Sunday, January 22, 2012

This is not a happy post

Sometimes I feel like I suffer from multiple personality disorder. One side of me wants people to recognize Morgan as having Asperger's/autism (trying to get used to saying just autism in case the changes to the DSM's definition go through- thanks for screwing over THOUSANDS, asshats!) and accept him as just a boy- with some different abilities. One other side of me wants people to just think that Morgan's a neurotypical child that's slightly quirky; he just likes to say weird things, lick around his mouth repetitively, find patterns in things, LOVES Thomas the flippin' Tank Engine, and exhibits signs of autism, but ASD isn't the case- he's just quirky and quirky is GREAT! Bullshit of me, huh?

I have these imaginary steel bands wrapped around my rib cage that make it difficult to breathe or relax. Whenever I get stressed/panic/anxious, somehow those bands tighten just a bit, sometimes more.  I stay stressed- constantly- and I'm prone to anxiety attacks in some crowded places or when I'm well, stressed out. The reason for some of my anxiety or stress? Well, it's hard to put my finger on it...
  • What if Morgan never reaches grade level in reading? What if he falls through the cracks?
  • What if I'm not a good mom? Am I missing something? I must because my kid didn't get a diagnosis until he was SEVEN and I KNEW something was wrong, but I let other people tell me otherwise- including my damned pediatrician.
  • What about Bay? I have him at home during the day and not in a preK program because, to be blunt, we can't friggin afford it. I mean, I can teach him, right? Those workbooks and worksheets will prep him for school, right? Playdates with other kids and outings to the park are okay, right, since I'm socializing him? Quality time with me is important, right? If I get him in speech soon for that slight impediment, he'll be okay and I'll feel like people aren't looking at him with suspicion as if "your brother's autistic/weird, what' wrong with you," right?
  • What if Morgan never meets a girl that looks past any of this crap that can be autism? What if he never gets married? I know this is a while away, but I worry about it, though I have no control over it.
  • My insurance has approved Morgan's therapy finally, but who exactly is right for him? When are we supposed to take him? In the afternoons? During school times? And how in the hell are we supposed to pay $40 (technically, it'll be more like $60- $20 for gas each time) a pop when we worry about splurging on dinner out? 
  • I just bought new shoes yesterday, dressy shoes. Shoes I technically needed (okay, I wanted them- so shoot me for wanting pretty red heels) to attend a function. I was excited about them, they're perfect and I got them on sale. Know what woke me up at 3am? The knowledge that the money I spent on those shoes could have gone to Morgan's therapy fund.
  • Am I doing enough for Morgan at his school? Probably no on that one. I don't volunteer and frankly don't plan on it unless it's something for his homeroom class.
  • That mom of the boy from Morgan's class we ran into yesterday, the one that Morgan really likes and always talks about, she took my number after the kids played at Chik-Fil-A. She said she would love for Morgan to come over, was she for real? I mean, really? Don't toy with my emotions, lady.
  • Does Morgan know how proud of him I am? I tell him, but when I push him to try harder, does he realize it's to help him reach his fullest potential? To get him out of a lower level class?
  • Why can't my child read a calendar? He 'learned' how to in math class... he can't do it though... which brings me to my next worry...
  • Is Morgan cheating in school? He admitted that he looks at other kids' papers sometimes when he doesn't know the answer. I don't know if it's for tests or what- reading tests are proctored in a room where he's the only kid and spelling tests he nails because he KNOWS the words. I know he gets stuck on word problems in math (deficits in reading, got it), but OH MY GOD. Cheating? My kid? Thomas and I have always told him how bad that is! I know he's not doing it for numerical equations, he does those right in front of me. But other things? I now have to contact his teachers... shit.
  • Morgan told me that he doesn't want to be "dirty Morgan" anymore and has to take more showers. He showers daily, sometimes skips a day if he's running late. What the hell? Who called my kid that? He won't say...
  • People think I've gone insane due to my rants on the word retarded... is it that bad that I want to punch those that call me oversensitive? I'm not oversensitive, I just want to punch people, that's all.
  • Morgan is overly affectionate. He loves to hug, kiss, cuddle, "pet" (have his head/back rubbed- he also tries doing that to other people, but sometimes comes off as kind of creepy, lol), hold hands... when is this really going to go south for him/us? I think it might have already on the boy front since he's brought home the words "fa***t" and "gay" and I'm pretty sure they didn't get tossed out loosely. Or what if he tries to "pet" some girl and she gets scared due to his size? He wouldn't hurt a soul, especially a girl, but my God... So we're doing behavior modification- a lot.

So, as you can read, I'm a worrier. I'm a warrior for my child, too. But I worry A LOT. I worry so much that, at times, I literally get sick. I can't stop it even though I know it doesn't help and is in fact detrimental to  Morgan (and Thomas and Bailey). But when so much seems unknown and out of my control, I don't know what else to do.  I try to be proactive about things in my life, but look at the list above me, a lot of these things are more of  "wait and see" kind of affairs rather than immediate "let's kick ass" types.

All I know is that I get exhausted/energetic and angry/sad/happy all at once and most of the people closest to me don't seem to get it. My friends who have NT children don't understand why I have mostly autism to talk about- that's my life, get with it or get out of it. My family, I think, sometimes feels the same way. I vent on my blog so I guess the six that read it know afterwards, but until you've walked in my shoes...  don't judge me or assume you know what's going on in my head- you don't. Autism is/can be a frightening place for a parent- unless you're in my Spectrumville, you're probably not letting it keep you up at night.

Summer 2008 "summer of hell", photo by Mariah Bibbey

May '07 pre ASD symptoms, photo by Mariah Bibbey

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