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SLP Mommy of Apraxia: July 2013

Tuesday, July 23, 2013

Conference take aways 2013

The Apraxia conference was incredible to say the least.  On one hand it was information overload, but on the other hand I learned so much.
I was beyond thrilled to meet Sharon Gretz, the founder of CASANA.  What an incredible women and inspiration she is to me, and when I met her she was so down to earth and humble.  We swapped stories and I immediately felt a kinship with her.  It was also amazing to meet her son who was nonverbal at 5 talking and taking pictures of the conference.  She reported he was in college maintaining a 3.25 GPA.  Incredible.
The breakout sessions were awesome.  I was never bored, though by the end I was tired.  I just want to soak up as much as possible.

Some things that really struck me at this conference

- Apraxia could have a sensory feedback component as well as a motor component.  One study showed that kids with CAS had a greater number of vegetative utterances in the first year.  These include things like coughing, hicupping, and burping.  The theory is that perhaps sensory feedback is to blame.

- Kaufman recommends taking sounds in the child's repertoire, and then creating words from it.  She didn't just advocate her picture cards.  She also said she chose items in her picture cards that were of high interest to the child.  However, she also uses pictures on the iPad and in other materials.  She's also not concerned if the child doesn't "remember" or "learn" some of the words since the goal is just to map the motor plan.  For example, she said a child could go their whole life not knowing "oboe" and would probably be fine.

- Kaufman uses a lot of approaches for ABA verbal techniques.  One was called errorless learning, in which you anticipate the child's mistake before they say it and give them a cue to increase success.

- Brain imaging studies show that kids with apraxia have more brain centers lit up during talking tasks then do the neuro-typical peers.  It shows just how hard they are working to talk.

- Children with apraxia are at increased risk for reading difficulties.  Some reading programs that have shown success with children who have apraxia are the LIPS program, which allows a child to learn sound correspondence and sound segmentation receptively, as well as Phonic Faces.

I look forward to attending more conferences in the future!  I also learned about an "Apraxia Bootcamp."  It's a four day intensive training, but some of the top apraxia experts in the country.  It's apparently highly competitive, but I'm up for the challenge.  I'm going to start gaining more experience with apraxia, and already started networking with other colleagues.  I'm excited for what the future brings!

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Apraxia and Down Syndrome

I came across a great blog the other day regarding Speech/Language and Down Syndrome.  I love this interview about Down Syndrome and Apraxia.  I couldn't agree more with the therapist's view point.

Ask an Apraxia Expert

I have worked with many kids who have Down Syndrome, and they are some of my favorite kiddos.  They are sweet and loving, and usually have a stubborn streak.  If you can earn their trust though, you are their buddy for life.

When I was 9 months pregnant, my car stalled in the middle of a busy intersection.  It was a young man with Down Syndrome who helped push my car to safety.  He ran off to catch his bus before I could thank him  <3

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Monday, July 15, 2013

Ashlynn play boats with daddy.

This past Fourth of July weekend we went on our annual trip to Glendo State Park in Wyoming. My husband and I have been going since before we had kids. Without getting into all the details, once you go to Glendo for the Fourth, you always go back if you can! Last year we couldn't go because I was having my son so we were very excited.

When we went to the beach, Ashlynn saw my husband pull up on the jetski. She looked at her grandpa and me and announced, "Ashlynn play boats with Daddy?" I teared up immediately. I know I sound like such a sap, but when you are the parent of someone with apraxia and they say things and put novel words together in context, it is just the best feeling! I asked her if she wanted to ride the jetski with daddy, to which she enthusiastically replied "yes." I of course then scripted the appropriate  way to ask the question and had her repeat, I want to ride the jetski with daddy.

We still have a ways to go. We've been working on her using the first person "I" since before school was out. It's just such a testament to how much repetition a child with apraxia needs, because I correct her and make her repeat her phrases and sentences using "I" every time she refers to herself as Ashlynn. We were so intent on getting her to learn her name that now it's hard to get her to use something else.  However, I do know that she will get that too, and that's a comforting feeling.

Two years ago we took her to Glendo when she was 21 months old. At that time she had just learned to start walking really well and she only had a handful of word approximations. Unfortunately, anything that wasn't a flat surface was difficult to walk on, so we still had to help her walk everywhere. She only had a handful of word approximations, and her favorite thing to say was "a dah." and "hi."  I've learned from my parent support group that most kids with apraxia have a go to sound that they use for everything, and a dah was Ashlynn's.

Fast forward though two years (and a lot of therapy and extracurricular activities to work on motor skills) and she was running on the beach and bending down on the sand. She is still unsteady in the waves and can't be trusted around the fire pit for fear she will lose her balance and fall, but that will be a progress report for another time. For now, we celebrate that in two short years, a dah was replaced with a complex sentence asking to play boats with daddy, and now she fearlessly got up on the jetski.

I look forward to coming years when she will be navigating around the campsite without fear of falling, swimming in the water, and maybe waterskiing or jetskiing on her own.  Also, I excitedly anticipate her talking our ear off around the campfire.

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Tuesday, July 2, 2013

ABC Song and "Happy Birthday Jace"

Two HUGE developments with Ashlynn popped out over the weekend! We celebrated my youngest's 1st Birthday on Sunday. Six months ago, my daughter had to really focus on including all the sounds in syllables, so when it was my husband's birthday, she could day "Happy Day" with cueing. Well, after the celebration ended and everyone had gone home, she went over to her brother and clear as day said "Happy Birthday Jace. " There are substitutions so it was more like, "Happy buhday Dace" but my husband and I understood it perfectly. In fact, after she said it we both kind of looked at each other as if to see if we both had heard it. Then we teared up realizing we both DID hear it and it was perfect and beautiful! We asked her to say it again, and she did it again! It was just an awesome moment.

Then, the next day she sang her ABC song independently without a model for me. More than a year ago, when she was 2 and a 1/2 and I was very pregnant with my son, I sang this song to her multiple times a day. She also heard it on a variety of apps on my iPad she played daily. I remember feeling so sad when people asked me if she was singing it yet, and a Facebook friend had posted their younger than Ashynn daughter singing it that summer. Ashlynn would smile, but never tried.
But, to hear her sing it yesterday, and to see her smile with pride was better than hearing it last summer.  She also let me video tape it, so her first ABC song I have on video!

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