Jake's Journey with Apraxia

And the Friends We Met Along the Way

Today Jenny will be updating us on her son’s progress with apraxia. The last time she was a guest writer on Jake’s Journey was the summer of 2012. Welcome back, Jenny!

Can it really be almost two years since I first shared our Apraxia journey with all of you? We have come a long way, baby…

I want to let you know that there is hope; that recovery is possible. Colten’s apraxia has not resolved, but I am confident that it will. If you would have told me two years ago that he’d be speaking at age five, I would have hugged you so tight. There we so many unknowns. We had been told he might never be a primary verbal communicator and to consider an augmentative communication device. I am so glad I didn’t listen. Apraxia is a tough nut to crack, but we are beating it every day.

This February, Colten was able to tell Russell that he became a Senior Wilderness explorer in one day. We completed all 30 challenges. He was so proud.

This February, Colten was able to tell Russell that he became a Senior Wilderness explorer in one day. We completed all 30 challenges. He was so proud.

To be honest, some days I still panic. Sometimes I hear a typically developing five-year-old and get overwhelmed by how far we still need to go. Some days I listen to my two-year-old talking and I mourn the time I lost with Colten. On days when I’m frustrated that his intelligibility and articulation aren’t better, I stop and watch this video and remind myself how far we have come.

Speech sample two years ago:

Speech sample three months ago:

It’s amazing. Can we understand everything that he says? No. Is his articulation perfect? No. Has grammar become a very real concern? Yes. But he’s talking. The little boy who at age three could only say “mama,” “dada,” “ball,” and “hot” spontaneously, now says things like: “Whoa that dinosaur is humungous!” and “Hey Mommy are you thinking what I’m thinking? Cooper is sleeping… it’s Lego time!” The little boy who couldn’t sing until he was four, can now belt out about 65% of “Let it Go” from Frozen.

Colten still receives therapy every day. He gets four 30 minute speech sessions and two 30 minute OT sessions each week. We are still scripting and re-scripting a lot of what he says, but he’s talking.

We’ve come so far. We still have so far to go.

What’s next?

We’re going to start focusing more on oral motor/articulation therapy. Colten has yet to master “s” “th” “v” “z” or “l” and still struggles with vowel accuracy. We continue to work with Nancy Kaufman remotely and will be making our fourth trip to Michigan to work with her in November. I still credit her for where we are today. I still credit the KSLP for unlocking his voice. There aren’t enough words to thank her for what she has done for our family. We’ve had six different OTs and are currently looking to hire our 6th speech therapist in three years. Is that frustrating? Yes. Will I stop until I find the best therapist for my child? Never.

Bottom line: we need to remember that we are our children’s advocates. I pushed for everything: developmental pediatrician visits, Early Intervention, more therapy, better therapy. I have been fighting this thing for nearly four years and I will not stop fighting until he is completely resolved; until he can speak just like you and me. I’ll keep fighting until he doesn’t have to anymore.

jenny 1

Colten has finally found his voice, now all that’s left to do is refine it. I couldn’t be more proud of my brave, sweet, spunky little boy.

xoxo

Jenny

Thank you Jenny for sharing your story and big hugs to Colten!

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2 thoughts on “What’s Been Up with Colten?

  1. Stephanie Saylor says:

    Hi Jenny,

    Thank you so much for sharing your story. I just stumbled upon your blog last night and it is really helpful! I am a speech therapist and a mom of a little guy (21 months) who also has apraxia. I currently work with the school age population so this early intervention is somewhat new for me, but we become quick experts, don’t we?! I have a couple of questions for you. Did Colten yell a lot as a toddler? I know the yelling is out of frustration and lack of communication, he can’t say ‘no’ or ‘stop’ and we are working on signs for these words, just curious if you remember him yelling and if something worked. I love that he is getting so much therapy! Research truly supports short frequent sessions. How did you get insurance to cover it? Our insurance keeps denying it saying they only cover for injury, stroke, cancer, autism and a congenital anomoly. I would love any advice you have on dealing with insurance. Where do you live? I’ve never thought about traveling to see Nancy Kaufman. Did therapists ever use PROMPT? Sorry so many questions!! What a wonderful advocate you are for your son!

    Thank you!

    Stephanie Wheeler Date: Fri, 16 May 2014 10:17:35 +0000 To: s.saylor@hotmail.com

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