The Couples Tool Kit
Working together as a team of three — by Jill Edelman, M.S.W., L.C.S.W., Specialist in Couples TherapyArchive for parents of special needs
News, and a Special Opportunity for My Readers
Dear Readers, as you well know, it has always been my intention to use my journey as a parent whose special needs child was “aging out of the system” to help others who were not yet on that path, or even as perspective for those who were. This was primarily because there are few, if any, guidebooks for a journey like this. (In fact, within days of my beginning these posts, Parade magazine carried an article about “aging out of the system”, recognizing it as a relatively new and increasing reality for so many of us.)
At some point along the journey, I began to be asked, “Are you planning on turning this into a book?” And while that was certainly not my intention when I started out, it began to grow on me that if I wanted to help others, a book made a lot of sense.
I am currently in the process of gathering these posts into a book. The final form is still under development, but it will be an e-Book, available for Kindle, Nook and iBooks, with a print-on-demand capability so that people or organizations that want hard copies can have them.
One thing the book allows me to do is to incorporate artwork and collages throughout that were created by our daughter. She is quite the artist, and the collage we have chosen for the cover is, in the words of one person involved in the project, “Better and more evocative than anything we could have asked an illustrator to come up with.”
My blogger guy and marketing guru has suggested that it is appropriate to offer you, my dear readers who have come along on this journey with me, the opportunity to buy the book at a discount, and I think that is a great idea. We don’t know how much the book will sell for yet, and we certainly are not ready to offer it for sale.
But with this series of posts ending, he felt that we should tell you about it before you moved on and we all lost touch with each other.
If you would like to be notified when the book is available, and to be given a discount on the book, please email me and let me know. And when we’re ready, I will send you an email letting you know the details.
©Jill Edelman, M.S.W., L.C.S.W. 2012
A Humbling Journey with Warts and Blemishes for All To See: Part 2: 3-27-12
Jeez What An Adjustment: Since our daughter moved into her CRS on August 1, 2011, I have struggled to define the parameters of my role as mother in the new order. The fact that as of July 1, 2012 our daughter has become the responsibility of the State of Connecticut and a client of Ability Beyond Disability who manages all aspects of her day to day living, while her parents, the legal guardians, live just eight miles away, has proven to be a challenging adjustment for me and one that revealed my many warts and blemishes for all to see. One could say that it has been a humbling journey.
Captain of The Ship: As the primary engine powering much of what has culminated with the successful launch of our daughter’s adult life, my focus over the two decades was not on my journey but rather on getting our daughter to her destination, and of equal importance, the impact of that journey on our other precious child, her brother, as well as my husband, our marriage and the family as a whole. Throughout these twenty plus years the message that I distilled from other parents, underscored by experience, was, “You are the expert on your child and her best advocate. Never leave anything solely up to others. You must be there at every turn.” It was up to me, as the designated parent who was in the trenches with our daughter day to day, to bring her to a place of safe happiness in adulthood, to protect her brother’s childhood and future adulthood and with my husband to provide some sort of safety net around our children, to the best of our ability, for the day we were no longer around, a goal common to all parents.
Unending Support: I was not alone in this journey. I have always had the unending support and wisdom of my husband, who handed over to me the power to lead the journey and the confidence to trust myself. I have been the grateful recipient of the unfailing love of extended family, and the excellent guidance provided by educators and therapists, angels and aids. But I learned in those first years, partially blindfolded by ignorance and stumbling in the dark, that I had to captain the ship and determine its course at all times. This role of “leadership” was new to me. The youngest of three girls, I had always taken direction from others. Now I had to determine direction for someone else where the stakes were so high and the terrain completely alien. This was my first major adjustment as a special needs parent and now, with the shift to parenting a special needs adult, has come another very complicated adjustment, which almost required unlearning all that preceded it.
A Guest In Our Daughter’s Home: Posting for “Parenting Adult Special Needs: One Day At A Time” these twelve months has yielded an unexpected and often startling window into a raw and often unattractive view of myself as I shifted from Captain of my daughter’s ship to being a Guest In Our Daughter’s Home. Sometimes I felt as if the last twenty years of training to be that ever present and alert parent of a child with disabilities had created a monster, a Mrs. Frankenstein of the special needs kingdom who made folks tremble when she came into view. All my warts and blemishes were on display as I shot off email after email questioning a minor lapse in our daughter’s care or schedule, some slippage or miscommunication related to a volunteer opportunity or a doctor’s visit.
Losing Control: Who is this nut? Yet I knew, and other special needs parents’ reminded me, this is being your special needs daughter’s mom. True. But also it was a kind of post-traumatic stress disorder, also typical, I believe of parents like me. Twenty plus years of living with what could go wrong, and often did, dramatically, leaves tracks embedded in the visceral memory and as with PTSD, (I know, an overworked diagnostic category these days) at any moment, something in the present can trigger a reactive perception that the past is happening again. I was losing control of our daughter’s destiny and that filled me with anxiety, and I needed time to make that O.K.
Reality Again: There were many startling moments when that reality began to materialize. One of the first was when our residential coordinator diplomatically informed me, in anticipation of our daughter’s moving into her apartment, that it was best to call ahead and clear the schedule with staff before visiting our daughter’s home. We were now “guests in our daughter’s home” and required clearance; no pop-ins. We had married her off to ABD and the residential staff were a kind of spousal entity. I understood immediately. This is the respectful and appropriate behavior for any parent when their child moves out of the parental home into their own abode. As always, there was relief too as this boundary, parameter, marker was clarified. It freed me from some of my responsibility.
