Phase ll Of Parenting Adult Special Needs: One Week At A Time

Back To Business: A full week away from writing my blog has been strange indeed. Though the time was bathed in the joys of turkey grease, sweet potato skins, family fun and amazing Fall weather, I do enjoy being back at the keyboard. A daily ritual was absent and no surprise that the experience was as if a part of me fell out of my identity kit. Perhaps I have turned into a “writer” as in a person who needs to write. I describe myself as a compulsive communicator, so adding this piece to my identity rounds me out quite well.

The CRS Open House: On the Tuesday before Thanksgiving, the Ability Beyond Disability team held an open house at our daughter’s apartment, mostly for ABD staff though the Ridgefield town selectman and two members of SPHERE were invited (none of them attended). The purpose was to provide a viewing of this new residential model to other staff who may be in positions to present the model as an option to new clients. The apartment looked amazing, with staff adding those little touches that make a house a home, including a series of small canvases painted with acrylics, grouped above the red couch, one by each of the apartment-mates, several by residential staff and a jointly composed abstract. The grouping is charmingly individual, with our daughter’s colorful floral composition, her apartment-mate’s sunny rainbow, and staff popping some touching mottos on top of original designs. Readers might recall that our daughter rejected contributions from her father’s ample supply of original oils, most of them landscapes, which surprised staff and the other mother, but made complete sense to me. After all, she is young, cool and “independent.” Dad’s wonderfully executed artwork did not match up with the aforementioned attributes at all.

The Third Storm Behind Us: I guess you could say the girls and staff have now survived three stormy episodes since the move-in date of August 1. There was of course Hurricane Irene, whose powerful winds returned the young ladies to their parental homes less than three weeks after the occupants took residence of their CRS. Then the Halloween Nor’easter that knocked down thousands of power lines and provided yet another round of outages, cancellation of volunteer jobs and general havoc. But most disturbing of all, Storm # 3, the Interpersonal Storm that lasted the longest (twelve days but who is counting?) during which time the apartment-mates were “not happy” with each other, “needed space,” resisted redirection, aborted attempts to inspire empathy via a board game and stayed loyal to the mantra “I am not ready to forgive her,” all ending on a wonderful note last weekend with a pre-Thanksgiving passing of the proverbial “peace pipe” so to speak, just in time to see “The Wiz” at the local high school. Whew!

The Other Mother And I: Throughout those dozen stormy days, the other mother and I never communicated, not an email, a text or a call. Wisely, I thought. We both know our daughters, are more than familiar with their “shtick” and at least from my end, saw no point in hashing it out together. I never called her to ask what she thought. I knew what she thought. It was the same thing I thought. This is what our daughters do, did, have done.

Pure Hell Revisited: Sitting next to each other on the red couch at the CRS open house after the guests left and the girls went up to their rooms to ready themselves for dinner and Angelfish swimming, the two mothers and the team spontaneously reviewed the episode. The staff spoke glowingly of the girls’ resolve to make up, acknowledged that it was tough going for quite a while but placed the emphasis on how well the ladies worked through this challenge. The other mother and I were less inclined to glow, having lived this journey too many times. In fact, sitting closely together on the red couch, mostly we chuckled, knowing full well that these ordeals are pure hell. And no amount of staff gloss or glow could cast anything positive on the process, except that they survived; the girls that is, still friends. As all said, the honeymoon was over, but the marriage remained intact. The truce was accomplished by the non-professional Saturday staffer who offers the most accepting attitude and placed her accomplishment in the hands of the “wonderful training” she received by the ABD professional team, “You trained me.” That’s cool.

A New Schedule and A Book: Now is the time for a change in the schedule of postings on parenting adult special needs. The honeymoon is over, the marital crisis abated, three volunteer jobs are in place, medicaid coverage has been reinstated, key staffers are on board, and our daughter has approximately five months of “adult independent living” (if you use the official date of onset July 1, 2011) behind her. I began the daily posts on April 1, 2011 and now will post weekly, on Mondays, to supply updates on the next months of her first year of adult life. An added focus will be on putting together a book of these days and writings with the hope that an even wider audience can benefit from our steps, missteps, learnings, failings, emotional highs and lows, bureaucratic bumblings and staff saves. Feedback is that the postings have merit for parents with “normal” children, in addition to parents of special needs offspring. Who knows? Our daughter’s star magnet quality seems to reach audiences far and wide.

Blogging Gal: Another possibility is to turn the gal into a blogger/critic herself. Many have suggested this, as she is adept at reviewing everything from movies to Broadway shows, restaurants to ice cream flavors. Just yesterday, her staff spontaneously stated “Whenever I want to know about a movie, I ask… her (our daughter.”)

Yep, so do I.

The Journey Continues: Please stay tuned. Perhaps the star magnet can offer some insights into her “world” directly, and I would love your feedback on the weekly posts. Let me know if the format works or not. And of course, thank you so much for checking in daily. For those who also read The Coupledom posts, I will be publishing more of those than I have in recent months, as my new schedule allows.

Fingers Crossed: My original goal remains firm: to paint a picture in prose for parents of adult special needs to view and use as a template of sorts to aid in reaching a satisfactory vision of adulthood for their child. As I have written previously, each state has its own confusing process, each adult child their own set of challenges and abilities, each parental body, their unique gifts and opportunities. Some folks do not need government funding. Some folks have children who do not qualify, in our existing state and national system of entitlements, for government funding, yet clearly are ill-equipped to live on their own. Whatever the composition of your child’s patchwork quilt of adult special needs living, if I can help or if this blog has offered something, well, that is very satisfying indeed. Fingers crossed our special children will all get to that place of safety in adulthood. That is the wish, that is the work.

©Jill Edelman, M.S.W., L.C.S.W. 2011

Leave a Reply

XHTML: You can use these tags: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <s> <strike> <strong>