Two Years Have Past: Two years ago today I wrote this post:

Becoming a Consumer: 4-30-11
Admission Paperwork: On Friday, May 6th, our daughter becomes a client of her service agency. The other mother and I are instructed to bring psychological evaluations, documentation of all income sources such as SSI and SSA; Medicaid and social security cards; guardianship documents; recent medical exams; lists of medications and doctors information to a meeting…

This past Saturday night, April 27, 2013 that same service agency, Ability Beyond Disability, had its 60-year Gala celebration at the Amber Room in Danbury, Connecticut and our daughter with her boyfriend, our son with his boyfriend, a residential staffer who provides the maternal heart of our daughter’s new home, and others who were instrumental in getting our daughter to this place of adulthood, shared in the celebration as our guests. A year and eight months have passed since our daughter moved into her apartment on August 1, 2011 and launched her full-time “adulthood” outside the immediate purview of her parents’ scrutiny. This journey, detailed in my book, “This Crazy Quilt: Parenting Adult Special Needs One Day At A Time,” keeps on going, and thankfully, successfully. She is happy, flourishing and in love.

Counting Our Blessings: There is more great news. Our daughter keeps maturing, harvesting the fruits of years of guidance and socialization garnered from her schools, her family, and her innate abilities. She is better organized, reads remarkably well, is more confident and socially appropriate and most important, happier. Her weekly schedule includes volunteer work in three settings, all animal related, and two days’ attendance at DSO, the social programing component that the agency provides at their Headquarters which includes the book club our daughter introduced almost a year ago. She has swim practice weekly in preparation for the aquatic competition of Special Olympics this June. Her weekend is busy with her riding class at Pegasus, the therapeutic equestrian program in Brewster, New York, and she maintains a sturdy exercise regimen throughout the week. She has lost over twenty pounds since her return two years this June from her boarding school, and is proud of it. Healthy eating, exercise, the usual requirements for weight loss, with close monitoring by residential staff were the ingredients; a fairly pain free process for our daughter with little pressure, just committed staff totally on board regarding meal and snack choices. And, this Sunday our daughter, two staff and her apartment-mate fly to Disney World, a five-day trip funded by careful budgeting and saving from their entitlements with assists from each of their families to cover airfare.

Our Time Together: Our daughter and I have a regular date each week to go to lunch. She is still the funniest kid on the block, so we gab and giggle about pop stars, food, clothes, movies, friends and animals. Our family is on a waiting list for a Portuguese Water Dog puppy, since the loss of our Waggy on December 12, 2012 has left a crevice of pain in Mom’s heart and a mutual yearning for a new pooch in our lives. Last week she and I saw the Broadway show Matilda, seated in the third row on the aisle while the cast ran up and down the aisle brushing against us with unexpected bursts of air, loud voices and energy, something our daughter could not have tolerated even a year ago.

My Mom: This summer, we have plans to travel both north and south as a family. These “disruptions” in our daughter’s weekly schedule can produce some anxiety in our daughter but she has chosen to participate in both events, one to her former boarding school for their Gala night. I was surprised that she wanted to attend as she often views long car rides as equally unappealing as upsetting her usual routine. But she is maturing and becoming more resilient every day.

No longer does she organize our time together around shopping, a motif she had incorporated since early childhood. Now we can just visit. The staff shop with her. No longer do I push myself to do more than she is asking for, out of guilt or confusion (at least I am better at this if not totally there). When she needs me, she lets me know it. I am trying to fix my boundaries more tightly around reality, not projection, confusion or ambivalence. I think about what I needed from my mom when I was 23 and how often I wanted to spend time with her. And frankly I am grateful and surprised that my daughter seems actually desirous of my company, perhaps even a bit more than I was of my mom’s at her age; at least as I recall from the vantage point of history.

Boundaries: Throughout the year I have been working hard on establishing these boundaries as the mom of a special needs adult who lives just nine miles from her daughter’s home. But there does remain some ambiguity: a big part of me would love to believe that the “parental eye” is no longer required and I can merrily go about my life worry free, just “hanging out” with our daughter without the intensity and scrutiny of the last 23 years. You know, if they don’t call, assume all is fine. But then when I do use that eye to examine our daughter’s world, stuff pops up and a voice whispers in my ear, don’t get lazy. Over a month ago our daughter attended a dance wearing a formal strapless gown, which she and I had purchased together in a poorly lit local dress shop. When I came by to take photos prior to the event (upon invitation of the staff), I saw a brown spot on my daughter’s skin in an area below her armpit Would someone else have seen that? I think so, but I rushed to make the calls and send out the emails to make sure this spot was looked at immediately. Fortunately it was just hyper pigmentation from an irritation. Would this investigation have happened as quickly without my eye? What if it were something serious? Our daughter didn’t seem to notice it or at least mention it.

