Here’s your eye candy for the day:
Now, moving on to Part 3 of my Paradigm Shift.
Some weeks ago I ordered a book called Disability is Natural. It is an amazing, life changing, eye opening book. In this book Kathie Snow talks about seeing people with developmental disabilities as healthy and happy. How we view them determines how we treat them, relate to them, speak to them, etc. So she mentions the importance of seeing people with disabilities as being okay and having a disability – not being their disabiilty. She talks about stopping the Traditional Therapy paradigm where our kids lives are disrupted to make them “better”. She tells us to think about the message we send our children – you’re not okay and I’m going to fix you. She spends a lot of time talking about all of the flaws of this model, especially the emotional damage inflicted on our children. Instead she suggests adapting the environment to fit our kids as much as possible, as well as using “daily life” to help strengthen kids with disabilities. For example, instead of having a therapist come in and stretch our kids, we can stretch them ourselves in the morning when they wake up. Instead of taking them to aquatic therapy, we can just go swimming with them and let them have fun and stretch and exercise in the water. Instead of going to therapy 2 or 3 hours a day, they can take karate lessons or other sports lessons where they can work out and exercise. This way our kids are treated just like other people and are respected and seen as being “ok”.
You can imagine how difficult this has been for me to read. From the very beginning, my paradigm was – More is Better. I figured the more I could offer Nathan, the better he would be. Our lives have been one big Therapy Interruption. I still don’t know how much I completely agree with her. But, as always, I choose to follow my usual approach – take what makes sense, leave what doesn’t. Some if it is a bit too extreme for me and I think it is important to follow a balanced, middle way approach (did I just say that??!!).
The key contribution from this book is the emotional component. Snow has spent a lot of time talking with adults with disabilities and shares their perspective throughout her book. I consider them the “experts”. They talk about the emotional cost of all these therapies. How they felt they weren’t good enough to be loved and accepted. How hard it was for them to be touched and manipulated constantly. How sometimes it was painful and they had no “refuge” from this pain – it wouldn’t stop as the therapist thought they just needed to work through the pain. This made sense to me, and is something I have always wondered. What is the cost of all of these interventions?
I’ve always wanted Nathan’s emotional and spiritual well being to be first and foremost. However, how do you know where to draw the line between what’s good for them now and what’s good for them in the future? For example, I can choose to say now – it would be easier for Nathan if he never has to do therapy again. But would that help him in the long run?
More than anything, this book gave me a lot of good questions and things to really think about. I love the focus on changing our view and trying to put ourselves in our kids place. I’ve been trying to do this a lot more with Nathan. And spending time in Nathan’s shoes is helping me to really understand how to approach his disability and the therapy approach. This has played a major role in my paradigm shift.
A while ago I posted about how we “lost joy”. We allowed ourselves to hyperfocus on therapy and stopped having fun and enjoying ourselves. Since January this has changed and we’ve been making time to have fun, go places, play. The Disability is Natural approach takes this idea one step further. She reccommends incorporating fun into therapy. For example, when kids play soccer, they have fun, but they are also exercising and working hard. Same with our kids. So I have been thinking about activities to do with Nathan where he can have fun and exercise at the same time, like swimming, joining music classes, etc.
If you haven’t already read this book – I highly reccommend it. You can order it thorugh her site: Disability is Natural.
Tommorrow’s post will be about My Stroke of Insight – Part 2.
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