Apraxia Awareness. Kenny’s Story

Monday , 8, September 2014 Leave a comment

We’d like to introduce you to Stacey.  Stacey is a Fayette county stay at home mom to an almost 3 year old boy & a 7 month old girl desperately seeking a full night sleep & a tantrum free day. Stacey has done a great job advocating for her son and getting him the help he needs with his speech difficulties.  Enjoy her story below.

Kenny apraxia

I always thought that talking to my child would teach him to talk. I was the mom who talked to her kid all the time. About everything. We’d go to the grocery store and even as a newborn, I’d tell him what we were doing, what the plan was for the rest of the day, I’d ask him questions. I seriously talked to him non stop. People probably thought I was nuts. I first realized something may not be right when he was about 9 months old. All my friends with kids his age were talking about how their kids were saying “mama” and “dada” and even a few other things. I asked his pediatrician about it and she assured me that everything was normal, it was too early for him to be talking. By 12 months he had one word, “da”. Again, I asked his pediatrician about it. Again I was told it was too early to be concerned. This continued until he was 18 months old and still the only work he said was “da”. Finally I was given a referral for a speech therapy evaluation. It was determined that he did need speech therapy due to his profound speech delay.

I remember after his first SLP session, I came home and cried. They weren’t even trying to get him to say words, just to make noises. I was shocked. I didn’t realize how bad his delay was, he was my first child so I had nothing to compare it to. I felt like the most horrible parent on Earth. How had I let this go untreated for so long? My child made no animal noises, no “baby babble”, nothing. A few months into therapy I was told he had Apraxia. I had been right all along and my child NEVER would have spoken if it hadn’t been for speech therapy. The official name of what he hA is Childhood Apraxia of Speech (CAS). CAS is a motor-speech delay where children have problems saying sounds or words. Their brain knows what it wants to say, but it is unable to make the mouth say the words. Can you imagine how frustrating that is for a child? Or for anyone. It was absolutely heartbreaking to me see my child struggle.At about 21 months, he finally said his first “real” word and I was over the moon excited about it.

After a little over a year of once a week speech therapy, he’s actually talking a good bit! But he still gets very frustrated when he is unable to say what he wants to or someone is unable to understand what he is saying. It’s hard for me some days, seeing the frustration on his face or seeing how hard he has to work to say a word. The sadness on his face sometimes when I can’t understand a new “word”. But I remind myself how far we have come. I was recently told that he would likely need speech therapy throughout elementary school and possibly he will never talk with ease and be “normal”. I wasn’t quite expecting this news and it felt like someone had kicked me in the stomach. Once again, I came home after his speech therapy session and cried. It took me 3 days before I was even able to tell my husband what had been said.

Despite it all, my son is happy and outgoing. He’s a strong little boy, stronger than most kids his age because he has fought hard for every word he says, for the basic skill of communicating with those around him. Not too long ago he was finally able to say his name. I cried. At this age I think his Apraxia affects me more than him. He doesn’t know that he’s “different”. But I do. I see it whenever we are around other children his age.

For now we are doing what we can. We go to speech therapy and occupational therapy once a week. And we are raising awareness. We are participating in a Walk for Children with Apraxia of Speech in October. It’s a great cause that will help children who struggle with CAS. Click here for more information about our team

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