Normal is a four letter word. Extraordinary is the new black.

Friday, July 6, 2012

Always learning....patience

This week one of our kids has come back to visit us. Six years ago, he lived here for a short time, but left a mark on our family. Six years ago, when we got the call about him needing a place to stay, the man on the other end was solemn. He explained that there was a young man from Japan coming and that he needed to tell us that he had cerebral palsy. He wanted to know if that caused a problem for us having him stay here.

The question stunned me. I asked, "Is there something I should be aware of? Do I need to make sure that my home is accessible? I don't understand why this is a problem." He alluded to the fact that we were not the first family he spoke to and I stopped him and said, "We would love to have him stay with us."

During his first visit, he was off at school learning a lot, but there was a little time to play. One night we went to a BBQ at our friends and played badminton. I will never forget watching Keisuke play. He moved like a butterfly chasing that birdie, but he stung like a bee when he kicked our butts, time and time again.

This week having him back we were so excited to catch up. He was excited as his English was so much better and we have had some really great talks. The other day, we got to talking about disabilities, and I thought we were going to have a conversation about appearances and assumptions, but once again, one of my kids taught me something.


I asked him about what it was like to have a visible disability, whether it was frustrating when people assumed that his mental abilities were affected as well. For Keisuke, motor control is a challenge. This affects his walk, his movements and his speech. On more than one occasion, I was witness to someone assuming that his cognitive abilities were equal to his motor abilities. Having a little man with an invisible disability, who has trouble with social and emotional regulation, I have been witness to someone struggle to understand why a seemingly normal looking child was behaving in a way that did not mesh with his physical appearance. Having another child with tourettes, I have also bore witness to misunderstanding and assumptions about what it is, and what it should look like.

However, Keisuke's answer surprised me and made me think. He explained that he came to North America to go to school because here, people with disabilities get help, and are schooled with their peers. He explained that at home, children with disabilities are schooled separately regardless of their abilities and are most often not socialized with their peers. He explained that because of this, many people in Japan do not get to learn about people with disabilities. There is no chance for fostering understanding, because there is no opportunity to misunderstand. He went on to tell me that he prefers it here, where he might be misunderstood at first, but he has the opportunity to educate others and learn for himself.

It is a truth though. We can get all up in arms about the things that people do or say when confronted by a disability. We can shut people down, or get touchy that people say the wrong thing. We can get indignant and frustrated and even angry. We can, but none of that opens communication. None of those responses advocate or educate. Keisuke, reminded me that patience in the face of misunderstanding, fosters understanding. He reminded me that as a mom to children with differences, I would rather someone say the wrong thing to me, and open a dialogue, than say nothing and remain in the dark.

So I choose patience in the face of misunderstanding. I recognize that I understand, because children born to me dictated that I must learn. I recognize that it is my job to patiently educate and advocate. I accept that anger and resentment, breeds disconnect and discord. I choose patience in the face of misunderstanding, because I hope that it means I raise my children to do the same, to approach the world with the same grace, courage and intelligence as this amazing young man has shown me.



Also, I must confess, I love that he still calls me mom.

4 comments:

  1. Lisa, don't take this the wrong way as we've never actually met... But, girl, I love you.
    ~Melanie

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  2. Thanks hun- taken exactly the right way. I think you are pretty freakin spectacular as well. Anyone that enjoys a good prop axe/feather fan compilation is cool in my books.

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  3. Your post gave me goose bumps.....beautifully written and yes you are one pretty awesome momma with some pretty awesome kids too. xx

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  4. Beautiful. Love so much that he still calls you Mom.

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Thanks for stopping in for coffee. I welcome a good conflab, and appreciate different ideas and opinions, and am always happy to listen to another take on things, just keep it respectful.