You Don't Say

Angelman Syndrome, AAC and everything in between

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Adaptations and repairs for iAdaptor

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Home made key guard
Home made key guard

When we first started using the iAdapter case, the only key guard that I was aware of was  made of hard plastic. It prevented access to some words.  The above is a prototype that husband had made.  Unfortunately, we need a heavier press to mass produce this.

While away for the weekend, the strap for the mini-iAdaptor broke. A quick trip to the hardware store for key rings and the handle is more robust than before.

clip to strap broke
clip to strap broke
repaired and more robust!
repaired and more robust!

The case needed to be unscrewed in order to put the key ring on. Now we are good to go!

 

SFY: first month

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After using Speak for Yourself (SFY) for a month, we started to see a pattern of success. Whenever a parent hears their child’s voice for the first time, be it their actual voice or their AAC voice, it is magical.  The following is a text conversation I had with our SLP   Even though this conversation is about my daughter, I think the information is universal as to the beginning of language development. You might experience this in one week, one month or one year, but we all share this same journey to find a voice!

In the beginning, we used a full sized iPad in an iAdapater case. Originally we had a hard plastic guide, but this is a guide is a prototype my husband had made.
In the beginning, we used a full sized iPad in an iAdapater case. Originally we had a hard plastic guide, but this is a guide is a prototype my husband had made.

[Read more…] about SFY: first month

Minimum wage; not black and white

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Oh…. I’m so betwixt and between about the topic of minimum wage. I just read a blog where the writer did not agree with the justification of minimum wage for the disabled. Specifically, she discovered that Goodwill pays 22 cents an hour. There are aspects of her post that I agree.  But to be honest, this is not a black and white issue. When you dig a little deeper, you start to see the gray areas.

My daughter works in an occupational training center (OTC) and she is paid by the piece. You will find a wide spectrum of abilities with the adults who work there. This is a place where someone begins to learn basic skills. As skills and independence grow, there is opportunity for these men and women to work outside of the OTC. However, not everyone is going to be able to make this transition. Jessie gets jobs that fit her skill set. In the case of my daughter, it was by the good grace of this OTC to even accept her in their program. They did this because they felt that she was capable of more than what would be expected of her in an adult day care setting. However, the reality was that she didn’t have enough skills to be in the OTC. The reasons for this are many. Jess could not sit still, was highly distractible and she was not a good worker. She had no skills. Over the course of the year, she went from “sitting and observing” to being part of an assembly line which produced over 200 pieces of product. [Read more…] about Minimum wage; not black and white

How do we know?

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Today we visited my Mom. Mom is 90, living in assisted living and she is in the late stages of Alzheimer’s. Even though we were there, it didn’t appear as though she was.

Mom is losing her ability to walk. She has lost her hearing. She is not able to form words. She getting closer to being in total isolation.

When someone gets to this stage, the first assumption made is that they are not aware of anyone or anything. In fact, this is exactly how I felt today when we were with her. What if I am wrong? What if she is seeing me and having complete thoughts? What if her body has failed her and she is trapped inside?

People make this assumption about my daughter because she does not speak or hold eye contact. I am not going to make this same assumption about my Mom. When I held Mom’s hand, she held it tight. Mom is indeed “there”.

There’s no such thing as too old.

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We experienced every possible reason, no, I need to say, every possible excuse as to why our daughter could not use a high-tech AAC device. Today’s post by Speak for yourself sounds like our story. What I want to emphasize is “your child is never too old to learn”.  You may have to change their way of thinking. You will have to change your way of thinking too.

During the seizure years, Jess learned at a very slow rate. It was very difficult to watch her peers reach milestones, much less watch younger children do all the things she couldn’t with ease. [Read more…] about There’s no such thing as too old.

Catching them when they fall

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IMG_9426When children are small, we catch them when they fall. In our case, my daughter Jessie fell. She fell a lot. She had bruises up and down her shins and everywhere else that made contact with the ground. We caught her when we could. As she got older, rushing to scoop her up seemed to create more drama, so we learned to take her lead. She learned how to pick herself up and keep moving (this does not mean that I ignored her, I just didn’t rush to her in a panic). [Read more…] about Catching them when they fall