Saturday, April 28, 2012

...I see disabled kids....

Hansolo goes back in May for her third speech therapy eval. We started teaching her to read a month ago and breaking her speech down to the basic sounds really emphasized just how off she is.

With the family history and speech issues I am concerned. While she was having services at the tail end of 2010 she plateaued. I then asked to have her put on inactive so not to waste services. All along I have been hearing slight things in her speech that just set my THAT IS NOT NORMAL alarm bells to ringing. But I have been listening to those bells so long I have grown deaf.

After KSS was diagnosed with Cerebral Palsy I lost my ability to see normal kids. Something about having a panel of doctors tell you that the beautiful perfect child you love so dearly has brain damage (even though I already knew as Grandma and I had diagnosed her with it year and a 1/2 earlier) has altered my brain.

I see disabled kids where ever I go. Its like my eyes zoom in on everything. I can't stop checking out the kids I meet. Was that toe walking, minor flicks of the wrist, eye patterns, speech issues, tics etc etc...I am seeing?

So since I can no longer tell whats normal and what is not I instigated a re-eval. She ages out of the system in Sept as she starts first grade. It will be much easier to roll over into an IEP if she is already back on and receiving early intervention services.

In the Star Trek series they use universal translators to communicate with other species...I wish my brain was hard wired into one of those. At work I have learned to understand and decipher stroke speech, Alzheimer's speech, Parkinson's speech etc.....

Resident restlessly thrashing in bed.

I lean over his bed and gently touch his shoulder, "what is it Mr. Y?"

"Mifoogisold" he says.

"your foot is cold" I say as I readjust his blankets.

I never had issues with communicating with my residents. Never.

But when JUR was young and talking normally at 2 years old and then suddenly his speech dramatically changed over night when he was 3 my ability to translate disappeared. Then to add to the issue everyone  kept telling me he was normal.

It got really bad before he got help. Botched referrals that never happened, phone tag that never ended. I finally took him to a early intervention round up and found a speech therapist and made her listen to him. I didn't leave that day until I had gotten him help.

Its awful not to be able to talk with your son.

Its equally as painful when he is talking to you and you can't translate.

When he was four he used to try to get me to understand something.

"Mama, fjliaehfu efifahiasf jfoieuowifh." he would say. (those are not the exact sounds, but might as well have been, that is how clear the words were.)

My heart would just crush. I would get down to his level and ask, "can you show mama?"

He would tear up and again repeat slowly "fjliaehfu efifahiasf jfoieuowifh"

I would then make some attempts at translating. Each time his face would fall further as I didn't get it. Until it got to the point he was crying and just repeating it over and over.

"fjliaehfu efifahiasf jfoieuowifh fjliaehfu efifahiasf jfoieuowifh fjliaehfu efifahiasf jfoieuowifh fjliaehfu efifahiasf jfoieuowifh fjliaehfu efifahiasf jfoieuowifh fjliaehfu efifahiasf jfoieuowifh"

My soul would just contort and turn inside out and feel as if it was being skinned with a potato peeler. By then I just hold him and cry with him. Occasionally sobbing, "mama doesn't understand, I'm sorry...I"m sorry."

At last he would give up, his shoulders would slump and give me that, you failed me mama shrug and he would go off.

I would retreat to the bathroom and punch my face till it bruised.

Bless his soul he never gave up on me and he tried for months to get me to understand him. Then one day he stopped telling me those words.

 I missed something important.

I missed nothing with Hansolo. As soon as I saw she wasn't speaking right at 2 1/2  I got her evaluated. Not old enough for services they reevaluated her ON her birthday when she turned 3. Once the speech therapist got her to slow down she had a good listen.  She told me she was no longer hearing anything that alarmed her so after 3 months of ST she went on inactive.

Han's speech issues have never been anywhere close to the degree of her brothers, to the point if I were a normal parent I might not even notice.

They might tell me next month that I am being a overprotective mother and I have nothing to worry about her speech is fine. That's fine. I can handle that. I am not a normal mother, nor can I be after where my lives journey has taken me. I get freaked the hell out when I see/hear anything that is not textbook-Gerber baby-100%-spot-on normal in my kids. And that is okay too.

I just want a professional NEED one actually. Just to put my heart at ease.

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