A Burial Plan? Another visceral pang of parenting change came when the same administrative staff person asked if our daughter had a burial plan, which was simply a question related to identifying any funds in our daughter’s name, which, if not handled properly with full disclosure, could jeopardize her entitlements. But it raised in me the question, who decides her final resting place, something I had actually never even thought about. The state? Her guardians? Yes, her guardians, perhaps a spouse even. Adjustments and a reality a bit too painful to integrate quickly.
The Blurred Edges of the Mother’s Role: There was much that wasn’t clear over the twelve months. The other mom and I picked out the apartment for the girls to reside in, as this was not a group home but a CRS (Continuous Residential Support), which allowed us to do so. We even have our names on the lease and went with our daughters to select the furniture that would became the bones of the home, set its decorative tone and represent our mutual tastes. However, once the girls moved in, it was staff who added the accessories, picked out a rug and curtains, initially asking our permission, and in fact, actually trying to help to take the pressure off of us. Yet it remained confusing. What if I didn’t like their choices? But if our daughter did, it was really no business of mine now. And then, who sets up doctors’ appointments, goes to the appointments? When do the parents get feedback on those appointments if they are not present? When should we visit our daughter, or set up dates to see her? Whom should I speak to about “issues” that our daughter has texted me about it, or called me in distress to register her anger or hurt? With the day staff who are present when I call or visit, or their coordinators? Do I try to find volunteer opportunities? Can I really leave it to others?
An Intensive, Microscopic Instrument of a Parent: Was the other mother like me? I don’t think so. So was it just me? My personality warts and blemishes surfaced, revealing myself to be a mom I often did not like: interfering, judging, stressed out and demanding. Ugh! What was the heart of the problem? I think I now know, after eight intensive months of adjustment – trust! As I wrote in an earlier post, it takes time to build trust that others will be knowledgeable enough about your child to keep her happy and safe, something I have attempted to do these last twenty-two years. And believe me, I have never felt “perfect” a day in my life, never. So did I expect “perfection” from them? No, but they did not know her as I did and that worried me. How long would it take them to know her? And would they feel what I have felt all these years: committed, determined and devoted to her care? Specials needs children require a fairly intensive microscopic instrument of a parent/persons to do the job well. Were these people up to the task? As it turns out, thankfully, they are!
Finally, Why Am I Writing About Me Here? These posts were written for the parents, are about “Parenting Adult Special Needs”, the parents’ quest to bring their child to the threshold of adulthood, safely and successfully. That has been the focus and purpose of the posts, and has led me to draw an honest picture of one family, one child, and most personally, one parent’s perceptions and experiences of that journey. I have been accused during this process of being too “I” oriented, selfish and narcissistic, and falling short of being the caring and devoted parent that a special needs child deserves and requires. I can understand how some pulled out that image of me and though it didn’t feel good, it felt honest and fair. I have behaved at moments insensitively and unfairly to others and I have apologized with sincere feelings of regret and remorse. But I know that when I felt threatened that our daughter might not be sufficiently protected, though my fears proved unfounded, my primitive response was fight, not flight. The stakes are high when you pass your child’s destiny over to others, for the rest of that child’s life. This was no summer camp or boarding school. This was adulthood; though not set in stone, still she was out of our arms and into the world, just like that!
Being a parent or a parent of special needs doesn’t mean being pure, always sacrificing and self-effacing. It just means striving to be the best you can be for that child, while still being a person in your own right, your own skin, with the weight of baggage from your pre-parental life in tow. We don’t come into this parenting business free of personal imperfections or inclinations. No way. It is an often heard yet ridiculous notion that just because you parent a special needs child that you are a saint or need to be one. My wish is that these posts have provided a practical template for a parent to use to aid them in their child’s journey, a portrait of sorts presented with all the warts and blemishes that make up even special needs parents, imperfect mortals that we may be.
Thank you all for taking the time to share our journey. The journey continues and may in fact bring me back to posting on it in the future. But for now, Adios.
©Jill Edelman, M.S.W., L.C.S.W. 2012
A Note from Jill’s “Blogger Guy”: This concludes the series of posts, Parenting Adult Special Needs One Day At A Time. We want to thank everyone who took the time to share Jill’s journey with her. Please check the blog tomorrow for a piece of news we hope you will find both interesting and exciting, and maybe even a little bit rewarding.
A Year’s Journey From All Sides Now: 03-26-12
All Sides Now: There is no easy way to end this series of posts on parenting adult special needs. Do I summarize, itemize, measure growth, anticipate challenge or celebrate accomplishment? Do I thank and applaud or alert and inform? Shouldn’t I be doing all of that? My hope is that I have done all of that during these twelve months of posting on our journey.
This is a story about one young lady who turned twenty-one in November of 2010 and aged out of her Connecticut school district that following June 2011, and her family as we made our way out of the child’s special needs world into the world of adult special needs, a day at a time. In the twelve months since these posts began, a thriving adulthood has been constructed for our daughter by a team who monitors all aspects of her daily life – a dedicated team who has seen our daughter from all sides now.
