Let me tell you about my 22-year-old daughter, Stephanie. She has so many strengths and abilities. Among her strengths is her love of reading. And when you talk to her one on one, she reveals a depth of intelligence and wit.
However she also carries a number of diagnostic labels and conditions. These latter attributes have us concerned about her future. They challenge our hopes and our plans for her to live a full, productive life. How can we plan for the eventual time when we will no longer be around to support her? We have had to change our definition of “independence” for her.
Because Steph is a twin, we have had a built-in “control” to measure her developmental growth throughout the years. We were alert to her comparative delays at meeting milestones, so early intervention was always a part of the game plan.
We started with speech therapy and occupational therapy in preschool and continued on with special ed classrooms and eventually private schools for “Children Who Learn Differently." Steph always tested and attained intelligence scores generally within the normal, even sometimes the high normal, range. But there were curious unexplained gaps and disabilities. In many ways she typified the perfect SWAN, that is a child suffering from the “Syndrome Without A Name.”
Despite some trials and stumbling blocks, Steph benefited from the academic and social supports available at her high school. She participated on the girl’s volleyball team, was a model in a student fashion show and volunteered at a local animal shelter. We were very proud of her successes and happy when she was accepted to a small liberal arts college that had a very good program of academic supports for students with special needs.
Unfortunately, we soon found out the difference between academic supports that the college did have and the social and emotional supports that it lacked. It was also at college where the more disabling aspects of Stephanie’s Asperger’s Syndrome came to the forefront. Steph was unable to reach out to other students or build a community of friends from her classes. She soon felt isolated and depressed. After a number of trips up to school to give her parental support and encouragement, it became clear that college was not a good fit for her at that time.
As much as we love Stephanie and want to shelter her and provide for her, we also know how important it is for her to grow and develop away from us. As a mother, I have had to come to terms with my urge to overprotect her. So, even though one path did not work out as we had hoped, an independent life — at least one as independent as she is capable of having — is still an important goal we have for her.
Enter the Philadelphia Independence Network. Within the framework of PIN and with the backing of JEVS Human Services’ programs, Stephanie has been able to live away from home — with supports. For a time, she shared an apartment in Narberth.
She moved back home while completing a course in building maintenance at Orleans Technical Institute and searching for a job in that field. She is now working full-time as a maintenance tech in the apartment complexes of a local university. Another milestone has been achieved. Her employer has complimented her work ethic and skills.
Even though Steph has been living at home, she has maintained her friendships and attended PIN events and activities. She continues to benefit from the life-skills lessons that the network offers. So, we are again looking for an apartment for her in Narberth where her PIN friends live.
A major factor in Stephanie’s current successes is PIN's program director, Marnisha Henry. She serves as a compassionate listener and, at appropriate times, a motivational coach. It is through her knowledge and insight into each PIN member that she can keep the lines of communication open among the participants, help manage the group dynamics and generate a sense of a community among them. This is so important for someone with Steph’s disabilities.
So, yes, we have modified our definition of independence to include the necessary supports that PIN can provide. We can now see a way for Stephanie to mature and grow up away from the insular cocoon of home and be as independent as she can be.
Linda Roth directs the Jewish Information and Referral Service run by the local Federation. This piece, originally written for the PIN newsletter, has been updated and edited for the Exponent.