Imagine if you didn't have a voice. Never having the ability to express what you want, if you are sick, if you are hurt, if you needed help or if you wanted to tell someone about your day. Imagine all the words being in your head and knowing what they mean, having the desire to use those words and then your brain wouldn't let you speak those words.
This is the world my son lives in everyday. He has Childhood Apraxia of Speech(CAS). He cannot talk. He cannot tell me that he loves me or that I am his "mommy". I dream for him to be able to say so many things and to have conversations with me. I even dream that he tells me "No!", asks me "Why?" or even tells me that he "hates" me. I want to hear that voice that is locked up in that head. I hate that his brain has stolen his voice from him and it has robbed us of so many milestones and I want nothing more than for words to come out of his mouth; even if they aren't the nicest words.
We will be getting an opportunity to unlock Kyle's voice with an Alternative Augmentative Device(AAC) called the DynaVox Xpress. We are eager to hear what Kyle has to say, what he is learning, what he wants to eat and what he doesn't like. Kyle's voice is on it's way and soon I will have a way to hear my son's words. Kyle's stubburn little brain is not going to win this battle. We are fighting a war that we will win and this is just one small victory to our battle with CAS.
Tuesday, September 29, 2009
Monday, September 28, 2009
Hope Speaks~ My Journey with Apraxia
My son is diagnosed with Childhood Apraxia of Speech(CAS). It is a neurological disorder that affects the speech motor planning part of the brain. It is a disability that affects many children, yet few people have heard of the disorder. CAS affects each diagnosed individual differently. Some apraxic children learn to speak , for others it can be a life-long journey. The future is uncertain for apraxic children as to whether or not they will speak clearly.
Kyle was evaluated by the Birth to Three(Early Intervention) program at about 19 months. I suspected something wasn't right by the time he turned 1 year old, but waited a little longer just because everyone gave me the "wait and see" lecture. He went to daycare starting at 12 weeks and all the other children his same age were way beyond him in speech development and it was a difficult thing to watch. It still is. :-(
At around 26 months I went to a pediatric developmental specialist at my son's clinic and asked for a referral to a private SLP. The SLP diagnosed him instantly at his first evaluation with apraxia. He has been going to a private SLP for about a year now with little to no progress. It can be a long road with little progress. And some children progress faster than others. Apraxia affects each child differently.
When Kyle turned 3 this past May, he transitioned into the Early Childhood Special Education. It runs with the school system and the school year. He goes mornings to Early Childhood and also gets speech and occupational therapy while there. It is summer break right now, so in September he will be starting up again.
Since Kyle is making such little progress, we will be looking into alternative communication. He needs to have a way to communicate with others or he will suffer both socially and academically. He knows some sign language, which helps him with his asking for requests. We will be trialing some Alternative Augmentative Communications(AAC) devices as soon as his private SLP sets up the reps to come and demo them. He will get a 4 week trial for the AAC devices before we will select one that we think will work best for him. This is where we are at right now. Kyle gets private speech 3-4 x week at 45 minute intervals. His SLP is using both Strand and Kaufmann methods as part of his therapy, but Kyle does not have good vocal imitation at this point, so these methods are very slow in working. We are meeting with Dr. Edythe Strand at Mayo Clinic in Rochester Minnesota in the near future and are excited for this evaluation and consultation with her. She is a renowned expert in the field of apraxia.
I feel blessed that Kyle's only disability is that of speech and language. My priority lies in helping my son find his voice and reach his dream of speaking.
Kyle was evaluated by the Birth to Three(Early Intervention) program at about 19 months. I suspected something wasn't right by the time he turned 1 year old, but waited a little longer just because everyone gave me the "wait and see" lecture. He went to daycare starting at 12 weeks and all the other children his same age were way beyond him in speech development and it was a difficult thing to watch. It still is. :-(
At around 26 months I went to a pediatric developmental specialist at my son's clinic and asked for a referral to a private SLP. The SLP diagnosed him instantly at his first evaluation with apraxia. He has been going to a private SLP for about a year now with little to no progress. It can be a long road with little progress. And some children progress faster than others. Apraxia affects each child differently.
When Kyle turned 3 this past May, he transitioned into the Early Childhood Special Education. It runs with the school system and the school year. He goes mornings to Early Childhood and also gets speech and occupational therapy while there. It is summer break right now, so in September he will be starting up again.
Since Kyle is making such little progress, we will be looking into alternative communication. He needs to have a way to communicate with others or he will suffer both socially and academically. He knows some sign language, which helps him with his asking for requests. We will be trialing some Alternative Augmentative Communications(AAC) devices as soon as his private SLP sets up the reps to come and demo them. He will get a 4 week trial for the AAC devices before we will select one that we think will work best for him. This is where we are at right now. Kyle gets private speech 3-4 x week at 45 minute intervals. His SLP is using both Strand and Kaufmann methods as part of his therapy, but Kyle does not have good vocal imitation at this point, so these methods are very slow in working. We are meeting with Dr. Edythe Strand at Mayo Clinic in Rochester Minnesota in the near future and are excited for this evaluation and consultation with her. She is a renowned expert in the field of apraxia.
I feel blessed that Kyle's only disability is that of speech and language. My priority lies in helping my son find his voice and reach his dream of speaking.
