Having a Child with Down Syndrome, Part CXXV: Technology Judiciously

I read an article this week in The Guardian about Terry Jones, one of the members of Monty Python. His family has announced that he has frontotemporal dementia. It is sad to hear in a man so well educated. In reading about the symptoms, many of them lined up with Alice’s. Her stroke affected her frontal and temporal lobes and her pons. She has difficulty monitoring her behavior and can’t resist impulses to touch/take things and recently to eat without end (this is a combination of both teenage hormones and impulsivity). TV is an ongoing issue as well. If Alice had the access, she would watch TV until she passed out and start right up again when she woke up later. So what do you do?

In our case, we made sure that the TV and the router that connects the kid’s laptop to the internet are both on remotely controlled switches. In our case, I selected WeMo switches made by Belkin. The software that came with them was kind of junky, but there were several open source alternatives that worked better for us (WeMo Home on Android is our current go-to). So from our phones, E and I can tell if the entertainment center can be turned on or not and change that state without having to trudge down into the basement. The system works well – for most of the time, the switches are off. We turn it on if it’s OK for Alice to watch something on TV and shut it down after she’s done. If we remember.

This past Monday, Alice got up super early (probably 5:30 or so) and made a bee line for the basement. I woke up a little later and thought I heard the TV on, so I grabbed my phone and shut it down. 2 floors up, I could hear the indignation (“Hey! Don’t you ever ever turn the power off again!”). Alice stomped up one flight of stairs and started playing with her iPad. Unbeknownst to me, she wrote an email to E:

On Apr 17, 2017 6:18 AM, “Alice Hawley” <> wrote:

My daddy to show not off

For working entirely by herself, she did pretty well. I suspect that she probably used the word cues to make sure her spelling was correct. E sent her a reply:
Dear Alice,

Thanks for letting me know you are having problems with the TV.
I am sorry that it startled you when the TV turned off abruptly this morning. I can see where you might think  the TV was broken.  If that were the case, I would most definitely help you.
However, what should you being doing before 6:00AM in the morning? (Hint: it is not watching TV)
This reminded me of a story a friend of mine from high school told me about when he was very young. His mom was making some Jell-o and he wanted to help. She told him ‘no’ (which makes sense – Jell-o gets made with boiling water). He went to his room and wrote a note that he threw into the kitchen before heading back to his room:
I hate you mom because you woodent let me steer the jello
I feel like Alice did the same thing, but instead of writing with a pencil (which would be very hard for her), she instead went to the adaptive technology and was able to get her point across. Hooray! Everyone wins!
Except for the whole TV thing, but hey.

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