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 aging out of the system
Purposeful Blogging, Pass It Along: 9-15-11
Get Started Now: Our daughter has been participating in the Ability Beyond Disability adult program for 2 plus months with the residential piece in place for the last 6 weeks. As I track this transition to independent living with supports, I am mindful that readers who have more recently joined this narrative may not benefit from its history unless they go to the first months of posting (April, 2011). The purpose of “Parenting Adult Special Needs: One Day At A Time” is to provide a template of one family’s journey which might serve as an outline of sorts for others who are earlier in the process of planning for their special needs child’s adulthood.
Rimmed With Concerns: Whatever the day, whether at birth or 3 years later, that a family grasps that their child has “issues”, the collective family mind starts cranking out some pretty scary images: an adult alone and uncared for; a family beleaguered with bills, isolation or servitude; an adult child without skills, unable to earn money or have friends; someone who may never marry; may never have children. Reels of worry, one dismal image after another. Or magical thinking: “They will surely out grow this;” or denial: “Let’s get another opinion, these people don’t know everything.” I know the frantic search to find someone who will say, “It is just a phase, a delay, some wax in the ear, a sibling doing all the talking for them, needs more socializing. Don’t worry, my Johnny, Susan or Kathy had the same issues at that age and he/she is Phi Beta Kappa from Harvard now.” The days bring more worrisome feedback, the years more data, ups, downs, highs and lows. Yes, it is the proverbial seesaw but, rather than solely grasping at straws of hope, get started pursuing resources, knowledge and support.
A Sketch: This blog is a sketch of a unique child, living in a particular state in a specific country at a certain time in social history: so many variables that may differ widely amongst readers. However, it is still the basic story of a mission to realize an adult life for a child with special needs. Take a peek back at the beginning, post questions on the blog, email me or send these posts on to others who will likely be making this journey as well. Life is long, if we are lucky, and children maturate in their own way over time. But if you have an inkling that your child might need a very active sculpting hand of a parent to get to a secure adulthood, get your chisel out now.
©Jill Edelman, M.S.W., L.C.S.W. 2011
A Celebration For The Artists: 9-9-11
Sphere Art Program: The Ridgefield group SPHERE had their end of summer art show last night. Our daughter’s many pieces were displayed including the papier-mâché dog head. She and her apartment-mate greeted us in the Lounsbury House, the 1896 mansion on Main Street that serves as Ridgefield’s elegant community center. SPHERE board members were taking pictures with the Town Selectman Rudy Marconi while members were moving through the grand rooms with their families looking for their works of art, including ceramics, papier-mâché, t-shirts, water colors and acrylics. One veteran member dressed in a long gown was seated at the piano in a front parlor with a page-turner at her side, performing “Memory”. It could have been 1896 (except for the Cats tune).
The Pioneers: The group makes and sells soaps and I bought three bars to give to youngsters who might enjoy a duck in a nightcap sealed up in a bar of glycerin. I saw our daughter light up when her dad walked in and I reveled in the support and camaraderie of the families and their special needs adult children, with their range of personalities and talents. The SPHERE organization is probably just one of hundreds throughout the country formed by committed parents determined to provide their older special needs children a place to experience the theater arts, creative arts, friendship, and housing. I continue to be in awe of the parents who were the pioneers of this group, dating back now twenty years, with many of the founding families and their very mature children still active in the group. (If you know of any other programs like SPHERE around the country, please let me know in a comment and put in a link to the organization.)
The Butterfly: The summer art program instructor is a full time teacher at a Connecticut High School. Her inspirational leadership of probably 25 plus members who are introduced to various fine art mediums through eight summer nights, speaks to those angels out there who populate the special needs parenting journey. With her blue eyes twinkling at me, she told me that our daughter is the social butterfly of the group. She does have a butterfly t-shirt, with wings spreading across her chest. She also has an owl t-shirt, the round brown owl eyes following a similar trajectory. The girl sports the most interesting array of shirts from animals in flight to pretty funny “in your face” slogans, not R rated of course, just hilarious.
