I’m up with Johnny Ben again tonight. Yes, it’s 4:30am.
I’m not looking for sympathy. He’s been the cutest, sweetest, and kindest little boy imaginable tonight, as he is almost all the time. It’s just that he’s awake. Considering his stages of sleep are not like the rest of ours, it happens from time to time.
Most of the time, this is how he is. A funny little guy who loves to hug and laugh. I‘ll be honest and say that sometimes it’s not like this. Sometimes he cries and can’t tell me what is wrong because he doesn’t speak much. He honestly does not know how to tell us what is wrong. He doesn’t try to be “bratty” or “weird” or anything else. But he, Bobby, and I do the best we can to work through it. It’s far from easy, but we manage.
A little over a year ago, a member of the court told me that it was my “choice” to have him, whether I knew something would ever be wrong with him or not, because I should have known that it was a possibility. She said I had “options,” that I should have thought of the “what ifs” before he was born because of the hardships that raising a child with severe autism may bring our family–even if I didn’t know at the time that he would be severely autistic. This was not a member of congress I was in front of, this was me simply standing up for myself in court stating I have 5 other children and that one was severely disabled. I wasn’t asking for special treatment, just stating the fact. Let that sit a bit. This is how MY government views MY baby.
Let me just say that Johnny Ben has never brought any member of our immediate family any grief. Those in our close family love him and are not at all “put out” by him. All 4 of his siblings love him, and if you know what Bobby and I are like, imagine what those 4 kids are like to stand against. You don’t want to attempt it, trust me. He. Is. Loved.
He also has many extended family members who love him and would do anything for him–uncles, aunts, cousins (not just first, but twice and multiple times removed) and many other family members and friends who have never met him face to face.
He senses more than most will ever understand, and when he feels we are blue, he makes sure to cheer us up. When we are happy, he becomes ecstatic. He understands more than we think, and is rather sensitive to emotions and tones of voice. He’s a funny little rascal, but more than anything he’s lovable and kind. (Even to Molly, his little sister.)
He also knows when someone doesn’t like him, or says mean things to him. When they try to pull tricks or say mean things, he catches it and snarls. Don’t think for one second he doesn’t get what’s going on. It also means the rest of us know, so keep that in mind.
So the next time you look down on someone you think “doesn’t understand,” think twice. Chances are, they see right through you and already know more about you than you know yourself.
I can’t tell you how many times he or his siblings on the spectrum have been upset over a “friend” or family member saying something to or in front of them because of their disabilities. Sometimes there are no words, but body language, a visual expression, or just a “feeling in the air” to let them know someone’s feelings about them. I mean, really, in this day and age we live in, it’s completely uncalled for, no matter how old you are. It shouldn’t even be a second thought.
The bullying and violence on those who cannot defend themselves has to stop! Our society has to knock the whole “If I don’t acknowledge it…” act off. We all know it is happening. So stand up. If you see it, say something. Do what you can. If you can’t stop it, call someone who can stop the action. Whatever you do, don’t stand back and pretend nothing is happening, because if you do, then YOU are held responsible for not stopping it. And while right now you might feel okay with that, it will eat at you. Forever.
This includes treating the parents of special needs kids as if there is something wrong with them! Stop ignoring the friend who has a child with special needs. Instead, call them and see if they need to talk.
Last I checked, Autism, Down’s syndrome, and many other disabilities aren’t contagious. Stop acting as if they are.
Those who cannot defend themselves are not “gross” or “weird.” They are human, just like you. Treat others how you want your children to be treated, and teach your children to do the same.