Monday, May 15, 2017

Hard Things When Your Child has Apraxia of Speech

Did you know that yesterday was Apraxia Awareness day? There are many awareness days throughout the year now, but this one is important to me. Childhood apraxia of speech (CAS) is a diagnosis that can severely affect a child's ability to produce verbal speech. 

The Childhood Apraxia of Speech Association of North America defines CAS as:
a motor speech disorder that first becomes apparent as a young child is learning speech. For reasons not yet fully understood, children with apraxia of speech have great difficulty planning and producing the precise, highly refined and specific series of movements of the tongue, lips, jaw and palate that are necessary for intelligible speech.

As a speech-language pathologist, I have treated some children with CAS over the years. But, my own child was diagnosed with severe CAS around age 5. Speaking does not come "naturally" for these children, and they require intensive speech therapy and home intervention strategies. When you watch your child struggle to make simple sounds and words, it can be difficult as a parent. Here's a few reasons why:

1. The repetitions needed to learn a word are exhausting.
Repetitions are critical when treating CAS. In order to help the child build a connection from the brain to the mouth (or more specifically the lips, tongue, jaw, or palate), repetitions are critical for the child to "learn" how to say a word and "remember" how to say it later. In other words, repetition builds memory. Getting the repetition needed in young children can be tiring. A mom trying to get multiple repetitions of "go" may line up 10 hot wheels cars and say "go" as she pushes 10 cars one at a time. Then the mom will try to get the child to do it. Then repeat, repeat, repeat until the child loses interest. Another repetition activity may be saying, "bug" as you point to all the bugs on the pages in the Ten Little Ladybugs book. It can also be a mom saying "neigh" as she puts 10 little horse figures one at a time in a wagon.

When as a parent you are working on repetitions, you can imagine how annoying the sound of your own voice can become. If your child is barely talking, you might be saying all of these word models with little repetition from your child. It can feel like you are getting no where. But, when the repetition does happen, it feels magical. Still, coming up with creative ways to get these repetitions can be exhausting.

2. The random spontaneous words are both good and frustrating.
Often with CAS, there are times when the child will blurt out a word randomly. However, that word is said so easily only for it to be gone. It can be a happy moment for the family because a new word is exciting, especially when the words are few. But, then the word disappears, which can be disappointing and frustrating. Random spontaneous words can occur because something clicks and comes together in the child's brain and mouth at that moment. The word was not said because there was a firm motor plan established, so the child is unable to say the word again on demand.

One day, the kids and I were getting ready to leave the house. Jaycee was ready to go and was getting frustrated that her brother didn't have his shoes on yet. She pointed to his flip-flops and said, "-ip -op." We looked at each other and said, "Jaycee just said flip-flops!" It was so neat, but then it was gone. We tried and tried in vain to get her to say it again, but it was not to be. She has recently started attempting flip-flops again consistently, but that first spontaneous attempt at it was at least 2 years ago!!
Jaycee signing "deer"
3. People's inability to understand CAS can lead to awkward situations.
CAS is not well-known, so many people don't understand common features of the diagnosis. With CAS, receptive language is much stronger than expressive language. In other words, the child understands much more than they can verbalize. With my own child, Jaycee was only able to say 3 words when she could identify all her colors and shapes. She could sign all her alphabet letters and knew hundreds of other signs. It might be easy for people to draw the conclusion that Jaycee should have been able to speak if she could sign so well. But signing bypasses the mouth. To me, it showed that Jaycee could communicate and understand language well, but the mouth couldn't form the words. But to others, it looked like she was simply choosing an alternative method of communication. Yes, people made a point to tell me that!

Another common feature that creates some awkward situations is those random spontaneous words. A person well versed on CAS knows that these random words like "flip-flop" can occur as a fluke connection, but it doesn't mean the child has the motor plan to replicate the word.

A by-stander may hear a word like that and say, "Did you hear that? She could talk if she wanted to." "She chooses not to talk." "Well, that word just proved no one must be making her talk at home because she just talked!" These were the moments when Jaycee was younger that I had to control my eye roll and my mouth.

CAS is a real and complex speech disorder. It is hard as a parent to watch your child struggle to talk when others develop speech so naturally. But, many children do make progress over time (the amount of time depends on the child and if other diagnoses are present). When those words do actually come out, it makes all the hard days worth it!

1 comment:

  1. This was a really informative and interesting read - thank you. I find it very odd that people always seem to associate speech with understanding. My son has autism and is verbal but will not speak at all in certain circumstances and it is very frustrating to see people then treat him as if he does not understand. Thanks so much for linking to #spectrumsunday. We hope you join us again.


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