Wednesday, November 5, 2008

RE: my crappy week

Tuesday's appt at Children's Specialized Hospital didn't go as well as I'd hoped and I'm just feeling really bummed and not crafty at all. I'm having a hard time focusing on anything that's not autism research right now. Even though the lady that screened him was just a glorified RN (MSN, CRNP), she had some really tough things to say and said she would be surprised if he wasn't autistic. I still don't believe that he is, it just doesn't feel right to me but I can't sort through the true feelings and the bias mom "nothing is wrong with my child" feelings.

She's pushing us to go get evaluated by the team really quickly so we'll "know". It just all pretty much sucks. I don't feel like he's autistic, I honestly don't. I'm scared he's going to get that label and then be burdened by it the rest of his school years. It seemed to me that her evaluation was not nearly as thorough as the Early Intervention evaluations have been, but that she's about equally certified to those people.

She followed exact textbook rules for screening and I feel like it's all square peg into round hole stuff. She put a baby doll in front of him with a bottle, bowl, and spoon. Because he didn't feed the babydoll, he failed that part. Now, this is a 33 month old boy, he's probably never even seen a baby doll before.

She blew a balloon up and let it deflate and fly around the room, it landed behind her wheelchair in an unaccessible spot. He laughed, cheered, looked me in the eye and showed excitement -but because he didn't climb and get it, or ask one of us to get it, he failed. Instead he looked, saw it was unaccessible, and moved on to something else. It makes sense for an adult to act like that - like - if I drop something a foot from me, why should I expect someone else in the room to inconvenience themselves, climb past me and around a table to pick it up? He accepted that the game was over and he moved on. I'm sure if he'd have tantrumed, it would have been a fail as well. There really is one right answer, and if he doesn't fit it exactly then he fails.

I mean, whatever happened to JUST being a late talker? It's not that he's completely silent. He gets his point across just fine and he gets what he wants through non verbal skills like reaching, physically putting something in my hand (like a bag of goldfish if he wants snack) or just doing it himself, which is is quite fond of as well. I think he doesn't have a specific NEED to talk. That's why when he goes to my MIL's house, he uses more words and communicates more - because she doesn't know his non verbal signs like I do.

Einstein didn't talk til he was 5, I suppose he would have been classified autistic. It seems like in today's age, every kid that is slightly off the chart is autistic. There's no individualism, there's no difference of opinions, they're just not fitting into the perfect little charts that everyone has, and so they must be autistic.

We have the formal diagnosis evaluation with the team on January 28. It's only a few days before his third birthday. I don't know if we're going to take him to that or not. We may cancel it, I'm not sure. I feel like I don't want him evaluated and possibly diagnosed until I am on board with the possibility. I don't want him labeled autistic, and then it affects him the rest of his school years, having that label. What if he grows up to be a completely normal functioning child, and is stuck under a stigma that was given hastily? The fact is, nothing is going to change in his pattern of assistance. He'll still be eligible for the preschool, if we send him - and that's the only thing they are offering. It's not like we'll get speech therapy from an amazing speech therapist that works for the Hospital, one on one time, etc - it's the same thing I'm already doing through the Early Intervention program......just, if I do it through EI only, I do it without the label.

Now here's where I go off the deep end with the biased parent stuff. I *know* I must sound crazy. I feel like an innocent man in jail for a crime he didn't commit and saying he's innocent. I'm sure all the kids are out saying "no, my kid is not autistic!" but really, I got this feeling yesterday. I feel like they want to diagnose him with autism because at best, he would be high functioning (though there is no official diagnosis for high functioning, it either is or isn't in the medical world) but I feel like if they diagnose him, and then he "recovers" then that's something to show off with. The more kids they are able to recover, the better they look, the higher their rating, the more money they'll get for funding, the more parents they will have competing to get their appointments. I mean, I know, I probably sound massively conspiracy theory right now, but it makes sense. I can't think of another reason why this lady who is only a nurse (MSN CRNP - Master of Science in Nursing Certified Registered Nurse Practitioner to be exact) would pretty much diagnose after making a half hearted attempt at playing with him.

And why is it so hard for people to understand or acknowledge that the possible "red flags" he does have could be a result of all the scary and invasive procedures he went through as a child? Weekly painful casting, bone manipulation, surgery, blood test after blood test (sometimes up to 3 in a day!) I mean, why is it so hard to believe that this child acts differently around white coats/clinical situations? I take him back for 6 month checkups on his feet, and though he's almost 3 and has been walking steadily for nearly a year - but he will not walk for the Doctor. Does that mean he can't walk or that his feet have degraded? No! Dr. Horn understands that, and finds other ways to work with him.

For every "red flag" of autism that he has, he's got 5 things that he does fine that autistic kids usually don't w/o work.
Here's his red flags:
*Speech Delay
*Social Delay - ie: anxiety in structured play groups like tumbling tots (though he's fine w/ kids in freeform play)
spotty eye contact - 90% of the time he is fine w/ me about eye contact. With others/strangers, it's about 60% good and 40% not good.
* Doesn't like play dough / floam / silly putty

things he does that would be uncharacteristic for an autism:
*smiles, laughs, & general happiness - not grumpy or unemotional
*empathy - will laugh when we laugh, cry if we cry, be scared / anxious if we are, etc
*responds to his name about 80% of the time
*gestures by way of reaching, leaning, looking at object, physically moving my hands to the object he wants me to see, pointing with middle finger (but because he doesn't always point with his pointer finger, they say he doesn't gesture)
*does not make repetitive movement w/ objects/toys or body (no rocking, flapping, wheel spinning, etc)
* no irregular pitch/singsongy-ness
* no self harm
* no unusual attachment to objects
* very cuddly and lovey
* very social with other adults, or older children (like my 8 year old bro, his fav person in the world)
* sleeps like a champ
* doesn't freak out if routine is changed up
* plays with dirt & sand (would generally be a sensory issue same as play dough/floam)
* doesn't "parrot"
* can make silly faces/noises back to us when we do them
* holds markers correctly (not just fist grab)
* uses a fork very well, and a spoon pretty well (still tough with liquids, but eats yogurt/ice cream just fine)

so, if you've noticed that I'm in an unreasonably bad mood, completely unfocused, or just generally look like crap. It's because I've been stressing, and crying, and it's pretty uncontrollable.

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