Checking In: More than six weeks have gone by since I last posted on our daughter’s adult special needs life, and a busy six weeks indeed. During that time our twenty-two-year old daughter started a new volunteer job at Best Friends in Norwalk, an animal daycare and grooming center, and continued her two other vocational pursuits at The Complete Cat Clinic and ROAR. She began a trial a low dosage course of Focalin, a medication to enhance attention and focus, attended a staff’s wedding, greeted guests at her agency’s (Ability Beyond Disability) Gala, and won two medals at the Connecticut Special Olympics Trials in New Milford. She celebrated Passover at a family seder in New York City and a cousin’s Bat Mitzvah in Gaylordsville, CT and continued her Pegasus Therapeutic Riding Program and SPHERE and began Special Olympics aquatic practice sessions, all weekly activities.
The Ability Beyond Disability Day Services Options (DSO) launched their book club in response to our daughter’s suggestion. Their inaugural selection, I believe, is Beezus and Ramona, by Beverly Cleary. The DSO has expanded their weekly activities to include more springtime related events for their clients.
Not Just Doing, Growing Too: Does the gal sound busy enough? Yes and she is quite content too. The Focalin has increased her attention span, setting off a cycle of gains that include more success on the jobs by improving both her tolerance for frustration, her self-esteem and her mood. I was very wary of placing her on any medication after previous experiences, but I am grateful to the ABD staff for suggesting that we give the medication a trial. To my ear, when we chat on the phone, the Focalin clearly gives a boost to both how she articulates her thoughts and to her level of enthusiasm about the topics she shares with me. Clarity has improved as well, probably as she has more energy to put into her speech, so that I am not constantly saying “What?” which had provoked her annoyance during our phone chats. To date there are no medication crashes or side effects. So far so good. Fingers crossed.
Gratefully Stepped Back: But she is not just busy, she is growing too. Her relationship with her apartment-mate has deepened, so much so that when they have drama in the dorm/apartment blips they are short lived. She continues all her Internet hobbies, social networking, searching history sites and plowing through movies on war and love. As a family we have settled into a twice-weekly routine of visits, sometimes with both parents, sometimes just one of us, for lunch, an outing or a family event. I have gratefully stepped back to allow the staff the full reach of their day-to-day responsibilities, trusting in their expertise and judgment, with a newfound sense of security that they know her well and don’t need my constant input to provide optimal care for her.
Deficits That Challenge But Don’t Derail Her Growing Maturity: A sure sign of her sense of safety and comfort emerged during a two-week period when my husband and I took a road trip south and our daughter, though struggling with the confusion of our changing itinerary, did not demonstrate any significant struggles with our absence. She relied on texts and phone calls to keep herself connected and to figure out where we were each day and whether we were driving or flying, staying in motels or at a familiar destination in Florida. Her texts revealed, more than anything, her continuing challenge organizing time in a sequence that might have provided her with an orientation of our whereabouts. Unfortunately her deficits didn’t allow her to track our journey nor did schedules or calendars sufficiently fill the gaps. Despite this confusion, her routines were not disrupted, no significant interpersonal clashes with staff or peers ensued and we found her in great shape upon our return. Awesome indeed! A signal both of her comfort level in her new life and her increasing maturity.
A Parallel Journey: My time has been taken up with editing the book of collected posts on parenting adult special needs, for a summer e-book publication, which has imposed a revisiting of the entire process twice so far, a challenging enterprise which often has me cringing and blushing with embarrassment at my own behaviors, tearing up at moments where the pain is still so accessible, and of course, joyfully incredulous at just how lucky we were and are to have gotten to this place. That awareness and gratitude never leaves me. Rather it guides me to offer help to other families of aging out special needs children, many of whom I am meeting for the first time through Ability Beyond Disability, Pegasus and Angelfish, and some of whom I am re-greeting as their children age out of our local school district. My daughter and I bump into her former special education classmates or their families in stores or restaurants hither and yon. Just today our daughter called me to say she reconnected with an elementary school buddy who returned to our town after years away at the Perkins School For The Blind, returned to fight with DDS (Department of Developmental Services) for services, a fight that I knew of from his family. Blind, cognitively challenged and fighting for services. This is the nature of the system – nothing granted easily despite hardship and an unknown future.
Scenarios That Remind Me: It is not unusual for me to hear from my own psychotherapy patients or friends the stories of families with middle-aged special needs children whose parents are elderly, developing dementia or other incapacities while siblings and extended family are scrambling to find a program, a residence, a life for the now older and often isolated special needs adult whose dependency on the now aged parents has expired, in a sense, and a new life has to be created for them. This is the bullet I sought to dodge, and when I hear of these desperate scenarios my heart sinks for everyone involved.
411 (Sex Education): Sometimes I miss our daughter though she is only twenty minutes away. But our lives are separate; she no longer lives in our home, there are no “school vacations” when she returns to the family abode to rest and regroup. And when I do see her, what knocks me over each time is not just how much I love her or how cute and clever she is, but how quick and smart is her out of the box humor. Here is a sample:
In a drive to the mall last week to purchase a gift for her cousin, a conversation evolved around sex. I cannot recall what triggered that particular chat but what ensued was the following:
“Mom, you know those 411 sex education classes we had at Riverview?”
“Some of that was embarrassing.”
“I can see that.”
(A little more related chatter on sexual matters mechanical and otherwise.)
(Then a pause and a slight turn of a head in my direction, glimpsed from the corner of my eye, a hint of a smile, and then__)
“Mom, I know I was born with eggs. What I don’t know is if they were hard-boiled, scrambled or poached.”
All we needed was one of those drum rolls that follow a knockout stand-up line. Where does she get this stuff? Right out of her hat. She is a hoot and a half and those who get to hang out with her are the lucky ones.
Dating Adult Special Needs Style: Recently a young man who is also a client of ABD asked our daughter out to the movies. The date had all the conventions of a dating sequence of old: it started with two people getting to know each other while pursuing a common interest; followed with the male calling the female for a date; and then a scheduled night at the movies. Very 1950’s. What was different even from the 1950’s conventions was the involvement of ABD staff who okayed and supervised the event. No one directly asked for my approval though I was informed prior to its occurrence, with, I am sure, the possibility that I could have weighed in one way or the other. That aspect felt just a tad strange. However, since our daughter had been in a previous relationship some years earlier while at her boarding school, the thrill of that “first love” passage fulfilled me then so completely that when I heard that same excitement in the staffs’ voices that I had felt years earlier, I was happy for them. I have grown too, and know that whoever cares for our daughter deserves to feel the joy as well as the gratification for her successes, her passages and her new adventures.
Resources: I conclude this post with one important request. As I continue to prepare my book for publication, I am compiling a listing of resources that will be added to the book to aid others in their journey. I would like to invite readers to submit suggestions for the resources section so that all might profit from our experiences. To do so, send me an email or post a comment on the blog.
Monthly Posting: Some readers who had followed the daily and then weekly posts on parenting adult special needs have missed reading about our daughter’s journey. And I miss writing about it. So for those who are interested, as of this month, I will post on the life of our adult special needs daughter, one month at time. Stay tuned. I hope you like it.
©Jill Edelman, M.S.W., L.C.S.W. 2012
Rachel Loeb says
I love these posts. I get teary and happy all at once. You are an amazing family. So triumphant.