a blog about raising a daughter with cerebral palsy and learning unexpected lessons along the way

Wednesday, May 30, 2012

Time to Script

From May 21st through the 24th, our family was in West Bloomfield, MI where we attended a 4 day speech camp with Oia at The Kaufman Children's Center (KCC). In all honesty, we had no idea what to expect. We just arrived at our first session with hopeful hearts and as it turns out, those 4 short days were exactly what we had been in search for for a really long time. Let me explain.

About 8 months ago, we (rather Rob) stumbled upon KCC while cruising the internet for therapies used to treat kiddos who battle with childhood apraxia of speech. Our current therapist does not have training in any specific technique geared for apraxia but she does the best she can with Oia. But still, we felt like we were cutting Oia short by not seeking a more specific approach for her diagnosis. KCC, more specifically the founder of KCC; Nancy Kaufman, has spent her entire professional life creating, perfecting, and implementing her technique to help children chisel away at their apraxic obstacles. It's called the Kaufman Speech to Language Protocol, or K-SLP. I was on it.

So last fall, I video'd a few short clips of Oia during one of her speech sessions with our current therapist and submitted them directly to Nancy Kaufman for a consult. It's a service she provides for those who live far away. She reviewed my material and called me within 48 hours after submission to say that she was willing to treat Oia. She noted the potential she saw in her and felt her technique would prove beneficial. It was an answered prayer. It was all I wanted, just a chance to try. The holidays passed and the new year came, preschool broke for summer, and Rob's travel/work schedule provided just enough of a gap that we were finally able to set our camp date. We had been anticipating last week for a really long time.

The sessions were a lot for Rob and I to take in. Each were a short 30 minutes (a total of 7 sessions in 4 days) but very intense and fast paced. It was a true picture of quality vs quantity. We sat staring through a one-way observation window from an adjoining room as Nancy pulled sounds and words from Oia that we had never heard before. She made it look so easy. Our mouths hung open and our heads overflowed. Wonderfully shocking. All three of us learned A LOT.


Because it's so complex and there's no way to share everything we learned, here's the idea. First, approximate. If a child can learn to make their best approximations of words, consider it a starting point. As time and therapy goes on and language skills continue to develop, then you can help the child bridge the gaps and fill in the missing parts. For example, Oia says "caw" for car. R's are not something she can easily produce and the placement of certain letters (like R) within the word makes a big diffence too. As I learned from Nancy last week, breaking down words to their simplest form and encouraging Oia to make the best word approximations is perfectly okay. Think "weh-ter" for sweater, "s-ide" for slide, or "pee-po" for people. You get the idea. If Oia said "I go down side" you'd still know she was telling you that she goes down the slide.

Second, script. To ask an apraxic child to come up with the answers out of thin air to a question you've just hurled at them is extremely hard and in some situations, it's nearly impossible. Instead, scripting safely facilitates a response or answer for your child. But first, we must figure out what Oia wants/needs. Here's an example. Oia may bring me one of her baby dolls and without thinking I'd say "What do you want me to do?" but a better way for me to help her is to say "Do you want me to hold baby?" By doing so I've answered her question with what would be her answer/request if she could speak it independently, which is "hold baby". If that is in fact what she wants me to do, then I say to her "Tell me: Mommy, hold baby." Then I'd immediately script the words "Mommy, hold baby" for her using as little verbal or visual cues as possible. Scripting is word for word, or sound by sound. I cue the first word by making the /m/ sound, she'd follow by saying "Mommy". I cue the second word with /h/ sound, she'd follow by saying "hold". Same with baby. That's scripting; creating your child's dialog when they can't create it on their own. Scripting over and over again trains the brain and over time the cues should fade and eventually Oia should be able to speak more words independently with some spontaneity. So far, Oia has been very receptive to scripting and we do it just about all day long. I have seen a number of positive changes in her already.

We concluded the camp with one final consultation with Nancy after Oia's last 30 minute session (which she rocked!). Rob and I had the opportunity to ask all the last minute questions we could possibly think to ask. We also talked of returning for camp 2 in the future, which we plan to do. Nancy provided us with new speech goals which will be formally written and sent to our home along with all the video'd sessions. I will be sharing these goals and videos with her private ST and her school ST as soon as they arrive. In the meantime, I've made it my personal mission to get my hands on the K-SLP materials that Nancy used during camp. Overall, the trip was well worth the 600+ miles one way and ironically, Rob and I were the speechless ones. Just grateful beyond words for the opportunity. Consider hope restored. Oia Teaster has a lot to say and one day we WILL hear all about it.



Photos of Nancy and Oia on the last day of camp.






9 comments:

  1. So glad that you were able to do this for Oia and yourselves. My Emma, age 8, with spastic quad CP, is also struggling with apraxia of speech. I ran across the Kaufman approach last year. I bought every card I could get my hands on. But, I really appreciate the insight that you provided here. We have not had much luck with local speech therapy either. I have not been able to find someone who understands Emma's serious physical disabilities, accompanying fatigue, and apraxic-like issues. In 8 years, sadly very little has been accomplished through SLP with Emma in my very rural community. I have even tried to get Emma into larger clinics: but after we get on the waiting list, it is still a long wait. Then, we have to drive like 2 hours each way to get Emma there. By the time we get there, Emma is so fatigued that she cannot truly demonstrate her potential. So frustrating. I have considering doing just what you did for Oia--making a consult with the guru herself. But, I am afraid she would either not take Emma because of her severity or that we would go all the way there and Emma would be too tired to participate. Both scenarios have happened more than I like to think about.

    None the less, I had to respond to this one. I impressed with Nancy K. and Oia. I can feel the hope in your post, and in it radiates, giving me a little hope too. Plus, I am impressed with you for being such an aggressive advocate for sweet Oia. I totally got your sentiments when you said that you somehow felt that Oia was not getting all that she deserved--or something to that effect. Anyway, I totally felt that. That is how I often feel about Emma that she is missing so opportunities. SO congratulations! Glad it went well! I will be working hard to use scripting now that you have explained it better to me.

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    1. Amy, please email me. I would love to explain the camp set up more if you try to go that route. I wish you the best... No harm in a video consult, just a slight fee. Go for it!! At the very least, seek the K-SLP how-to DVD so you can learn more on your own. Best to you and your dear Emma.

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  2. This is FABULOUS news Mo! Way to go Oia - and way to go Mo and Rob for ALWAYS looking for other answers and strategies. What a lucky girl Oia is to have you behind her - every syllable of the way!

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    1. Paige, have I ever told you how thankful I am to have your continued support and for your kind words? I always feel like you are right behind us... which means a lot.

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  3. Wow, what awesome news!!! I'm so glad to hear that the camp was even more than you were hoping it would be. So So wonderful!
    Sorry it didn't work out for us meeting up! :(

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  4. Ya know Mo, no one in the Boston area knows how to put an "r" on words either. The joke is they say "paak the ca in havad yaaad"...maybe she's headed to Haavaad...

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  5. Yay! My son is apraxic and we are headed to Summer SPEAK with Nancy in July! Can't wait! Isn't she wonderful?!

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    1. Yes, she is truly in a league all her own. Blessed are those who get to work directly with her. Best to you and your son... would love to hear back how Summer SPEAK goes for you.

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  6. Wow! You go Miss Oia. We are so happy that the trip was another answered prayer for a very precious little lady. There is much more in store for your budding "Chatty Cathy." Sending lots of love.

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