On Another Note: While schmoozing over the humus and salsa, I met a mom whose daughter also just aged out of her school district and is the newest member of the SPHERE Group. The family knows our daughter’s apartment-mate, as they come from the same town. What is different about this young lady and our daughter is that she is autistic with an IQ that is above the acceptable range for DDS services. Consequently, the daughter does not receive any entitlements from the government, yet she cannot live independently or be self-supporting anymore than our daughter or her apartment-mate can. The tragedy of the “high-functioning” autism population in this country is that because of IQ points, they are prohibited from receiving the necessary protective and skill building governmental opportunities that those with lesser IQ testing scores obtain. Acquainted with many young adults who fall into this evil limbo, I know that they will be lost between the cracks and ignorance of a society that hasn’t a clue how cruel they are. I think this will change over the decades because of the statistical power of this unserved population and their families. But for now, I have to be grateful for what our daughter’s testing scores provide; care; training; and a protective network. Ironic isn’t it?
©Jill Edelman, M.S.W., L.C.S.W. 2011
A Visit From DDS: 8-10-11
Yesterday’s News: Our outstanding Connecticut Department of Developmental Services case manager visited the young ladies’ apartment yesterday. She sent me an email to express how much she liked the apartment, how happy the girls seem to be and what a wonderful job Ability Beyond Disability has done in fulfilling the record keeping requirements of DDS. That is huge as anything that falls short in the State’s eyes would be very troublesome for all of us. Thank you ABD and Tanya Medve!
Loose Ends: There are lots of loose ends. Our daughter’s iPod Touch, provided by our school district last summer and full of social skills apps that she used at school, is now being reloaded by ABD for our daughter’s new life. Just some questions re: logins. Easy to rectify. Perhaps they can program information on the streets of Ridgefield, locations for services and answers to questions related to her new autonomy.
Book Keeping: Not my forte, though I have run my own business for thirty-five years. Different side of the brain. Alas, I owe DDS more information on a grant we received last year to help offset respite costs. I keep sending them the information, but as I moved to mostly paperless banking, I do not get checks returned to me anymore. Hence, I had to print out a bank statement and circle the related payment for her summer programming at Riverview. Now they want me to track down her “sitter” to have her sign off on a receipt for a couple hundred bucks of hourly time last summer. I know this is the life. I just renewed her yearly guardianship form at the Probate office two days ago and soon will have to do the three-year renewal. Every year we can expect to re-certify that our gal has a legitimate disability. The paperwork will only increase, I suspect, the process becoming more convoluted and risky, as the governments wield their machetes at entitlements, human lives and futures.
Busy Bees: It is a wild image and probably inaccurate, nevertheless I feel as if our daughter and I are the Queen Bees and all the worker bees from Ability and DDS are building the hive and securing the future so there is a plentiful and ongoing flow of the honey of happy living. Bit of a stretch and we all know what happens to the bees, but still, that’s the image and I am grateful indeed. Fingers crossed, that government machete won’t see its way to our hive. Fingers crossed!
©Jill Edelman, M.S.W., L.C.S.W. 2011
Funding A Life and Some Polo Play: 8-7-11
Polo and Work: Dad reported wonderful things about our daughter’s Pegasus riding yesterday. The students were mimicking polo play, holding foam sticks aimed at balls on cones; even the horses were being trained to nudge the balls off the cones. She trotted, rising high in her saddle, followed by leaning so far forward that a photo dad took of that moment makes it appear that she had either passed out or was taking a snooze.
