Twenty-Four and She’s So Much More: Three months have passed since I posted on our daughter’s adult life. And the reason rests in the paws of our new puppy Tillie, whose own developmental stages have usurped much of my writing time with her walking, leaping, nipping and general mayhem-ing. Across town our daughter is developing not in length or stride as is Tillie, but also in leaps and bounds and this knowledge has filled me with unbridled joy. Our daughter’s growth is quantified by instruments of measurement different from those of previous years; no longer by IEP’s yardstick of trials of success and failure. Now how she handles social challenges; how well she cleans up her room; how often she shows true gratitude for the constant care and love of others; how quick she is to set limits when others exceed their own at her expense; and how well she recovers from frustrations, hurts and delays in gratification to move on to whatever the task at hand, not stuck in the muck of her own making.
Interpersonal Growth: Historically – and this history goes back almost two decades – by this time of year our daughter would have had at least two episodes of interpersonal alienation and inappropriate behavior lasting a week or more and leaving in their wake the need for some serious repair. Not this year. I did not receive phone calls or texts denouncing staff for non-gratifying limit setting (‘no you cannot stay up looking through your old yearbooks’) or railings against her peers for ‘getting in my space, she asked me why I was upset. I don’t like that! She’s getting in my business.’ Quite the opposite; when faced with two interpersonal challenges that extended over a significant period of time, our daughter didn’t share any of it with me until we met for scheduled activities, one a lunch date, the other an excursion to the mall. There were no dramatic summonings to aid a distressed damsel; no avalanche of texts or phone calls delivered through sobs and laced with indignation and fury. Instead she introduced one conflict with her traditional introduction “Can I talk to you?” and calmly proceeded to describe both some fear and frustration with another’s behavior and asked for our help in communicating her feelings to her staff. Her articulation of her dilemma reached a level of maturity that exceeds, in my experience, that of the average grown up. I witnessed her other challenge in person: a friend left a hurtful voicemail which she picked up while we were driving back from the mall. Though at first angry at the recorded reproaches, she did something truly remarkable – she quickly shifted from anger to putting herself in his shoes, telling me the reason she thought he was upset and expressing her sadness that she had neglected and consequently hurt him. In my business we call that being accountable for one’s actions, or the shorthand, “owning.” She then called him back and apologized. In subsequent weeks, when this behavior continued, she reached a different place and decided to ‘call the whole thing off.’ But first she tried empathy and patience. Really, who does that?
Employed and Prospering: The good news just keeps on coming. When the president of SPHERE, Valerie Jensen, the theater arts group of which our daughter is a member, viewed her collages in my book, she moved quickly to hire her to make collages for SPHERE. This enterprise is not a solo gig. Our daughter and another SPHERE member sit at a long table together with their materials (in our daughter’s case, piles of fashion and pop culture magazines) each plying their craft. They take a break to make lunch together and are virtually alone with minor supervision, for three consecutive hours once a week. They must cooperate and collaborate, be flexible and probably generous at times with the other’s way of being and style of interaction and it is working. What can a mother say? My little girl is no little girl anymore; she is a woman of grace, talent, tolerance, increasing independence and is a paid artist. Whoa!
When she goes to the bank with her staff now she fills out the slips for deposits and withdrawals. And finally, after years of frustration, I have gotten across to others that playing with fake money or even the most seemingly stimulating educational numbers and money computer games is a waste of our daughter’s time. In fact these well meaning endeavors tap into an area of experience for her that is so high in failure and laced with acute anxiety that the amount of educable availability our daughter can offer up is zero. Unless it is meaningful to her, don’t bother! I have not a clue if she will ever learn to correctly identify the five from the ten or pay for her deodorant without help, but I know for sure she will not learn this way. Really, hasn’t she suffered enough?
Instead we have shifted the plan to focus on purchasing one item over and over again, shampoo, deodorant, tooth paste, whichever item she runs out of most quickly, and learn how to pay for that one item, with real money. The item, the cost, they need to be a constant. Someday maybe the money concept for that item will become a constant too.
Monumental Moment: That was the subject of an email from an Ability Beyond (they have shortened their name, leaving out the “Disability”) staff member who I often refer to as the ‘heart’ of our daughter’s adult residential life. Let me give you some background here to enhance your understanding of the significance of this moment. Since early middle school, our daughter has been obsessed with our town’s high school yearbook. For many years she insisted on having a copy for each current graduation class, and to protect our son’s copies from the weathering that her compulsive page turning led to, his were hidden away. The roots of this obsession were transparent to me – to become a member of the group, belonging, a part of the peer world, if only in print. And though its sheer pathos and yearning broke my heart, in many ways it was a benign and applicable compensatory activity that served its purpose – to facilitate her connection to the outside world and in fact, from my observations, provided new links to her brother and his friends, despite the awkward, often embarrassing and relentless character of the process for him.
