6/10/2016 8:57 PM
My sister-in-law Kay was the oldest of the sisters and brothers in my husband's family. After their mother passed away, as many first children do, she assumed the role of family matriarch. She refused to let us all go our separate ways by maintaining weekly phone calls with her brothers and sister. Kay was born in the 1940 with Cerebral Palsy and you have to think back to that time, a much different landscape of services, legislation and attitudes. However, Kay grew up in the family household went to school with her brothers and sister, graduated high school, started college, which she figured out wasn't for her and came out to start a career, which then (an here's where things still aren't too different) options were limited due to restrictions on earnings impacting which services you could and couldn't continue to receive based upon your disability status. So she did some work for pay and a lot, I mean a lot, of volunteer jobs. Kay loved sports, especially those from the University of Wisconsin, Go Badgers! And the woman loved Scrabble, every version of it. Any game with letters she played since she was a little girl, and she excelled at word games - Quibbler, etc. Beat the pants off me and my husband every time! I think it's only her other sister that gave her a challenge.
For most her life, she used her natural voice to speak, but as the years went on and more unfamiliar partners entered her circles - in jobs, at church, out shopping, in her brothers and sisters' lives, as care givers, especially after she hit the age of 50, it was suggested to her to look for an AAC system to use, if only as a back up. I won't get into too many details - for many reasons, she chose to use a spelling board and did not go with an electronic system. But, here enters the topic of Presumed Competence.
Even though I've been in the field of Augmentative and Alternative Communication (AAC) since 1986, I'm a teacher, not at SLP; so I'm not able to write up the assessment that is needed for funding for an AAC system. I could make suggestions of features of systems that should be trialed with Kay, etc. But in the end, it came down to an SLP evaluation. During an evaluation from a qualified AAC specialist, I'll just say that although a list of products that were spelling based was sent along with her to her evaluation, according to Kay's description of the evaluation, she was shown only items that should be given to a "baby"; Everything had pictures, no letters, no spelling. And that was that. She wanted nothing to do with AAC. So, one look at my sister-in-law, and there was no presumed competence. Just start where they always start, no talking about what she did, her college experience, her love for letter games, her use of the computer, etc - you get what everybody gets, the same image based AAC system. And luckily, Kay's a tough one and said that she wouldn't sign for it, absolutely not.
Sadly, it took 2 more years until a personal aide who was helping Kay to write her life's story, requested that she start pointing to letters for the words that Kay was dictating that the aide didn't understand. And that's how the first letter board got started. That aide never once questioned anything that Kay said about her past, never once questioned what she was telling her, what she wanted to make sure of was that she got all the details, and that she got them correctly onto paper. She presumed competence from the beginning, just as all of Kay's family and teachers had done when she was a little girl. And luckily as most people in her life do. And with a power wheelchair, I've witnessed what Kay does when people aren't treating her well, she just drives away from them. Sometimes mid-sentence. There's no need to finish trying to talk to someone like that.
After showing Kay and my other sister-in-law, Judy, lots of spelling boards, together we made a custom board based upon Kay's specifications and then Judy's request for modifications. Boy was if fun to watch her dear friends get out the notepaper and try to keep up with her spelling ability then! Her friends and many care givers that did shift work at her home presumed competence, you could tell this from the way they talked to her; the questions that they asked her. It wasn't all yes and no stuff. It was how did she think about certain things that were happening, opinion based questions, recall questions - because we could always count on her to remember the facts about a situation or people from the past.
On one stay in the hospital, she didn't have the strength to point to her spelling board, so I taught her the process of Partner Assisted Scanning (PAS). There's some nice descriptions of PAS in different links here on the community. Many of the hospital workers started showing up to see Kay "talk". Maybe some of you have experienced that. When your family becomes a bit of a "show" or a "presentation" that you didn't expect to be doing while you are just living your life. Kay had never seen PAS done before and the very first message that she said through PAS was "did you invent this?" It took me awhile to recognize that she was talking about PAS and not the issues that she was dealing with for why she was in the hospital in the first place. The sad thing about that hospital visit was that the nursing and other staff often talked to us and not Kay, they often spoke in loud voices as if she was Deaf, or they talked slowly as if she didn't understand what they were saying. And my husband and myself found ourselves having to remind them, she's your patient, not us. She just has CP, she's not deaf. She understands you, talk normal. And you could hear Kay take a deep, deep breath, wishing she could just drive away from them.
I write in past tense about Kay because she passed away at the age of 72. We lost our family rudder for awhile; truly she kept us on a path of family togetherness. We've got it back, the calls still happen; not with the same frequency as she kept pace; but most calls have a trace of her. We use the internet more, Kay didn't like email much; I think she found it too impersonal. What was personal was Kay, you, and her communication board, letter by letter - you following along as she spelled out what she had to say to you. It still travels with me.
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Each question you will see is related to a certain message that your child might be able to express using a variety of behaviors. Read the question and decide whether your child is able to express the message described using any of the listed behaviors. If the answer is YES, then you must also decide whether your child has mastered the use of each behavior or whether it is still at an emerging stage. Check either the mastered or emerging box next to any behaviors your child uses to express the message. Use the following definitions to decide whether a behavior is mastered or emerging