Work Takes Precedence over Painting: After this brief sojourn in our daughter’s equine world, dad did not indulge his desire to wash a canvas with the oils of verdant green and sky blue. Instead he went off to work. Her dad works on weekends often to make up for time taken off for travel, family reunions and graduations (our daughter had two of those just this spring). The back-story to our daughter’s tale is the parental push to fund much of what isn’t being funded by the state. And state funding only kicked in July 1. Prior to that our daughter received a minimal amount from SSI since the age of eighteen, which we basically used to help pay off her orthodonture. An unspoken thread running through all these posts is the financial pressure that our family and others feel to provide for special needs children, and all children, as they travel the road to independence. I often work late at night, and basically whenever anyone wants to see me. My husband, though of retirement age (which I will be in six months), can not retire, nor can I. Part of that is related to the need to wait and see where our children wander and what they need.
Earning Power: At this point, I have no idea what our daughter’s earning power might be in future years. And whatever she does earn, after a certain point, is subtracted from what the government provides. Therefore, the idea that someday she will not need us financially to supplement the government is not even on the plate. No way. Therefore the usual consideration of “inheritance,” though it cannot go directly to her, but to her supplemental needs trust, is a further incentive to keep working. For both our children. And what would we do if we didn’t work? Well, that’s pretty clear. The hubby would paint, and the wife would write. No problem there. I know that families far more strapped than we are face similar questions every day: how to protect the special needs adult from living a financially stressful existence, dependent on government entitlements that might fade away with every passing year.
No Sacrifices Here: I haven’t any complaints nor do I see any of this as a “sacrifice.” Putting our children’s needs in the forefront of much of my life planning has grounded me, urged me forward to be more than I ever imagined I could be, and given back to me in spades…the loop of caring that I tell my patients to look for in all their relationships. You give and you get. Not gratitude per se, nor even any obvious declaration of devotion or love, though that is there, implicit or explicit. Rather, the sheer enjoyment in “sharing” in their lives, their discoveries, their challenges. I find it all a great deal of fun.
Planet of The Apes: At 9:15 a.m. today my cell phone rang. Daughter announced that since it was raining, she and apartment-mate are off to the movies. “We voted on which movie to see,” and ran through the list of options. The apes won. I told her how much her dad enjoyed seeing her polo play and she said there was a moment when she felt a bit afraid but tightened her hold on the saddle. Good job. Then I asked her if she wanted to plan to see me this week. Nope! I love that. Touching base with mom is quite enough, thank you.
©Jill Edelman, M.S.W., L.C.S.W. 2011
The Quesadilla Maker: 8-6-11
The Redheads Come To Call: One P.M. yesterday, just as advertised, our visitors rang the doorbell at our daughter’s new apartment. Mother and daughter drove 3 plus hours southwest to welcome our daughter to her new home. They came bearing gifts in colorfully wrapped packages, both eager to support our gal’s new life. Our daughter radiated pride and pleasure as she led the home tour and opened her gift. A quesadilla maker and spatula. Perfecto!
Information Shared Over Sweet Potato Fries: I gave the ladies a drive through the main street of town on the way to lunch at Fifty Coins, where you can get an amazing Ahi Tuna wrap with wasabi, soy and chipotle dips. And of course, the aforementioned sweet potato fries. The mom and I talk the special needs talk, a familiar conversation which I have shared with families for years. The girls gossip a bit and answer our inquiries about what each of them is doing. Then the moms pick through whatever new resources or information we can share with each other and together ponder options to pursue in the areas of funding, residential, social and vocational opportunities. Our young visitor has two more years at their boarding school before she “ages out” in the state of Massachusetts, one day before her twenty-second birthday. But she is a busy and skillful little beaver, working this summer in a retail store and a senior center. She loves shoes and clothes and is learning how to navigate a wheel chair. Though very strong on the vocational end of her future planning, the residential piece is uncertain and much work lies ahead for this family.