As a family, we were forever finding shredded bits of faces and pages everywhere our daughter wandered, the car, the bathroom, the bathtub, the kitchen, my office. Backs of the books would break and I would descend upon the high school office to beg to buy another copy of a particular class year, if they had any. Books were taken on all family trips, to camp and boarding school and of course to her new home in Ridgefield two and a half years ago. Ample copies were also left here in her parental abode. Clearly this was her version of the blankey, her transitional object, her everything. The books provided stimulation, comforting and a chance to be a part of something that generally eluded her. But this wasn’t only perusal material. She knew the faces and names of members of each class, from freshman through senior, covering a period of at least six years. She bombarded our son with questions about whether he knew this set of twins or that cute boy. She went over to a young handsome graduate who returned one day to the school while she was a freshman there and called him by his name. She knew him but he had no idea who she was. This wasn’t rote memorization. Eventually she would meet the person or their sibling or parent directly or hear about them through her brother or his friends or see them in a play, at the supermarket or later on Facebook. All efforts at limit setting – lights out, time to go, bus waiting, plane taking off without us, eating – all parameters were challenged by this obsession. Now to the email. Here is the verbatim content of the email the staff sent to me:
We had a monumental moment today at RCRS. (Our daughter) got up this morning and went and got her yearbook. She came over to me and in her exact words: (Staff Name), I do not need this anymore and I am throwing it away! I asked her if she was sure and what had made her come to this decision. She replied: I just don’t want or need it anymore, I am strong enough now!!!!!! Everyone has helped me to become strong. WOW!
What allowed for this growth, what has gone into this cocktail mix that is producing this outcome? Absolutely everything you can think of: years of dedication from professionals and paraprofessionals who have taken the time to learn who our daughter is first of all and then give her their best – it has to be in that order, as I mentioned earlier, or it won’t work – to learn who she is and then fire away; family of course, the foundation for all else, striving to respect who our daughter is (as hard as that was to figure out) until the requisite acquisition of enough new skills spilled light over the surface of this particular special needs child. What is the material that has gone into the foundation of this latest manifestation of increasing self-confidence? My guess: the team that is working with her from Ability Beyond. It is a cocktail mix that has far exceeded my expectations; this team, the coordinators and their staff who have their boots on the ground fighting for our daughter’s growth and safety daily. Powerful mix indeed.
Some Scenarios May Never Change: Despite my unrelenting joy at our daughter’s adult life two icky things happened this past week. Icky in the avalanche of pain and fear they caused inside me for our daughter. First we attended an event where someone I didn’t know well saw our daughter for the first time. I introduced them and watched this person’s eyes take in our daughter interacting with her brother, a slightly worried and puzzled look upon their brow. Was it just me or did I witness an all too familiar moment when another tries to process something unexpected: that this is a special needs person, that we have a special needs daughter. It was a searing moment for me, not new but not something I see often anymore. Don’t think less of her; she is an amazing person. Respect her! Don’t feel sorry for her or for us. And then my other icky moment, which happened when staff talked to me of our daughter’s increasing independence and the possibility of a future job at the new SPHERE enterprise, a multiplex non-profit movie theater, The Prospector. Currently under construction a block from her apartment, The Prospector will open in 2014; 95% of the employees will be special needs adults specifically trained for their jobs by The Prospector staff and the agencies who will work with them. What could be better? ‘She could walk there on her own someday.’ Really? Across the most dangerous intersection in the town? NEVER!
Yes she could walk down the street to the movie house, a straight line from her front door. But cross that bizarre intersection with the blind corner alone, the one the town selectman described to me when she first moved in as so dangerous? Even with all the training and practice in the world and staff watching her every move from the curb, some risks are unnecessary no matter how significant the gain may seem. Of course I immediately shared with the team my reservations, which I later followed up in an email so I could sleep that night. Staff are kind and reassuring but I insisted on having all in writing. I will not be around forever. Who will make sure that nothing like this could ever happen? Unless they put in traffic lights and she gets an official safety evaluation and so on, absolutely not and not even then. Staff provided the specific protocols that have to be followed before permission for a step such as this could be implemented, which include guardian approval. But no parental guardian lives forever and staff changes are guaranteed. Yes, I know, it is so hard to reassure a special needs parent that long after they are gone others will be there to fill their shoes everyday for the rest of their child’s life. Others whose focus will never wander from the most important goal of all, keeping their child safe.
My life is so easy now. I am so grateful. Our daughter is so happy. Keeping my eyes out for ick and my fingers crossed.
©Jill Edelman, M.S.W., L.C.S.W. 2013