March 30, 2011: In a little more than two weeks it will be a year since the first post on Parenting Adult Special Needs: One Day At A Time. Last week our daughter’s entire team of staff members from ABD (Ability Beyond Disability) and her DDS (Connecticut Department of Developmental Services) case manager sat down at a conference table with our daughter and her parents to review the last seven months of residential, Day Service Options and vocational placement. (The meeting was originally planned for the prior week but a brief snowstorm caused a cancellation.) The meeting began with our daughter presenting her views on the last months, including likes and dislikes. She was unequivocally positive about her apartment-mate and staff, their many outings, which included going to the Museum of Natural History, the Bronx Zoo and an upcoming overnight trip to Mystic, Connecticut. Regarding her vocational life, she was less thrilled with the cleaning chores that accompany her volunteer work at ROAR and The Complete Cat Clinic. Following our daughter’s presentation, staff and parents engaged in a review of vocational options, residential strategies, and day services activities, exploring with our daughter her preferences for future programming. A thick packet of write-ups from each of the coordinators of the various groups was handed to my husband and to me. Later I read through the packet, which revealed that staff had a good understanding of our daughter’s workings.
Coming Up: Residential and vocational staff have come to know our daughter well. Based on their knowledge of her strengths, staff is looking at job settings that tap into her substantial social skills, as well as her love of animals. Since that meeting a possibility has been uncovered at an animal daycare that might afford her more hands on time with the animals and more social interaction with customers than is available at her current sites. She is also invited to assist in leading a tour of potential client families visiting the ABD headquarters next month. In addition, she and her apartment-mate will greet guests at the ABD Gala on April 28th, and will be staying for the evening. Our daughter is familiar with formal fundraising galas from her years at Riverview School, which hosts hundreds of people under a gorgeous tent on the campus. She is so savvy that she asked if the ABD Gala was having a silent auction. (They are.) Nothing passes this girl’s notice.
Book Club: What is also clear is what is hard for our daughter. Especially at Day Service Options, which is the social group she attends two days a week. During the winter members often bowled, played board games and cards, all activities that are very hard for our daughter. My husband and I offered ideas such as having a group that views films together, followed by an informal discussion, something our daughter is skilled at, critiquing theater and film, talking about characters and plot. When asked by her father what sort of programming she would like to do with her peers, she said “A book club.” What a wonderful idea. She reads well and particularly enjoys biographies. There is a series of fourth and fifth grade level readers that include the life stories of historical figures ranging from George Washington and Abraham Lincoln to Helen Keller and Rosa Parks. Our daughter has read many of them and can be a member in a lively discussion which could incorporate the very world around them. Living in a colonial area where a revolutionary encampment took place (Putnam Park), field trips could be taken by the DSO group based on their readings. Helen Keller lived for some time in the town of Easton, which is close by. And Mark Twain, aka Samuel Clemens, built a house and resided in our daughter’s hometown of Redding two years before his demise and founded the town library, The Mark Twain Library.
Future Education: Our daughter is clear that she would like to continue her formal education in some format and staff have agreed to look for or create learning possibilities. Their understanding of her drive to learn and their wish to help her accomplish this is a hopeful sign. Not only is our daughter maturing, but this agency as well is reaching out and expanding to meet the needs of its new “age-outs” in impressive ways.
Building Trust: Starting last Spring, our family has been dependent on ABD to create a world of safety and stimulation for our daughter. We are almost a year into signing over responsibility for so much of our daughter’s future to them. This has been hard for me as her mother. Trust takes time to build and though our daughter felt comfortable almost immediately, with transient moments of dissatisfaction, for her mother this was a slower process. This past week I have reviewed my own journey and can say that trust, though a living thing and open to change, has been established. The ABD staff understands how difficult it is for families to “let go” when for decades they have been the lynch pin that holds their special needs child’s life together. There is no question that they have earned our trust through their professional and very personal care and dedication to our daughter. And though we have given others responsibility for the care and safety of our daughter before, both at sleep away camp and boarding school, never was it so inclusive and “legalized” and never was she so close to home that the ambiguities of our roles were a source of confusion. Distance adds a kind of clarity that proximity does not offer.
The End Of The Era Of Transition: My next post, on Monday, March Twenty Sixth, will be the last for this series of “Parenting Special Needs: One Day At A Time.” In the meantime, I hope that if anyone has thoughts they would like to share, please do so on the blog. All comments are welcomed. The transition from parenting a special needs child to an adult with special needs will continue but the first leg of the trip is certainly over. Thank you for accompanying us on it. And please check in on my final post in two weeks.
©Jill Edelman, M.S.W., L.C.S.W. 2012
Glad for you that trusting your daughters extended “family” has evolved over the past year. Is there anything more important than trusting your kids are safe? Trust is big. In two weeks, for me too a one year milestone, built around trust.
Merci, A bientot!
April 1, one year and the red couch(es). A year of transition and hard work, building foundations of trust when someone or something is precious to us takes time and courage. Avec Plaisir. Bon Voyage.
Rachel Loeb says
What does it mean, you are giving them full legal responsibility? Is this part of the process? How long does it last? This takes so much strength on everyone’s part, it’s amazing to hear about.
Rachel, when our daughter turned twenty one she became, in a sense, a ward of the state. We remain her guardians but the state of Connecticut supports her, along with the Federal government, through Social Security, Medicare and other entitlements. Ability Beyond Disability is an agency that we have hired and signed contracts with (the legalized part) to allow them to receive her funding allocations to staff her team, her vocational and social and residential supports. Though we retain final word on all significant decisions, she is their client. This allows our daughter to receive the support, supervision and training that she will need for the future. Her brother will be her guardian with help from some cousins after we are gone. Thank you for asking.