Helping Comrades: Can we help each other? You bet. Though from different states, there are many similarities in state agency procedures and some national resources and non-profits that both of us can tap. And as my friend pondered her next step, I gave her my best piece of advice, “Get started now. Don’t wait a second more.” In other words, pull that DDS case manager in to explore with you whatever residential options are out there in the State of Massachusetts and who in your area is doing what with their children. Get her on the residential waiting list. This is an enormously resourceful mom but the only way to build the vision is to ask others what visions already exist. Fill in the blanks because blank is what you see when you first start that “adult independent living” journey. And what you feel is a sick pit of fear in your belly. Ask anyone and everyone to throw some dots, smears or scribbles onto that blank screen. With time an image will form, be tweaked and eventually morph into an acceptable reality. Fingers Crossed!
Boring and Contagious? The library gig doesn’t seem to be working out. Our daughter’s vocational life skills coordinator is fantastic, a true advocate and really responsive to the girls. She has alerted staff that the ladies are underutilized, under-challenged and not stimulated washing the covers of children’s books, in silence, and absent of social contacts (they are not there together). There is also some question of contagion. Both girls have gotten sick since being assigned the task of cleaning toddlers’ smears and sticky nondescript stuff and it didn’t occur to me until now that they should have worn gloves. Apparently the library was a temporary post until a more suitable setting was found. Unbeknownst to me, the staff have been focused on a senior living community in town and this week were finally able to meet with their head of programming. Volunteer job applications have been submitted and our daughter will be interviewed next week. WOW! And I didn’t have to do a thing, except to tell staff, “Don’t bring her back to the library next week, one infection is enough.” (When I volunteered at our elementary school’s library eons ago, I came down with Pink Eye twice. My kids didn’t have it, but mom did.)
Pegasus With Dad: Our daughter has her riding program this morning. Staff drove her there. Mom stayed home but dad called ahead to ask if it were O.K. if he met her at the Pegasus Equestrian Center. “Sure,” our daughter answered. After all, this is her life and we need to be respectful of boundaries. Dad is respectful, eager to see her new riding skills, and packed his car with easel, oils, canvas and camera, ever ready for a painterly moment. I call him “Michel Monet” pronounced with a hard T. That ‘s her dad. And she is so much like him, it’s hysterical. They even eat alike.
©Jill Edelman, M.S.W., L.C.S.W. 2011
I Like This New Phase: 8-3-11
Dropping By: I like this new phase. Daughter lives twenty minutes away and requests some items. I drive over and drop off the items; we chat, go over her requests, I watch her proudly hang up her chains and bracelets on the jewelry lady stand the staff gave her, and then I leave. Pretty darn good, if you ask me.
Earache Management: Yesterday staff took our daughter to her doctor in the afternoon. No kidding. She was prescribed drops for swimmer’s ear and I didn’t have to cancel patients, or travel in three directions. Someone else got her there, brought her back, and put the drops in her ear. Yet I was able to see her, find out what the prescription is, for how long and what she was feeling about it all. I like this format.
Pinch Me: I don’t believe this is happening. I get all the frosting and so far, don’t have to bake the cake.
Our Friday Date: Always on the ball regarding future plans, our daughter reminded staff and mom that her friend Elizabeth and her mom are driving down from Massachusetts to see her new home and have lunch. Everyone is excited to witness our daughter escorting friends around her apartment. Her DDS case manager wants to come at that time too. So does her residential coordinator. I can guess which restaurant she’ll choose to take her visitors. Great sweet potato fries (my favorite.)
The Apartment-mate: Despite the moms’ worries about the night shift, all went beautifully the first and second nights. Both girls say they slept well and the apartment-mate seems as happy to be there as her buddy across the hall.
Concert in The Park: As I was leaving the apartment last evening, the young ladies were making a picnic dinner with staff to take to the concert in the local park where they were meeting up with members of Sphere, the special needs theater and art group in town. The apartment is still abuzz with “set up” stuff, with extra staff hanging clocks, completing paper work and checking on safety features. Soon, the newness will subside and life will settle in to what I hope will be a fulfilling regimen.
