Friday, June 6, 2014

Speech for Ethan -- a Parent's Quandary

Since the time Ethan was a baby, and he didn't babble as normal babies do, we've been concerned about his difficulty with speech. People tried to reassure us that he'd "just start talking in sentences" once he "decided" to talk, but that was not the case. It wasn't until he got one-on-one therapy in Oxford, at age 3, that he even spoke his first words. And when I say "words" I mean things like "bee" to mean "tea" and "toe" to mean "toast" (very important first words in Britain!)

After just a few months of therapy in Oxford, we moved to Amman, Jordan. We actually only agreed to that relocation upon hearing that there was a private special education school in the city that offered speech therapy services. Even though we were receiving no income at the time (Steve was a full-time Arabic language student), we 'invested' our money in private therapy for Ethan and he blossomed under his therapist Maha's direction. He could finally produce some of the tricky sounds that had previously eluded him.

Despite the impressive improvement, most people still couldn't understand Ethan, and when we moved to the U.S. in 2011, he easily qualified for speech therapy through the preschool program in Rockbridge County, Virginia. In fact, the evaluating therapist was frankly baffled by Ethan's speech problems, and said he'd never seen a student quite like him before. Ethan's intelligibility was low in conversational speech but much better in single words. Some of his sounds were so strange, the therapist was tempted to say he had 'speech dyspraxia,' but since Ethan didn't really fit the criteria of that diagnosis, no official label was given.

Within days of having Ethan's IEP in hand, we moved to Washington, D.C. where we'd been told he could receive therapy at our local Maryland school, even as a homeschooler. Sadly, this was misinformation: it turned out that every school district has the choice of whether or not to help unenrolled students with special needs. And Prince George's County most decidedly does NOT help. So Ethan spent his first two of three eligible years *not* receiving any services. His intelligibility steadily improved, which we were thankful for, but when the time came to move and we looked for a new house, a primary concern was finding a school district that would help him.

Here in Fairfax County, Virginia, the local school has indeed acknowledged Ethan's IEP, and been willing to give him therapy despite the fact that we homeschool. We are grateful. The school is a ten-minute walk away, and he's gotten 1-2 hours per month of help there. But compared to the other three therapists Ethan had in the past, this one has been the least effective, concerned, and thorough. It's been disappointing. She has focused solely on his ability to read aloud and produce sounds when given those visual cues. She has noticed new problems but never put them in an official IEP update. She claims that he's reached 90% accuracy without hearing him talk for long stretches and using a ticker to keep track of his errors. And now, near the end of his eligibility window, she's firmly saying that he no longer needs services and will not get a new IEP.

Ethan's sounds certainly have improved, and some people who hear him talk have no problem understanding him. But I still hear many problems in his speech: final consonants dropped ("God" is pronounced "Gah" routinely), indistinguishable medial vowel sounds (short i and short e sounding the same, for example), a very indistinct /er/ sound in the middle of words and weak /r/ in general, to name a few. Additionally, his multisyllabic speech, especially in conversation, is difficult to understand. 

So now I'm stuck, not knowing whether I'm just being over-anxious or whether I'm justified in my concern (especially given his dad's speech difficulties and other family history). I'm stuck not knowing whether I should pursue the possibility of further eligibility by going to the head of Fairfax County Special Services, or whether I should take the therapist at her word that there's nothing more to be done. Maybe Ethan's continuing maturity *will* straighten everything out in the end. Maybe there's nothing more that professionals can do. Maybe it's all up to me and him now. I just know that when professionals told Steve's mom to not worry about his speech issues, assuring her he'd grow out of them, they were wrong. Steve did need more help, and I even wish he'd gotten more than he did. 

What will help Ethan most in the long run? Do I keep pushing 'til the head person finally says "yea or nay"? My son loves to talk, loves little more than chatting even to strangers. My hope and prayer is that his speech becomes as 'normal' as possible, so that he can maintain his verbal confidence and be understood as he shares his voice with the world.

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