. Now my son is getting up at 5:45 am every morning. As I sit there trying to drag myself out of bed I start questioning myself- is it the clo? Is it the pro biotic I just started kicking up the yeast beast? The neurotic in me could go on and on and on. The little realist dwelling somewhere deep in my heart tries to feebly argue- 'He is just getting up early, that's all, no more no less'. The debate inside me goes on. Till I get burnt out on it again.

you are ruining my hair

Ok, I waited four long years to hear my son talk. Countless hours of aba, pt and ot. Many miles driven to DAN docs, emptying out my checking account for various potions promising 'calm and focus'. It's all paying off in a big way, and while it's music to my ears, it's also adding a whole new dimension to my day. I guess I kind of thought that when bubs finally started talking, well, then his dx would melt away. That all of the behaviors that placed him tenuously on the spectrum would fade when he could communicate with people. I guess I am lucky to see some of those things really fade, but then there are these 'other' things that start popping up here and there. Kind of like a criss angel mindfreak game of 'whack a mole'. I was told by bubs' school to watch for 'rigid behaviors' as they are asymptomatic of the proverbial 'child on the spectrum'. So is it normal for a kid who doesn't mind getting his hair shampooed to suddenly act as if you are dousing him with boiling hot oil? I innocently set out to wash his hair one night and usually what I do is kind of bob and weave with a pitcher of water while he is happily distracted with his beloved sea creatures. Usually he doesn't mind at all. So while I was attempting to continue this tradition I was faced with a very disgruntled boy. He was swatting me away and screaming at me. 'No' he said, "You are ruining my hair, You are RUINING my hair mommy". Now the autism momma in me is thrilled at the the fact that there are so many words in that sentence and that the pronouns are all in place. I was also wondering where he picked up the concept of 'ruining'. I don't remember teaching that one. But that same autism momma in me was also wondering if that was a weird behavior that I should be worried about. It's such a fine line between what is typical of a four year old, and what is typical of a four year old with autism. I have no objectivity and no frame of reference. Hell at this point I am pretty shot. Then we get the 'I am not wearing those pants, those are grey pants, my pants are blue'. I realized that yeah, most of his pants are blue. I had gymbucks and I got some new pants, some new not blue pants. Was the fact that the pants were not like his others making him 'anxious'? Or was he just being a four year old? Then he wouldn't wear the lovely new crocs I got for him, complete with lizard and spider jibbitz (did you know they make puzzle piece jibbitz???). Was it a need for routine and control? Or was it just peculiar toddler behavior? Rainman? Fishsticks on Thursday? God, it's been really freaking me out.
I really have to watch myself. I start perseverating myself on things. This morning when I asked bubs what he wanted to wear on his feet, expecting 'the usual' answer, he pleasantly surprised me with 'I want my new blue crocs, mommy'.