April is Autism Awareness Month. Parents and professionals are pushing Autistic children on the world at large. Media outlets are bombarding you with it; news broadcasts will highlight a family in the community that lives with Autism to show you how difficult their lives are. "Experts" on both sides of the issue debate (although it sounds much more like arguing) the causes and treatments. The message is that by being exposed to all these programs, you will become more aware (and tolerant) of Autism. In my opinion, our kids turn into freaks at the sideshow. Every day in my house is Autism Awareness Day. My oldest son is Autistic. You can't learn my life in one day, one week or one month. Because it's taken YEARS for my life to get this way. And my life changes all the time to accommodate the changes my son's going through. I do not go out of my way to celebrate Autism Awareness.
I can tell you how wonderful my son is. He's smart, sensitive and inquisitive. He's kind and he's learning to be empathetic. He loves to read and be involved in family activities. Now, don't be mislead into thinking that I look at my son through the rose-colored lenses of motherhood. I see him for who he is. He needs constant direction and redirection ALL. DAY. LONG. When he gets stuck on a subject, he cannot focus on anything else (get him started talking about dinosaurs or Pokemon characters and you may be sorry). He is extremely rigid and if things don't go the way he thinks they should, he breaks down emotionally and may start crying. (He's 11 and going through that awful middle school "clique" stage and that is unfortunately ostracizing him from his peers.) Parents of neuro-typical kids tell their kids to brush their teeth and take for granted that it's going to get done. I don't. Because I know between the telling and the execution, a lot gets lost in translation. He may look like he's consciously ignoring me. But I know he's not. I've been doing this a long time. And to some, I may look like a helicopter mom. But I'm not. I'm just being the kind of mom my son needs me to be. And it's exhausting. Because I'm constantly on call. There is no guarantee that when I send him to bed for the night, that my day is done.
Motherhood is NOT for sissies and raising disabled kids is reserved for the bad-asses of the mother bunch. Advocating for special needs children takes a backbone made of titanium and a determination that even the second coming of Christ can't shake. Because it's not just strangers you have to defend your child to, sometimes you have to defend them (and your decisions in raising them) to your own family members! I have to teach my son habits and behaviors that make him socially acceptable to others. I have to teach him to understand his own disorder so he can advocate for himself when he's away from me. I have to teach him to be able to accept how the ignorance of the person next to him has NOTHING TO DO WITH HIM and how NOT to let it hurt his feelings. I have to fight for services from his school (who, regardless of the law, will do whatever they can NOT to provide services because they don't want to have to pay for it) and I have to fight for a spot for him for the limited services that are available (and once I win that spot, I have to pay an ENORMOUS fee for them because insurance doesn't cover treatments for Autism).
We also make him follow a special diet. We exclude certain foods from his diet because we've found that they affect him negatively - both his language and his behaviors. It's a strict diet, and it has to be. So it excludes other activities from his life. We don't have birthday parties at Chuck E. Cheese. And when he gets invited to one, please don't look at us cross-eyed when I call to talk about the food that will be served - because we'll be bringing our own. And when parents plan an impromptu birthday party at school - complete with cake and ice cream - my son can't participate. He has to sit there and watch the rest of his classmates eating treats and having a great time. Last year, a little boy in his class thought it was a great way to bully my son. This little boy messed with the lunch my son brought from home and touched him with foods he's not allowed to eat to see how my son would react. These are not the peers I want for my child to grow up with.
There are nights I can't sleep. Worried about the world he's growing up in. Worried about whether or not something I did earlier in the day was too hard or not hard enough. Worried about what's going to happen to him when I die. Worried about him being accepted by his classmates and neighbors. Worried about the kind of adult life he will be able to lead.
Realistically, do you know what you can do for us moms of disabled kids? Teach your children tolerance. Teach them that my child is different, not less than they are. That he has just as much value as everyone else. That his strengths should be just as celebrated as everyone else's. Tolerance is the way for us as a society to accept and embrace everyone. Then we won't need Autism Awareness Month. Because it won't matter.
Happy Raising.
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