2019 Northern California Walk for Apraxia

Team Torsten

Torsten's dad, Taylor Kayatta, elegantly describes Torsten's journey on his personal page. I cut and pasted it below for you to read:

According to the Mayo Clinic, "childhood apraxia of speech (CAS) is an uncommon speech disorder in which a child has difficulty making accurate movements when speaking. In CAS, the brain struggles to develop plans for speech movement. With this disorder, the speech muscles aren't weak, but they don't perform normally because the brain has difficulty directing or coordinating the movements. To speak correctly, your child's brain has to learn how to make plans that tell his or her speech muscles how to move the lips, jaw and tongue in ways that result in accurate sounds and words spoken with normal speed and rhythm."

My son Torsten has childhood apraxia of speech.

My wife Teresa and I become very concerned about Torsten's limited expressive language when he was around one year old. He was very intelligent but wasn't trying at all to talk. By eighteen months, he could not even pronounce one word accurately. We brought our concerns to his pediatrician, and he told us that Torsten was probably just shy and that, in any case, many boys are slow to speak. We got a referral to a speech therapist with our medical group, and she told us not to worry because "there is no way he won't be talking by Kindergarten," while handing us information that implied we were the cause of his speech delay because we did not pay enough attention to him and because I, as his father, was not a strong vocal model (because apparently I didn't talk around him enough or something). We continued with the speech therapy, but it was wholly unhelpful and brought us no closer to understanding what was going on with Torsten. We had read about early intervention and asked for more intensive therapy, but our medical group denied our requests because the speech therapist continued to think Torsten just needed more help at home - help which we now know we were unable to provide because CAS requires very different speech therapy than typical speech delays.

We finally got help through the school district, but it was not easy. When Torsten qualified for services at three years old, he only had around five words that even we as his parents could understand. We got him assigned to a speech therapist at the local elementary school, but he was treated as if he had a standard speech delay. The therapist was right out of school and, although she was great with Torsten and really wanted to help, did not have the tools to do so. At five years old, Torsten's CAS has finally been recognized thanks to our continued research and Teresa taking him to get an independent evaluation. Torsten finally has an IEP that provides the services needed to address CAS after we all but sued the school district. He is still difficult to understand and has difficulty conveying a lot of information, but he is at least at the point where he is willing to try when someone doesn't understand him the first time he says something. He has a long way to go, but he is finally on the right path.

Every dollar raised in this fundraiser helps support Apraxia Kids. Would you please consider making a donation? Your donation goes to fund amazing programs like iPads for children who need it to communicate, parent and speech therapist workshops, research, and a program to assist families in need with speech therapy costs.

Thank you again for your support in this very important cause.

 

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