All Sides Now: There is no easy way to end this series of posts on parenting adult special needs. Do I summarize, itemize, measure growth, anticipate challenge or celebrate accomplishment? Do I thank and applaud or alert and inform? Shouldn’t I be doing all of that? My hope is that I have done all of that during these twelve months of posting on our journey.
This is a story about one young lady who turned twenty-one in November of 2010 and aged out of her Connecticut school district that following June 2011, and her family as we made our way out of the child’s special needs world into the world of adult special needs, a day at a time. In the twelve months since these posts began, a thriving adulthood has been constructed for our daughter by a team who monitors all aspects of her daily life – a dedicated team who has seen our daughter from all sides now.
Never Static: And even as I try to summarize a year of effort, this team is busily at work improving on the model they constructed: new vocational settings are being screened for better hands-on opportunities and training; a book club component, suggested by our daughter, is scheduled to debut this coming week at the DSO (Day Services Option); a trial of a small dosage of the medication Focalin, to aid focus and increase job success, will be inaugurated next week with careful monitoring, this after extensive blood work measuring thyroid and other functions came back normal; the first weekend away as a CRS (apartment-mates and two staff) is scheduled in April to Mystic, CT. This is the proverbial “work in progress” model with no static “mission accomplished” endgame.
Increasing Independence: Adjustments and fine-tuning hopefully will remain a critical component of programming in response to our daughter’s maturing in the decades ahead. The goal of increased independence is a staple of the special needs world and spelled out in document after document over the two plus decades of our daughter’s life. But there are areas of dependency that may not change, ever. And by definition that is the meaning of the term “special needs” or “disabled”. Our daughter does not wake up to the fire alarm – ever. And, when alerted by staff to follow the protocol for the fire drill, she is resistant. Our daughter still looks at the ground when she walks through a trafficked area. How many years might it take for her eyes to scan properly and her brain to decide safety accurately? For a fire alarm to awaken her in time to follow the exit plan out of the building? Increasing independence is a goal but safety is the undisputed necessity for our daughter’s future.
A Good Decision That Hurt: It was only a year ago this March during spring break from her boarding school that our daughter and I had a conversation about the decision to end her post secondary education a year earlier than her peers and bring her back to her home state. We were in the car and she burst into angry tears telling me in no uncertain terms that it wasn’t fair, and it wasn’t her decision and it wasn’t right that we didn’t consult her when making the final decision. I was waiting for this moment.
Emotion Trumps Preparation: The last year and a half leading up to this discharge of feeling, our daughter visited residential settings, attended interviews with potential service agencies, raising questions about where do the kids live and what activities do they participate in. She met several times with her case manager, and had regular visits with her school guidance counselor to discuss her feelings about leaving school and moving toward “independent” adulthood. She even participated, at her request, in a support group whose purpose was to share feelings about leaving school in June. Since the Thanksgiving before this, she had been spending time with her future apartment-mate whenever both girls were home from their boarding schools, the families becoming acquainted as well. In fact, she used the phrase over and over with anyone who asked what her future plans were, that she was coming back to Connecticut because her parents could not “pay out of pocket” to send her for the third and final year of her post secondary program, Grow. And she understood what was happening.
The Reality of Loss: But all the preparation in the world is never enough to trump the reality of loss and the fear of change. Frankly, I was glad to see and hear her powerful expression of pain and outrage. It reminded me of when her brother was two and one half and attending sibling class at the local hospital to “prepare” him for brotherhood. Well, it didn’t prepare him, no matter how many dolls he held or how much teachers claimed he enjoyed the baby room at his twice a week daycare. When the real thing arrived, he was just as happy to leave her at the hospital or drop her off in the garbage on the way out, both feelings he expressed to mom and dad. Reality of change or loss, no matter how much we think we are ready for it, can sneak up on the best of us.
I agreed with our daughter on all counts, twisting in my own emotional tangle of guilt while simultaneously celebrating her clarity and honest expression of the injustice of it all. I was sincere in my expression of empathy for her pain, and together we came up with a plan to meet with her case manager and the director of her future ABD program so that she could tell them some of her feelings. And we did that the next day, which helped mightily to further forge a bond of trust between her and them.
The Wheels Were Rolling: And though I felt almost cruel, the wheels were rolling forward because they had to, timing was critical to allow our daughter to receive the optimal funding for residential support and if we waited another six months, even that opportunity, and this has proven to be the case, would be threatened. She was twenty-one and on July 1, 2011 she would officially “age out” of her school district and be just another special needs adult who was seeking housing and funding for services. At that moment she was at the top of the list for priority housing because she was returning to her home state after five years at boarding school, but six months later, she would tumble down the list to who knows where. This was the indisputable fact that ordered all my thinking, no matter what other longings were in play.
Transition To Adulthood: I have no regrets here. Our family received excellent advice and that grounded us in our determination to make this move happen immediately. What has strengthened that feeling is seeing how quickly our daughter has adjusted to her new life. As we had hoped, our daughter’s transition has been remarkably smooth because fundamentally her new life is more similar than different from her previous life.
The Plan Worked: Attending boarding school for five years, beginning at age sixteen, (the last two years for the post-secondary/vocational component), and prior to that four summers of sleep-away camp, begun at age thirteen, were preparation for this moment. All this planning that went into easing our daughter into “independent living” over the eight years, seems to have paid off. The structure provided by Ability Beyond Disability with 24/7 staffing alternating schedules, the daily programs, non-negotiable routines and residential life with peers, replicated the atmosphere and expectations of boarding school life. Both our daughter and her apartment-mate and their families had experienced the wrenching jolt and adjustment of separation years earlier so that trauma, quite frankly, was long past. And the young ladies have experienced only two bouts of significant interpersonal conflict so far, the first marking the end of the “honeymoon phase” this past Fall and lasting twelve hideous days, and the most recent, a mere two days last week. Their mutual compatibility is partly because they actually find living with just one other female a stark and relieving contrast to the “drama in the dorm” atmosphere of multiple females inhabiting one “home” that marked their boarding school years. This cohabiting, in contrast, is a “peace” of cake.
The Surprise: Our daughter’s adjustment to her new life has been swift and relatively smooth. She has never complained about returning to Connecticut since that Spring Break car ride a year ago. She has never asked to return to her boarding school though at times she speaks of missing her friends or the Cape. When questioned by family or friends on how she feels living in Ridgefield, Connecticut her answer is immediate and consistent “ I love it.” No, it is not our daughter who had a difficult adjustment to the new life. It was her mom.
Part 2: Tomorrow I will post on mom’s adjustment, one that was not so smooth. A journey for which I was not prepared, and one that I hope to make easier in some ways for others, simply by relating my own tale. Stay tuned and let me know what you think.
©Jill Edelman, M.S.W., L.C.S.W. 2012