Impact Feature Issue on Parenting Teens and Young Adults with Disabilities

My back is a little stiff this morning. Sleeping on my daughter Mikelle’s couch has that effect. It has been a week since I have slept in my own bed and I am not sure when I will lay my head once again on my own pillow.

The calendar seems to have picked up the electronic pace of the digital world as Mikelle leaps towards her 23rd birthday. Her life moves forward at 21st century speed while her systems of support crawl out of the 20th century.

Mikelle graduated in 2004 as an outstanding senior at East High School in Denver, Colorado. Mikelle, her team at school and I worked hard to develop a solid transition plan to follow graduation. We had our challenges, particularly with having five vocational rehabilitation counselors in three years while that system was going through major changes in our state. All the counselors had good intentions, but each was dancing the slow dance of catch-up. And, everyone had to catch the vision Mikelle had for her life, which was to not just have a typical life, but an exceptional one – one that was based on prosperity, not poverty. Too many times we accept poverty as an implied goal during transition. I can’t say I have ever seen a goal on a transition plan that addresses getting people out of poverty. It is assumed – wrongly – that you have to be poor to get certain services. With Social Security work incentives like PASS Plans and strategies for developing small businesses, poverty no longer needs to be assumed.

My expectation for Mikelle, despite the limitations of significant cerebral palsy, and the use of a wheelchair and augmentative communication, is that she has to earn a living and could and should get the good stuff in life. Fortunately, she assumes that as well.

During school she was fully integrated into regular classrooms, and quickly developed friendships with other students. By the time Mikelle graduated she had had four jobs, two of them paying at least $100 per hour and two of them paying well over minimum wage. The high-paying jobs were contract jobs, but still set the expectation that she could earn good money. The others were summer jobs. We used extended school-year dollars in partnership with some limited support from vocational rehabilitation to pay for a job coach during the summer. Summer job development was a cooperative venture between friends, family, and the school.

To have a chance at accomplishing real transition into adulthood – the kind where young adults actually own their own lives – requires vision, passion, focus, and most assuredly persistence. And, the knowledge that your transition plans will most likely have to be changed and modified along the way – many times. Sleeping on the couch is how my nights are spent at the moment. It reflects some of those changes and modifications that happen along the way. In reality, both Mikelle and I have needed a Plan B, Plan C, and now Plan D. We both have had to make adjustments and gain new insights into ourselves and the realities of successful transition.

One of Mikelle’s goals on her transition plan was to live on her own. Talk about persistence; she reminded us constantly that she was determined to move out. We all thought it would be when she was 23 or 24 years old and that we would have a couple of years to make that happen. We signed her up for the Section 8 housing waiting list, figuring it would take several years, if not many years for her to obtain a voucher. Her voucher came up suddenly and we had 60 days to find her an apartment. We found her a two-bedroom apartment so close to my home she can see it from her apartment window, plus it has a great view of downtown Denver. She has two bedrooms so she can have a roommate to provide overnight support and fill in a few hours a week.

I placed an ad on Craig’s List, and we ended up interviewing five young women for the role of support person. We selected one and did reference checks, including a criminal background check. I stayed overnight for a week making sure they were comfortable, only to have it quickly become apparent that the arrangement was not going to work. Hence, the return to the couch. Mikelle would not even consider moving back home – I don’t have cable!

So, what have we learned? As you let go and transition, have solid agreement between roommates and staff about expectations – they need to be written together and signed by all parties. No one is going to parent like you do, but they can bring new perspectives and learning experiences even if it looks like it failed. And be persistent and know that for your child’s life to change, yours has to change as well. This way you will avoid being roadkill on the road to transition.