Decision is made: time to develop a proper home-based curriculum, and withdraw Owen from school once the programming and support are in place. I’m aiming for March, but this process could take until the end of the current school year.
A good first step was made – I had a long meeting with Laurel (at Bloorview) last week. She is Owen’s new SLP (Speech-Language Pathologist) in the ‘Communication and Writing Aids’ department, which focuses on issues surrounding augmentative and alternative communication. After months – well, years – of my dormancy in developing Owen’s communication plan, we needed to regroup and decide on next steps. We went over all kinds of options for Owen in terms of introducing a communication plan. She was initially concerned about my focus on Yes/No – it’s a fairly sophisticated concept that relies on the partner asking the right questions. It also boxes-in the person making the choice – we often have so much more to say than just yes or no…
We explored choice-making, for both knowledge and preference, but were faced with the usual dilemmas of implementation and execution. In order to select from multiple options, Owen would need the options to be visually displayed, and arranged so that he can indicate a choice. If his partner is signing, how would they show pictures at the same time? If it’s a choice-board, it is likely too much to expect him to watch the signer and see the pictures at the same time. Historically, it’s been quite difficult to determine when Owen has made a selection – he gets stuck in postures and can’t coordinate fast enough to indicate choices within a timeframe. His eyes also get stuck. While his vision is excellent, he cannot intentionally focus on something that clearly indicates a choice. Same goes for gesturing – when he becomes engaged or interested, his reflexive tone kicks in and he’s physically lost to the whole process. So, we came back, full-circle, to yes/no. A more complex expectation, but perhaps an easier execution of indicating a response.
An assessment session has now been planned, to be held in a couple of weeks, with Laurel and Owen’s Occupational Therapist. We will engage in choice-making activities, use some cause-effect games and toys, use the computer – and we will see if we can pinpoint locations for one or more switch sites. This will help establish a foundation from which to create a communication system. Since Owen’s had his baclofen pump surgery, his tone has changed, and it’s definitely worth re-looking at accessibility..
I’m excited about this plan, because I have all this experience behind me now – I have a sense of what’s too much, what’s not enough, and what my own limitations are. For example, I know for sure that any system that has me plastering pictures all over my home is not going to work. Nor will a system that requires the caregivers to wear velcro aprons, on which to stick pictures. Nor will a system that utilizes voice technology that neither Owen nor his Deaf friends can hear.
I know all the things I don’t want. Which is perhaps a good place to start.
Hi Jennifer and Owen
Congratulations on setting up the site!!! It looks wonderful and should be an excellent way for individuals to connect together on issues that interest us all. Jennifer, you are so articulate…we can all learn so much from you and Owen.
Susan and Rebecca Beayni
Very good site, and perhaps and jumping off place for “the book”. Thanks for letting me know, I’ll keep looking.
WOW hats off to you. You are doing a great job. From knowing you and your family…we have Owens twin here in some respects they are so similar and other times seem so individual. We love you and your family. Wish you the best in this journey. Can’t wait to read more and more importantly learn from you.
All the best
Jen – Great initiative… as always. Your blog is a perfect way of asking the “universe” for support and guidance. It’s out there… we just need to ask for it. You continue to demonstrate your on-going desire to allow Owen to experience life to his greatest capacity. Your love for him is clear. He thanks you – and I thank you!