Clouds, May 2010

Clouds, May 2010

Thursday, March 1, 2012

the severe in perseverative

The other day one of those dreaded notes came home from school. H used the word "hate" in class. And even worse it was attached to names, so naturally some of the kindergarteners were upset.

We have heard that come out of his mouth in recent months, and have been working on trying to correct him. Sometimes his perseverative language is nothing hurtful at all, and sometimes it's even silly. But this time it is not.

I had such a lump in my throat when I read it, especially when the teacher offered one of the students names. A sweet boy whose birthday party H recently went to, and they even had a play date a couple weeks ago.

Fearing I would become too emotional if I tried to call the mom, I decided to email her instead to do some sort of damage control. I was also reminded of a book I once purchased, which addresses the ideas of acceptance: 'Special People, Special Ways' by A. Maguire. I have reached out to the kindergarten teacher to ask her to share with the class. As far as my message to the other mom, here are some excerpts:
"...[the teacher] mentioned to me that the word "hate" has been coming out of Hayden a bit much lately. There may have been an instance when he used it in E's presence. I know that Hayden genuinely likes E and does not mean some of the things that are blurted out of his own mouth. I am terrified at the thought of E's feelings being hurt."

"Sometimes Hayden tends to get stuck on words or phrases and repeat them for a period of time. When he is frustrated or just having one of those "off" days, he may use a word attached to someone's name even though he does not mean anything bad by it. We believe as his speech is still developing, so is his personal control of words and understanding of them."

"I wanted you to hopefully hear it from me first, heaven forbid E should come home from school one day and say that something happened. I know Hayden thinks that E is a fun kid..."

This angel of a mom saw my note, and responded that her son did mention that Hayden said something mean to him, that he hates him. She explained that Hayden didn't mean it and not to worry about it. She even told me not to worry, and added that as long as Hayden is up for it E would love to get together again.

As I sit here with welling eyes, I think most of the time parents of kids with FX focus their energy on helping them and also raising awareness. And perhaps they even begin to embrace the challenge as an opportunity to not only advocate for their child, but educate others. And of course keep hoping for a cure.

And I do feel that way most of the time.

But sometimes that 'hate' word, is the only damn word I can think of when I think of Fragile X.

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