Not Quite Official
Memphis has been in speech therapy now for about a month and a half. I had written before that I thought his problem was mainly an unwillingness to speak, but it's looking more and more like an inability. The more our SLP (speech-language pathologist) works with him, the more she thinks we are heading down the path of CAS (childhood apraxia of speech).
We have visited this disorder before. Brad and I first read about it in a parenting magazine and thought we recognized Memphis' problems. I brought it up to his feeding therapist and that is what first started us thinking about speech therapy. My little brother, Richard, is autistic so I immediately picked up the phone and called my mom who suggested that I call his old speech therapist, Rosanna.
Rosanna gave me the name of a specialist at our health sciences center and we made an appointment to visit with her. I was pretty excited about this visit because Rosanna stressed to me that this specialist was the best there is, that she could spend five minutes with a child and give a pretty accurate picture of what that child's prognosis is.
She mentioned, without knowing it was a concern of mine, that Memphis showed some red flags for apraxia, but that he was a little young for a formal diagnosis. I went home after the meeting and researched what, exactly, apraxia of speech is.
When we are babies, we first learn gross motor skills, then fine, with talking being the most complicated fine motor skill there is. Talking requires the brain to first formulate what to say and then send messages to the lips, tongue, soft palate, jaw, etc. All of these body parts must come together to form any words we say.
In children with apraxia of speech, the message is blocked somewhere. "They" are still not sure whether the planning part of the brain does not plan correctly, or if there is a disconnection somewhere along the path to the mouth. Research is still being done to try and figure that part out.
What this means for Memphis is that he is fully aware of what it is he is trying to say and probably thinks the sounds he makes are correct for the words he is attempting to form. This makes it all the more frustrating for him when we don't understand him.
One of the main markers for apraxia is the gap between what a child understands and what he is able to express. Memphis' gap is quite large. He understands everything we say and has proved this many times over to his SLP.
What this means for the rest of us is that we have to give Memphis some way of communicating with us. Brad and I and hopefully my mom are going to be taking sign language classes this fall. Then we will be teaching it to all of the other kids. The more people who understand him, the less frustrated he will be. He will not be so frantic to get his point across and will be able to concentrate more on his speech lessons.
As I read, I learned that the prognosis for children with CAS differs. Some go on to talk normally, some seem to have an accent because their vowel sounds are "off", and still other never learn to speak. Memphis does have a leg up, we think, because there are many kids with CAS who cannot even use their voices and, as we all know too well, Memphis has no trouble using his voice.
He shocked the stuff out of his SLP and I the other day when he said, "Carrr," as we were talking to him about a Lightening McQueen book. I'll never be able to explain the triumph I felt in that moment. It was like the fears that I had about Memphis never speaking turned into a readiness to do whatever it takes to help my son.
I'll update on Memphis' progress periodically so you can follow our journey. Maybe there is someone out there who has some ideas for us. Or maybe there is someone out there who is concerned about their own child's development. Maybe you just really love us a lot and are pulling for Memphis as much as we are. Or maybe you visited today hoping to read something funny. Sorry to disappoint, but funny will return soon. Funny makes an almost daily appearance around our house and I love to share the fallout.
We have visited this disorder before. Brad and I first read about it in a parenting magazine and thought we recognized Memphis' problems. I brought it up to his feeding therapist and that is what first started us thinking about speech therapy. My little brother, Richard, is autistic so I immediately picked up the phone and called my mom who suggested that I call his old speech therapist, Rosanna.
Rosanna gave me the name of a specialist at our health sciences center and we made an appointment to visit with her. I was pretty excited about this visit because Rosanna stressed to me that this specialist was the best there is, that she could spend five minutes with a child and give a pretty accurate picture of what that child's prognosis is.
She mentioned, without knowing it was a concern of mine, that Memphis showed some red flags for apraxia, but that he was a little young for a formal diagnosis. I went home after the meeting and researched what, exactly, apraxia of speech is.
When we are babies, we first learn gross motor skills, then fine, with talking being the most complicated fine motor skill there is. Talking requires the brain to first formulate what to say and then send messages to the lips, tongue, soft palate, jaw, etc. All of these body parts must come together to form any words we say.
In children with apraxia of speech, the message is blocked somewhere. "They" are still not sure whether the planning part of the brain does not plan correctly, or if there is a disconnection somewhere along the path to the mouth. Research is still being done to try and figure that part out.
What this means for Memphis is that he is fully aware of what it is he is trying to say and probably thinks the sounds he makes are correct for the words he is attempting to form. This makes it all the more frustrating for him when we don't understand him.
One of the main markers for apraxia is the gap between what a child understands and what he is able to express. Memphis' gap is quite large. He understands everything we say and has proved this many times over to his SLP.
What this means for the rest of us is that we have to give Memphis some way of communicating with us. Brad and I and hopefully my mom are going to be taking sign language classes this fall. Then we will be teaching it to all of the other kids. The more people who understand him, the less frustrated he will be. He will not be so frantic to get his point across and will be able to concentrate more on his speech lessons.
As I read, I learned that the prognosis for children with CAS differs. Some go on to talk normally, some seem to have an accent because their vowel sounds are "off", and still other never learn to speak. Memphis does have a leg up, we think, because there are many kids with CAS who cannot even use their voices and, as we all know too well, Memphis has no trouble using his voice.
He shocked the stuff out of his SLP and I the other day when he said, "Carrr," as we were talking to him about a Lightening McQueen book. I'll never be able to explain the triumph I felt in that moment. It was like the fears that I had about Memphis never speaking turned into a readiness to do whatever it takes to help my son.
I'll update on Memphis' progress periodically so you can follow our journey. Maybe there is someone out there who has some ideas for us. Or maybe there is someone out there who is concerned about their own child's development. Maybe you just really love us a lot and are pulling for Memphis as much as we are. Or maybe you visited today hoping to read something funny. Sorry to disappoint, but funny will return soon. Funny makes an almost daily appearance around our house and I love to share the fallout.
posted by Megan at 10:17 AM
4 Comments:
I am pulling for Memphis! I will be praying that you find the resources and the people to help him communicate.
I am one of those who just love all of you and little Memphis. He is so precious. I am grateful you are finding out what is wrong and they are helping all of you to help him.
I feel your frustration! We've been in speech therapy since January and we haven't seen much progress. Nathan's issue is articulation though, so he can say some things, you just can't understand him. I hope you get some help soon!
You made me cry - maybe only prego hormones but still. It brought me back to the feeling of helplessness with Sofie and then the little triumphs of no seizure with her colds! My only advise is God Will Provide! I will add all of you to our classes prayer request and be generic as you wish! Kudos to you being aware and reaching to help your sweet boy! Jess
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