Honeymoon Stage: This is the first blush of the new life, the honeymoon stage. These young ladies are adjusting quickly for a number of reasons, the first being that they have boarded for years much further from their homes, so what others may experience when first moving out of their parents home is muted here. In fact, both ladies are closer to the homestead than they have been for years. Another moderating factor is that the changes were introduced over time: the girls met; the girls hung out together over two school breaks, had mutual friends and were connected on Facebook; the girls attended the ABD day program for a month prior to moving in and met some staff over the last six weeks. And the girls never questioned the plan to live outside their parents’ homes. In our daughter’s case, her boarding school curriculum prepared her for the transition into adulthood that she is currently experiencing.
“I Can’t Wait To Get Away From My Nagging Mother.” In fact, our daughter’s frequent response when folks asked her if she looked forward to moving into her new apartment was “Yeah, I can’t wait to get away from my nagging mother.” Though apparently she sobbed briefly the first evening, telling the residential coordinator that she would miss me, she swiftly recovered and by the time I re-entered the apartment (having just run out to purchase a pencil sharpener) she was totally focused on unpacking and happy to see me off.
Touching Base: A great feature for me, and perhaps for her, is that, unlike school when there were many hours night and day when I couldn’t reach her, now I can call her anytime and she picks up. I love the casual ease of connection. The importance of “touching base” with our children and spouse is a tenet I believe in strongly, and I think also works for them.
Feeling Privileged: I feel guilty boldly announcing my relief and pleasure in this accomplishment knowing that many of my parental peers haven’t had it this easy or are many steps away from completion of this daunting process in an unkind economic climate. Folks keep saying that we got the process going and completed in the nick of time. So whatever I can do to help others, please let me know. And don’t wait, no matter your child’s age, get started now.
That Is The Purpose Of The Blog: To tell the story of one family’s special needs journey in the hopes that it will be of use to others. But now that we are clearly entering “the next phase” of the journey, and the day-to-day progress will likely transform into a more stable, less eventful period, I’d love to open this space up for a dialogue with you, my readers, who may be on your own family’s special needs journeys. Do you have questions I can answer? Are there specific aspects of our journey that you’d like more detail on? You can post your own questions, thoughts, and experiences as comments, or you can email them to me and I will answer your requests on this blog without identifying you. This is a shared journey, with our children, our families, our friends and with each of you. Please join me in sharing your adventure in parenting adult special needs, one day at a time. I know that anyone reading this blog will welcome you.
©Jill Edelman, M.S.W., L.C.S.W. 2011
Successful Launch: 8-2-11
Celebrating With Balloons and An Earache: Truly all went smoothly yesterday. Aside from an earache, probably swimmers ear (she is being taken to her doctor today by staff, amazing), the move-in was a triumph of coordination and readiness. Seven ABD staff members were present, setting up, cleaning or just greeting our daughter and her apartment-mate when they returned from Day Service Options (DSO). Girls were smiling, and staff scurried about making sure all items needed were present.
Brother, Friends and The Red Couch: Everyone loved the red couch. Her brother and his friend Erin barely moved off of it. Pictures were taken and aside from my lingering concerns about her ear (the nurse came after I left minus an otoscope, which annoyed me…but she was checked at the DSO this a.m. and doctor’s appointment set for 1:30 today), I was thrilled.
The Overburdened Bedroom: I kept the cell phone on all night; no one called. This morning I checked in with our daughter, who said she had a bit of trouble falling asleep but slept well. My chores remain. Her bedroom here is stocked full of unnecessary items. I have already filled two bags for Goodwill and it is only 10: 30 a.m. Off to work and then I will stop in at the girls’ place to drop off her “I Am A Cure” t-shirt to match the PJ bottoms before I work again this evening.
Two Hundred And One Stuffed Animals: About twenty Dog Fancy magazines will be passed on to someone at my husband’s work, and then, what to do about the approximately 201 stuffed animals, most of them dogs with fifty at least residing in her bedroom and the rest stored above the kitchen? She took one to her apartment but I am sure I will be getting orders for specific additions, with specifications such as “the big yellow lab” or the small poodle from Aunt Susan. When she comes home next, I must squeeze some decisions out of her regarding the plentiful pooches. Productivity! That’s my motto. As her bedroom here empties out a bit, the bedroom there will probably swell.
