Thursday, May 14, 2015

Apraxia Awareness Day

Today is Apraxia Awareness Day.

What is APRAXIA?

Apraxia is motor speech disorder that becomes apparent when children are first learning to talk. Children have difficulty planning and producing the specific oral movements needed to produce speech.

(You can learn more here).

Jacob struggled with speech from the very start. We waited a bit before we worried and constantly heard the same comments from people around us.

"Boys are slow to talk."
"Logan does all his talking for him."
"Don't worry. He'll talk on his own time."

But we had him assessed anyways. By age 2.5 we were still waiting for someone to help us and so we sought out private therapy for him. At this point he had MAYBE 5 words, wasn't repeating anything and  was very frustrated by his inability to communicate.

Our private therapist was amazing, expensive, but amazing. She was the first one to introduce me to Apraxia, she mentioned it at a session and so I did what any parent would do, I went home and Googled it. What I read was not encouraging. I read that most children struggle forever with Apraxia, some never fully speaking. Ugh. How heartbreaking.

But we persisted with therapy. I sat with Jacob (a super awesome and eager learner) as she physically taught Jacob how to move his lips, tongue and jaw to produce sounds. Even the simple ``first`` sounds like b, p and m. It was painful and so hard as he progressed so slowly. While I did see improvement in him it was SO little.

However, after a while, his therapist said that she wasn`t sure that Jacob actually had Apraxia. Because he WAS making progress it meant that it wasn`t what we had originally thought. So his label changed to ``severe oral motor delay``, basically the same as apraxia but with the encouragement that we could overcome this more quickly.

We worked hard. For years. We literally taught our child to talk. Something that most of us take for granted. (Did you know that when you make the L sound you put you tongue to the roof of your mouth, just behind your teeth? Try it, say "LA"). I worried that he would go to school and not make friends and not be able to express his needs. But we made it. He still doesn`t speak clearly. He`ll likely need more therapy but he can talk, he has a voice.

Norah seems to have some similar problems but not as severe. We are also working hard with her.

Living with children who cannot communicate is so difficult. There are more tantrums, more meltdowns and so much frustration.

We have been teachers to other adults and children about why our children don`t talk. Explaining that they aren`t babies and that yes, we are doing ALL we can to help them, but it takes time. We have reminded people that not all children talk, and that not all children talk at the same time. We have taught our own kids how important it is not to make fun of kids who maybe don't speak clearly or say things different.

We have spent money to get Jacob the help that he needs. Money that was well worth it but money that is sometimes hard to come by.

I`d encourage you to take some time today and familiarize yourself with Childhood Apraxia of Speech. There are children out there who cannot talk, they don`t have a voice. There is still so much unknown of Apraxia and we owe it to our children to learn more about it.

If you have young children, please be familiar with speech and language milestones. Early intervention is so critical and as parents it is our job to advocate for our kids. Please do not hesitate to contact your local child development centre if you have questions about how your child is (or isn`t!) progressing.

And most of all, you can feel proud of Jacob (and Norah) for what they have had to do to learn a skill that most of us were born with.


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