Thursday, September 3, 2009

Harrison's World part 1 Verbral Apraxia ...what it is and what it means for Harrison

Many of you know that Harrison has some speech and sensory processing issues that I have touched on before but have really never went into much detail about what he is going through. Really we did not know the severity of it till the last several months as he grows older the gap grows with each month. And while we still DON'T have a diagnosis (which will not come until he is at least 3) we are operating under the assumption that Harrison has a disorder called Verbal Apraxia, which is a disorder rather than a delay. A delay is when you develop in correct sequence but at a slower rate where a disorder is a defeat of the brain.

Let's start at the beginning, when Harrison was about a year old I started to become concerned about his speech or lack of. I tend to be a bit high string and over protected so I kept my peace and waited till he was 18 months before I really started pushing it. At that point he had about 6 words, but I noticed he could no longer say things that he had in the past, and what really struck me as odd was that his paci and tag blanket that went EVERYWHERE with him he did not even attempt to call them by name. Harrison's pediatrician was not concerned, but I knew something was wrong. after screening he did show to be slightly behind in is expressive speech, so slightly that he almost did not qualify for speech. Now a year and a half later he only has about 12 words that anyone would realize. He is however, very good and getting his point across with his hands and sound effects. At his last evaluation at 2 1/2 he was demonstrating cognitive understanding of language skill of a 5+ year old, while his expressive skills, what he is able to say, was at 1 year 10 months. So what does this mean.... it means while he can "tell" or show you what letter words start with, tell you which words rhyme with what, tell you sounds of each letter but can not put the sounds together, put stories in the correct order, he can not tell you that he would like cheese to eat. This cause GREAT FRUSTRATION to him and not to mention those around him. He is very verbal and tries to talk all the time it just does not come out in a manner that we can all understand it. So now we are looking at Verbal Apraxia as a way of life for years to come.

*it is unclear what causes apraxia, but is a defeat of the brain
* it is NOT a cognitive disorder
* it is NOT a muscle disorder
* it is a oral motor speech disorder, the problem occurs when the brain tries to tell the muscles what to do, the brain does not tell the mouth, jaws, tongue etc what to do in the right order or not at all.
*children with apraxia know what they want to say the words are in their head but often are not able to produce intelligible speech (one illustration I like is... "the problem occurs when the brain tries to tell the muscles what to do but somehow that message gets scrambles. It's like trying to watch cable TV without the right descrambler. There is nothing wrong with the TV station and there is nothing wrong with your TV. it's just that your TV can't read the signal that the station is sending out. The child must figure out how to somehow unscramble the mixed messages in the brain that are being sent to their muscles in their face and mouth")

* He will have LOTS of therapy (right now he has 2 hours a week, starting next week we will adding 3 more sessions a week)
* He may have therapy up into his teenage years more than likely
* He hopefully we will speak "normally" as an adult although he may always have some lasting effects of the speech disorder. Which more than likely will be worse when he is nervous etc.
*Apraxia is almost always joined by other disorders or delays which would explain the sensory processing issues he has (which I may touch on later), decreased trunk strength that we are also working on, and maybe even the sensitivity he had as a baby to milk protein etc.
* since apraxia is a motor planning issues he may be 4 or 5 before being potty trained
* He may continue for years to gain new words to only lose them again. for example he could say bird for almost a year, and now it has been at least a year since we have heard that word from him. He may say something "perfect" today and not say it again for 6 months. And if he does say something "perfect" and is asked to repeat it it almost always will not be able to repeat it under pressure.

* We love our little Red Head Wonder for the the blessing from God that he is and give him every opportunity to flourish that we can and expose him to as much as we can.
* He is getting speech and OT weekly along with John and I working daily with him
*He could go to the public preschool program but at least for now we have decided not to go that route since he is getting lots of therapy privately. He is however going to Mother's Day Out 4 hours a day 3 days a weeks to help with the social aspects, and I am using preschool home school curriculum with him daily at home working on language skills mainly at this point. He is already recalling words and sounding things out so I really think he will read before he talks.
* we are looking into other diets to try with Harrison to see if we see any changes as well.
* We also started his horse back riding lesson earlier than we had planned since there is research that it also helps speech and it is good for his decreased trunk strength

* He becomes very nervous and shy around new people, and what is the first thing someone new asks a 3 year old? "What's your name?" which Harrison can not answer.
*His friends don't understand why he can not talk like them, and if they comment on it he will go play alone.
* He Uses sign language and self made signs and sounds to try to explain what he wants, needs, or feels. So much so that we have stopped using sign language and teaching him new signs since he is starting to sign sentences, which would be fine but if he has the sign he does not attempt to say the word.
*He is beginning to act out in his frustration
* He becomes VERY FRUSTRATION when he repeats and repeats himself and we have no clue what he is saying. for example he has named his two chickens but we can not figure out what he is saying. He says the same thing every time but as hard as we try we can not realize what he is trying to say.
* He tries SO HARD but he just can't get things out. a couple examples-- we call my Dad "Grandpa" but Harrison says "PawPaw" if you ask him if that is PawPaw he will say no but if you ask it if is Grandpa he says yes. He hears the difference, he knows the difference he just can't say it. --- also he can make the sound for each letter but can not but them together or with certain other sounds, for example he can say Mama and Matthew which both start with "M" but when he tries to say MOO what comes out is "Boo" he can not transfer the "M" sound over to a different word with a different vowel following it.

Harrison is a super smart little guy that loves being around people and learning new things he just can't tell us what all he is learning and can't ask questions about the things he want to know more about. I am able to understand roughly what he is talking about I would say 70% of the time but to everyone else in his life it is much less. It is hard as a parent to see your child struggle so much, you want to take the pain away but if we shelter him now it will only be harder for him later. We pray that his disorder will only make him stronger and us as well, and that he will not let it break his sweet sweet spirit. We love our little miracle from God, and are so blessed to be called his parents.


Hannah Fields said...

I love your little miracle too. Thank you so much for sharing. You knew all along something was up. You are such an in tuned mother. You are an amazing mother and harrison is a testimony of that. He is so smart and so well adjusted. You have so much patience and creativity. I will continue to pray for him. That must be so hard for him. I can't imagine the burden you feel. I will lift all of you up in my prayers.

Carla said...

I always knew you said he went to speech, but never really knew what was wrong. You guys are doing so much for Harrison and everyone else is praying for him. Keep at it and all of you will overcome the obstacles with great feat! So many parents would half heartedly do what you are going above and beyond to do! Always remember, God won't give you anything you can't handle!

Lesley said...

Wow - to think I've been teaching kindergarten for a decade and I've never heard of this. Actually, I'm beginning to think I may have seen this before but I've never heard a name given to it.

Harrison sounds like such an amazing little boy! I'm equally impressed that you were able to pick up on it so early. It sounds like you all are being so proactive and it makes me think this little man will probably continue to amaze those around him! : )

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