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Saturday, April 16, 2011

The Hidden Issues & the Lessons They Teach

I wrote this when Teale was 5 years old and it was published in our local newspaper. The responses I received from this simple article were really remarkable. It was not the friends and family that supported my editorial that struck me as much as the complete strangers. Strangers looked up my name and called me just to thank me and I received personal notes that I treasure to this day. My niece told me her teacher used my editorial as a lesson in school, not knowing she was related to me. I even had people hear me in public call out my daughter's unusual name and then ask me if that was me who wrote the editorial. They then would share their personal stories about similar situations.  A nephew of mine used the editorial to write a paper and he educated more kids. As I said I was touched by all the attention it got. When I wrote this article I still felt like our family was an island. We were floating among you typical families and trying to find our continent to land on. It was lonely back then, sure I had understanding people around me, but my heart ached for a place to really belong. Today, the special education world is my home. I fight for rights, try to improve lives and get involved with families that are much like mine. I have a huge network of support and loving people who understand this life also. Some of us joke that we would never had met without these strange connections and that, no offense, I wish we hadn't. As the years have progressed in my daughter's life I have immersed myself more into the special education world and I have also seen changes in society. Sure we still get stares and rude comments, but I think in general, society is getting used to our families out there in the world. Maybe it is because as my daughter ages her disabilities are more transparent. Her voice is obviously different, she walks with an odd gait and she holds her one arm in an unusual way. Her moments of frustration and anger are still looked upon by the average stranger with a double take and you can often see the wheels turning as they try to sum her up. When anyone stares at her when she is not in a good place it certainly will be obvious that something is different. Most likely you will get the snarl look or a growl, maybe a scream or a raspberry that will make you want to stare more or quickly look away. Often people don't know what to do when she is melting down and I will confess, neither do I. What worked one time may never work again, so I'm constantly on my toes, coming up with new strategies to help Teale with her feelings. She has grown bigger than me and I am at risk now if the meltdowns turn into attacks toward me. She never shows these violent outbursts at school or even at respite, she saves them for where she is safest, at home. My children are good at reading Teale and getting out of her way if she seems dangerous. We have taught them that Teale is our responsibility and to call for help or get away if you feel threatened. We have several rooms with locks, so her siblings can go to a safe place. Life with Teale is certainly not typical and it is almost embarrassing our kids have learned these strategies at such young ages, but no one gave us a book on raising Teale. She grows and some things improve, while some things seem more difficult. This past winter we took her to her brother's basketball game. She melted down very fast and very violently, hitting Mark and I, screaming and shooting dirty looks and raspberries at all who dared to look her way. I was most embarrassed for our son, who had to endure this in front of many peers. Teale would not leave and as luck would have it, my husband, Mark had sprained his leg badly, so he could not pick up her 150 plus pounds and get out of the building. We negotiated with her and finally she left with me. When my son got home from his game I apologized and asked him if he was ok. His response "I was worried and embarrassed at first, but then one of the guys came up to me and said, Don't worry about it, we understand, let it go man." Other boys then chimed in and instead of Beau being embarrassed, suddenly he felt cared for. Those boys learned and taught much that day and I will always hold that story close to my heart.

1 comment:

  1. This one brought tears to my eyes. Leah has some wonderful friends and it's good to know that she is not the only one. Our kids have chosen friends well.