Thursday, March 5, 2009

I must just LIVE in LaLa Land

Because, well, I'm just THAT oblivious.

Last night Jaymes had a therapy session, and I brought the report I posted here yesterday to ask the therapist if she reallllly thought Jaymes was a bad as the evaluation report made it seem. She was at the evaluation, but for a very short time and I doubt she was involved in the parts that I felt most concerned about, but she's very honest and straightforward and I figured I'd get a decent answer from her.

I've found that any health professional you ask certain questions to will squirm and avoid answering the questions, and it's frustrated me for a long time. This was the first time I actually got a decent answer to the Two Big Questions (yes, they get an official title because I have asked them so many times and never gotten a satisfactory answer from anyone.). Namely, "How severe is he now" and "Will he ever really be normal". The second one is an idiotic question, and yet I'm always compelled to ask. I don't know what I'm expecting, honestly. Even I know the answer to that one.

Anyway, having shown the report to the therapist, she agreed that most of it was pretty accurate. She did say that it all depended on how he was acting, his mood and frustration level at the time of testing (which while relevant, is probably a nice way of making me not feel SO bad, because maybe he was just having a bad day that day) because those things can effect his testing.

Having gotten this far without much, if any, sugarcoating I asked question number of of the Two Big Questions. As expected there was a certain amount of "How do I answer this question without freaking Amber out" leading up to the inevitable.. But to her credit, she's the FIRST person in 5 years of my asking to actually answer! I cannot tell you how nice it is to finally ask the question and not leave the office fuming about once again not getting an answer. Where was this therapist when I first asked years ago and the pediatrician told me "Oh, we're not allowed to speculate on that" or the OT in Florida who told me "Well he's really too young to be able to say" or the psychiatrist back in Florida who said "There's no real way to measure that, don't worry about it." Oh I could go on and on and on. It's not like I really -wanted- to hear the truth, but I needed to and someone finally sucked it up and just told me. Therapists like that are the ones you respect the most.

Now like I said, I sort of wish I didn't ask, because really I wanted someone to tell me the truth, but I didn't really want to know the answer. I know, makes no sense, but that's the only way I can think to explain it. I have always looked at Jaymes, compared him to others I saw or met or read about in blogs, and kinda guessed that he was moderate in severity at worst. Her wording was something to the effect of "Well, he's pretty severe."

Why didn't I know this? Ok, maybe I did and didn't want to admit it. I don't know. No one ever expresses concern over Jaymes, it's always just business as usual at therapy and the doctors. The only times Jaymes is treated differently is at a store, where we get funny looks or at a friend's house when he starts acting out. Nobody looks sideways at Jaymes at therapy, because he is just like everyone else there. In that waiting room, there is a different crowd of parents. Not the prissy soccer moms who act shocked if your child starts screaming and flailing on the ground... No, we've got the parents who will pick someone else's kid up and calm them down. Everyone knows every kid there by name, everyone's friendly and pleasant. Too bad everyone wasn't like this. It's such a relief to be somewhere I'm not being judged, my child isn't being judged, where we can sit and chat and if one of the kids has a moment, or drools on the furniture, or does something else weird, no one says anything. It's all normal there.

Jaymes therapist had a lot of good points, particularly about not getting depressed over this new information. I'm trying not to be, I know it won't help Jaymes any. I guess it's just really a shock to see it on paper, in black and white, undeniable.

I worry about Jaymes... What happens to him if something happens to me? Images from that article about Trudy Steuernagel and her son Sky pop into my head, and it scares the hell out of me. Imagining Jaymes all alone, scared, without the one person who has always been there. He isn't attached to anyone like he is to me, but I won't live forever. I don't want to think about him being by himself someplace strange with no one who cares whether his blanket is on the right way or who cuts his sandwiches into cool shapes or who knows to let him turn the bedroom light on and off instead of doing it for him.

And then of course I get started thinking about us here at home. I know the therapists think we're godawful parents. Maybe we are. No one taught me what to do when Jaymes was born, very few people stepped forward to help me. Jason was one of those very few, but it seems that as jaymes ages, they get along less and less. Jaymes makes messes, Jason hates messes. Jason yells, Jaymes runs to me. Jason doesn't understand him. I'm too lenient. I let him get away with too much. But you know, sometimes I'm just too tired. I don't always have it in me to put him back in time-out 96 times. I don't always have the energy, emotionally, to deal with certain behaviors. So yes, sometimes I really do just sit here and hide on the internet while Jaymes rips apart the house... Because I AM TIRED. I want to be that perfect autism mommy, and in writing, i can play the game. I can do the research thing, I can maintain the website and blog because those things are relaxing for me. Dealing with tantrums and behaviors that not only are a problem for Jaymes and I, but which will get me in big trouble with Jason too... Not relaxing. Exhausting. I KNOW it's my job and I need to do it. Most of the time I do. But sometimes I can't, and I just sit here and punch keys and hide from it. I do the same thing when Jason and I fight. I have friends and readers and a life here online, and it's a great escape. Maybe too great, because I'm here too much.

Therapist was right about a lot of things, and she has this way of telling a person to get their shit together in a realllllly sweet, non-offensive way. Kinda impressive if you think about it, takes talent to be able to tell people things they don't want to hear in such a way that they leave with a good feeling and not a "she thinks I'm a crappy mom" feeling.

I do need to get out of the funk I've been in and lay down the law with Jaymes. I need to do it even if Jason gets mad at me for it, even if he tells me I'm being stupid or not doing it right. I need to stick to computer time before the kids wake up (like right now), during naps, or after they go to bed.

Anyway, I guess I need to stop ranting at this point. The reality is this: It's autism, it's here, get used to it. Don't deny it, don't whine about it, just do it.

1 comment:

Birra-li said...

I have a son called Jaymes who has
Aspergers. He definately had me in la la land as a toddler, and even now when his fifteen.

Autism is a biggie and really we should get more help. It's frustrating when people pass the buck and dodge the answers.

Wanting to be the autism perfect mummy is your own autistic trait.
I want to be the perfect mother too. Not possible though - I'm only human after all.

I'm sure you're the best mother for Jaymes as I'm the best mother to my Jaymes.