Jeanette J.A. Holden, PhD, Queen’s University, Kingston, Ontario, CANADA
I have been wanting and meaning to update “Jim’s Story” for a long time, but developing acute myelogenous leukemia in 2007 has simply meant I couldn’t manage everything. However, there are so many things that Jim is now doing that I feel I need to share these with other families. I was recently contacted by someone from Sri Lanka to translate Jim’s Story because the parent thought that Jim’s Story provides a lot of hope to other parents. Indeed, starting to speak at the age of 50 is very inspiring. Now, at 58, Jim is feeling so at ease talking to others – he is no longer shy and works very hard at being understood. I will be trying to write about new advances and how things are moving along for Jim through this blog, and hope you will be as inspired as I am when I see and hear changes in Jim that occur even now.
One of Jim’s support workers suggested that Jim is a Diamond in the Rough, but as we discussed this, we realized that every day there are indications of new cuts and refinements and that he is becoming a sparkling and special diamond. I feel this is true for all individuals on the spectrum, including those who are non-verbal (which Jim was for so many many years). Clearly a key to Jim’s changes has been the introduction of a means for communication. As I describe in Jim’s Story, it was a surprise when he started speaking after using a computer program, Write Out Loud, where the letters that are typed are spoken and the word is pronounced when the space bar is clicked. At the end of a sentence, the entire sentence is spoken. Jim has listened so carefully to the consistent pronunciation that the voice in the program produces, that I believe this has helped him to improve his own spoken language. He now repeats everything that we say to indicate both that he understands what we are saying and to make sure that he is pronouncing things correctly. I believe that he is very bright, and that this is true for most – perhaps all – individuals with an ASD. Sometimes, however, the frustration of not being understood (usually because they are non-verbal) leads to aggressive behaviours or other negative behaviours that are often expressed by persons on the spectrum and cover up the positive attributes.
Now for some recent observations:
Jim has a new support worker. His previous support persons were all very good and their approaches were good to get him to a point where he could talk and make decisions for himself. His new support worker – a retired teacher who is also a handyman – is working with Jim to fix things around our house and do woodworking and lots of practical things! Jim loves to see that there is a purpose for what he does. He doesn’t like to just hammer nails into a board; he wants to build something useful. We had a couple of old garden benches that needed sanding and repairs and Jim and Jerome did this together. We now have two lovely benches added to our garden – places to rest and view Nature. Jerome and his partner, as he calls Jim, have built stands for our rain barrels, made large trellises on the sides of our house for climbing plants to create natural art during the years to come, put together new stairs and will be making an addition to our deck, for planters! We also have some young female students working in our garden with Jim – planting and weeding. Everyone has remarked that in the last two months, Jim has become so talkative and interactive with everyone. He is not shy anymore but loves to share what he is thinking. One of the students graduated with a BA in Psychology, and she said that she has to discard all that she learned about autism in her classes, because Jim just doesn’t fit with what they were told – he is social and enjoys being with others – yet she also recognizes the true autistic behaviours. However, he is never aggressive anymore – we all believe that the big difference is that he is treated as a person first, and as someone with autism …… perhaps fifth! But certainly he is not simply a person with autism. What more can we ask and how much less should we be expecting? I think this is the secret to a successful relationship, regardless of the relationship – being respected for what you have to offer and that what you have to offer is meaningful.
I will be writing more, and hope that through my words, and – on occasion – those of Jim or others, you will find the answers to unlocking the brilliance that is just under the surface.
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