The Busy Life Of A Special Needs Adult: 6-25-12

Swimmingly: In the last six weeks our daughter’s special needs adult life has been going along swimmingly, pun intended. She participated in Connecticut’s Special Olympics aquatic state finals, including spending two nights in a Southern Connecticut State University dormitory. She received a medal for her excellent riding (her “seat” as they call it) at the Pegasus Therapeutic Horse Show in May and attended a graduation party for a Riverview friend, which provided an opportunity to reunite with her Riverview chums. The setting was a lakeside cottage. She and her buddies leapt into the water, went for a boat ride, hugged each other, posed for photos, gossiped and joked — just like any group of former classmates reconnecting.

Parallel Parental Play: While our adult children schmoozed and swam, the parents, some strangers to each other, did what special needs parents do best: compared notes. Some of the parents whose children were still attending Riverview, not yet “aged-out” of their school districts, were in the throes of figuring out the next stage of life plans. Others whose children had graduated were describing current and future arrangements. The variety was noteworthy. The bulk of the families attending the party were from Massachusetts, which offers different options for housing than our state of Connecticut, something Massachusetts’ DDS calls “Specialized Housing.” One mother had just completed the requirements and received approval for just such housing for her daughter and four other female residents.  She had worked very hard for this and was excited to share the news.  Some of the classmates had remained on Cape Cod and were living and working with former staff from the school who had set up group homes in the larger Cape community.

There were a couple of families from Connecticut and one from New Hampshire, each with a slightly different game plan. Those families whose adult children did not qualify for services from their states’ Departments of Developmental Services have to seek elsewhere for funding, training and housing, which can be very difficult. As one mom put it so eloquently, in her state “Autism is not a disability,” and though her son is developmentally disabled in many areas except for his I.Q. score, he is slipping between the cracks, and heartbreakingly so.

Joyous Awareness and Pride: When my daughter and I left the party to drive the three and one half hours back to Connecticut, I felt joyous for her, for how much she has achieved in the twelve months since her graduation on June 12, 2011, when she said goodbye to her school years and returned to her home state to be an “adult.” There was no doubt at all that she felt proud of her achievements as well. She beamed and glowed when telling friends about her apartment and her “awesome” apartment-mate, where she lived and what she was doing. She also listened with interest to their answers to her questions about their new lives. She has matured tremendously in this last year and other parents described a similar process for their last year graduates as well. Each special needs adult at the party who was out of school for a year had a structured life, most living outside the parental home. All their families had been planning for this moment for years and so had avoided the regression that can take place when children return home for long periods, living without structure, slipping back into non-productive behaviors and habits. Though each family created a unique patchwork quilt of the special needs adult life for their child, you can be sure each one worked at it for years, worked hard and was motivated by fear, love, courage and determination. How did they get from there to here? Same way we all did. Working at it without relying on magic or miracles. Hard work and some luck too. For sure.

A Daughter’s Progress: A Follow Up: It is not clear if our daughter’s happiness, which is clearly on the increase, was aided by taking the drug Focalin but that seems to be the case. She has less anxiety in all situations and especially in areas where tasks and performance are required, or when transitioning from one activity or task to another, such as getting out the door in the morning to go to work. Both staff reports and parental observations share the same positive conclusions. She currently volunteers at three animal-related work settings: ROAR, the animal shelter in her town; The Complete Cat Clinic, a veterinary office; and Best Friends Pet Care, an animal daycare. Each setting is located in a different town but none further than a half hour from her apartment. She attends each setting with her life skills coach who provides direction and participates with her in completing the tasks. A fourth volunteer setting is in the works, and is also an animal-related placement.

Social and Residential Life: Her social life continues to expand including a new beau with date nights and telephone and texting exchanges. This relationship was the result of attending the aquatic practice classes for their Special Olympics participation. As with typical folks, doing what you like to do can produce just the right context for meeting a new love interest. The apartment-mate relationship just keeps getting better, which is partly the luck of a good match provided by DDS and partly the Ability Beyond Disability residential staff who know how to support each girl and the pair together. Their lives are filled with activities and a lot of exercise. Both have lost most of the extra bulk that dormitory living at their boarding schools had piled on over the years. In addition to swimming, walking on local tracks, working out on the treadmill at the Parks and Recreation and strolling to Main Street, their staff has cleverly managed to get a grant to install a Wii Fitness program in their apartment basement. These two young women will be at their bionic best, which relieves many health concerns that I had been experiencing in recent years watching our daughter’s weight gain and somewhat sedentary life in front of a computer screen, trying but helpless to impose the dietary changes that I thought were needed. Added to the workout equipment will be a crafts table where hopefully our daughter will be inspired to continue her awesome collage creations at an even greater pace. She is still a major movie buff and now it is hoped that she can create art or work out while indulging in her cinema passions rather than sitting on the red couch or at her desk, facing a screen.

