Monday, September 21, 2020

10 Things Not to Say to an Apraxia Parent

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Before Davy was even two years old, I noticed that while he babbled and made noises, he wasn't really saying understandable words which struck me as odd since my three older kids were talking up a storm by the time they were 18 months old. No worries though! With the rocky start he got on life, I figured he was too focused on other things, like living, to learn how to talk.

10 Things Not to Say to an Apraxia Parent

But, then he turned two and then three. But that time, he was talking more, but it still wasn't understandable. I had to translate what he said for other people, his siblings had to translate what he said to me, and there was a lot of stuff he said that none of us could understand. He started speech therapy and I assumed that within a few months, his speech would take off. But while we saw some progress, it wasn't the big change I was hoping for. 

Davy's geneticist suggested that he may have Apraxia and referred him to a Speech Language Pathologist or SLP for an evaluation.  When we left that appointment, he had another diagnosis to add to his list...Childhood Apraxia of Speech.    

I pored over the Apraxia Kids website and realized that this wasn't going to just resolve itself with a little speech therapy. Apraxia is a motor speech disorder where the brain and the mouth don't quite know how to communicate with each other to form sounds and words properly. While kids with Apraxia may struggle to talk, they generally understand everything that is being said to them.

Davy is now six years old and still struggles to communicate, but it's finally getting easier for people to understand him when he talks. We still get a lot of comments, questions, and stares though. And as any parent of a child with special needs will tell you, everyone from close friends and family to complete strangers, thinks they know how to fix your kid and tell you where you went wrong. I put together a list of comments that parents of children with Apraxia often receive and give some suggestions of what to say instead.       

1. Einstein didn't talk until he was four.
While I am flattered that you compared my kid to Einstein, their situations really aren't the same. My son did not just start magically talking in full understandable sentences when he turned four.  

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2. He'll outgrow it and catch up to the other kids. 
No one "outgrows" Apraxia. It will take a LOT of work from my son and our whole family for him to ever be able to speak as well as his peers.

3. He'd talk more if you didn't talk for him.  Stop babying him.
There's a difference between talking for my child and interpreting for him. I encourage him to talk, but know that other people may not be able to understand him so I interpret for him so that he can communicate with others.

4. He'll talk when he's ready.
He's ready right now! His brain and mouth just aren't cooperating with him.

5. Teaching him sign language will just hold him back.
Giving a child a means of communication is essential to their development and cuts down on frustration. While I do use some sign language with my son, we always make sure to say the word out loud while signing it and encourage him to do the same. 

6. He's just waiting until he has it perfect before he talks.
Ha! No, he's not. Perfection is not as important as the ability to communicate to him.

7. What's wrong with him?
Nothing. We all have struggles in life and this is one of his. He's a pretty awesome kid. Oh, and by the way, he understood what you just said so maybe don't tell him that he's broken in some way just because he can't speak well. 

8. You need to talk to, interact and work with him more.
When we're out in public, I may not push him as much as I do at home to repeat his words, work on adding more sounds to them, and add more words to his sentences because it's not always the best time or place to do so. At home, speech therapy is a constant part of our day and Davy works incredibly hard. 
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9. You're so lucky! I wish my kid didn't talk all the time!
First of all, just because he's not understandable doesn't mean that he's quiet. He talks. A LOT. And it's exhausting because every time he wants to tell me something, we have to play 20 questions and use a lot of gestures to figure out what he's saying.

10. What did you do wrong while you were pregnant?
Why does anyone think it's okay to blame the mom for the kid's medical issues? Not cool. Special needs moms deal with an immense amount of guilt on a daily basis, constantly questioning if they're doing things right, if they're doing enough, and how this could possibly be their fault. Let's not add to that, please.

10 things not to say to an Apraxia parent:


What a parent of a child from Apraxia really needs to hear from you is that they're doing a good job. While you're at it, maybe spend a few minutes learning more about what Apraxia is (Apraxia Kids has some great resources for that!) and how it affects children, often their whole lives.  

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