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.