Never Static: And even as I try to summarize a year of effort, this team is busily at work improving on the model they constructed: new vocational settings are being screened for better hands-on opportunities and training; a book club component, suggested by our daughter, is scheduled to debut this coming week at the DSO (Day Services Option); a trial of a small dosage of the medication Focalin, to aid focus and increase job success, will be inaugurated next week with careful monitoring, this after extensive blood work measuring thyroid and other functions came back normal; the first weekend away as a CRS (apartment-mates and two staff) is scheduled in April to Mystic, CT. This is the proverbial “work in progress” model with no static “mission accomplished” endgame.
Increasing Independence: Adjustments and fine-tuning hopefully will remain a critical component of programming in response to our daughter’s maturing in the decades ahead. The goal of increased independence is a staple of the special needs world and spelled out in document after document over the two plus decades of our daughter’s life. But there are areas of dependency that may not change, ever. And by definition that is the meaning of the term “special needs” or “disabled”. Our daughter does not wake up to the fire alarm – ever. And, when alerted by staff to follow the protocol for the fire drill, she is resistant. Our daughter still looks at the ground when she walks through a trafficked area. How many years might it take for her eyes to scan properly and her brain to decide safety accurately? For a fire alarm to awaken her in time to follow the exit plan out of the building? Increasing independence is a goal but safety is the undisputed necessity for our daughter’s future.
A Good Decision That Hurt: It was only a year ago this March during spring break from her boarding school that our daughter and I had a conversation about the decision to end her post secondary education a year earlier than her peers and bring her back to her home state. We were in the car and she burst into angry tears telling me in no uncertain terms that it wasn’t fair, and it wasn’t her decision and it wasn’t right that we didn’t consult her when making the final decision. I was waiting for this moment.
Emotion Trumps Preparation: The last year and a half leading up to this discharge of feeling, our daughter visited residential settings, attended interviews with potential service agencies, raising questions about where do the kids live and what activities do they participate in. She met several times with her case manager, and had regular visits with her school guidance counselor to discuss her feelings about leaving school and moving toward “independent” adulthood. She even participated, at her request, in a support group whose purpose was to share feelings about leaving school in June. Since the Thanksgiving before this, she had been spending time with her future apartment-mate whenever both girls were home from their boarding schools, the families becoming acquainted as well. In fact, she used the phrase over and over with anyone who asked what her future plans were, that she was coming back to Connecticut because her parents could not “pay out of pocket” to send her for the third and final year of her post secondary program, Grow. And she understood what was happening.
The Reality of Loss: But all the preparation in the world is never enough to trump the reality of loss and the fear of change. Frankly, I was glad to see and hear her powerful expression of pain and outrage. It reminded me of when her brother was two and one half and attending sibling class at the local hospital to “prepare” him for brotherhood. Well, it didn’t prepare him, no matter how many dolls he held or how much teachers claimed he enjoyed the baby room at his twice a week daycare. When the real thing arrived, he was just as happy to leave her at the hospital or drop her off in the garbage on the way out, both feelings he expressed to mom and dad. Reality of change or loss, no matter how much we think we are ready for it, can sneak up on the best of us.
I agreed with our daughter on all counts, twisting in my own emotional tangle of guilt while simultaneously celebrating her clarity and honest expression of the injustice of it all. I was sincere in my expression of empathy for her pain, and together we came up with a plan to meet with her case manager and the director of her future ABD program so that she could tell them some of her feelings. And we did that the next day, which helped mightily to further forge a bond of trust between her and them.
The Wheels Were Rolling: And though I felt almost cruel, the wheels were rolling forward because they had to, timing was critical to allow our daughter to receive the optimal funding for residential support and if we waited another six months, even that opportunity, and this has proven to be the case, would be threatened. She was twenty-one and on July 1, 2011 she would officially “age out” of her school district and be just another special needs adult who was seeking housing and funding for services. At that moment she was at the top of the list for priority housing because she was returning to her home state after five years at boarding school, but six months later, she would tumble down the list to who knows where. This was the indisputable fact that ordered all my thinking, no matter what other longings were in play.
Transition To Adulthood: I have no regrets here. Our family received excellent advice and that grounded us in our determination to make this move happen immediately. What has strengthened that feeling is seeing how quickly our daughter has adjusted to her new life. As we had hoped, our daughter’s transition has been remarkably smooth because fundamentally her new life is more similar than different from her previous life.
The Plan Worked: Attending boarding school for five years, beginning at age sixteen, (the last two years for the post-secondary/vocational component), and prior to that four summers of sleep-away camp, begun at age thirteen, were preparation for this moment. All this planning that went into easing our daughter into “independent living” over the eight years, seems to have paid off. The structure provided by Ability Beyond Disability with 24/7 staffing alternating schedules, the daily programs, non-negotiable routines and residential life with peers, replicated the atmosphere and expectations of boarding school life. Both our daughter and her apartment-mate and their families had experienced the wrenching jolt and adjustment of separation years earlier so that trauma, quite frankly, was long past. And the young ladies have experienced only two bouts of significant interpersonal conflict so far, the first marking the end of the “honeymoon phase” this past Fall and lasting twelve hideous days, and the most recent, a mere two days last week. Their mutual compatibility is partly because they actually find living with just one other female a stark and relieving contrast to the “drama in the dorm” atmosphere of multiple females inhabiting one “home” that marked their boarding school years. This cohabiting, in contrast, is a “peace” of cake.
The Surprise: Our daughter’s adjustment to her new life has been swift and relatively smooth. She has never complained about returning to Connecticut since that Spring Break car ride a year ago. She has never asked to return to her boarding school though at times she speaks of missing her friends or the Cape. When questioned by family or friends on how she feels living in Ridgefield, Connecticut her answer is immediate and consistent “ I love it.” No, it is not our daughter who had a difficult adjustment to the new life. It was her mom.