Peace At Last: A new calm has come over the mother. Truly. And welcomed. I caught myself last weekend falling into some old traps and had to giggle at and celebrate that I managed to circumvent them. The first occurred when I picked up our daughter for our trip to New Hampshire. Once in the car, I felt a familiar worry, the typical spiral of anxiety: What if I get our daughter back so late, and she is all wound up and doesn’t go to sleep until midnight or so? And she has a date to go to the movies the next night. And the morning staff wakes her up at their usual time, early. Oh no.” I reached for my cell phone and placed a call to the apartment to ask the day staff to consider leaving a message for the overnight staff to let our daughter “sleep-in” as the expression goes. I heard my inner voice say, “don’t do this.” And when no one picked up immediately, I aborted the call. They know her and anyway let them figure it out.

Smell Test/Mayonnaise? My next test came when we returned to the apartment, and not that late either, at 9 P.M. The night staff was on, the very night staff that less than a year ago, I feared would not be awake enough or rested enough to take sufficient care of my daughter in an emergency in the middle of the night. She was very much awake, cleaning a bathroom, which she informed me that she wanted to do before the girls went to sleep because she knew they needed to “sleep-in” in the morning and she didn’t want to wake them with her cleaning sounds. See mom, they know daughter needs to sleep-in. You don’t have to tell them. Then we hauled out the leftover half a foot of my daughter’s Subway sandwich from the morning’s drive up to the party. I wasn’t sure if it were still good for her to eat for a late supper snack. Smelled fine to me. But rather than be the “decider” I turned to the young staffer and asked her what she thought. She asked “Does it have mayonnaise on it?” Yes. “Well” she said, “mayonnaise can be tricky. I don’t think she should eat it.” Wow. Test Number 2: let them decide. They are in charge and in fact, they are actually more careful than I would have been, and rightly so. The smell test is only as good as the smeller.

Trust and Proof: On July 1, 2012 it will be a year since I signed the contract with Ability Beyond Disability to take over being in charge of all aspects of our daughter’s day-to-day life, 24/7. And in that time I have established great trust in the agency’s professional skill and in the individual staff members who provide a panoply of services to our daughter every day. My comfort level is built upon ample proof from close-up observation. My trust is well-founded. As one mother kindly reminded on Saturday as I described to her and another mom the intensity of my anxiety during those months with its occasional unfortunate outcome, that I couldn’t have had that trust twelve months or even six months ago. That, as she said, is your job as a mom, to micro-manage every detail, to make sure that your child is safe and cared for. That’s how you got her here. Yup, all these moms know that feeling.

Raising A Toddler: Well, that daughter for now is safe and cared for. For now, I can relax my grip, and that is the first time in twenty-two years that I have experienced this sensation. Is that different from moms of typical kids? Yes and no. And the Yes part of that answer is that special needs child rearing is different and when you can release your grip, wow, for however long, the feeling is palpable. Remember what it feels like to parent a toddler? Parenting special needs can feel like that for years and years, potential danger everywhere, and don’t turn your back. You think that is an exaggeration? Ask one of those parents.

Thank you ABD as always for allowing me to feel this new calm. I notice that my attention issues are dissipating too, with the drop in my anxiety. And I am only on one drug, the drug of trust.

©Jill Edelman, M.S.W., L.C.S.W. 2012

Mom, I Know I Was Born With Eggs: Parenting Adult Special Needs One Month At A Time

Checking In: More than six weeks have gone by since I last posted on our daughter’s adult special needs life, and a busy six weeks indeed. During that time our twenty-two-year old daughter started a new volunteer job at Best Friends in Norwalk, an animal daycare and grooming center, and continued her two other vocational pursuits at The Complete Cat Clinic and ROAR. She began a trial a low dosage course of Focalin, a medication to enhance attention and focus, attended a staff’s wedding, greeted guests at her agency’s (Ability Beyond Disability) Gala, and won two medals at the Connecticut Special Olympics Trials in New Milford. She celebrated Passover at a family seder in New York City and a cousin’s Bat Mitzvah in Gaylordsville, CT and continued her Pegasus Therapeutic Riding Program and SPHERE and began Special Olympics aquatic practice sessions, all weekly activities.

The Ability Beyond Disability Day Services Options (DSO) launched their book club in response to our daughter’s suggestion. Their inaugural selection, I believe, is Beezus and Ramona, by Beverly Cleary. The DSO has expanded their weekly activities to include more springtime related events for their clients.

