The Red Couch Is A Year Old: The Ability Beyond Disability services manager, mover and shaker of our daughter’s residential component, invited the two moms and the residential staff to lunch to mark a year since the ladies moved into their cozy duplex/CRS (Continuous Residential Support) on August 1 in Ridgefield, Connecticut. The atmosphere and conversation were strikingly different from group exchanges twelve months prior. The three staff and two moms had literally weathered two big power outages, “dramas in the duplex”, a couple of staffing changes and DDS (Department of Developmental Services) challenges to get to the calm and conviviality of the grilled salmon over lettuce luncheon upon which most of us dined. In fact, we were more than halfway through our time together before we actually focused on the two young ladies whose special needs adulthood brought us all together.

Slimming Down and Growing Up: A year ago both moms were in the infancy of building trust in this ABD team that is the vital force and anchor of our girls’ adult lives today. We spoke of that process of trust building at the luncheon. Though the staff are sensitive to the journey, only the other mother and I know how far back trusting challenges date; from the “experts” who we were told to trust, but actually disappointed and hurt us; to the bruises from encounters with school systems and the occasional personal friend whose attitude reflected ignorance or indifference; to the well-meaning souls who just didn’t have sufficient knowledge or expertise. Trust is earned in all relationships, no matter the reputation of the physician, the teacher or the potential spouse. Though our family’s experience was far more abundant in trustworthy souls, still the gift of trust is handed out very carefully and selectively as it should be. Only with time and observation of the passionate dedication to our daughter’s welfare and happiness and by witnessing the expertise and skill of the ABD team was I able to suspend my vigilance and lessen my grip. And what do I see now, looking at my daughter twelve months into this new life under their care? I see a powerful petite (and slimmer) package of self-confidence, greater focus and accomplishment, pride and self-respect, with more self-control over emotions and empathy towards others. Her apartment-mate, too, matches her in all these growth and slimming down areas.

And the red couch? How has it fared? Well it has taken a teeny bit of a beating but with our goof proof plan guarantee, one day the staff will pull out the contract from Bob’s Discount Furniture Stores, read the small print and put the call in to report on the chaffed edges of the red leather blend cushions that our daughter has scuffed while happily watching TV in the cozy living room and make arrangements for a replacement. Scuffed edges are a small price to pay for days of cozy comfort, and as the only casualty of the twelve-month cohabitation, that is pretty darn good.

How Long Does Bliss Last? We are all at the mercy of events, not just special needs adults. No life is static no matter what level of “bliss” it may have attained. Fate, family, funding, illness, weather, politics domestic and global, planetary alignments, all can bounce and trounce our daily lives in a nano second. Yes, I know that. But there is something quite specific about a life funded by the government that is (understandably so) constantly being reviewed to assess “need” with the intent to reduce funding aspects of that life whenever possible. And so DDS is in the process of reviewing the ladies’ life together with an eye to proving less need. ABD is our ally in this challenge. What is so interesting/ironic is that “doing well” – as in thriving in their new lives – signals not its true meaning, that their new life is working well. No it translates into something far less intuitive – that the ladies don’t need that life anymore. How long will bliss last? I am prepared at all times to scrutinize signs of future trends to locate the optimal existence for our special needs adult daughter who is so worthy, and gives back to society in so many ways. And as she improves her vocational skills and acquires new agility with the outside world, who knows what might be possible. But for now, the changes that would signal a profound shift in need, are nowhere in sight. Will DDS see the obvious too? I think so.

My Book: On another note, my book on Parenting Adult Special Needs: How Did We Get Here? One Day At A Time (tentative title) will be out early this fall available both as an e-book and in print. The book, which comprises the collected posts that covered the period prior to our daughter’s aging out through several months into her new life, is illustrated with our daughter’s collages and will have a list of resources. The book also weaves in the twenty-one years of preparation leading to the successful launch of our daughter’s adult special needs life to provide a glimpse into the process for other families who are on this journey. Stay tuned for more information as we draw closer to publication.

©Jill Edelman, M.S.W., L.C.S.W. 2012