Trophy Gal, A Note of Hope for Parents & What Friends Don’t Know: 5-23-13

Speeding Through May: This has been a glorious month for our daughter, and there is still another week. She was awarded the “Adult Rider of the Year” award at the 32nd Annual Pegasus Horse Show which was presented by her idol equestrian Georgina Bloomberg, a surprise that nearly blew her helmet off. In early May she spent five days in Disney World with two staff and her apartment-mate. We participated in her semi-annual meeting with Ability Beyond Disability where she listed her favorite activities: horseback riding and Special Olympics swimming. The following week I was invited to visit our daughter at her Pegasus volunteer job located at the Brewster, New York Equestrian Center where she works in their Rider’s Closet, founded by Ms. Bloomberg. I walked into a large room with two smaller storage rooms off it where neatly ordered donations of riding gear and clothing filled the shelves; helmets, boots, all manner of riding equipment and, seated at a table in the center of the big room, our daughter was vigorously applying polish to a pair of rider’s boots using old fashion elbow grease. Needless to say, the setting and the scene were enchanting. According to both Pegasus and Ability staff, our daughter has becoming increasingly efficient at her task and has developed quite the work ethic. The riding world is a world that our daughter has embraced since childhood and it is a world that has embraced our daughter, both as the rider and now as the worker. I rejoice in their mutual embrace.

A Hopeful Note for Parents: Our daughter’s trip to Disney was so joyful that it inspired daily texts recording all its many delights. No surprise there. Well, not exactly a surprise but what a contrast to the two trips our family took to Disney over a decade earlier. Is this the same child who couldn’t tolerate the Magic Kingdom because the costumed characters might approach her, the sinister Cinderella or Tinker Bell? Was this the same child who melted down in spite of a schedule that allowed for loads of downtime, along with continuous hydration and nourishment? And no, I never asked for accommodation for “our special needs child” so that we wouldn’t have to stand on lines. Frankly, that never occurred to me. Times have changed since the late nineties. Is this the same child who eschewed most rides, but now rode Space Mountain? (Though she vows never to ride it again, wisely, I think.) All was not a bust on those earlier trips. Our daughter loved Animal Kingdom, aspects of Epcot, and of course the swimming pool at our hotel, but her comfort zone was narrow and her meltdowns frequent. Sensory overload, and other factors were clearly at play but we had two children and she was a fan of Disney movies, a big fan. Most American parents feel this is a rite of passage in childhood and I really thought that our daughter would love Disney. And our son surely deserved to pass through this childhood archway en route to adulthood. But she really wasn’t ready for Disney yet.

If I could redo time, I would make the trip alone with him. Though I loved our Disney trips, the memory of the spoiled moments for our son leaves that taint of sadness and guilt that marks many of my memories of the ordeals for this sibling. But at that time, I didn’t think I could leave our daughter alone with her dad and other caregivers for more than a night or two. I was wrong. I thought Mom had to be there. It wasn’t until our son turned 13 that I left her for ten days and took him across the world to Israel. By then she was eleven and still my anxiety was off the charts. Naturally everyone survived and our son got his moment in the Middle Eastern sunshine and I liberation from having to “neglect” one child because of the unrelenting demands of the other.

Take Heart Parents: Special needs children do mature! And what once seemed like a Cinderella dream, “A dream is a wish your heart makes when you are fast asleep” can come true. Our daughter’s ability to enjoy the world of make-believe for five days traveling with others is further evidence of that fact for me and perhaps can spread some hope for others who are in the early years of this journey.

Semi-Annual Meeting: Every six months the Department of Developmental Services and Ability Beyond Disability meet and review our daughter’s program. Much like the PPTs of her academic career, a written report by each coordinator, vocational, residential, medical and Day Services programming, is provided to us and reviewed by the team. The DDS case manager was not at the meeting though she will review the “review.” Apparently DDS no longer requires case managers to attend the semi-annual meeting, just the annual meeting. Strange and concerning as that is, it is an even more concerning indication of the size of their caseloads due to budget cuts that such measures have been approved.