Part 2: Tomorrow I will post on mom’s adjustment, one that was not so smooth. A journey for which I was not prepared, and one that I hope to make easier in some ways for others, simply by relating my own tale. Stay tuned and let me know what you think.
©Jill Edelman, M.S.W., L.C.S.W. 2012
Closing In On A Year & Building Trust: 3-12-12
March 30, 2011: In a little more than two weeks it will be a year since the first post on Parenting Adult Special Needs: One Day At A Time. Last week our daughter’s entire team of staff members from ABD (Ability Beyond Disability) and her DDS (Connecticut Department of Developmental Services) case manager sat down at a conference table with our daughter and her parents to review the last seven months of residential, Day Service Options and vocational placement. (The meeting was originally planned for the prior week but a brief snowstorm caused a cancellation.) The meeting began with our daughter presenting her views on the last months, including likes and dislikes. She was unequivocally positive about her apartment-mate and staff, their many outings, which included going to the Museum of Natural History, the Bronx Zoo and an upcoming overnight trip to Mystic, Connecticut. Regarding her vocational life, she was less thrilled with the cleaning chores that accompany her volunteer work at ROAR and The Complete Cat Clinic. Following our daughter’s presentation, staff and parents engaged in a review of vocational options, residential strategies, and day services activities, exploring with our daughter her preferences for future programming. A thick packet of write-ups from each of the coordinators of the various groups was handed to my husband and to me. Later I read through the packet, which revealed that staff had a good understanding of our daughter’s workings.
Coming Up: Residential and vocational staff have come to know our daughter well. Based on their knowledge of her strengths, staff is looking at job settings that tap into her substantial social skills, as well as her love of animals. Since that meeting a possibility has been uncovered at an animal daycare that might afford her more hands on time with the animals and more social interaction with customers than is available at her current sites. She is also invited to assist in leading a tour of potential client families visiting the ABD headquarters next month. In addition, she and her apartment-mate will greet guests at the ABD Gala on April 28th, and will be staying for the evening. Our daughter is familiar with formal fundraising galas from her years at Riverview School, which hosts hundreds of people under a gorgeous tent on the campus. She is so savvy that she asked if the ABD Gala was having a silent auction. (They are.) Nothing passes this girl’s notice.
Book Club: What is also clear is what is hard for our daughter. Especially at Day Service Options, which is the social group she attends two days a week. During the winter members often bowled, played board games and cards, all activities that are very hard for our daughter. My husband and I offered ideas such as having a group that views films together, followed by an informal discussion, something our daughter is skilled at, critiquing theater and film, talking about characters and plot. When asked by her father what sort of programming she would like to do with her peers, she said “A book club.” What a wonderful idea. She reads well and particularly enjoys biographies. There is a series of fourth and fifth grade level readers that include the life stories of historical figures ranging from George Washington and Abraham Lincoln to Helen Keller and Rosa Parks. Our daughter has read many of them and can be a member in a lively discussion which could incorporate the very world around them. Living in a colonial area where a revolutionary encampment took place (Putnam Park), field trips could be taken by the DSO group based on their readings. Helen Keller lived for some time in the town of Easton, which is close by. And Mark Twain, aka Samuel Clemens, built a house and resided in our daughter’s hometown of Redding two years before his demise and founded the town library, The Mark Twain Library.
Future Education: Our daughter is clear that she would like to continue her formal education in some format and staff have agreed to look for or create learning possibilities. Their understanding of her drive to learn and their wish to help her accomplish this is a hopeful sign. Not only is our daughter maturing, but this agency as well is reaching out and expanding to meet the needs of its new “age-outs” in impressive ways.
Building Trust: Starting last Spring, our family has been dependent on ABD to create a world of safety and stimulation for our daughter. We are almost a year into signing over responsibility for so much of our daughter’s future to them. This has been hard for me as her mother. Trust takes time to build and though our daughter felt comfortable almost immediately, with transient moments of dissatisfaction, for her mother this was a slower process. This past week I have reviewed my own journey and can say that trust, though a living thing and open to change, has been established. The ABD staff understands how difficult it is for families to “let go” when for decades they have been the lynch pin that holds their special needs child’s life together. There is no question that they have earned our trust through their professional and very personal care and dedication to our daughter. And though we have given others responsibility for the care and safety of our daughter before, both at sleep away camp and boarding school, never was it so inclusive and “legalized” and never was she so close to home that the ambiguities of our roles were a source of confusion. Distance adds a kind of clarity that proximity does not offer.
The End Of The Era Of Transition: My next post, on Monday, March Twenty Sixth, will be the last for this series of “Parenting Special Needs: One Day At A Time.” In the meantime, I hope that if anyone has thoughts they would like to share, please do so on the blog. All comments are welcomed. The transition from parenting a special needs child to an adult with special needs will continue but the first leg of the trip is certainly over. Thank you for accompanying us on it. And please check in on my final post in two weeks.
©Jill Edelman, M.S.W., L.C.S.W. 2012
Two Ladies About Town: 2-20-12
A Pekingese Named Malachy: Our daughter and I had a grand time in New York City last Monday and Tuesday. The Westminster Dog Show was a “hoot” including the “best in show” Pekingese” Malachy, who we were lucky to view in the toy group Monday evening. Our daughter compared him to a “walking mop” and to me he resembled a mop on wheels or a very short Cousin It (from The Adams Family). Cute little duster.
