Swimmingly: In the last six weeks our daughter’s special needs adult life has been going along swimmingly, pun intended. She participated in Connecticut’s Special Olympics aquatic state finals, including spending two nights in a Southern Connecticut State University dormitory. She received a medal for her excellent riding (her “seat” as they call it) at the Pegasus Therapeutic Horse Show in May and attended a graduation party for a Riverview friend, which provided an opportunity to reunite with her Riverview chums. The setting was a lakeside cottage. She and her buddies leapt into the water, went for a boat ride, hugged each other, posed for photos, gossiped and joked — just like any group of former classmates reconnecting.
Parallel Parental Play: While our adult children schmoozed and swam, the parents, some strangers to each other, did what special needs parents do best: compared notes. Some of the parents whose children were still attending Riverview, not yet “aged-out” of their school districts, were in the throes of figuring out the next stage of life plans. Others whose children had graduated were describing current and future arrangements. The variety was noteworthy. The bulk of the families attending the party were from Massachusetts, which offers different options for housing than our state of Connecticut, something Massachusetts’ DDS calls “Specialized Housing.” One mother had just completed the requirements and received approval for just such housing for her daughter and four other female residents. She had worked very hard for this and was excited to share the news. Some of the classmates had remained on Cape Cod and were living and working with former staff from the school who had set up group homes in the larger Cape community.
There were a couple of families from Connecticut and one from New Hampshire, each with a slightly different game plan. Those families whose adult children did not qualify for services from their states’ Departments of Developmental Services have to seek elsewhere for funding, training and housing, which can be very difficult. As one mom put it so eloquently, in her state “Autism is not a disability,” and though her son is developmentally disabled in many areas except for his I.Q. score, he is slipping between the cracks, and heartbreakingly so.
Joyous Awareness and Pride: When my daughter and I left the party to drive the three and one half hours back to Connecticut, I felt joyous for her, for how much she has achieved in the twelve months since her graduation on June 12, 2011, when she said goodbye to her school years and returned to her home state to be an “adult.” There was no doubt at all that she felt proud of her achievements as well. She beamed and glowed when telling friends about her apartment and her “awesome” apartment-mate, where she lived and what she was doing. She also listened with interest to their answers to her questions about their new lives. She has matured tremendously in this last year and other parents described a similar process for their last year graduates as well. Each special needs adult at the party who was out of school for a year had a structured life, most living outside the parental home. All their families had been planning for this moment for years and so had avoided the regression that can take place when children return home for long periods, living without structure, slipping back into non-productive behaviors and habits. Though each family created a unique patchwork quilt of the special needs adult life for their child, you can be sure each one worked at it for years, worked hard and was motivated by fear, love, courage and determination. How did they get from there to here? Same way we all did. Working at it without relying on magic or miracles. Hard work and some luck too. For sure.
A Daughter’s Progress: A Follow Up: It is not clear if our daughter’s happiness, which is clearly on the increase, was aided by taking the drug Focalin but that seems to be the case. She has less anxiety in all situations and especially in areas where tasks and performance are required, or when transitioning from one activity or task to another, such as getting out the door in the morning to go to work. Both staff reports and parental observations share the same positive conclusions. She currently volunteers at three animal-related work settings: ROAR, the animal shelter in her town; The Complete Cat Clinic, a veterinary office; and Best Friends Pet Care, an animal daycare. Each setting is located in a different town but none further than a half hour from her apartment. She attends each setting with her life skills coach who provides direction and participates with her in completing the tasks. A fourth volunteer setting is in the works, and is also an animal-related placement.
