Too Much Sadness: Since my last post about our daughter’s adult special needs life, much has transpired for all Americans. A little more than a week after my posting, Newtown, Connecticut, a town adjacent to our own, became the target of a massacre unlike any our country has ever known. An intentional murder of twenty six-year-old and seven-year-old children and six of their educators, all of whom died from multiple gun wounds inflicted by one young male who lived amongst them, pushed a gruesome new reality into all our lives, just eleven days short of Christmas. Lock down occurred in the area schools and in my daughter’s apartment as well, twice, that day and several days later when a “suspicious” figure dressed in black lurked near one of the schools in her town. The agency, Ability Beyond Disability, applies the same protocol as the area schools for all its consumers.
Waggy Dies: On 12/12/12/, two days prior to the shootings at the Newtown elementary school, known as Sandy Hook, at the age of thirteen and one half years, our daughter’s Portuguese Water Dog, Waggy, was put down, a decision resulting from a devastating deterioration in the dog’s ability to walk and ultimately a seizure indicating other processes were at work. The two events, one the natural and humane course of action when an older dog is suffering and the other inhumane, unnatural and horrific, melded together in our family’s brain as a very sad time. Since Waggy no longer lived with our daughter, I informed her three days prior that our pooch went to the Vet Emergency (ironically in Newtown) and was really struggling. Since then, she texted frequently with her concerns: “How is Waggy doing?”
A Social Link: Almost fourteen years ago, in what seems like yesterday and also another life, our daughter’s world was filled with canine preoccupations. Dog-less in a house with two kitties and an ever-changing array of rodents, our daughter spent hours pouring through dog books, learning breed characteristics and watching dog competitions. Out in the world, she had the over-focused, slightly inappropriate tendency to quiz strangers on the breed of their pooch that she had exhibited earlier in the horsey world. The connective tissue between her passion for all things dog and the world of social interaction with others seemed clear and necessary to build upon. For her, it wasn’t that the dog was a soothing presence; not truly a “therapy dog” in the traditional sense. It was more that her questioning mind and scientific interest in canines linked her to and built up her strength socializing with her fellow humans. It was a kind of calling card that permits entry.
In-House Dog Lab: Naturally there was some family resistance (no names mentioned) to obtaining yet another animal but I was convinced that our daughter would benefit from having her own in-house dog lab, a canine to study, hopefully love and possibly train. Never having owned my own pooch, but related to extended family where everyone in their adulthood had/has at least one and often two dogs, I felt I could add this responsibility to my life as easily as my sisters, cousins and friends did. I was right. We chose the PWD breed because our friends owned two and characterized the dogs as “never leaving your side and following you everywhere.” The breed was also known to be working with other special needs children. That totally worked for me. I love a warm companion and Waggy was just that for all her doggy life. My buddy.
Poor Dog: For our daughter and for Waggy, their relationship was more complicated. The empathy factor was hard to teach and though our daughter was chronologically nine when she became a dog owner, her interactions with the pooch were more in the age range of two- or three-year-old children. The iconic example: dragging the dog on the leash into the line of the invisible fence, over and over again, the dog’s head gyrating from the shocks, heartbreaking to witness. No manner of explanation ever prevailed to modify that behavior. Her interests were less in cuddling with a cuddly dog than in shopping for dog toys, leashes and dog training videos. But out in the social world, the pride our daughter felt walking this stunning animal on a leash through the parks and streets was palpable. Her use of language increased exponentially and the bridge that I hoped would be built to others unfolded before my eyes. YES!
Not Always What It Seems: My husband and son knew that Waggy’s early years were not easy. Others idealized our daughter’s feeling for her dog but we knew. The same difficulties that our daughter had in seeing the world through the eyes of others, which normally triggers empathy and accommodation to those not occupying your body, were manifold when the “other” has no language and can only bark or bite. And the spin-off from the treatment our dog often received affected our son, who was sensitive to all suffering, particularly in the animal world. This was very hard to watch and not always possible to prevent. The ordeal of seeing a child you love feel powerless because of the actions of another child that you love is a common agony of parents of special needs children and for me, the most excruciating of all. So here we are now, thirteen years hence, our daughter far more socialized, civilized and capable of empathy, and that valiant pooch is gone.