Amazing Growth: Our daughter and I are great city walkers and talkers – being able to multi-task the chatter and the matter along Fifth Avenue and Central Park. Though I never for a moment lose sight of her or relax about crosswalks or crowded sidewalks, there is a kind of repartee that touches on the sophisticated as we stroll along. She was in great spirits and the day after the show we visited her brother in his office near Park Avenue and, at her suggestion, toured Central Park on foot. Twice a man holding a clipboard asked us if we lived in the city, obviously looking for signatures in support of one cause or another. And twice our daughter answered, “I wish I did.” She mused aloud, “When I am single I want to live in the city.” Really? Single? But you are single. I love how she absorbs the pop culture. This sounded like something extrapolated from an episode of “Sex in the City.” Single here means something other than “not married” to her. I am not sure what it might be and she couldn’t explain it; perhaps “all grown up.”
Sharing So Much: Our drive back was spent listening to Tony Bennett’s new duet album and sharing views on the voices of Josh Groban (mutual admiration for his vocals) and Lady Ga Ga, Amy Winehouse, Carrie Underwood, Andrea Bocelli: she knows them all. We share so many interests, some I inspired, others she inspired. In a safe and secure environment, we are great friends. When that environment shifts and I become “the mothering one” the ease and friendship takes a back seat. Normal, I know.
The Moments I Regret: Something of that nature had occurred upon our return to my niece’s apartment after the dog show. It was very late at night and we were both spent. Yet our daughter, who apparently got some toothpaste on her pajamas, decided to wash them in the clothes washer. I only learned of this plan after she had placed the PJ’s in the machine and started it up. She learned how to do her laundry at boarding school and often does it in our home when she visits, as well as in her apartment. I know that she takes pride in having achieved this skill. But this was a different machine and it was almost midnight. So I reacted impatiently, which upset and agitated her, when I opened up the machine where sat the clothes and some liquid soap minus the water. I was not eager to work a strange machine in a NYC apartment with many floors below that could suffer from leakage, though I did try at first to do so. But rather than push it, I gave up. We had some words but ultimately she slept in my PJ’s and I managed in a tee shirt, with the plan for her to wash the toothpaste-spattered top when she returned to her apartment.
I Believe In Apologies: Most of the time I apologize for my tone and impatience. I was so tired that night that I can’t recall if I did so. By the morning, we were fine together and had that great day walking in the park, talking Tony Bennett, visiting her brother, and lunching at the former Rumplemeyer’s on Central Park South, a tender childhood memory of sundaes and stuffed animals with my mom, which is now, sadly, a sports bar and restaurant. But I believe in apologies. And forgiveness. We all do in our little family. Our daughter often apologizes for moody moments and is forgiving though she will forgive only when she is ready. Her often-used refrain is, “I am not ready to forgive him/her yet.” But she gets there. We are a family that tends to own our mistakes without paralyzing shame or blame. That is the upside of the downside of being imperfect: knowing how to take responsibility for it.
The Advantage of Distance: I don’t like being the impatient, irritable mother who forgets to use problem solving skills or empathy. These types of encounters, where our daughter’s cognitive issues clearly play a significant role, and I react badly (I don’t even recall now what I said but it was obvious I was annoyed), make me feel guilty and disappointed in myself. I need my own red flag to signal, “Take a deep breath before you speak.” Living together full-time, until our daughter was almost seventeen, constantly set up such challenges for years and years, causing a lot of self-recrimination and puncturing big holes in my self-esteem as a person and a parent, along with ample bucketfuls of guilt. Which says that for me, the hardest part of parenting special needs was feeling that something I was failing at was causing our daughter harm, to her self-image and her self-esteem. When she went off to boarding school, and now living one town over, we are still close but with some distance, I can monitor my frustrations better and am less challenged as a parent.
Responsibility Is In The Details: Is there any difference in what I have described between a special needs parenting situation and a typical one? Well, if there is, it rests in the details and the level of responsibility. A special needs young adult is a more dependent individual. Why else the designation? Therefore the parent or guardian has more levels of responsibility. When I walk down the streets of Manhattan with our twenty-five year old son, I do not need to monitor him at the crosswalks. When he comes home and does his laundry, I am not double-checking anything. When he makes a new friend on Facebook, I don’t have to be concerned as to who this friend is. There are so many differences. Therein lies the rub. More responsibility, more concern, more likely to feel anxious, more potential “moments.” It is just that way.
©Jill Edelman, M.S.W., L.C.S.W. 2012
Heading To The Dog Show: 2-13-12
Westminster Here We Come, Woof Woof: Today our daughter and I head to Madison Square Garden in New York City to see the 136th annual Westminster Kennel Club Dog Show, a long awaited second visit to this country’s pre-eminent canine competition. And we are psyched. Our daughter has already previewed the Monday night line up and shared with me that among several new breeds introduced this year at the show is the American English Coonhound, descendant of English Foxhounds bred in Virginia, and the Cesky Terrier, from the Czech Republic with the personality of a “shy terrier” and a resemblance to a Miniature Schnauzer. As always our daughter’s swift access to Internet information awes me. No sooner had she popped up the screen on our home laptop computer than she had the breeds and their origins at the tip of her tongue.
