Clouds, May 2010

Clouds, May 2010

Tuesday, April 17, 2012

the downside to progress

Among all areas that Hayden exhibits challenges, his speech has probably progressed the most.

Less than two years ago when his language really emerged we knew it was a life-changer. And it has been-- helping us to understand the cause of some of his frustration because now he can use his words, and we are even beginning to have some conversations with him, and discovering all of this information that was tucked inside him that he was absorbing over the years.

However, Hayden has also gone through periodic phases of either saying words that sound inappropriate due to difficulty in pronunciation, or actually saying inappropriate words that do not sound bad... again, due to difficulty in pronunciation.

When he was in his second year of preschool (I believe), he began saying something that sounded like "fuck". So every time it came out of his mouth, we would ask, "frog?" or "truck?"

There was also "gay" and we would have to ask, "day?" Or something that begins with a "g" like "green". Because if we react to the fact that something he says is a bad word, it backfires and seems to motivate him to remember it.

Another one was "freak" and that one left his vocabulary for a long time & unfortunately it has recently re-appeared.

Sometimes I do not know what upsets me more-- the fact that we have so many challenges trying to correct his language, or the fact that the first thing many people ask is, "where did he learn that?"

Such a productive question, really.

Recently another horrible word has emerged. Hayden's speech now has more clarity than ever before-- so when the word "bullshit" escapes his lips, everyone knows exactly what he just said. The other kids on the playground can hear him loud & clear, the teachers in the halls, or the entire student body & faculty outside for a fire drill-- quietly waiting for four full minutes to go back into the building. Hayden might as well have had a megaphone in front of his face.

Tomorrow we have an appointment at the closest FX clinic to revisit medication options. We had been holding out for Hayden to participate in a clinical trial, which we just recently learned he is not eligible for. So it's back to the drawing board to consider off-label options.

I think my husband and I both honestly thought things would be much improved by now. Hayden is going to be seven years old in about two months. SEVEN YEARS OLD. He's OLD. He's a GROWN KID. And he still has trouble using a fork. And getting himself dressed. And following direction, and cleaning up his toys. He has yet to write his own name, or recite the alphabet. And most heart-breaking... he still hasn't mastered the basic task of toileting. One of the main reasons I began this blog in the first place... thought we'd have some progress to track.

But there was always the speech-- I always had that to hold onto. Focusing on just how much it has improved. I don't want to lose that happiness, or that pride in his progress. I think the three of us are long overdue for something to celebrate and be genuinely happy over... one new accomplishment, with no downside.

At this point I'd be happy with success at getting medicine in him.

So I guess we'll see. Have to determine an appropriate treatment medication, first.

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