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Jul
21
Written by:
jmeddy
7/21/2012 2:01 PM
By Stephen English
Over thirty years ago, I returned from Boston with a curly-topped, redheaded toddler, Jason, and our journey began. Jason had received a poor prognosis from learned medical professionals. The soothsayers predicted he would soon stop developing, never really “speak” and definitely would never read or write. I quite frankly thought they were “nuts.” I saw a child who was curious and babbling non-stop. He was speaking, but no one understood his language or took the time to listen to him. Heavy medications for suspected seizures left him in a fog. Later, I realized he’d never had a documented seizure, and I came to believe that the medications had affected his development. As I held his hand for the first time he was “mine,” I recited what would become our mantra, “You used to be a sick baby and now you are well.”
As we began our life together, even with my rose colored glasses of optimism I was still apprehensive about the other shoe dropping … those setbacks parents of "children who are different" fear. One vivid memory stands out for me. We went walking during our first week together, and he found huge boulder along our path. Like most little boys he HAD to climb it. He fell and cried; he couldn’t do it. I picked him up, consoled him and kissed his “boo-boos.” When I put him down, he went back to the rock to climb again, failed and cried repeatedly. My fear: “ Oh my gosh, he knows he can’t do it.” Wrong Dad. With determination, many tears and bruises, he kept attempting to climb until he won. “ You used to be a sick baby and now you are well,” he reminded me.
When I adopted him, I promised Jason and myself, I would parent in ways to help him be as independent as possible. Jason encountered and conquered many "boulders" during childhood, adolescence and young-adulthood. By 2008, Jason was living in a first floor apartment of our two flat building where my partner, Ryan and I, lived on the second floor. We all pretended he was independent, but he wasn’t. I knew that he needed more independence so we could see his strengths, needs and problem solving abilities, but I was terrified. My dear, loving husband gently and firmly reminded me that Jason and I both needed our independence.
At that time, Ryan and I were considering the purchase of an existing flower and gift shop in Beverly, far from our north side home. Increasing gang violence in our Albany Park neighborhood that culminated in a gang shooting in our front yard sealed the deal. Ryan and I were moving to Beverly, and Jason was not moving with us. I was filled with nauseating terror and guilt. Jason was fearful and angry, but the bird had to fly. He was thirty years old, his wings worked fine and they would carry him over the next and biggest boulder.
I had heard about Jane Doyle and Center for Independent Futures (CIF). I knew Evanston was a good place – an accessible and “walkable” community. But Evanston was not a hop, skip and a jump from Beverly. We visited CIF, met staff and chatted about their philosophy and services. Jason saw one of CIF’s housing options and told me in explicit terms his attitude about living with other people. He dug in his heals and pushed all my guilt buttons. He wanted to live alone, but I thought he couldn’t initially … what if … what if .. what if .. I feared this would never work. Boulder Dad!
An inspiration came from Jason’s remarks during our first visit when he pointed to the Main Street El train and said, “ Where the #@%& is the elevator for the disabled people in wheelchairs and with crutches? I thought people were rich up here in Evanston.” (Kudos to Access Living Advocacy training!) I convinced Jason that CIF and their participants needed him; that the reason he should be in Evanston was to teach people about disability rights!
Once the decision to move to Evanston was reached, Jason wondered how he would get to Beverly to visit. I explained that he would take the Metra Train and when he said he didn’t know how, I told him we would learn. I reminded him of the day he came home from school on his little yellow school bus and declared that he was not taking the bus to school anymore because he wanted to take CTA. As usual, father terror arose. Later, the laughing bus driver reported to me that Jason had told the cranky, elderly aide to not touch him again or he would sue her. Jason was motivated and learned to ride the CTA system within three days. I was confident he could learn to take the Metra.
There were many rough spots. One of the hardest was dealing with how often Jason visited us in Beverly. Initially he came down every weekend but this meant he was not building relationships in Evanston. Dear Ryan pointed out that Jason was still not independent. Then Sean, Jason’s first CIF tutor, gave him some practical advice. He compared Jason’s situation to his own life transition as a graduated college student starting life away from his family. He related that he, like Jason, would never be independent if they both returned home each week. Jason stopped visiting every weekend and began making friends.
Jason would have never been able to accomplish his hopes and dreams for independence without the staff of Center for Independent Futures. There comes a point as parents when we have to give our children up to the world to see how they cope and problem solve. Too often we see our disabled adult children as “children” and they are not. They are adults. They have to figure out how to navigate the world. We will not be around forever and our adult children need to depend upon others. I knew I’d have to watch Jason fail as he began his journey toward independence. However, with the teaching, practical support and preparation in life skills provided by CIF, Jason never failed at anything. The other shoe never dropped.
Today Jason lives alone and meets with a CIF tutor twice a week. He volunteers three or more times a week at Ten Thousand Villages in Evanston. He does all is grocery shopping independently, traveling by cab to Aldi because he thinks Dominick and Jewel are too expensive. The boy who would never read has two books of poetry thanks to the inspiration and continued support of Barry Siegal, a CIF Tutor and poet who leads a monthly creative writing group, heARTwords, for CIF participants. Jason is a funny, social, happy and independent man.
The greatest example of Jason’s independence and self-confidence nurtured by CIF staff was an incident that occurred two years ago. On Mother’s Day in 2010, I found and contacted Jason’s biological parents, now divorced, and his four adult sisters. Phone calls and letters opened a glorious, loving relationship with them. As these relationships bloomed, we kept trying to figure out a time to fly to meet his father in Florida and mother and sisters in Massachusetts. This was the beginning of our business’ most hectic season. Jason called one day to say he wanted to meet his biological father and I reminded him I was trying to find a date for us. He interrupted, “ No, Dad. I AM going to meet my father!” My father terror and pride arose. What happened next was amazing. He flew to a man he’d never met and spent a week. His adventure included flying in his biological father’s two-seat plane to Florida to meet his grandmother and 103-year-old great grandmother. Six weeks later he flew alone to Boston to meet his mother and sisters. He now returns to visit them every year.
Jason does not need me most of the time and that’s the way it is suppose to be. I may have repaired his wings but Center for Independent Futures gave him the wind to fly. We are eternally grateful and all the boulders have crushed into pebbles under his feet.
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