Started to tell him

How do you tell a child, “You have a disorder.” ? How old must they be to understand it? What if their cognitive understanding is advanced but their emotional skills are behind?

It’s not like saying to Eli, “You have asthma. This makes you a little different.” Sure, I can say that to Jonah, but the truth of the matter is that he will think there is something wrong with him, no matter how hard I try to convince him otherwise. I don’t think there’s anything wrong with him at all. I have grown to thank God that my child has a gift. My husband and I have never wanted to be like everyone else – how on earth could we expect our children to be any different?

He’s started with comments. He told his wraparound yesterday that she would not be with him in the fall. She will be with him in the fall, he has not completely met his goals. But he told her that he didn’t need her anymore and she could stay with his old teacher. He didn’t need anymore help. So he knows. He knows that he is different. He knows that she is there for him. He knows he’s the only one who gets OT.

I decided tonight to start to talk to him about it. I told him a few weeks ago after a disastrous walk through a casino and a near meltdown at Rainforest Cafe that he experiences everything more intensely than others. He got that. So tonight I asked him, “Do you know why you have Marianne?” He nodded. “Do you sometimes wonder why you are the only one with a Marianne?” He nodded again. He loves Marianne, but he hates her lipstick. So therefore, he hates her.

So I told him. “You’re a little bit different than everyone in your class. But you are special, not worse. You are smarter than everyone as well. So sometimes you have trouble controlling yourself. You have Marianne so that you have someone to go to when you feel out of control.”

I started to feel like I was going too deep. Geoff stopped me. I ended with telling him that his friend gets OT as well, but I don’t think it helped. I wasn’t prepared, and I wasn’t ready.He wasn’t ready to accept what I was telling him, either.

I want him to see, like I do, that he has a gift, not a disorder. Now if only I could figure out how to do that….



Filed under Special Needs

2 responses to “Started to tell him

  1. Karli C.

    Ali- i believe you are doing the right thing. ALL kids are different in their own ways of course, but as parent’s of ‘very SPECIAL kids’, we must learn how and when. AND of course, not to be too literal. Jonah sounds like a great kid. I’m sure that with time, he will “get it”. Good luck to you and your loved ones in this journey ahead. My husband and i are also trying to “cope with our newly diagnose”. Love your blog, thank god i found this. =)

  2. Ali, I just discovered your blog. I think you know your child and your instincts are right. Jonah’s a bright boy and by explaining to him WHY will bring him more comfort rather than him noticing differences and not understand the reason behind them. You are seriously doing such a great job as a parent!

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