To tell or not to tell……..your child they have apraxia of speech?
I see a question that gets asked a lot. In fact, I asked it myself. It usually goes something along the lines of,
“Did you tell your child they had apraxia? If you did, how did you say it? What did you say?”
I remember thinking when I first saw this question that I wouldn’t tell Ashlynn until way later….and then…maybe if she still seemed apraxic, I would tell her. I didn’t want her to feel different. I wanted her to know I believed in her and I wanted her to believe in herself. I wanted her to know that she can do anything anyone else can do.
Yep. That was my stance…..
Until,
Sharon Gretz, the executive director of CASANA answered someone’s question. She made so much sense, I couldn’t help but immediately question my own decision. She told this parent that it’s important kids know from an early age what their problem is, so they have a name for the difficulties they are facing. Providing a name empowers the child because they realize their struggles are due to something that is real. In this way, they have a name for the struggles they are experiencing, and don’t develop their own schemas about it. These schemas anyway, are usually negative and may include: I’m stupid, I’m dumb, or, I’m different.
Aren’t we as parents the first to tell anyone who questions our child’s abilities that they are smart?? Aren’t we the first people to defend their honor? What do we use an excuse? Well, we explain apraxia don’t we? We defend our children’s honor by labeling them. Right?
So, why wouldn’t you offer that SAME defense to your child? You’re the first one to say your child is smart. I’m the FIRST one to say my child is capable. If I, if you, truly believe this; can you really think your child doesn’t know they are different? Do you really think that, or are you just hoping they don’t know?
I have a feeling it’s the latter. I have this feeling, because I have hoped the same thing.
Truth is, Ashlynn has always known. I remember when she had JUST turned three and was put in preschool as a nonverbal child, the teachers reported she would just laugh when they asked her to do something. I could see it in their eyes:
Low cognition
Poor comprehension
However, I knew….I KNEW as her mother, that Ashlynn laughed as a coping mechanism because she couldn’t do what was being asked. It didn’t matter if it was speech or otherwise. Ashlynn has GLOBAL APRAXIA, meaning overall motor planning difficulties. It didn’t matter what they asked her to do, she couldn’t do it…so…she laughed.
Every heard of emotional intelligence? My daughter has it in spades. If you haven’t, it’s because we live in a society who only values academic intelligence, completely ignoring the fact that a genius who can’t relate to people or get along with people can’t be successful in life.
No.
I’m ever so thankful I read that post and the response from Sharon. Before I was even sure my daughter knew what I was saying, I told her she had apraxia. Whenever she even remotely paused and looked upset, I would tell her “oh dangit. That darn apraxia!”
If you have read my blog for awhile, I talk about apraxia being the new stuttering. Back in the day, no one wanted to tell a child they stuttered. Surely they didn’t notice, so you didn’t want to draw attention to it. Years of research later, low and behold children who stuttered DID know they were different, and instead of understanding their disability, they developed shame.
Shame is a bitch. Shame develops when you feel as though you have done something wrong. If we don’t talk to our kids about apraxia, we risk them feeling ashamed of it. Apraxia is NOTHING to be ashamed of.
That leads me to my final thought.
The walks for apraxia taking place around the country.
I recently learned so many people think the walk is about awareness.
I mean, I guess. I can see that. Certainly a part of the walks is about awareness. Publicity leading up to the walk and various news stories all bring awareness and awareness is very good.
However, it may surprise you to know, especially from me, that the walk itself has very, very little to do with awareness in my eyes.
The walk, in particular, the medal ceremony, has EVERYTHING to do with honoring our children.
No shame.
We HONOR them for their struggle. We HONOR them for differences. We HONOR them for their perseverance and hard work..
We HONOR them. We RECOGNIZE them. Their family and friends HONOR them. Their therapists HONOR them. We all honor them, because despite the odds, they persist and achieve. We recognize their achievement in spite of apraxia, and they can feel pride, not shame.
Even if your child is considered “resolved,” I would urge you to rethink your stance on not telling them. People………..they KNOW. They may not know what apraxia means, but they know they aren’t like other kids. They know they are different.
On final thought. A label should never be used an excuse and trust me, our sweet babes are smart enough to use a label to their advantage. I’ve definitely heard a story or two about, “oh I can’t do that because I have _____.”
On the contrary, it’s a teachable moment to say, “It makes it more difficult for you, but YOU are capable and I believe in you.”
If you don’t believe me, ask my daughter some day! We are obviously an atypical family because I specialize in apraxia so I see kids all day with apraxia and of course Ashlynn has it; however, my youngest son asked me why he DIDN’T have apraxia. lol.
No shame in this house. Only knowledge…and knowledge is power.
Jumping her heart out at a fundraiser for the Apraxia Walk