Who Is Teaching Her Now? My focus for the meeting was to raise the issue of skills acquisition, the same skills and cognitive challenges that have resisted significant change for decades: numbers, money, time and measurement, a theme that I spelled out two years ago on the eve of our daughter’s aging-out of her academic life, in the blog post “Who Will Teach Her Now?” and recently in my book, This Crazy Quilt: Parenting Adult Special Needs One Day At A Time.

Frankly not much has changed. There is a “cooking program” which seems to be at the most basic level of keeping her from leaving the kitchen. There does not appear to be a demonstrable increase in the area of measuring ingredients. The same can be said for acquisition of money related skills and telling time. The team understood my concerns and agreed to meet with the Ability “Tech Guru” to explore what new programs are available to aid in this area. This afternoon I received an email from one of the coordinators confirming that in fact a productive meeting with said guru took place yesterday, right on schedule. We will be receiving information on that meeting shortly.

Academic Stimulation Required: Our daughter is a learner, she is a sponge, she loves history and WWII and she needs a history class. My husband and I raised this issue at the meeting. The team knows our daughter very well so there is no need to convince them of this need. And our daughter, who was seated with us at the table in the conference room at Ability, supported our rendering of her desire. Where can she find this stimulation? No one knows. The local colleges don’t offer classes for adult special needs so we have to think out of the box. The Ability team agrees to think “out of the box” but it isn’t easy. Perhaps she can audit a class, take an online course with staff supervision. Certainly the team agrees that they can arrange more field trips to historical places. Work is needed to fill this missing piece out of respect for our daughter’s ability and to keep her stimulated. Boredom is deadly. And as she is continuously improving her vocabulary, her reading skills, her awareness of the universe in general, additional educational venues are necessary to keep up with her increased capacities.

What Friends Don’t Know: I had my first “author and book signing” event at our local library in what has been my husband and my hometown for over thirty years, the town where our children were raised and schooled, a fairly small town at that. Probably a third of the forty people who attended the evening event upstairs in the Mark Twain Library’s original 1910 building, founded by Samuel Clemens aka Mark Twain, which is how the library got its prestigious name, were friends, some very close friends: a neighbor who lives within shouting distance of our front yard; a couple who lives an hour away so when they visit happily they stay for hours; members from my book club, which has met once a month for twenty three years since our baby group was formed. And each one shared with me either in person or in an email that they had no idea how difficult family life was, how much went into establishing this “adulthood” for our daughter, just how much “stuff” was going on.

And I explain it all this way. Sharing all that “stuff” with our daughter’s community, after all it is her hometown too, felt to me as if I were betraying her. When you are raising a child of difference who may not manifest the same accomplishments of their peers, whose behaviors can challenge even the best of friends, you protect their image, you strive to ensure that they are respected, that they receive the same respect as anyone else’s child receives, at any age. So you share what’s best and try to keep the rest under wraps. It wasn’t easy and I was sure folks knew more, saw more and heard more than apparently they did. And I tell the truth when I do “share.” I always have and no one wants to break down and weep and spoil the fun for others, though that has happened as well. Even with the leaks, folks are absorbed in their family life, their children’s needs. Ironically I had the reverse challenge placed before me in my attempts to acquire the services our daughter needed, the schooling, funding, when we desperately needed experts, educators, specialists, bureaucracies to see the “stuff” that was shrouded from our social peers. How odd it all is. But we got there and our daughter’s life is as happy as any of her peers, her typical peers too.

At the author event, I displayed framed samples of our daughter’s collages, which serve as illustrations for my book. Though I have talked for years about our daughter’s artistic ability in this area, here was another surprise for audience members, the sheer sophistication and evident talent inherent in these marvelous collages. One artist attending the event wants to put one of the collages in a prestigious art gallery opening in New York City.

It is a Crazy Quilt – of patches of awesome and patches of Oy Vey, in raising and parenting a special needs child. The parents of these amazing children of difference know that well. Sharing with each other is always easy.


©Jill Edelman, M.S.W., L.C.S.W. 2013

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