You Don't Say

Angelman Syndrome, AAC and everything in between

Blogs to read

Going rogue; how we found SFY

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Beginning …..January 2011

The end of May, we decided not to replace the Dynavox. It was temperamental and their updated version was more difficult to program. To top it off, we could not afford to support it when Jess aged out of school. We could not afford to buy a $9,000 device every four years either. Because the Dynavox wasn’t user-friendly, Jess realized it was easier for her to use gestures. For us, the underlining problem with the Dynavox was when Jess had more to say, she had to navigate through too many layers, it got complicated.  She lost interest.

The Dynavox. This was taken when she first got the device. Notice hand over hand, this is so wrong

Back in January, Jess had been evaluated for other AAC devices. They said no to PQ2G and  I don’t recall what they suggested, but they definitely did not recommend using an iPad due to her poor fine motor skills,  and her distractibility.  Even so, the only thing I had seen at this point was Proloquo2go.  Something about it seemed not appropriate for Jess who was now 20. [Read more…] about Going rogue; how we found SFY

Hello, world!

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The first day blogging, the 7th month, the 11th day, learning curve is steep.
More to follow…stay tuned!

Having expectations

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Jess at 17 months, on Lewis. She was on a horse before she could walk. May, 1993 at Timberlane
Jess at 17 months, on Lewis. She was on a horse before she could walk.
May 1993 at Timberlane

When you start a family, you aren’t just expecting, you have expectations. We had this vision of how life was going to be. My daughter was going to love horses. She would ride at the Devon Horse Show in the short stirrup division. We would travel to Maui, visit friends and explore the island. We were going to live on a farm, have a garden and grow our family.

Well, life doesn’t always go as planned. Most everything I dreamed did come true, but not in all the ways I thought they would. [Read more…] about Having expectations

Starting in the middle

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Our story is going to start somewhere in the middle.

This is briefly our story as to how we got to this point:  Every year, it was the same thing. September meant a new teacher. At parent’s night, the teacher would look at us like a deer in headlights. She’d have a glazed look in her eyes when we shared stories of how clever our daughter was.  We warned her about being manipulated and asked that she not help her too much.  I think teachers felt we had unrealistic expectations for a child that had seizures, was highly distractible and had poor fine & gross motor skills. Pretty much, everything was difficult for her. They saw the package, but they didn’t understand the child.

School used what I call a drill system (for lack of remembering the correct terminology).   If the child is requested to repeat something like sorting colors, they have to do it correctly 10x before they can move on. Well, Jess did it correct the first two and then shut down. The teacher would then say she didn’t understand. Jess would do these things on her own, but would not perform for anyone. My gut told me it was too simple, but at the same time, I knew a seizure would disrupt her train of thought. Unfortunately, if she didn’t have a foundation, we had nothing to build from. [Read more…] about Starting in the middle