Quick update. My son had his surgery to remove two benign bone tumors two weeks ago. It went much better than planned and his incisions are healing nicely, though he still has some pain. We had very good care in the hospital.
My son is now out of the school system. We have been unable to access person-centred planning or an increase in our Passport funding since he left school. I am advocating for this now.
Today my son and I visited a day program. It's in an industrial warehouse so it's kind of isolated. The people were very friendly and we recognized some people. They were setting up for a barbecue. Unfortunately they don't do sign language at this program. I think it would be a nice social environment for my son, but I don't think he would be able to work on the job skills he was developing at co-op. Because he doesn't speak and wouldn't have anyone actively signing with him, I think he might get lost there. The program costs about $1,500 a month for Monday to Friday, 9-3. That adds up to a lot of money.
We have been on the Developmental Services Ontario wait list for community supports like day programs, case management and person-centred planning, and not received any service in the last three years. My son's support needs, as assessed by DSO, are greater than 70 per cent of those on the wait list, but apparently our family is not "at risk," even though my son is not able to stay on his own at home (which makes having two parents work a little difficult).
I will be sharing our journey as we try to find meaningful things for him to do. That could include work or activities in the community with a support person, or some kind of program. I wish I had the ingenuity and guts (and money) of some parents who have created businesses for their children. Would love to hear any stories from people here on the topic.
Today someone on Facebook told me about this program called CORE. I hadn't heard of it and will go on a tour later this month. Contrary to the web description, it is primarily targeted to adults with developmental disabilities. They too don't have sign language support.
Another parent suggested this program called SOAAR, but it's not close by and costs $100 a day.
We are also going to visit a program at the Bob Rumball Centre and an arts program at L'Arche.
Does anyone know of any gardening or farm programs in the Toronto area? CORE did have a farm program but it sounds like it's been put on the back burner.
My son went with some workers and other youth to Windreach Farm for a few days this week. That gave me a chance to see Kelly Taylor again. She used to work with us in Family and Community Relations at Holland Bloorview but now manages the Windreach volunteer program. Windreach also has an adult day program, but it's way too far for us to do the commute.
While at Windreach, Ben slipped away from the group to return to this goat (above) who he was determined to feed.