Pains and Joys of Raising a Disabled Child

I know my goal was to write everyday, or at least once a week, but that hasn’t happened.  So I will try to catch all of you up on where we are.  In the summer I lost my job and had the chance to think about what I wanted to do next.  Since having Cayden and learning more about disabilities I thought it would be nice to get involved in special education.  I now work in a middle school special education classroom.  This has been a time of learning and seeing just what goes into teaching a child with special needs.

Cayden seems to be really enjoying school and learning.  Our biggest goal for him is learning to learning to communicate effectively.  We are looking into getting a DynaVox for Cayden which would allow him to speak.  He does have an iPad, however you can’t lock any of the games or apps on there.  You could only have the communication app on there but then it would take away from the learning.  So our next step is to get in contact with Cayden’s speech therapist and work on filling out the paperwork for Medicaid. The device itself cost thousands of dollars, however Medicaid will help pay for it which is great.

We are also hoping to get Cayden into a program that would provide therapy outside of school.  The school setting isn’t designed to offer all the therapy needed.  He usually gets thirty-minutes a week or so of therapy which just isn’t enough.  With an outside agency it would bring it from minutes in a week to hours.  So hopefully in the next couple of weeks we can get that started and get Cayden the therapy he needs.

So today we were late, which isn’t any different from any other day.  But today was speech at the Elks Rehab in Nampa across from the hospital.  While Cayden loves his speech teacher, he loves his iPad more I think.  He loves to play his Thomas puzzles and listen to Veggie Tales over and over.  But today it wasn’t time to just play games, it was time to use his iPad to talk. We are on the verge of downloading a talking program or an Augmentative and Alternative Communication program (AAC).  The one we are trying out right now is Sonoflex.  We haven’t purchased it yet due to the price.

However, we can use a free version that has limited capacity of the full version.  So today in speech, Cayden had to ask for certain items using his “voice”.  His therapist was reading a story and at one point Cayden had six options, she would ask him which one he wanted.  Instead of just pointing to the item he wanted, she would help him touch the pictures to form a sentence.  “I want a fish” then she would respond to that and give him a fish.  The hardest part for us is knowing exactly what he wants, but having him use his device.  Cayden will either just keep pointing and talking in his language or start whining.  We have to try to keep him focused on using his iPad for speaking and not just games.

So today Cayden did good.  He was able to stay focused for the most part and ask for things he wanted without wandering to different pages in the program.  Tomorrow we will be getting together with someone from the Lilypad who will help us fill out forms and get Cayden involved in some more areas of therapy.

If you have any questions or have a story you would like to contribute feel free to let us know.