At the age of 13, Jess was diagnosed with Angelman Syndrome. Of course, I knew nothing about it and I did what every parent does, researched. For a split second, having a diagnosis was incredible, especially after waiting so long for one, but then when I read the prognosis for AS, I felt like it was a sentence. The majority of AS were considered developmentally delayed (which replaced the word retarded), were child-like, always happy, not able to have independent living skills, etc. This stopped me from wanting to read. All the “experts” said what my child couldn’t do, there was nothing about capabilities. The symptoms we related to were: fair skinned, ataxic gate, severely apraxic, globally delayed and seizure disorder. However, there was one piece of information that I clung to. “AS has a higher receptive language than their functioning abilities”. When I refer to “functional abilities”, I mean that fine, gross and verbal skills are weak (or they may be non-existent). Receptive language, the ability to understand was far greater. At this point, I shunned the AS community because I felt they didn’t give me much to work with, but that left me with just the educational system for support. [Read more…] about Angelman Syndrome; needs to be redefined
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Handwriting; an emerging skill
This morning we worked on handwriting. I still can’t believe that schools no longer require kids to write script? From my point of view, it is a very important fine motor skill. What are we raising, generations of button pushers? (now I need to tread lightly because this is how Jess communicates, on an iPad, this is not what I am referring to, was thinking Jetsons, three-day workweeks).
Jess was able to hold the pen for about eight minutes before hand fatigue. We used a foam curler to give her a more comfortable grip on the pen. When she finished, she then looked at me and said “work” on her iPad. This was work for her. Hopefully, one day, she will have enough fine motor hand strength to write her name and a few words. However, this time, this attempt, she was very pleased that she had more control over the pen. I’m encouraged. [Read more…] about Handwriting; an emerging skill
Voiceless But Still Talking; Looking back
It is true, the best way to understand someone is to walk a mile in their shoes. In our case, one week in October 2013, I did not speak. My only communication was through the App Speak For Yourself (SFY). Not until the challenge had begun, did I realize that it was AAC Awareness month. I do not believe in coincidence.
Having a week of immersion allowed me to get a better understanding as to how my daughter, who has Angelman Syndrome, has to navigate through an AAC device. This was the hardest yet most rewarding week I’ve ever had! It didn’t take me long to realize how many assumptions I had made. I wish everyone could/would do this challenge. I guarantee that if you do, you will walk away with a new appreciation of how difficult it is to be non-verbal in a verbal world. If you can’t commit to a week, do this for a weekend, a day or 12 hours. We learn language through immersion and using a device is not much different than speaking with your voice. You need to use aided language. Your part is to model, model model. If you had thoughts that all you had to do was hand your child an AAC device and they will magically talk, think again. This is a team sport and everyone has to participate. [Read more…] about Voiceless But Still Talking; Looking back
Adaptations and repairs for iAdaptor
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.
The case needed to be unscrewed in order to put the key ring on. Now we are good to go!
SFY: first month
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!
Minimum wage; not black and white
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