Not Just Doing, Growing Too: Does the gal sound busy enough? Yes and she is quite content too. The Focalin has increased her attention span, setting off a cycle of gains that include more success on the jobs by improving both her tolerance for frustration, her self-esteem and her mood. I was very wary of placing her on any medication after previous experiences, but I am grateful to the ABD staff for suggesting that we give the medication a trial. To my ear, when we chat on the phone, the Focalin clearly gives a boost to both how she articulates her thoughts and to her level of enthusiasm about the topics she shares with me. Clarity has improved as well, probably as she has more energy to put into her speech, so that I am not constantly saying “What?” which had provoked her annoyance during our phone chats. To date there are no medication crashes or side effects. So far so good. Fingers crossed.

Gratefully Stepped Back: But she is not just busy, she is growing too. Her relationship with her apartment-mate has deepened, so much so that when they have drama in the dorm/apartment blips they are short lived. She continues all her Internet hobbies, social networking, searching history sites and plowing through movies on war and love. As a family we have settled into a twice-weekly routine of visits, sometimes with both parents, sometimes just one of us, for lunch, an outing or a family event. I have gratefully stepped back to allow the staff the full reach of their day-to-day responsibilities, trusting in their expertise and judgment, with a newfound sense of security that they know her well and don’t need my constant input to provide optimal care for her.

Deficits That Challenge But Don’t Derail Her Growing Maturity: A sure sign of her sense of safety and comfort emerged during a two-week period when my husband and I took a road trip south and our daughter, though struggling with the confusion of our changing itinerary, did not demonstrate any significant struggles with our absence. She relied on texts and phone calls to keep herself connected and to figure out where we were each day and whether we were driving or flying, staying in motels or at a familiar destination in Florida. Her texts revealed, more than anything, her continuing challenge organizing time in a sequence that might have provided her with an orientation of our whereabouts. Unfortunately her deficits didn’t allow her to track our journey nor did schedules or calendars sufficiently fill the gaps. Despite this confusion, her routines were not disrupted, no significant interpersonal clashes with staff or peers ensued and we found her in great shape upon our return. Awesome indeed! A signal both of her comfort level in her new life and her increasing maturity.

A Parallel Journey: My time has been taken up with editing the book of collected posts on parenting adult special needs, for a summer e-book publication, which has imposed a revisiting of the entire process twice so far, a challenging enterprise which often has me cringing and blushing with embarrassment at my own behaviors, tearing up at moments where the pain is still so accessible, and of course, joyfully incredulous at just how lucky we were and are to have gotten to this place. That awareness and gratitude never leaves me. Rather it guides me to offer help to other families of aging out special needs children, many of whom I am meeting for the first time through Ability Beyond Disability, Pegasus and Angelfish, and some of whom I am re-greeting as their children age out of our local school district. My daughter and I bump into her former special education classmates or their families in stores or restaurants hither and yon. Just today our daughter called me to say she reconnected with an elementary school buddy who returned to our town after years away at the Perkins School For The Blind, returned to fight with DDS (Department of Developmental Services) for services, a fight that I knew of from his family. Blind, cognitively challenged and fighting for services. This is the nature of the system – nothing granted easily despite hardship and an unknown future.

Scenarios That Remind Me: It is not unusual for me to hear from my own psychotherapy patients or friends the stories of families with middle-aged special needs children whose parents are elderly, developing dementia or other incapacities while siblings and extended family are scrambling to find a program, a residence, a life for the now older and often isolated special needs adult whose dependency on the now aged parents has expired, in a sense, and a new life has to be created for them. This is the bullet I sought to dodge, and when I hear of these desperate scenarios my heart sinks for everyone involved.

411 (Sex Education): Sometimes I miss our daughter though she is only twenty minutes away. But our lives are separate; she no longer lives in our home, there are no “school vacations” when she returns to the family abode to rest and regroup. And when I do see her, what knocks me over each time is not just how much I love her or how cute and clever she is, but how quick and smart is her out of the box humor. Here is a sample:

In a drive to the mall last week to purchase a gift for her cousin, a conversation evolved around sex. I cannot recall what triggered that particular chat but what ensued was the following:

“Mom, you know those 411 sex education classes we had at Riverview?”
“Yes.”
Some of that was embarrassing.”
“I can see that.”

(A little more related chatter on sexual matters mechanical and otherwise.)

(Then a pause and a slight turn of a head in my direction, glimpsed from the corner of my eye, a hint of a smile, and then__)

“Mom, I know I was born with eggs. What I don’t know is if they were hard-boiled, scrambled or poached.”

All we needed was one of those drum rolls that follow a knockout stand-up line. Where does she get this stuff? Right out of her hat. She is a hoot and a half and those who get to hang out with her are the lucky ones.

