And How Do You Pronounce Apraxia????

It has been a long couple of days. C was just diagnosed with apraxia of speech after a very long, very slow evaluation process. We have always known that his speech was "not quite right" and starting at about a year I started making noises that I felt something needed to be done. Finally, when he turned 2 and 1/2, everyone involved agreed that we should start the evaluation process.

Our first stop was the state's early intervention program, which determined that while he was delayed in articulation, he was so far ahead in receptive and expressive language that he did not qualify for the program. I went back to our pediatrician, who immediately referred us to the speech therapy department of a local hospital. They refused to even contemplate seeing him until he had a hearing test, so we took the child who can hear an airplane a county over or a whisper two rooms away to have his hearing evaluated. No surprise to anyone, he passed with flying colors.

I then called the speech folks back to schedule an appointment, which took another six weeks. Tuesday we finally had the evaluation, and at the end of it all the evaluator told me it was apraxia and she was recommending two sessions a week. I had never heard the term apraxia before, but how she described it didn't sound too horrid to me, so I nodded and said OK, and went home happy that someone had finally agreed that my son needed therapy and was willing to provide it.

The written report arrived in the mail on Friday, and while I didn't understand a lot of it, the words "severely impaired articulation skills" and "severe articulation disorder" jumped out at me. I briefly debated starting to research it all, and then decided that I had wanted him to get into speech therapy, he was in speech therapy, and I would go from there once we met a therapist. When I relayed this decision to B, she acted surprised, as I am a research it all to the nth degree type. I held to my guns, and insisted that I was happy with where we were and going trolling for more info on the web would just lead to trouble.

Less than an hour later I was in tears at my computer as the first few sites I found started talking about using a computer for assisted speech and children never learning to communicate verbally. I should have stuck with my first instinct and waited for the therapist's opinion. Since I had plunged in, however, I had to keep plunging.

After hysterical phone calls to B and my mother, both of whom talked me down from my panicked state, I dove back into my research with a determination that I was going to solve this before we ever saw the therapist.

After reading tons and corresponding with several speech therapists/language pathologists (thank you again if you are reading this!) online, I am less convinced that apraxia is our issue, although he obviously stills needs therapy. The diagnosis is less important than the final outcome, obviously, but I want to make sure that he gets the right therapy for his particular issue instead of wasting even more time on unproductive approaches. And, quite honestly, apraxia scares me. If that's what it is then that's what it is, but somehow a phonological disorder (the other suggested diagnosis) seems less scary.

Regardless of the terminology, however, I am now faced with the challenge of fighting tooth and nail to make sure that he gets what he needs, and that is going to be the hardest part for me. By nature, I tend to defer to the experts (I let the wedding folks plan my wedding, let my OB call the shots regarding my pregnancy and delivery, let the lawn guys prune as they wish, etc.) Now that it my son on the line, however, I feel the need to insist that I know every detail of every decision. Not having ever ventured down this path before, however, I'm a little unclear on how to be a mama bear. I've been practicing in the mirror "Tell me again why you want to do that (grrr)" and "Explain exactly what that means and how it impacts my son (grrr)" and "I don't agree, I want another opinion (grr, grrr)."

Come Monday I am sure I will be logging many hours on the phone talking to therapists and insurance companies, but for now I just want to spend the weekend snuggling my absolutely adorable son. Which I apparently do not do enough of as everytime I hug him and kiss him and tell him how much I love him, he pulls back and looks at me and asks if I'm OK. I'm OK sweetie as long as I have you.