Jake's Journey with Apraxia

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.

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.