Don’t hate on the hair. My family the 80′s
After watching the great video blog by Kurt and AC on the topic of special needs students HERE I was inspired to share some more thoughts on this topic from a slightly different point of view.
My Mom suspected that the pregnancy wasn’t quite right. She had chicken pox in her first trimester, but the doctors assured her everything would be fine. Courtney arrived in 1975 as was one of 7 recorded cases internationally to be born with Congenital Varicella Syndrome. There was nothing about her that should have survived. . Here’s a quick run down of how my sister entered the world several months early at less than 2 pounds: She was blind, had one disfigured leg, no feeling in her left hand, urinary and digestive tract problems and was mentally delayed. Yet, she was born a fighter and lived when the world said she should not survive. To her doctors, teachers, caretakers and my parents she was a phenom. To me she was baby sister.
I want to contemplate for a moment if we had entered your youth group. She would have been a Freshman when I was Senior. What would you have done?
Here is what you would have seen from the outside looking in:
My Sister:
Here comes the sweet, vibrant kid in the wheel chair. She was the outgoing one. She loved Anime and romantic comedies. She was obsessed with country music. However, upon meeting her you would not have immediately caught on that Courtney was developmentally delayed. Maybe you would see a girl who was a little immature for her age. Then there were her medical challenges. Her electric chair was huge and cumbersome. She couldn’t see you, except out of the corner of her right eye. Her left hand couldn’t grasp anything. Someone, a nurse, a parent or myself had to take her to the bathroom to deal with tubes and bags.
Me:
Then you would meet the highly overachieving perfectionist sister. I loved my sister deeply, but inside I struggled. I grappled that I felt like I had to make up for what she could never be. I wrestled with the injustice of both of our situations in life. All Courtney wanted was to be a “regular” kid like me. I always knew the attention my sister received was out necessity, yet it still hurt. I felt left out. I felt never good enough for anyone, because I was not born the anything “case” in the world. You would not have ever guessed any of it. At 17 I was entirely wonderful at keeping all adults at arms length. If I was smart enough, performed well enough, and articulate enough, then you would leave me alone. I was very, very good at maintaining my polish.
My Parents:
Enter the parents. I read a statistic recently that 80-90% of parents with a disabled child end up divorced. By some insane miracle my parents have reached beyond 40 years of marriage. However, the pressure of living like today might just be the day that your child dies wears on you. My sister had numerous near death hospitalizations. Her leg was amputated at 2. Her eye was removed in her teen years and replaced with a glass one. All my parents did was give up themselves until they became a shadow of who they were. They were physically, emotionally and spiritually exhausted all the time. However, what you saw were these people who desperately wanted their daughter to belong. Could you give her a chance? Could you let her be a part of your youth group? I mean they were fighting for her in every other area of life. Church should be a place where they could rest and well you, youth worker, you just HAVE to love her.
You as the youth worker have no idea how to handle this. Larger churches have the luxury of separate ministries for “special needs” students. Smaller churches rarely have this luxury.
Who gets your attention? Who gets your compassion? Whose needs get met?
Stay “Tuned” on Monday for some practical thoughts on approach.