Social and Residential Life: Her social life continues to expand including a new beau with date nights and telephone and texting exchanges. This relationship was the result of attending the aquatic practice classes for their Special Olympics participation. As with typical folks, doing what you like to do can produce just the right context for meeting a new love interest. The apartment-mate relationship just keeps getting better, which is partly the luck of a good match provided by DDS and partly the Ability Beyond Disability residential staff who know how to support each girl and the pair together. Their lives are filled with activities and a lot of exercise. Both have lost most of the extra bulk that dormitory living at their boarding schools had piled on over the years. In addition to swimming, walking on local tracks, working out on the treadmill at the Parks and Recreation and strolling to Main Street, their staff has cleverly managed to get a grant to install a Wii Fitness program in their apartment basement. These two young women will be at their bionic best, which relieves many health concerns that I had been experiencing in recent years watching our daughter’s weight gain and somewhat sedentary life in front of a computer screen, trying but helpless to impose the dietary changes that I thought were needed. Added to the workout equipment will be a crafts table where hopefully our daughter will be inspired to continue her awesome collage creations at an even greater pace. She is still a major movie buff and now it is hoped that she can create art or work out while indulging in her cinema passions rather than sitting on the red couch or at her desk, facing a screen.
Peace At Last: A new calm has come over the mother. Truly. And welcomed. I caught myself last weekend falling into some old traps and had to giggle at and celebrate that I managed to circumvent them. The first occurred when I picked up our daughter for our trip to New Hampshire. Once in the car, I felt a familiar worry, the typical spiral of anxiety: What if I get our daughter back so late, and she is all wound up and doesn’t go to sleep until midnight or so? And she has a date to go to the movies the next night. And the morning staff wakes her up at their usual time, early. Oh no.” I reached for my cell phone and placed a call to the apartment to ask the day staff to consider leaving a message for the overnight staff to let our daughter “sleep-in” as the expression goes. I heard my inner voice say, “don’t do this.” And when no one picked up immediately, I aborted the call. They know her and anyway let them figure it out.
Smell Test/Mayonnaise? My next test came when we returned to the apartment, and not that late either, at 9 P.M. The night staff was on, the very night staff that less than a year ago, I feared would not be awake enough or rested enough to take sufficient care of my daughter in an emergency in the middle of the night. She was very much awake, cleaning a bathroom, which she informed me that she wanted to do before the girls went to sleep because she knew they needed to “sleep-in” in the morning and she didn’t want to wake them with her cleaning sounds. See mom, they know daughter needs to sleep-in. You don’t have to tell them. Then we hauled out the leftover half a foot of my daughter’s Subway sandwich from the morning’s drive up to the party. I wasn’t sure if it were still good for her to eat for a late supper snack. Smelled fine to me. But rather than be the “decider” I turned to the young staffer and asked her what she thought. She asked “Does it have mayonnaise on it?” Yes. “Well” she said, “mayonnaise can be tricky. I don’t think she should eat it.” Wow. Test Number 2: let them decide. They are in charge and in fact, they are actually more careful than I would have been, and rightly so. The smell test is only as good as the smeller.
Trust and Proof: On July 1, 2012 it will be a year since I signed the contract with Ability Beyond Disability to take over being in charge of all aspects of our daughter’s day-to-day life, 24/7. And in that time I have established great trust in the agency’s professional skill and in the individual staff members who provide a panoply of services to our daughter every day. My comfort level is built upon ample proof from close-up observation. My trust is well-founded. As one mother kindly reminded on Saturday as I described to her and another mom the intensity of my anxiety during those months with its occasional unfortunate outcome, that I couldn’t have had that trust twelve months or even six months ago. That, as she said, is your job as a mom, to micro-manage every detail, to make sure that your child is safe and cared for. That’s how you got her here. Yup, all these moms know that feeling.
Raising A Toddler: Well, that daughter for now is safe and cared for. For now, I can relax my grip, and that is the first time in twenty-two years that I have experienced this sensation. Is that different from moms of typical kids? Yes and no. And the Yes part of that answer is that special needs child rearing is different and when you can release your grip, wow, for however long, the feeling is palpable. Remember what it feels like to parent a toddler? Parenting special needs can feel like that for years and years, potential danger everywhere, and don’t turn your back. You think that is an exaggeration? Ask one of those parents.
Thank you ABD as always for allowing me to feel this new calm. I notice that my attention issues are dissipating too, with the drop in my anxiety. And I am only on one drug, the drug of trust.
©Jill Edelman, M.S.W., L.C.S.W. 2012