Last night, (on Maryland Public TV digital channel 2) I watched the most moving and meaningful and relevant documentary ever. It was called "Including Samuel" and was about a family's journey to understand what it means to have a child with a disability. Along with that acceptance, they found out about inclusive education and the disability rights movement. It's a journey that we've been on, although I think we got there on a different path. Their school system has been working towards inclusion for a long time, while it feels like we are blazing some paths, at least in specific schools if not the entire school system.
There's so much about this film that struck me. Even though Samuel was 9 at the time of the filming, disabled teens and adults were included and actually spoke for themselves. There was honest discussions from a sibling about how having a disabled brother brings him joy. Frustrated and overwhelmed teachers also had their say. The films showed people with profound disabilities honestly, without sanitizing the realities of their lives. I could go on, but I'm not sure it makes for an interesting post. Probably the best thing would be for everybody to watch this film, or at least go to the website about the film (where I got the image above).
There was one line from Samuel's mom that struck me - "Yes! I've felt that exact emotion!" She said that when she thought about all the things that the different therapists and doctors wanted her to "work on" with her son, it would take all the time she spent with him. She realized that would turn her into her son's therapist, and that in turn would prevent her from being his mother. Oh, I have so been there! Consistent rules between school, home and therapy are OK, but I want my son to know I love him unconditionally. At school he can have reward systems and points and other behavior modification. At home he needs comfort and he needs to be able to trust us. I'll read with him if he'll let me, but I will not torture him by making him constantly talk about what he's reading. At home, there's space for him to veg out and play on the computer and play with his siblings and draw and make music. These activities are not therapy. They are life and existence and comfort. They won't be eliminated from his life.