Isolated, in my own world, I have no more than a passing glance at other children my son’s age or younger or older for that matter. He’s the only one. How different could he really be at age five?
Then, yesterday, when I was in a group, the polite people called me out. They took me in a room and left my son with his aides. There was no smiling. I felt uncomfortable, isolated and scared.
They dropped these words:
“We don’t think your son should remain in his kindergarten class.”
As I reeled from this punch, I caught my breath enough to flail a wild punch that struck air.
“But he is having no trouble with his homework. He is learning to write. He is doing the worksheets!”
Silence. They watched to see if I’d get up again. And then, just as I sat upright?
“Academics is not the issue. That is not our concern. His receptive language and his expressive language is not there. He cannot focus. He does not follow instruction.”
ZAP! ZONK! Whacks to the side of the head. What the hell? My head was spinning. Down the hall, through the closed door, I could hear my son talking to a tutor as they took him outside to play with something as a reward. It was so ethereal.
More silence. They watched me try to recover. No teeth. No smiles. Nothing more than anticipation of my next move.
“Wait. Why can’t you teach him to receive the language, to express the language and to focus? Isn’t that what you are for?!” (Possibly said a little nicer – no guarantees after two successive blows, both of which knocked me down).
No smiles. Looks of condescension. Pity.
“Let us put it this way. It’s like if I took you from basic math to fourth level theoretical physics. I could put you in that classroom. You’d pay attention to the first couple of minutes, but as soon as the equations went over your head, you’d say, ‘You lost me’ and tune out. That’s what is happening here.”
Politely again, they had removed my rose-colored, heart shaped glasses, dusted me off, then dropped the glasses on the pavement and ground them to dust and shards with their shoes. They gave each other a passing glance of disapproval and looked back at me.
My heart was broken. I could see the blood running straight from my heart onto the pavement below. The streaks of red mixed with the ground up rose-colored glass and my tears. Pointing to the mess, they screamed.
“CAN YOU SEE IT NOW? IT’S ME, AUTISM. I HAVE LOTS OF VOICES. YOUR SON HAS ME INSIDE HIM. YOU CANNOT WISH ME AWAY. WAKE UP! YOU CANNOT PRETEND HE IS NEUROTYPICAL. YOU NEED TO FACE REALITY.”
They pushed my face against the asphalt. All those haunting voices of autism.
“We would not be here if your son could walk into a kindergarten class and flourish. You would have never needed us if he was going to make it on his first try.”
The beating, accompanied by these extra slaps, was making some sense to me. Yes, I would tune out if I skipped 17 intermediate steps between one class and the next. My son cannot follow a 15 minute story. He cannot follow 10 step directions provided in a group and go to a table to perform the task just given to him. If he makes it to the table? He spaces out. He does not do the task. He does the task 1/3 of the time when prompted repeatedly.
Autism is ugly. It is cruel and it is a disability. My son? He is beautiful. He is kind and smart and good-hearted. Autism is a villain. It has my son hostage. People want to say autism can be beautiful. Autism is not beautiful. The child is beautiful. All children are gifts from God. Some people say autism is part of who my son is and if I don’t love it, I don’t accept him for who he is.
That’s just not true.
If my son had a wart on his nose, I would not say it was beautiful nor that I wouldn’t love my son if I sought to get rid of it. Autism, to me, is no different.
As my face was pressed against the cold pavement, I realized something. My son and I? We’ve never had a “normal” conversation. I’m not saying I need one or that I don’t love the exchanges we do have. Any time there is communication, it is like gold. But there has never been a time that he said, “Hey mom, whatcha doin’?” There was no time that he said, “This girl is chasing me on the playground.” There was no time in his life that he said, “I don’t wanna…(insert anything here).” Instead, I get handed a remote control, “Watch baby hawks. Rewind.” on the 12th time in a row that we watch the same 20 second segment of Team Umizoomi.
I could give you some sappy crap that it’s okay. But you know what? It’s not okay.
Life is out there. It’s happening for everyone else in a different way. We’re living in a time warp. It’s slow in here. And everyone out there? They can’t understand why we are in here. I don’t understand why we are in here.
I specifically know at least one person who will say, “Aww, just put him in with the other kids. He’ll figure it out in his own time. Don’t pull him out.” Do I really want to explain what is going on? Will she even listen to that? People only hear what they want to hear. And it’s hard to explain. I can never really convey it right. “Why doesn’t your son answer me?” “Why is your son so rude?” “Why don’t you control your kid?”
Can any of you really say you understand “autism”?
No one outsmarts autism. Some people hide autism pretty good. Not in this house.
And guess what? Even with all my lawyer tools, I can’t appeal the ruling of “autism”. It’s stuck to my son. It’s not going to let go. And it hit me hard yesterday. It threw my rose colored glasses off.
I’ll get up again and again and fight for my kid. Just like we all do. It’s just not easy to be upbeat about it all the time. Today is one of those times.