Tuesday, October 5, 2010

Dax..

My dear and much loved oldest son has never been given the easy road of life. I am not sure what life has in store for him in the future I can only hope it is an easier road than he has traveled thus far.
Many things happened this week to him and for him
.As most if not all of you know dax is a pretty high functioning child on the spectrum of autism. For the last few years his major issues have come down to being socially acceptable and the ability to communicate verbally in a way other children and adults can understand. His Developmental Speech Apraxia is the root cause of this. His speech understand ability is around 3 and this is so hard on a child who is roughly cognitively a typical 8-9 year old high energy boy who wants to be liked by his peers. He tries hard to fit in wearing the coolest shades, the coolest vest, and working hard on his hair. Unfortunately he does try too hard and seems to focus on the being friends with the one kid in class who has not been fond of him since kindergarten. This hurts him much more than most can see. This weekend he cried tears of such sorrow not only from this child just not liking him , yet also from the feeling that he is unheard and not understood by friend and teachers alike. Even I his mother fail 30% of the time in the ability to understand what he trying to say. His desperation to be heard and understood is growing with speed his speech is just not able to keep up with, his disorder is hard to treat and his unfortunately considered a severe case. This disorder is neurologically based and past speech treatment which he has received since 13 months there is not any solid ways to treat him.
We have now found a way to help him be understood Its is not perfect, It seems like a miracle that something like this is available.Its called a dynavox

This device is will in so many ways can and I am hopeful will change his life as he knows it now.He was seen this week by a group that advocates and writes the paper work so that kids like dax who cognitively are where they need to be but due to various reasons including apraxia or even cerebral palsy can not communicate in a way others can understand.
Dax played with this device a few days ago and immediately had such a reaction that I wish we had a camera in the room. His face lit up with wonder and delight as he started using this device he immediately looked at all of us sitting in the room and said people will understand me with this. I could not help it all I could do was cry. He knew so immediately what this was for and what he wanted it for. No explanation no resistance just pure happiness that he can be heard and understood.
It will take a couple months for him to receive his own device. we know we have bumps in the road ahead. Getting insurance companies to pay for this can and tend to be difficult.His wait is hard for him right now but once he has that device I see it taking him places he never knew he could go.

1 comment:

Beckstrom7 said...

I am so glad you are able to get this device. The twins use it in school and I wish we had it here are home. They have a similar device that you can get for a Nintendo ds but medicaide wont pay for the ds becuase games can be played on it. I am glad dax is doing well.