Making Life Richer: Our daughter has enriched our lives greatly as a result of her omnivorous curiosity. After exposure to horses at age three while watching her six-year-old brother ride, she fell in love with the giant creatures and through the years poured over books filled with photos of horse breeds. I recall the moment that I recognized the developmental leap in her spatial awareness when she first noticed just how big these animals are, refusing to get on one for the first time ever. Despite this she never lost interest in watching them and continued to visit the local riding school with me several times a week. Eventually she overcame that initial shock and fear, and asked to ride again (which, thanks to the Pegasus Therapeutic Riding Program, she does to this day). She was a middle-schooler. I remember the poster we tacked to her bedroom wall filled with illustrations of the most common horse breeds, Appaloosa, Andalusian, Quarter Horse, Morgan, Paint and so on. Dogs were another four-legged passion which brought her to libraries covering five nearby towns where she would settle herself between the stacks and flip page after page of dog photos closely studying the characteristics of individual breeds (this was prior to easy access to sites on the computer), learning the class designations: working dogs, sporting, hounds, the terrier group.
Ain’t Nothing Like The Real Thing: As she acquired greater reading skill, and computer skill, thanks to the services provided by her school district, her knowledge base expanded exponentially. Yet not satisfied with the paper or online version of animal types, she sought out the real thing, in parks and at stables where she interacted with both dog owners and members of the equestrian world, chatting them up with questions and impressing them with her knowledge. Therefore her curious mind facilitated her social development mightily. And of course, as her companion, chauffeur and escort, I learned a ton too. Having a keen visual acuity and memory for physical characteristics, a talent she shares both with her father and her brother, our daughter has the ability to distinguish members within a particular grouping or breed based on shape, coloration and more subtle factors such as ear shape, markings, snout, that I find illusive. Her attention to detail when stimulated is awesome. I do not share this talent for visual awareness and so am in constant awe and grateful enrichment for being able to view these worlds through my daughter’s far keener eye.
Far-Reaching Appetite: Our daughter’s hunger for knowledge reaches beyond canines and equines to rodents, amphibians, snakes and celebrities, impressionist artists, cooking shows and comedy series, Seinfeld, Big Bang, Family Guy, CSI, World War movies, romantic drama and medical and nutritional videos, musical theater and film. Wherever we are, if there is a flyer or pamphlet available, she picks it up and peruses it. In fact, there is very little that doesn’t hold some interest for our daughter, few areas of life in which she has no knowledge. Ah yes, team sports might qualify as one area of little appeal. But that could have changed if she were raised in a different family, or if she begins to hang out with some Giants fans now.
To facilitate these cravings for knowledge we owned many of the objects of her interest: at ten she got a dog; for almost seven years we housed a rat named Doris, and later one named Jenny who lived in the dashboard of the car for two weeks until she escaped on the pier of the Port Jefferson ferry; a white mouse; a hamster; guinea pigs who birthed more guinea pigs; fish and frogs and turtles in our own self-sustaining tiny ecosystem of a pond. We visited, and still do, museums, the theater, nature centers, horse shows and stables. She had an able body of people, a team, also known as a family, to make for a hands on learning experience, as much as possible.
A Fine Mind: What kind of mind is this that craves learning and stimulation and utilizes that learning socially, appropriately and impressively? A very fine mind and one that reminds us all that “special needs” or disabled, as a designation or description of a human being reveals nothing about the assets or abilities of that individual. Society needs such designations and they serve a useful purpose for allocations of services, support, patience and funding for research. But one must not use them to dumb us down to thinking, “This person has little to offer me or the world.” Quite the contrary. This petite person has enriched their worlds for many, especially those closest to her, and continues daily to do so.
A Multi-Dimensional Gift: I view children as a gift. They make us so much more than we would be otherwise. That loop of love at its deepest level enriches the human experience unlike any other. And this daughter is the gift that keeps on giving. It is doubtful that I would have attended a dog show or a horse show in my life were it not for this “gift.” Nor would I have appreciated the humor of endless slapstick moments, or men dressed as women, or dogs dressed as men and so much more. And now we are off to the dog show, six years since we last attended as guests of my sister. Six big years during which time our daughter moved mountains, leaped tall buildings, lived at a boarding school, graduated, aged out and returned to her home state to set up adult life one town west of her childhood home. We are back to Westminster, accompanied by friends, and so much has changed, so many fears for the future have waned. This will be a great show indeed to share with our daughter and to celebrate the outstanding young woman she has become.
Follow-Up: At my request, our daughter’s team sent me the medical documentation from her ophthalmologist visit last week. I have yet to see the glasses. When I picked our daughter up at her apartment Friday to bring her home for a birthday dinner with her brother, she did not bring her glasses. Today she stopped by to drop off her overnight bag on the way to DSO (Day Services Option.) We saw no glasses. Perhaps she has them in her purse. If so, I am interested to learn if she notices a difference and eager to see how they look on her face. Maybe they will enhance her viewing tonight. Her double vision is related to muscle fatigue so if her eyes get worn out by ogling the pooches at the show, she can pop them on for better “viewing.”
I will keep you posted.
©Jill Edelman, M.S.W., L.C.S.W. 2012
Leap Year: 1-30-12
Six Month Review: How symbolic that the Connecticut Department of Developmental Services (DDS) has scheduled our daughter’s six month review on February 29, 2012, Leap Year! It will be six months since the August 1, 2011 move to her apartment in Ridgefield that has become her adult home. Leap indeed. What has transpired in these six months seemed like “The Impossible Dream” a year ago, a dream that only a Don Quixote of a mother could believe would come true.
