The Many Voices of Apraxia

Denise Smith Amos of the Cincinnati Enquirer describes a severe case of Apraxia of Speech:

EVENDALE, Ohio (AP) — At 18 months old, Phoebe Krause’s silence was telling.

The West Chester toddler did not babble. There were no “Mama’s” or “Dada’s,” just silence and screams.

Her mother, Stacy Krause, was worried. A pediatrician thought the problem was socialization and recommended putting Phoebe in day care.

But at day care, Krause said, “Phoebe was withdrawing further and was constantly laying in a corner, clutching her stuffed pig and trying to soothe herself.”

Phoebe, now 4, was diagnosed at age 2 with childhood apraxia of speech, a neurological disorder that affects the motor skills that result in speech. Phoebe knew what she wanted to say, but not how to say it. She would need intensive speech therapy.

Ms. Smith Amos goes on to cite an estimate by therapists working at Nationwide Children’s Hospital in Columbus that anywhere between 1 and 10 children per 1000 may suffer from Childhood Apraxia of Speech.

I wonder if one reason why Apraxia is so under-diagnosed is because of the wide range of delays involved. Some, like Phoebe Krause, don’t talk at all, while others, like my daughter Anna, talk constantly but are all but impossible to understand.

Call it the many voices of Apraxia. All different, and all unintelligible. Each one concealing a little mind trying to make itself understood.

In Anna’s case—because she babbled—we didn’t suspect anything was wrong until after she turned two. As other kids her age began talking—first words, then phrases, and finally complete sentences—we still had trouble fishing out more than a few words from a rushing stream of unintelligible sounds.

We were fortunate that Anna had been born with a cleft lip. I know that sounds weird, but it’s the truth. We’d been taking her up to Doernbecher’s Children’s Hospital in Portland for regular follow-up appointments since her surgery at four months old. The cleft team at Doernbecher includes surgeons, nurse practitioners, audiologists, and a licensed speech therapist.

If it hadn’t been for Anna’s cleft, we may not have gotten her help quite as fast. We might have just figured “oh she’ll catch up soon enough.”

Kids with Apraxia of Speech don’t catch up. They need regular, intensive therapy. Anna met with two different speech therapists each week for a year and a half. As she improved, she reached the point where group therapy would be more beneficial, so now she attends a preschool designed specifically for kids with communication disorders while continuing individual therapy once a week.

She has a long way to go, but she has made amazing progress in the last two years. At three years old, my wife and I understood her about 20 percent of the time while strangers couldn’t understand her at all. Now we understand her about ninety percent of the time, while complete strangers pick up about three-fourths of what she says.

She wouldn’t have progressed this far without the help of several dedicated speech therapists who gave so much time and energy to help her express herself. As we celebrate her fifth birthday tomorrow, the gift I’m going to be most grateful for is the ability to understand my own daughter.

Her voice no longer conceals. Instead it reveals the brilliant child that Anna has become.

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