Biased? Our daughter knew that Waggy was an older dog. She had seen her puppy go through a leg amputation four years earlier and though she didn’t live with her anymore (and in fact only a few months a year once she attended boarding school), her skills as a superior observer, even in brief visits home, revealed to her that Waggy was aging. The morning we decided to put her down (I can’t find a better more sparing phrase), I struggled with whether our daughter should be pulled out of her DSO (Day Services Option) program to be given the option to say goodbye. I consulted her staff, my husband and our son. It was one of the harder elements of the loss. Who makes these decisions for others, for a twenty three year old special needs daughter, an adult? Was I biased by not having the staff offer her the option of seeing her pup one more time, something that we all knew would unravel her for the rest of the day? Was I denying her the dignity and respect that I would offer her brother, who was in New York City at work and was comfortable remaining there? Or should we wait until the deed was done? The dog had been up all night wailing in fear and confusion. How could waiting be a good option for her? And frankly, for me? Another night of witnessing my dear Ms. Wags in such a state or leaving her with the vet, even more unthinkable, to suffer in a cage alone – nope, not an option. I wanted to do this and do it “now.”
The “No Good Answer” Answer: How often are decisions based on opinion, gut, exhaustion and the simply fact that there is “no good answer?” Absolutes are not always available, outcomes not clear, so we just guess the best we can based upon what we know from previous experiences. And what we know about our daughter is that events can become dramas, spun out of control and spilling into other aspects of her life that might cause more damage than necessary. Social crashes, such as an unfortunate clash with a DSO group member or someone else because our daughter perceived that she wasn’t given her space to grieve, can lead to days of social and emotional clean up. And sometimes when you give our daughter choices, her own ambivalence and uncertainty overwhelm her and lead to perseverating behaviors that find no solutions no matter how many are offered.
Don’t Tempt Fate: So the consensus was not to tempt fate, to allow our Waggy to depart and wait until our daughter had completed the days’ programming, away from groups of peers, to tell her and take the risk that should she have feelings about not being consulted, we would deal with them. Then there was the question of whether I should be at her apartment to present the news. Reassuringly the staff person scheduled to be on at the end of her programming day is the heart and soul of our daughter’s adult residential life. After I said goodbye to our sweet Wags, I went home to grieve and work. Later I spoke to the aforementioned staff whose twelve-year-old golden had been put down two months earlier. She had shared her grief openly with our deeply consoling daughter and clearly they had deepened their bond through the process. The staff clearly wanted to handle this with our daughter and I knew she would be wonderful. So I bit the bullet and let her do it. We agreed on a plan. When our daughter returned to her apartment, I called her and she immediately asked about Waggy. The moment the words came out of my mouth, she burst into sobs, was overcome, and the staff took the phone to tell me she would call me later. How did I feel? Well, this is always the slippery slope with this adult special needs parenting life. I felt I had passed this job onto someone who wanted it. And that my daughter would benefit. And that is always a bit sad.
The Climate of Grief: Two days later, Sandy Hook became a tragic household name. And I couldn’t figure out from that point on, what and who I was grieving for because though one loss was personal and natural, and the other devastating and intolerable, loss flows through connected streams and enters into a common river of grief. I have been a couples’ therapist to many over the years who reside in neighboring Newtown. I sent out emails to all to find out if they had any losses. I knew that most no longer had very young children. Like everyone else in America, and many around the world, I stood frozen for hours in front of the T.V. and sent out messages to colleagues in Newtown to offer assistance. In another realm entirely, our daughter was being consoled by all on her puppy loss and was handling herself well. By Monday, (three days after the shootings) I picked her up at her apartment to spend our typical time together lunching and shopping. Her day staff was close to one of the families who lost a six-year-old and was attending a shiva (making a condolence call) to the family that very evening. Her face was a map of tears and we spent more time than we should have, sharing feelings and discussing details while my daughter walked in and out of the room, getting ready to go with me to lunch.