What Does That Dream Look Like Today? How do you paint a picture of a dream? How do you match the paint colors with the images of the mind? Maybe Salvador Dali could answer that question but as a non-painter yet a committed dreamer, I can vouch for the fact that a dream can be transferred from the mind to the canvas of a life. Even when it is not your life. And that, so far, is what has occurred for this mother of a special needs child. My dream for our daughter has been realized in her world today. Imagine that!
A Typical Week: Our daughter’s “work week” begins at nine Monday mornings at her DSO (Day Services Option) program where a group of recently “aged-out” young adults attend six hours of social programming at Ability Beyond Disability’s Bethel, Ct. headquarters. At three o’clock our daughter then returns to her apartment and either exercises at the Ridgefield Park and Recreation Center with her apartment-mate and staff or attends another activity. (For a while she was attending a yoga class.) Tuesday she returns to the DSO where they might go bowling, attend a music class, help with volunteer activities or some other pursuit. Tuesday evening she and her apartment-mate participate in Angelfish Aquatic Therapy. Wednesday is errands and an apartment meeting with the behaviorist and other staff and a physical activity. Wednesday evening includes a special outing. Thursday is a vocational day where our daughter helps set up “chair yoga” at the senior residence Ridgefield Crossings with her vocational life skills staff. Thursday evening she participates in SPHERE, a theater program. Friday she goes to two jobs: ROAR, the animal shelter where she helps clean out litter boxes and receives training in how to care for the animals, and The Complete Cat Clinic, where she helps to groom the cats and socialize the kittens. Throughout the week our daughter does her chores, shops and cooks with staff who work with her to increase skills for independent living.
Weekends: Friday night is usually veg-out time at the apartment. Saturday she has her Pegasus Therapeutic Riding Program, though during the winter she attends their un-mounted program and has just acquired the skill of taking a horse out on a lead. Saturday and Sunday afternoons are replete in a variety of stimulating activities: going to a museum, a nature center, a flea market, theater, a fair or a movie. And interspersed throughout is quality time spent with her family, who both drop in to take to her lunch, or on an errand, or for longer outings to extended family functions, theater, whatever moves us. The ease with which she can be a part of our lives and we a part of her life delights us all in a profoundly meaningful way.
What A Leap: Does our daughter like her new life, and her new home, and her apartment-mate and staff? Totally. Have there been glitches? You bet. But what a leap from twelve months ago when all was a dream. I am aware that the perfection of this moment is not forever. Nothing ever is. But I can dream that the worst is over, that the formless canvas of her adulthood that rippled through our lives for two decades has filled in beautifully and will never be as frightening again. Fingers crossed.
©Jill Edelman, M.S.W., L.C.S.W. 2012
Typical Friends And The Cyber Social World: 1-9-12
Question: There are many wonderful friendships made along the special needs pathway both for our daughter and for her family. Devoted, kindly and generous souls who emerge via a variety of interfaces, and most last. But I have a question here. Have those friendships that grew out of typical peers helping their special needs classmates last into adulthood and on? I don’t anticipate an answer; rather, more of a discussion. Our daughter had some “typical” smart and loving peers from her one year at our local high school, though none from her years in middle and elementary school, before she went on to her special education boarding school. Seven years later, only one of those four is available for actual time together. Some of this is geography. But Facebook doesn’t require proximity nor does text and cell phone contact. Nope, I believe this is a matter of “difference”. At least in our case.
Unfriended: Is that the correct Facebook terminology? I believe our daughter has been unfriended by one of the two remaining typical peer friends from that earlier period. How do I know this? Not from prying but from her not commenting on a particular incident reported on my Facebook page by this peer that would have alerted and, in fact, been of concern to her. She said nothing, which was puzzling, so I mentioned the situation her friend was facing. She had no idea. I did my own search and saw that this name was no longer listed amongst her friends. Previously we had to remove the name from her “contacts” on her phone because she began texting a bit too much, which she understood, and agreed that…”taking temptation away is a good thing.” But the Facebook deletion, that could be quite confusing.
Requiring Translation: This is not the first such incident. The Facebook and phone texting world can be a challenge for a special needs young adult whose inclination to be unusually focused on someone can feel like stalking, inappropriate or embarrassing. On one occasion, a friend of our son told our daughter in no uncertain terms to stop commenting on his photos on Facebook. That angered her and hurt her feelings. I think it also embarrassed and confused her. She didn’t get it. Another “typical” peer did something similar but since she had learned from the previous young man, she weathered the second “rejection” with understanding. Facebook invites many mortifying moments for vulnerable teens and young adults. Perhaps mature adults as well. So I cannot say that a special needs young adult is alone in this mix. But there is a difference. Reading social cues or grasping implicit social protocol, cyber style or not, is very difficult for the special needs world. And now that this young man (and usually it is a male who inspires her most active communications) has dropped her, the teachable moment has arisen once again. It is not for lack of kindness or goodness on this young fellow’s part. Nope, it is simply from his experience. When he had an emotional crisis last year, our daughter texted him constantly and made what might have been embarrassingly sympathetic comments on his Facebook page. It is simply a practical and preventative measure to bypass further embarrassments. Hence, the unfriending. Alas, it is not so easy to teach the nuanced distinction between appropriate empathy and what might feel like over the top, awkwardly soppy comforting.
