Thursday, January 27, 2011

You say tomato....

The Little Miss grunts.

A while back I mentioned I was worried about Sophie's speech development. She seemed to be progressing along normally until just around 18 months all progress stopped. She was no longer using two-word sentences and using very few words in general. It was either "eh eh eh" or "uh uh uh" or a point or sing language or some combination there of. We spoke to her pediatrician about her concerns but were told "She's still in the 'normal' range. Let's look at it again at her 2-year visit."

We switched pediatricians for her 2-year visit (same practice, different Dr. - long story). Anyway, we discussed our speech concerns and The Little Miss even demonstrated her "babbling" and lack of speech. Our pediatrician said there's some definite cause for concern so let's start the ball rolling for speech evaluation. That was in November.

I called the requisite numbers for all the referrals and were told "We can get you the hearing evaluation but speech evaluations are running 4 to 6 months out." Geez. Apparently I went into the wrong field! Her hearing evaluation was scheduled for early January, just after our holiday trip. We'd yet to hear from the speech people but were on the cancellation list so knew we could possibly get a call any time. As we assumed, Sophie had no hearing loss. Two days later, we get a call from the Speech center with a last minute cancellation. Literally. They called at 9:30am for a 10:30am appointment. The Little Miss wasn't dressed, I was dressed but not for public consumption and it takes us 45 minutes to get to the hospital where the evaluations take place. C-razy! But knowing how long it takes to even get an appointment I jumped at the chance. We made it, with 5 minutes to spare.

After an hour and a half evaluation with a FABULOUS SLP we learned Sophie does indeed have a delay. She has a greater than 50% deficiency in "expressive speech and language". In some language areas she's functioning at a 36 month level but in expressive speech and language she's barely functioning at a 15-18 month level. (Which makes sense as that was when she stopped progressing normally speech-wise.). There's some concern she may have a possible motor disorder called Apraxia of Speech (or Speech Apraxia). She has several "characteristics" of Apraxia of Speech like being able to do something once then never again (two word sentences, saying a word once then never again, etc). Other characteristics include having trouble forming the sounds and words consistently. Sophie can watch our mouths closely and attempt to make the sound but come out with something totally different. Unfortunately, Speech Apraxia can't really be fully diagnosed until age 3.

So where does that leave us? In limbo, really. Our insurance will not cover speech therapy for developmental delays. It was recommended that The Little Miss initially receive 16 weeks of therapy with a re-evaluation at 12 weeks to see how she's progressing. Through a local hospital and The Children's Miracle Network's Helping Hands program we can receive 4 sessions. That still leaves 12 sessions to fund. We're in the process of getting The Little Miss evaluated for Early Intervention home therapies. Generally, children like Sophie with one deficiency don't qualify BUT we learned recently there are funds available for just Speech Therapy. We're keeping our fingers crossed she qualifies. We have a couple of other options to look into but if she doesn't qualify for anything else we'll be paying out of pocket.

Next month, well week actually, she's being evaluated for EI services. The following week she begins the first of four sessions through CMN. Family members have asked if I'm "distraught" over her diagnosis and I'm not. Not at all, really. I'm glad to know I wasn't crazy and my concerns over her speech were founded. I'm glad we know what's going on; why she's delayed. I'm glad other people (outside of family/friends) are seeing just how bright she is but how frustrated she gets when we don't understand her "jargon". I'm glad she's going to be receiving help and we're going to be learning some tools to work with her at home. She's already making progress. Since her initial evaluation we've been practicing using two-word sentences and focusing on the ending sounds of words she knows. She's been using those words more and more and trying to use sentences when she can. She gets frustrated when she fails (head down, bottom lip out) so we encourage and get excited about EVERY attempt. It's going to be a long process. She should catch up we just don't know how long it will take. I'm heartbroken to see her so frustrated at times but thrilled to see her eyes light up when she KNOWS she said something correctly and we understood her.

We hope to report, in a few months, that we can't get our little jabberbox to STOP talking. I'm positive she'll be full of some VERY interesting and imaginative stories.
A cousin's tutu makes for a great head piece!

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