Little Glitches: These little glitches keep reminding me of that essential question: who will replace my eye, my scrutiny, my passion when I am gone? There are other examples: one evening around dinnertime we received a call that our daughter (sound familiar, this is her second visit to the ER in six months) was on her way to the emergency room in an ambulance. Staff said she appeared a little off at dinner, complained of dizziness and of not being able to focus her eyes and immediately the staff called the agency nurse who advised them to go by ambulance to the ER in case some grave “medical event” was unfolding. Staff as always was on the ball, wasting no time ensuring that our daughter received medical attention.

At the ER her vitals were fine and after extensive parental and staff questioning (the ER doctor never showed up to examine her) with our daughter venting and crying, we traced the likely cause to an increase in her Focalin medication some weeks earlier that was both interrupting her sleep and giving her that speedy dizzy feeling. Could staff alone have vetted all the possibilities with our daughter as quickly as a mom and dad who know her for 23 years? And would staff have pushed as hard for the adjusted medication script to be rewritten asap, a bureaucratic process that involved the agency’s prescribing psychiatrist to get on board and even with our push, took five days (though we immediately were able to reduce the culprit, the afternoon medication) to finalize the process? Two years ago this week we signed a contract which made our daughter a consumer of an agency that has proven to be trustworthy and highly professional, an agency I respect for their high standards and dedication. Yet all agencies have their protocols that at times can feel cumbersome and even a bit worrisome.

Falling Off The Horse: Earlier this month, one day prior to our two-week vacation to Morocco, my husband and I received a call that our daughter had fallen off the horse she was riding at her Pegasus Saturday morning class, bracing her fall with the palms of her hands. She seemed fine but complained of pain in her left wrist so staff took her to the local Emergency Care center (eschewing the ER after experiencing the long delay the previous month) and I met them there. The physician on call did not inspire great confidence, when after a physical examination, and an x-ray of our daughter’s wrist, refused to x-ray her arm, claiming it was clearly just a sprain. Our daughter left the building with one of those protective braces that do nothing. The staff and I both were appalled and I followed up with an email to all staff (nursing has to be notified in order to accomplish anything health or medically related) that our daughter needed to see a wrist specialist.

The next day I was on a plane to Casablanca. But the staff, the agency, did all the right things. No it wasn’t just a sprain, it was a fracture, requiring two weeks in a purple cast, no showers, no riding, no swimming. And no mom on board. But the agency worked its magic. Our daughter’s insurance is Medicaid, and the wrist specialists who take Medicaid were unable to see her for four weeks. I knew none of this until I returned (only receiving emails from our daughter and staff that detailed that she did indeed get a cast and it was indeed a fracture) but the ABD staff, faced with this delay, made calls to our daughter’s primary care physician who arranged for an orthopedist to see our daughter within a day. No mom could have done a better job!

Self-Advocacy: Special needs adults need advocates and close and careful monitoring. They are less equipped to advocate for themselves. Can you teach advocacy? Yes. Our daughter knows to examine herself and I and staff will explain to her the value in noticing pigment changes to her skin (she had a full dermatological check up) and the necessity of reporting them to staff. To some degree we can and must teach self-advocacy to our special needs children. All her educational institutions worked hard to drive that point home to their students. In fact one of the most fundamental goals of good parenting is to teach, model and inspire our children to develop the skills to identify their needs, and to follow up by seeking out the proper resources that will facilitate meeting those needs; self-advocating is a lifelong task. With an adult child with cognitive and other challenges, even in the case of someone like our very verbal daughter who can at times advocate for herself, you cannot assume that she would insist on seeing a wrist specialist or understand that a brown spot should be looked at by the nurse or question the impact of a medication on an increased restlessness at night. And though we have the services of an outstanding provider agency, they are still an agency with staff changes, adherence to strict procedures further complicated by our daughter’s reliance on government insurance funding. So who can I turn to for that extra eye, the lifetime knowledge base, to fill that spot in the decades to come?

Every Parent’s Question: Is it a burden to ask the sibling, the cousin, the incoming generation of adults to fill that slot? Yes. But there really is no other choice. The personal piece, the family member who carries the special needs adult’s history in their back pocket, who can provide that consistency, the lifelong data base, the shared DNA commitment, is essential even with the services of an agency with the professional expertise, skill and dedication of Ability Beyond Disability. The agency knows this too and welcomes the family involvement in a multiplicity of areas. As the coordinator of our daughter’s residential program reminds, “You are the mom.”

Life is so long, hopefully, and our daughter will long outlive us. We parents of special needs do the best we can to put in place a hierarchy of overseers, both personal and professional, to ensure that our children’s lives remain as good in quality as they are long in quantity.

Our daughter sure is living the dream, happy, maturing, loved and self-loving. Pretty darn good. Fingers crossed, now and always.

(BTW, do I worry as much about our 26-year-old son? Yes. Do I scrutinize him as much when I see him? Yes. What’s the difference here? Certainly not me; I am the constant, the same worrywart of a mom. It’s them, very different children with a very different set of life skills. Makes the whole difference. One needs a scaffolding of care put in place by others, forever. The other constructs his own scaffolding of self-care, forever.)

©Jill Edelman, M.S.W., L.C.S.W. 2013