Social Fact Facing: Our daughter does not choose to read this blog. And though she has been invited to participate in it, she has not. However last week I asked her for some input for my latest installment and her response was “Saying Goodbye To A Friend.” That was her input. Again her focus was on a young man who was off to study abroad, a “typical” friend (most are her brother’s pals who get her and care for her, and for him best of all) whom she knew she would miss. This is what moves her. She will probably communicate frequently via Facebook while this fellow is abroad, though I imagine he will have little time to respond. Will our daughter discover that her other friend has removed her from his Facebook listing? I think so. Do I need to tell her before she figures that out? No. And maybe I am wrong, perhaps he is still there somewhere but I couldn’t find him. But when she does notice his absence on her page, we will have a talk. Probably she will have her own ideas about why she has been dropped. And from her own ideas, she can learn. That is the good news. And learning social nuances, whether in cyber space or down here on the ground, is necessary for all humans, isn’t it? Taking a page out of a social skills workbook for special needs is probably a good idea for everyone.
Painful Process? In earlier times, I felt more pained for our daughter when she hit the jagged edge of social transaction, with the subsequent confusion and hurt. Now I do see that she learns something useful from these rocky crossroads. Something, not everything, because as so-called normals, we know it is hard to walk in another’s moccasins, especially when our toes fall beneath their soles.
©Jill Edelman, M.S.W, L.C.S.W. 2012
Medication Rears Its Ugly Head: 1-2-12
The Holiday Season: We had no breakdowns this holiday. Our daughter spent Christmas weekend with us and New Year’s with her apartment-mate and staff and all went swimmingly! Well, almost all. She did have a bit of a setback that confusing Monday post Christmas when transitioning back to her CRS (Continuous Residential Support) life and a bit of a stomach bug conspired to create some tense moments. The usual gifting issues arose when an appetite for a new laptop case set off continuous text messages, exhausting an already super-tired mom, and finalizing several days later in a desperate phone call to the Vera Bradley store at a mall an hour and a half away. Transitions, as all parents know, can take the most resourceful children down, and special needs children find the shift from parental abode to school, dorm or new home particularly unraveling, even when the “home” is only twenty minutes away. It isn’t loss or homesickness per se that dogs the process. Nope, it is change, readjustment and reorientation. We all know what that is like.
Current State of Daughter’s New Life: We are now beginning the sixth month since move-in August 1 and a new calendar year. The machinery of daily living is rolling along nicely, with three volunteer jobs, loads of social and physical opportunities, and relationships with staff and apartment-mate in fine working order. One issue looms down the road: medication. Our daughter’s professional team has witnessed the impact of anxiety and attention issues on our daughter’s functioning and requested that we, her parents, review the possible benefits of medication. The relationship between anxiety and attention is the chicken and egg question that no one has yet answered. The week prior to Christmas my husband and I met with an Ability Beyond Disability psychiatrist (my husband is himself one of their treating psychiatrists and the two men are colleagues) to review our daughter’s status. For many years our daughter has been medication-free and the interplay of meds such as Ritalin, Wellbutrin, and others introduces that slippery slope that we slid down years and years ago, beginning in kindergarten and terminating in late middle school. Most medications mute down her sparkling personality, and though she becomes more focused, rob our daughter of her bouncy spirit and quick wit, intolerable losses. Some led to crashing moods. When younger and her behaviors took a more dramatic form, giant temper tantrums and refusals to go out to social events, the price was necessary to pay. Not anymore. That’s my position.
The New York Times: I had sent an email to the team reviewing our daughter’s past trials with a variety of medications as preparation for the meeting. The behaviorist and the residential coordinator met with us and the ABD psychiatrist. Wisely our daughter was not invited, as this was just a stroll down the medication lane without any plan to prescribe. It was the morning of December 21. The discussion was useful but I grew impatient with some of the dialogue because I have at the tips of my fingers complete recall of what ensued whenever our daughter was visited upon by some chemical cocktail, and though the psychiatrists know the chemicals, I know the kid. New medications were discussed and no decision, or even a decision to make a decision, ensued. The next day the New York Times, in their series on the treatment of the developmentally disabled in New York State, published an article chronicling the sometimes abusive use of medication in various facilities around the state. I am providing the link to the article not because our daughter is currently at risk for such treatment. She is not, because I won’t let that happen nor do I think anyone wants that to happen. But because it is happening to others, and the potential evil, even when “good” is intended, for medication abuse of the intellectually disabled is heartbreakingly real.
War Horse: Coincidentally, our family went to see the movie “War Horse” over the holiday, and the corollary for me of animal abuse and the potential for abuse of the intellectually disabled, or children, who cannot “voice” their distress or when they do, are not understood or seen as the authorities they are on themselves, rendered me in a painful puddle of tears and ambivalent about recommending the movie to anyone prone to such reactions. Of our family of four, I alone left the theater gutted, with reddened nose and eyes. But that is what mothers are for, isn’t it? To feel for those less powerful than we, and do something useful with that feeling.
Historical Concerns: There is nothing new here about well-intentioned educators, vocational or residential staffers suggesting that our daughter’s performance at tasks might benefit from medication. The last evaluation from Riverview in the spring of 2011 unequivocally recommended that the family review medication options. And so we are. But I am wary and wise from experience. Who knows? Life is long. Daughter has matured. And new meds are always on the horizon.
Stay Tuned To 2012 Parenting Adult Special Needs: One Day At A Time
©Jill Edelman, M.S.W., L.C.S.W. 2012
