Kintropy In Action

At the beginning of the school year, Hannah was given a device for augmentative communication called a base trainer. It contained slots where toys were placed, and Hannah was supposed to push the buttons to display which toy she wanted; then it would beep.

Truthfully, I thought this was below her level. She had been using pictures to represent things like songs she wanted sung since about 12 months old. She was using her pulse oximeter to get my attention since 6 months. (She would purposely kick her feet to make it go off. When trached, a person can cry but no one can hear you. If that didn't work fast enough, she would take off her ventilator which was even louder.) I went along with the base trainer because I thought they were the professionals; they know what they are doing.

A couple months ago, I read a book recommended to me by Robert called Schuyler's Monster by Robert Rummel-Hudson.

 

 

It changed my perspective on what was going on with Hannah's communication device. I realized I was not communicating effectively or correctively with Hannah's speech team.

After this book, I put some calls out, “Can she try the more complicated machines? She has not been exposed to them. We don't know if can use them if she doesn't try them?”

The main answer I got back is, “She needs to push those buttons and show us she making a choice. She needs to show she understands the abstract object to picture idea”

“She makes choices all the time. She pushes buttons all the time. I think she wants more from a device then picking out a toy or activity.”

“We haven't seen that.”

I then cited examples, “If I put her DVD wallet in front of her, she will look through the pages, and she lets me know which one she wants to watch. She has done this with books, toys and clothes since very young. She has a MP3 player made by playskool with a big button. She goes through pushing that to find the songs she wants to listen to.”

This was followed by a pause.

I finally said ,“I know that- in ten whole minutes once a month you get to see her you are not seeing the behavior you want. But I spend my days with her and she is past this.”

“OK, let me call some reps.”

“That sounds great.”

I, of course, had this epiphany at the end of the school year. Because of Hannah's age, we are switching from children's intervention services to special education service with Kindergarten. I think I will communicate better with them this time around.

Wish me luck!

By the way, if you need inspiration for dealing with your child's needs and the bureaucracy around us all you need to read Schuyler's Monster by Robert Rummel-Hudson.

--Mom