Jake's Journey with Apraxia

And the Friends We Met Along the Way

Awareness-Day-Logo-3

It is another day of speech therapy. Another night of drilling the same words over and over, hoping and praying that the words will stick this time. Hoping my three-year-old will be able to say the words that so many parents take for granted.

It is another day of the little boy with the enormous blue-green eyes and long eye lashes speaking to me without ever saying a word …

“Mama this is hard. No matter how many times I practice these words – no matter how hard I try – it’s still hard to say the words that are screaming in my head. And why could I say this word perfectly yesterday, but today it is nowhere to be found?”

Those days were filled with weeks that fly by in the blink of an eye and late nights spent researching at the computer, trying to find answers to alleviate the worry associated with a speech disorder that many consider a mystery. That scene was all too familiar a couple of years ago.

My son, who is now five years old, is recovering from childhood apraxia of speech (CAS). He began speech therapy when he was 27 months old.

Apraxia is a neurological motor speech disorder where the child’s brain knows what to say, but the mouth, tongue, and jaw do not cooperate. Frequent, intense therapy is required in order to strengthen the brain pathways necessary for speech to occur.

"By age 3, a toddler's brain has formed about 1,000 trillion pathways. The toddler's brain is super dense and primed for learning. When a pathway is used repeatedly, it becomes permanent; a pathway used infrequently is lost." - http://jenkrause.com/blog/2010/01/apraxia-of-speech-does-it-ever-melt-away/

“By age 3, a toddler’s brain has formed about 1,000 trillion pathways. The toddler’s brain is super dense and primed for learning. When a pathway is used repeatedly, it becomes permanent; a pathway used infrequently is lost.” – http://jenkrause.com/blog/2010/01/apraxia-of-speech-does-it-ever-melt-away/

Today marks the second annual Apraxia Awareness Day and the entire month of May is Better Speech and Hearing Month.

When a child’s speech is delayed, many parents are reassured by friends and family that their child is a late talker. Parents hear that Einstein didn’t talk until he was four years old. They hear stories of other family members whose speech was also delayed.

But, apraxia, which is typically diagnosed around the age of three, is a very unique speech disorder that has distinctive symptoms …

  • Quiet baby who does not babble.
  • First words that are late and limited.
  • Can understand what is being said much better than he/she can talk.
  • Inconsistent speech errors.

There is no rhyme or reason to the errors these children make, which is why apraxia is so difficult to treat and diagnose. Typically, kids with more common speech problems will make consistent speech errors (i.e. – saying words wrong the same way each time). But, children with apraxia may say a word correctly out of the blue, but then not be able to repeat it seconds later.

Or, as their speech progresses, if they are asked to say a simple word like “mat” five times in a row, the first time may come out correctly, but the other four times may be completely different. Once basic words are mastered, apraxic kids typically go on to jumble up the order of words in a sentence or use pronouns and tenses incorrectly.

In the book “What’s Eating Your Child?”, the author Kelly Dorfman correlates that learning how to speak is a lot like learning a fancy dance routine. Some people are naturals … from day one, the moves come easy and they require minimal practice. But, for other people the twists, turns, and dips is far from second nature and they have to do the routine over and over again before finally they get it right.

But, guess what? I think we all know how this story ends. Once a person’s feet finally learn the motor movements, they are able to pull the dance off beautifully.

Jake will be dismissed from speech therapy next week. The moment has finally come. It is the reason I have been pouring my energy into Better Speech and Hearing Month … because I believe in early intervention and I believe these children can find their voices.

Apraxia Mamas …

  • Keep. Fighting. The. Fight.
  • Keep shuttling those kids to and from speech therapy. You are making a difference.
  • When you feel exhausted, rest.
  • When you are tired at the end of a long day and you don’t feel like practicing words, do it anyway. It doesn’t matter if the house is messy, if dishes are in the sink, or laundry needs to be done. Take five minutes and build those brain pathways.
  • When you feel like you are not with the right SLP, have courage to make a change.
  • Trust your gut instinct.
  • Stand up for your child; you are their biggest advocate.

 

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6 thoughts on “Apraxia Awareness Day 2014

  1. Lori O'Meara says:

    I’m so glad that I found your blog and I love getting new posts in my email!! My 2.5 year old daughter Natalie was recently diagnosed with apraxia and I was wondering if you had any tips on what to work on at home. She currently does speech 3X a week for 45 minutes but would love to do more at home to double duty…do you have somewhere where you buy materials? Natalie isn’t ready for the Kauffman cards yet so I’d love some parent direction…thank you!!

    1. tstarmom says:

      Lori – That age is hard! I just always tried to mix it up with Jake at that age although I don’t know that I was always successful. To the right of my blog are different categories – Speech Therapy Activities (these were at home things I did) and Apraxia Age 2-3 would give you some ideas if you want to read through some older posts. If I had to do it all over again (now that I am older and wiser) I would have signed more and/or tried hand cues earlier. Jake’s fine motor skills were weak at that age though, so I don’t know if he would have been able to do it. I would have tried a lot though to make it happen. Or, maybe she would like Zoo Phonics? Most kids like hopping around acting like animals. 😉 I think using multi-sensory approaches is really important though.

      1. Lori O'Meara says:

        You can say that again!! Thank you for the tips, I’ll definitely scroll through your older posts!! We did signs for a while and those seemed to have faded away, that’s the most frustrating part, I get so excited when she says something new and then won’t ever say it again, part of the package I guess!! I’m so thrilled that your son is graduating from therapy, that is a gigantic milestone (and relief)!! And it gives me hope for our little pumpkin’s future!! Thank you for your encouragement!!

  2. Amber F. says:

    Congratulations, Jake!!! And Tori!!! What wonderful news to hear that Jake is being dismissed from speech!!! What an inspiration!

    1. tstarmom says:

      Thank you Amber!!! Thank you so much for your support.

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