While in the midst of trying to deal with Jonah’s diagnosis, a plethora of people have set out to push my buttons.
1. McDonalds Playplace Workers…really? The door to the play place should not be left open, especially when it is directly next to an outside door. And having a door opening/closing war with my husband was not a good idea, as I’m sure you learned after I started screaming at your manager, called and made a complaint to corporate, and made a complaint with the owner. It’s really not rocket science. Children run. Some children dart. We closed the door for a reason. But please, give me a reason to feel singled out because of my children again, and I’m sure I can yell loud enough the news will show up.
2. Local Librarian…really? The Summer Reading Program is only for “well behaved three year olds.” Yeah, that makes sense. We wouldn’t want those misbehaved kids around all those fragile books filled with knowledge. Psh. What was I thinking.
3. Behavioral therapist…ugh. Here is the thing. I may tell all you wonderful people my thoughts, but I never, ever tell them to people in my every day life. But when Jonah’s Behavioral therapist asked my feelings about him going to diagnostic clinic a week before he went, I opened up. I told her I wasn’t sure if I thought he had autism. I was still on the fence about it. I thought he had other things (which he was also diagnosed with). But I said an autism diagnostic would be easier for us, because most people know what autism is, and it makes it easier when talking to people.
It is much easier to say, “he has autism” than “he has a sensory processing disorder and expressive language disorder.” Most people have no idea what those are, which means every time I say those words, I have to explain them. Most people who are informed that someone has autism understand and don’t ask further follow up questions. After all that, we talked about my fears, feelings, and hopes for what the clinic would bring us.
Today I called her to ask about visual schedules, and she said, “I heard you got the diagnosis you wanted.” Now I know I’m still in the emotional stage of this all, but I just about lost it. The diagnosis I wanted? How could I ever want my son to have autism? How could I ever want for any of this to happen? I’m not saying I regret Jonah. I love him more than anything, but autism is not something I would classify in that way. Yes, Jonah has taught me so much. He is amazing. But he has challenges. I can’t even understand how hard all this will be for him, but every step of the way I will be there, because I am his number one person. But deep down, do I wish I could erase this part of his life and make him like his brothers? Yes. No one wants their children to suffer or be hurt or frustrated. Autism is not what I had in my future when I married my husband, when we got pregnant with Jonah, when we had Luke. Autism has never been part of my plan. But now, it is. It is the ultimate battle. The massive elephant in the room, smashing glass things into rock solid metaphorical walls.
And I’m so scared for what this means down the road. I don’t treat Jonah any differently than my other children. He is equal. But will that change? And if it does, how do I explain to the other boys that Jonah deserves different rules, different attention, more of me than they do? How do I tell his teachers that I don’t want him treated like he has something wrong with him? He can learn. He can do everything and anything, in his own time. Right now it may be a challenge, but just because it is, I don’t want someone to do it for him. How will he learn if everyone swoons over his red curls and takes care of him all the time? And how do to I tell people that sometimes he does need more. Sometimes he needs to be let alone. He needs to hide. He needs you to disappear. How will they know the balance he needs? How will they challenge him?
I expect a lot out of all my kids.
Jude is five and reading. He scored higher than most children in our district on his kindergartner screening. And I know Jonah won’t be reading by five. Hell, we will be lucky to have him potty trained by five. But Jonah is visual. He can remember amazing things once shown. So I show him, everything. I expect him to know and be able to point out colors, shapes, and soon, letters and numbers. And he can. Every day we work on them, and it is fun, and he loves it. But when he went for his school screening, they reported that he knew none of his colors or shapes.
I was speechless. Every day he nails them with me.
And then they explained that they asked him, “what color is this?”
Of course he failed.
There is a massive difference between knowing something inside your head and verbalizing it. Simply rephrasing the questions as, “which one is blue?” would have shown them just what he is capable of. And that brings me to what this very long rant is about, how do I teach other people how to communicate, get through to, and educate my very special son? How do put him on a bus and hope that the woman getting him off the bus will care as much as I do?
How do I politely say to the librarian, “My son can’t sit still or use glue or carry on a conversation with you, but he would sure love being a part of this program with his older brother.”
How do I make the world understand.