Bad Mom: If my memory serves, in the car she said she didn’t want to hear about all that sadness anymore. But when we got to Target (ironic name here) I immediately spotted the Newtown families who with their children of all ages – only Newtown schools were closed that Monday – looked dazed as they wandered through the aisles, some of them teens wearing sweat shirts with Newtown High School printed on the front, all trying to avail themselves and their children of some small measure of normality in the face of the horror that they and their town would forever be branded by. Finally, bumping into acquaintances, while my daughter toured the store in search of a variety of items, I began to have that exchange that serves as a temporary port of call from the loneliness of carrying the weighty emotional pain inside us. At that moment, my daughter returned to my side, lingered then wandered away. At check-out, I ran into a close friend who has young children, and once again the ritual of emotional exchange ensued. By the time we walked out of the store, my daughter was miserable. “I’m sick of this sadness stuff.” And I knew that once again I was the “bad mom.” I dropped her off with her staff feeling like sh-t. Will I ever learn? I had indulged my need at her expense. Again! I didn’t honor her wishes. And the added sting of guilt is that I am often accused of appearing to find pleasure in the sharing of pain. So though others may say that this was different, after all, it was Newtown, in some ways for me it tapped a familiar flaw that I wasn’t happy to see revealed again.
Life Continues: But if ever they were a time when personal preoccupations seemed trivial, this was it. I did visit Sandy Hook a few days later. And heard of more friends who were close to families of loss. Of a grandparent who had been our children’s wood shop teacher who lost his granddaughter. Of the psychologist who had worked for a short time in our school system. This was not only close to home but in our hometown. But no matter, little children, all children are our children. If we as a people truly embraced that belief, we would be a better world. Of that I am sure.
A Different Heart: Back to my small world, according to her staff, our daughter quickly recovered from the momentary setback of the time spent at Target with mom. Her life at her CRS (Continuous Residential Support) is thriving even with another staff change and a review of her medication (apparently the positive effect of her low dose of Focalin has waned) is looming. But despite these challenges, our daughter continues to thrive, loving her three volunteer jobs and the many social activities that are abundant in her life. She rides with Pegasus, works out at the Park and Rec, is learning duck pin bowling (never could handle the regular version, small hands), makes jewelry with her Sphere group each week, went to the Museum of Natural History in NYC with her dad and still has a friend boy whom she converses with daily and sees occasionally. And she finds ways to honor her Waggy that match her style of emotional experience. The first few days after the loss, she would say to me, “I am still feeling sad.”
Last night I learned that as part of a Valentine project designed by a creative clever staff member the apartment-mates made small paper hearts each with names on them to be assembled together as a wall design. One of the hearts has Waggy’s name on it. As the project coordinator wisely said to me, “(our daughter) has her own way of experiencing emotion.” She is not consumed with her loss nor seeming to be openly grieving. But every so often the old spark of acquisitive inclination gleams in her eye. A few days after Waggy’s death, she text me that she had a dream that we got a PWD puppy who was black with white polka dots and a white chest. Hint Hint. On Facebook she rapid fired a question about a post of mine that vaguely alluded to a spot in my heart for another pooch. If she were still residing with us and this remained her bridge to the outside world, that puppy would be on order in a nanosecond. As it turns out, the price has gone up (maybe because of Bo Obama but it was never an inexpensive breed) and the waiting list from our breeder is over a year and includes a hefty deposit. And life is different now. I am not the primary engine of my daughter’s social world, at all. I am not even a wheel. I am just simply mom. Whew!
Newtown: Loss is in our backyard. Our community and state are consumed with the green ribbon imagery of Sandy Hook. Rightfully so, though tough on the inhabitants of Newtown. To any who are living this loss, my heart is with you and my hope, along with so many, that these losses will serve to create gains in the quality of life for all our children, and inspire confidence in families that someday they can send their children out into the world knowing for sure that they will come home again. As a special needs parent that worry held my heart for decades. And yet I found the means to empower myself, with the support of many others, to reduce that worry. But for the families of Sandy Hook, represented in the hearts and minds of every parent of school age children everywhere, that journey is just beginning. Fingers crossed you will all get there too.
©Jill Edelman, M.S.W., L.C.S.W. 2013