Dating Adult Special Needs Style: Recently a young man who is also a client of ABD asked our daughter out to the movies. The date had all the conventions of a dating sequence of old: it started with two people getting to know each other while pursuing a common interest; followed with the male calling the female for a date; and then a scheduled night at the movies. Very 1950’s. What was different even from the 1950’s conventions was the involvement of ABD staff who okayed and supervised the event. No one directly asked for my approval though I was informed prior to its occurrence, with, I am sure, the possibility that I could have weighed in one way or the other. That aspect felt just a tad strange. However, since our daughter had been in a previous relationship some years earlier while at her boarding school, the thrill of that “first love” passage fulfilled me then so completely that when I heard that same excitement in the staffs’ voices that I had felt years earlier, I was happy for them. I have grown too, and know that whoever cares for our daughter deserves to feel the joy as well as the gratification for her successes, her passages and her new adventures.

Resources: I conclude this post with one important request. As I continue to prepare my book for publication, I am compiling a listing of resources that will be added to the book to aid others in their journey. I would like to invite readers to submit suggestions for the resources section so that all might profit from our experiences. To do so, send me an email or post a comment on the blog.

Monthly Posting: Some readers who had followed the daily and then weekly posts on parenting adult special needs have missed reading about our daughter’s journey. And I miss writing about it. So for those who are interested, as of this month, I will post on the life of our adult special needs daughter, one month at time. Stay tuned. I hope you like it.

©Jill Edelman, M.S.W., L.C.S.W. 2012

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

Social Graces and Seven Months: 2-27-12

Demo Day: Saturday our family attended “Demo Day” at the Pegasus Equestrian Center in Brewster, New York, where our daughter, along with other students, demonstrated her equine knowledge and skill acquired in their “Horse & Me” winter “unmounted” program. At the stable, each student in her class stood by a horse while they and their families engaged in a game of guessing horse girth, height and age. Afterwards, families followed the students and volunteers down the hill to the indoor arena where the students led their horses around orange cones, offered them toys and received ribbons for their achievements. Our daughter received a satiny pink ribbon and beamed with pride and pleasure in being a part of that horsey world. In another week she will return to the “mounted” program and ride through the Spring session.

Social Skills Training: Later that evening our family celebrated a birthday with sixty friends at a private room in a neighborhood restaurant. Our daughter and her apartment-mate attended. One of our daughter’s older cousins came with her new beau. According to this cousin, our daughter went over to the gentleman, extended her hand, introduced herself and welcomed him to the party. Five years of boarding school training and an innate social acuity combine to make our daughter impressively skilled at making newcomers feel welcomed. Riverview, her Cape Cod boarding school, placed a great deal of importance on their students offering a warm handshake and welcome to all visitors, many of whom, potential candidates for admission, came for an overnight stay in the dorms as a preparatory method of determining if the student, their family and the school were a good match.

Trained Educators Make The Difference: A critical piece of the special needs education is offering a template for social interaction. Our daughter excelled in this area of her education and has maintained these skills especially as her innate curiosity and interest in others are fostered by this acquired confidence in her ability to engage them appropriately in conversation. Prior to this 24/7 training at her school, our daughter would experience a great deal of anxiety anticipating such a social evening and in the past would have refused to attend. Repeated practice and training in a residential setting over five years laid a foundation of comfort for a lifetime. It is impressive what trained educators can do, if allowed, that makes the future of a special needs individual shift from gloomy to glorious. Riverview School is a model for this type of educational intervention. And we are grateful to them every day of our lives.

Seven Months Down and A Six Month Review: On Friday we mark seven months of adult residential life for our daughter and her apartment-mate. Wednesday, Leap Year Day, I meet with her State of Connecticut DDS (Department of Developmental Services) case manager and her Ability Beyond Disability team to review the first six months. My focus is on the vocational piece. I am able to assess from afar how the residential and social components of her program are progressing but have little information regarding our daughter’s vocational development.

Sharing Lives: Almost all sixty of the attendees at the party celebration this past weekend have known our children their entire lives. Eight of the women are parent members of our daughter’s baby group/book club that has thrived and survived intact these twenty-two years. Two of the women are grandmothers; many have older children who have wedded in recent years. And all of us have twenty-two year olds born within a six month period who now are on the threshold of adulthood, most recent college graduates or soon to be. Only our daughter is more or less “established” in her adult life. She cannot wander through her early twenties in search of her true self, not quite in the same way. Her special needs life requires more definition and supervision; her entitlements impose order and rules; her deficits depend on organization and management. Uncertainty as a daily diet is unacceptable here. The irony of all that cannot be lost on anyone. Certainly not on me.

Often there is an upside to life’s hardships and this is one of them – our daughter is safe and happy in this early stage of her adulthood, and that brings to her family great peace of mind.

©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