As I've mentioned before, I worry- a lot. I worry about Morgan 24 hours a day, seven days a week. If I were to be given an extra hour in a day, I'd use it to worry even more. However, I'm proactive in my worrying sometimes. Some people call this crazy, I call this being an advocate.
I get the whole family in on this act, down to our toddler, Bailey, or Bay, for short. Bay is a real spark plug. He knows the basics of autism and Asperger's. People, who shall remain nameless (you know who are you are), think that I am over burdening a child that already has and is going to have the "heavy burden" of an older brother that is "different" to help guide through life. They think that I give my children too much information about autism and life in general. I call bullshit. That's right, I said bullshit. Allow me to enlighten.
Bay is an exceptionally bright four year old. He already can spot differences in how he operates from how his brother does (interactive play, imaginative play, dressing up, making up names for himself, appropriate answers to small talk, no stims). It saddens and frustrates him that his brother doesn't play with him like he wants Morgan to. It does the same for me and my husband. Tonight when it was brought up to me by Bay (for the millionth time, I might add), I decided to break it down and be deadly honest with my son.
You see, Bay is about to enter preK. He's nervous about the other kids being mean to him like some kids have already bullied his big brother (thank, bullies!). I told him, as bluntly as I could, that bullies, while they are everywhere, aren't as likely to bother him as they are Morgan. Bay doesn't do things "differently." He's neuro typical. The most he might get teased for is his slight speech impediment and ginger hair. Oh, and the kid loves pink and purple. But other than that, Bay's 100% neuro typical, all around American, boy.
I explained to Bailey that God makes all children special. I mean, really, really, really special. However, he made Morgan with an extra dash of special with his autism. Autism wired his brain differently and makes him see the world in a different way, takes away his ability to filter sounds, find patterns in things, notice things that other do not see, and most importantly, in a social way, it hinders Morgan's ability to act like other kids (in my case, I silently scream thank God when I go to the grocery store and observe other people's offspring). I told Bailey that one of Morgan's special talents include echolalia, which is how Morgan can spit out phrases of a movie or the actual whole movie when they're playing. However, I asked Bay if he's ever noticed that when someone asks Morgan a question, Morgan might answer with a movie phrase that makes no sense. Bay answered in the affirmative. That, I told Bay, is echolalia. That, I told him, is an ugly side of autism, according to the looks we get.
Another one of his brother's talents is building. Morgan loves to build- train sets only. This irritates Bay to no end since he wants to builds lots of things. I told Bay not to take that away from his brother by making Morgan feel wrong for that. Morgan already got teased, you see, for his love of Thomas the Train and all things train related at school and only at home and in his homeroom does he really get to express that love. Realization dawned on Bay. He'd been really mean a lot to his brother, without really realizing it. I've always told him "no teasing or hurting your brother."
As I explained to Bay that, because of things related to autism, Morgan has to be taken out of his regular classes for therapies and resource, something that Bay will never have to do, Bay looked sad. He asked, "but why? Why does Morgan have to do those things? Can't you tell them to let Morgan stay in classes?" I told him, "Baby, I signed papers saying that Morgan has to be there; those extras help your brother learn better. The classrooms are too loud and the other places are giving him skills so that he can be more independent one day." "But I won't have to do that?" "No Bay, you'll be a regular student, learning reading, writing, math, geography, and going to recess- when you're good and do your work."
Then the hardest part... Bay asked why his brother didn't want to play with him a lot. Morgan can usually manage maybe 15 minutes, tops. After that, he needs what I now recognize as a sensory break (soccer practice and games take some slick maneuvering). I've tried explaining it to Bay before, but he's either been too young or ignored me. I explained tonight in the school terms that although he wants to, Morgan can't take the overstimulation and the noise. It sends his brain into a tizzy and causes it to crash, like a computer. Bay got it. He asked what he could do to help his brother.... and that's when I explained about God making HIM with an extra dash of special, too.
As best as I could explain to a four year old, I laid out what I expected from my younger son. I told him that some day, he might feel like the older brother. He might feel like he is guiding his brother through life and that's okay. It might not feel fair, but that's why God gave him that extra dash of special. That dash is made up of compassion, love, and all good things. It is going to help him and Morgan. That when he sees his brother getting teased and Morgan's not understanding it, Bay is to stop it ("yeah, I'll stop those bad guys!"). That when we're in public places and he sees Morgan wandering, to hold his hand or to call out to him. When Morgan's needing space, give him space. That when someone asks, tell them, "My brother has autism, and you're issue is?" That might be wrong of me, but Bay already sees me doing all of this and is my own personal mynah bird, you think he's not going to copy me?
I pointed out to my younger son that Morgan wants lots of friends, and even has a few. He asked me, then, why didn't I have a lot of friends. Hmmm, I thought.... Well... I told him point blank that I'm very protective over him and his brother. That I can't take people being thoughtless of either of them and treating them like crap. Case in point, the "friend" that stupidly told me that she imagined shopping with Morgan must be like shopping with a two year old. She smiled as she said it. It was like being stabbed. He's one of the best behaved children I've ever met and sweet, to boot. I told Bay about that and he nodded and agreed that the former friend was, indeed, mean to him, too.
My point in all of this is that if your child on the spectrum has a sibling, it's never to early to turn that child into an advocate for their sib with autism- and the thousands of kids similar to them out there. Your NT child will one day grow up as all children do. Your child will hopefully be compassionate towards everyone they meet, but especially those in the special needs community. I hope that my own ginger haired younger child will see one of his classmates in gym, one that acts an awful lot like his brother and is getting teased, walk right up to that kid and announce, "Hey, you overstimulated? You want a friend? I'm your guy!"
I'm raising an advocate, not a jerk.
Showing posts with label feelings of loss. Show all posts
Showing posts with label feelings of loss. Show all posts
Sunday, March 25, 2012
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...
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.
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.
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| Summer 2008 "summer of hell", photo by Mariah Bibbey |
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| May '07 pre ASD symptoms, photo by Mariah Bibbey |
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