Impact Feature Issue on Supporting the Social Well-Being of Children and Youth with Disabilities
"Mom and Dad… I Sure Could Use More of This!"
When Jennifer was born, we were double novices: new to parenting, and new to the world of dealing with a child with special needs. There was a lot of learning before us, especially in the realm of nurturing a child with acute cerebral palsy.
Despite her profound physical and intellectual impairments, Jennifer was a robust little girl full of life, and given great big social butterfly wings. She loved to be out and about, she loved people, road trips, and games. These desires emerged slowly at first, but were catalyzed when she reached preschool age.
When she began attending the Western Pennsylvania School for Blind Children in Pittsburgh, her extremely gifted and patient teacher endured about 6 months of screaming from Jennifer due to serious esophagitis, yet successfully directed her into more participatory games and activities until Jen acclimated. Jen then fully anticipated and expected such wonderful learning experiences. Her "Pilgrim" class crossed the Atlantic in the hallway on the Mayflower, with a log-shaped foam roll under the "deck" to simulate rocking on the ocean, and a blow dryer and some sprayed water to season the sailors. In the middle of that hapless crew was our young beaming daughter, communicating emphatically with her smile, "Mom and Dad, I sure could use more of this!" We picked up on this cue, and from then on Jen's world involved much more outdoor activity. Recreation included simple things like taking walks, and more extreme activities like riding on a jet ski or "tubing" behind the boat with dad.
When we moved to New York, she was able to attend the special education program at a local school in Ithaca, and remained there from ages 10 to 21. The school was not quite as resource rich as her Pittsburgh school had been (we especially missed the therapy pool). But her teachers and staff were creative in their programming, cared for the children, and tried hard to make up for some of the shortcomings of the physical plant. Jen loved putting on musicals, trips to the bowling alley and the local swimming pool, and of course the proverbial shopping mall excursion. Her school was a rich social environment, and she looked forward to the engagement with great zeal every day. She even participated in an epic class trip back to her hometown of Pittsburgh.
At home, a weekly or biweekly trip to church was always a moment of joy for Jen. And any event out into the community was truly "special." Despite the great effort that was required to prepare for each outing or road trip, Jennifer loved to go. Her sibs would be crashed in the backseat, but she was wide-eyed and checking out the landscape at every turn. Trips to her grandparents' cottage included a special treat of fishing; Jen always seem to catch something when no one else could (I think she had a secret contract with the bluegills). But these trips also included far too many sojourns to the radiology department when she lost her jejunal feeding tube (indeed, there is always some risk to getting out of the house).
Transition to adulthood was a shock to Jen's social orientation. Two separate interventions made a big difference. First, her excellent medical service coordinator suggested a program set-up through the New York Medicaid waiver called "self-determination." This enabled us to set-up a program which freed enough resources to provide a day worker to take Jennifer out into the community with her dedicated nurse, along with some additional perks like massage therapy. But it was a therapeutic recreation class at Ithaca College that really came to the rescue for Jen. Young women in the class – students who were Jen's peers chronologically – would take her out into the community to football games, basketball games, bowling, putt putt golf, the local animal shelter, the park, scrapbooking, a bistro, and yes, the more than occasional shopping trip (as the photos here show). These outings kept Jen looking forward to each new day. For her it was the social relationships with these students who welcomed her into their circle that probably trumped the activities themselves.
For Jen, the presence of a few key people willing to take a risk on a new, and often challenging, relationship made all the difference. Sadly, it was in the middle of a semester when that therapeutic recreation class was in session that Jennifer suddenly died. But she died a spiritually, socially, and emotionally rich young woman.