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.

Friday, May 18, 2012

Happiness is...

...just enjoying the first of many long wagon rides with your sister.

Friday, May 11, 2012

Since the Last Post...

My favorite month is rushing by at lightening speed and I've documented nothing. I hate that. More than enough has happened to blog about but I can't seem to find my way to the computer through the mounds of unfolded laundry and God knows what else that piles up around me. This place is a wreck but I have two kiddos who are far more important (and demanding) than this messy house. Sadly, it seems the ol' blog is getting neglected too.

But speaking of kiddos, I'll start with the tiniest, my beautiful, almost 10 month old Esme. Affectionately called Esme'-me' by her big Sis. Six teeth have taken over her gummy grin and she makes the cutest fishy faces on command. She waves bye-bye, initiates the best games of peek-a-boo, and is babbling beautifully. The sounds that leave her mouth are simply fascinating. She loves to feed herself and still only laughs for Oia. I love her to pieces but I won't lie, she is a handful, a real Fussy McFusserson most days. Seperation anxiety is a new experience for me as a mother and it's happening in full force right now. She's a fabulous sitter but she has no desire to ambulate in any way which has me a little stressed. Luckily for her, I remember a thing or two from the days of teaching Oia to crawl so I'm feeling the need to play therapist. And yes, you can remind me of how anxious I was for her to crawl once she finally learns and is tearing through those said piles of laundry, amoung other things.

Big Sister is doing well, who by the way, now calls herself Oia Wee (Lee). She just finished her second year of preschool and is currently full of pee and vinegar. Lucky me. She is challenging my parenting skills and discipline strategies on a daily basis but I must remind myself this challenge is all a blessing in disguise and that one day this strong will of hers will serve her well (I hope!). Somedays, knowing this is the only thing that restores my patience. Being a mother is hard. And I'll bravely go out on a limb to say that rightfully raising my 4 year old globally delayed child is even harder. Still, I must raise her as no different and often times that is the true challenge. It's an emotional one for sure. But God, I love her.

Oia Wee was seen by her ortho doctor and ophthalmologist last week, both appointments were delightfully uneventful. Ortho doc was overall quite pleased with all he saw. She impressed with her "run" and jump, and ankle movements. We discussed the recent bracing adjustments (sans KiddieGAIT) and doc was totally on board with that. Right leg still looks well post surgery and left leg is maintaining its optimal function. Our only orders from ortho doc were to continue active and passive dorsiflexion exercises and swim, swim, swim all summer long. Easy enough.

The ophthalmology appointment went smoothly, although the office was running waaaay behind schedule that day. Our drive to the eye doctor is about 2 hours so the office visit of 3+ hours makes for a very long day, especially with both girls. Oia's script in both eyes has changed so new lenses are in order. Right eye has slightly improved, and I do mean slightly, but vision is changing simply due to eye growth. The cataracts of the right eye seem more "cloudy" this time around but there is nothing to be done about them at this time, just continue to monitor and keep the girl in sunglasses. Her current pair of sunglasses have become too small so this weekend we're heading into town to find and order her a new pair of Hollywoods.

We have taken on strawberry picking as a family tradition in early May. Last weekend we went again and came home with way more strawberries than a family of 4 can eat. Plenty for sharing and freezing. Oia loves the adventure, more so the eating part than the picking. The weather was drizzly which made for muddy rows but it didn't dampen our afternoon of fun or picnicing too much.

Stick around, some things to look forward to... Oia begins private OT, a speech camp at Kaufman Children's Speech Center in Michigan, and Oia's first non-therapy related summer camp. All three warrant their own posts, but for now I must hit the sack and just dream about tackling all this laundry.