Window Wake Up Call

When you have a child with autism, you spend a lot of time focusing on getting through the day.  The bigger picture is sometimes harder to see.

A few days ago Adrian put his fist through a window.  It was a wake up call for my husband and I.  Looking back, we can see that over the past few weeks, things have been increasingly difficult.  He’s been frustrated, angry and upset more often.  His obsessive/compulsive behaviors have become more pronounced and more difficult to deal with. 

We’ve decided it’s time to meet with the doctor and discuss what options we might have in helping Adrian to deal with the hormonal surge that we think is making it much more difficult for him to control himself.

Getting Grandma

Last week Grandma flew in and I took Adrian with me to get her at the airport.  While we drove I explained where we were going and why.  He was very happy about it and used his device to say, “I want to go – Grandma”   Upon arriving at the airport he waited patiently with me.  When Grandma arrived, he pointed towards the gates.  He used his device to tell us ‘Airplane – take off.’  Apparently he was hoping to take a trip himself. 

Governor’s Expo on Assistive Technology

This past week I had the opportunity to participate in a presentation at the NY Governor’s Expo on Assistive Technology.  With my Mother-In-Law in town, my husband and I were able to spend the day there.

We saw a lot of the devices and technologies I’d heard or seen online.  It was cool.  But I can’t tell you how my heart sunk each time we asked about pricing.  Most responded, “Medicaid Standard.” 

Medicaid standard.  Yes, they’ll charge every penny that Medicaid will pay for it. 

My heart goes out to all the kids and families who are still waiting for the government to push that Medicaid paperwork from desk to desk, still waiting for their appointment with someone who can evaluate their child for assitive technology, still waiting for teachers and speech therapists and pediatricians and school districts to contribute their approval, still waiting for the device to arrive, ….still waiting to get a voice.

Our First Steps to Writing

I started with a whiteboard.  Adrian didn’t have a lot of hand strength and quickly gave up on writing with a pencil or crayon because it took too much pressure to make it write.  He enjoyed markers because they wrote with even the lightest touch.  A whiteboard let us erase errors easily and made the whole thing portable.

I had planned to use our collection of wooden, magnetic letters to be an example he could follow in forming the letters.  Instead we stumbled upon a highly motivating activity!  Adrian LOVED to write the letter and then place the magnetic letter on top.  A matching game of sorts.

I could form a word with the magnetic letters and he would eagerly write each letter and place the magnetic on top.  He aimed to make his letters about the same size so the magnet would match.

With this set up Adrian wrote words all the time.  He wrote ‘chase’ over and over again to play his favorite game.  He wrote ‘dance’ so he could have his turn dancing with mom in the kitchen. He wrote ‘cookie’ so he could eat his favorite treat.  In this way we increased the words Adrian could sight read and worked on his handwriting skills at the same time.  And best of all, he enjoyed it!  

 

Where I’ve been

I haven’t been here cause I’ve been busy being HERE  :)