Tuesday, July 5, 2011

Verbal Apraxia in Down syndrome

Wesley was diagnosed with Verbal Apraxia in Mid 2009 . Though I should be used to all the diagnosis, challenges, and struggles it still felt like a kick in the teeth!  At 10 years old my little guy wasn't talking. I knew that each child with Down syndrome had their own set of challenges. That not every child would have the same issues. But it still frustrates me when another challenge is put in front of him. So as a parent, you do everything in your power to make it easier for them to succeed. My way of coping was to learn as much as I could. I went into research mode. I had to know everything there was to know about this condition.  I Googled, I YouTubed, everything I could possible think of. If I found a term or therapy I didn't understand I would google that too. Until I had a clear understanding of what we were facing and what we could do to make the best of the challenge we were facing.

So almost two years into our journey here is what we have learned:

  • Verbal Apraxia is a speech disorder where a child has trouble saying words they want to say correctly and consistently. Our SLP explained it like this: The brain tells Wesley what to say but the signal the tells him where to move his lips and tongue to say it goes haywire. Thus he can't say the word.

  • Verbal Apraxia is also know as Apraxia of Speech, Dyspraxia, and Childhood Verbal Apraxia.

  • Things we should have been looking at long before Wesley was diagnosed were his inability to put sounds together in the correct order, inconstancy in his attempts to say the words correctly, difficulty with longer words, slow rate of speech, omission of sounds, and the one that we knew about the longest and had no idea that is was a charaterististics of Verbal Apraxia was is expressive language was far lower than his understanding. In other words he knew exactly what was being said and what was going on but he could not effectively tell us what was on his mind. This in itself caused several behavioral issues. He was frustrated that he couldn't communicate to us what he wanted to say.  

  • The key to success in treating Verbal Apraxia is PRACTICE, PRACTICE, PRACTICE! The harder we work at it the better Wesley does. Consistency is Key! No matter how many times you go to speech therapy each week you should practice at home too. Of course the more severe the case the more practice you need.

  • Augmentative communication also know as alternative communication is very important! This can consist of sign language, picture system, voice output system or combination of all of these. This bridges the gap until the child learns to speak clearly and be understood. Imagine what it is like to know what you want to say but are unable to say the words. It would be frustrating! If you had a way to say what you wanted or needed to say it make your life a bit easier. I have also found that for Wesley if he learns the sign he learns the verbal word easier. He makes the connection easier when he learns the sign.

As we continue to use all of the techniques to help Wesley succeed, I hope you find some of this information helpful. From our journey to yours....we wish you the best of luck!

Thursday, June 30, 2011

The Good, Bad and the Ugly

Its been awhile since I blogged! I really do have a lot to say! I have just been to busy to say it. It really is a roller coaster ride these days.The Good, Bad and the Ugly! Wesley seems to be having more good days than bad days lately. In all aspects of his life. He had tubes put in his ears a few weeks ago and I really do think he is hearing better. And his speech seems to be progressing better. The ENT says that its due to the tubes. I hope we continue to see such remarkable progress. All of Wesley's life I have been so excited for the day he would start talking. He is using his words more than ever now! Though it is still hard to understand it is amazing to hear. He is copying more words these days too. His newest word is "WOW". Thanks to the newest member of our house. (Samantha, Abe's little sister) It really is exciting to hear his voice!
Wesley started summer school last week to at his new school, Crest. Crest is a school for children with special needs of all kids and all ages. He is going into the 6th grade this coming year and with is small size and limited speech, we didn't feel middle school was the best choice for him. I was terrified of the things that might happen to him. Even in the 5th grade we were having some of the kids showing him not good things and laughing when he got in trouble for doing or saying those things. Things they knew better than to show a little guy who does not know any better. So Wesley will spend the remainder of his school years at Crest. It was one of the hardest decisions we have had to make so far. We want what is best for Wesley. We had to decide what environment we thought he would make the best progress in. Crest really seems to be that place. Time will tell! It seems in life you have to make the choice you THINK is best only to find out later whether or not it really was the best choice. Use your head, follow your heart, and listen to the wisdom around you. It doesn't hurt to add some prayer into that as well.
As special need parents we don't always have the answers. There are no books to tell us exactly what to do next. We rely on our families, our friends, our doctors, and our fellow special needs parents to help us navigate this road. They laugh with us, cry with us and all the emotions in between.