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  • Alison Wilson

September 2020

Summer was just getting started when we posted our last update and now we've recently said hello to fall! September 2020 has brought many changes to our routines. There's lots to update you all on - here we go!

In my last post, I mentioned that we were accepted in the Holland Bloorview augmented communication program. Our virtual appointments with our Holland Bloorview team (a speech and language pathologist and occupational therapist) were very regular throughout the summer - for a period of time we met 3 times a week! To be honest, the journey of finding ways for James to communicate comes with it's fair share of frustrations. The development of speech has been a VERY winding trail of a journey. All day long, there are situations requiring communication. This piece of art resonates with our current stage of speech development, and reflects what we hope and desire to open up for James. Although, I'd add that communication goes beyond only "what I say", to include other types of social communication (sign language, augmented forms etc.) I think this piece offers some insight into the expanse of the inner world.

Under the guidance of our team from Holland Bloorview, James began using what we call a "core board" (77 words with symbols on a laminated sheet of paper) which is the "low tech" option. The goal was to model and have him use some core language by pointing to the symbol (ex. eat, drink, play, etc.) instead of relying on someone else to interpret his wants/needs. James knows theses words and has heard them many times but until recently hasn't had a way to access and use them. This is what it looks like:

The next step was to see how James would respond to a "high tech device". We've previously used another high tech device called PODD earlier this year which didn't have the results we were hoping for. It's difficult for James to not use the high tech device as a toy. So we trialed a new device for 3 weeks called Unity and gave it our best shot.

However, we discovered as a group that it was just too much for James at this time. That was a big disappointment for Mike and I. It felt like what we worked so hard for this summer resulted in ending where we started. We went full circle back to the low tech core board ("James' words" we call it). Our Holland Bloorview team will continue to work with us over the next year along with our Campbell's school team about how to increase James' vocabulary and use of the core board as well as a communication book (the low tech version of the Unity program we trailed) that we will get soon. James might be ready for a high tech device in the future but as we found out in the trial, not yet. The journey of speech and communication really continues to be one step at a time.

James returned to osteopathy with Judy. She challenged him with exercises that develop his core and help him get up into a four point crawling position.

James also went back to see another Judy - this time ABM (Anat Baniel Method) Judy. Sometimes we return to ABM as a type of "tune up".

James is getting more success pushing his wheelchair on his own now which is fun to see!

James started JK at Campbell's Children's school this month! We have been so impressed how well he's adjusted. He goes on the bus to and from school every day with no problem! Campbell's is a special needs school at Grandview Kids in Oshawa. James gets physiotherapy, occupational therapy and speech therapy built into his weekly schedule which is fantastic. September has been assessment month to figure out what equipment James will need and then the school will order for him. His physiotherapist has found some great equipment to encourage James' independence around the classroom.

James had his annual hip X-ray in August and unfortunately, the results were not good. His hips have further migrated which means the hip bone is moving further away from the socket. We are to repeat this X-ray in 6 months and meet with Dr. Camp, an orthopaedic surgeon from Sick Kids who is monitoring James' hips. In the meantime, daily weight bearing activity (standing, walking, 4 point crawling) is incredibly important for James and his hip health. We are also trying out a hip brace for James to walk in (helps the scissoring or crossing of legs that James still has problems with) as well as a brace to wear each night. We hope that this can not only slow the migration of his hips but also help improve the percentage.

Trying out the SWASH brace with Eric, our Orthotist from Design Prosthetics and Orthotics

We saw a new therapist named Mariana from WeFlowTherapy last week. She made us an abdominal binder that James wears every night and periods of the day sometimes as well. The purpose of the binder is to provide tension to the fascia (connective tissue surrounding the muscles, organs and bones) and to help stimulate the productive of collagen to strengthen the fascia system. This is a whole new avenue of learning that I have just begun. It's very interesting. We were initially encouraged to get an abdominal binder by our Grandview speech therapist to help James vocalize more by providing support to his torso. There's many other benefits too. We hope it will make a difference with continued use over time.

Here's some photos & videos of some fun we've had this summer:

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