Around Midnight: All good! Can’t believe we made it. Can’t believe it. Around midnight last night I sent an email, typed in purple to match the girls’ color preference, to the Ability Beyond Disability coordinators and our DDS case manager heralding them for their accomplishment. Awesome is the word that best describes what they have achieved for us.
Dream Come True: They made my dream come true. They fought so hard for us to get the funding, the rent subsidy, the staffing, and supported our location and housing choice. A year ago today I would never have believed that all would come together so beautifully. The apartment-mates match and the moms work well together. A year ago today, we were all still strangers!
The Powers That Be: I believe in nature, good people and hard work. And much else that is beyond my reach to understand. All the forces pulled this together for us and I am grateful.
©Jill Edelman, M.S.W, L.C.S.W. 2011
A Poignant Passage? 8-1-11
Or She Is Just Growing Up? Our daughter doesn’t seem to be registering this transition as different from her return to boarding school each semester. Nor does her dad. The great leveler of all things emotional, he describes the process as signifying that “She is just growing up.” True, but somehow there is some legality to all this that I can’t quite grasp. Does it mean anything that she is funded by the state; after all, we are still her legal guardians? Or that we contracted with Ability Beyond Disability to take care of her? She is living so close to home that for quite sometime or until we sell this home, she will probably keep an equal amount of her belongings here as there…the new home. Though spilling a few tears I am mostly gathering my wits to pick up some last minute items, as instructed: one peach and one lavender Tom’s of Maine deodorant and Spray and Wash for stains. She packed her duffle with DVDs, a ceramic angel, an old local High School yearbook and her stuffed animal from the Black Dog shop on Martha’s Vineyard. Later this afternoon I will deliver the goods and join the girls and their team for the official move-in celebration at the apartment, camera in hand. Her brother is coming to mark the passage, which will delight her most of all.
How Do I Feel? Thank you for asking. I feel ready for a break. Thursday I am heading to Manhattan to see all the museum shows I have been missing, including the highly touted Alexander McQueen fashion show at the Metropolitan Museum of Art, three days short of its closing. I am off to the Frick, the Jewish Museum and what ever else I can stuff into the day. At dinnertime I will meet my kindergarten buddy who lives in Aspen, Colorado and we will share the joys of motherhood along with memories of childhood. But that is Thursday. I am not sure how the next few days will feel. It is kind of like breaking up with someone with whom you go to school or work minus the hurt feelings and ruptured bond. Though the contract has shifted, the proximity continues. She is only 20 minutes away. How often do I see her? We will see. I know me. I get emotional but I do love my freedom.
A Win Win For Everyone: Despite my incessant maudlin meanderings, I know this is a win for all of us. Watching our daughter proudly unpack her clothes, placing them neatly in her new chest of drawers and arranging items on her spacious new desk while insisting, “I’ll do it,” made me feel great. She is happy and, frankly, so are we. So quit your b-tching mom. It doesn’t get better than this!
©Jill Edelman, M.S.W., L.C.S.W. 2011
The Chocolate Fountain and Mom’s Cognitive Confusion: 7-31-11
The Summer of Love About To End? Tonight is the final night home…tomorrow’s dawn introduces the new regime. For six weeks our daughter has conducted two on again, off again summer romances via cell phone conversations, Facebook and texting. Once she moves into her apartment new rules apply. This social romp, with no face-to-face encounters as yet, has been fascinating and somewhat disturbing to witness. But I am glad that all this occurred under our roof because it allowed me to observe the cognitive processing of our daughter’s special needs romantic thinking.
The Bizarro World: The facility with which our daughter can shift from delighting in one of these fellows to indignation and back again is humorous at best and troubling, too. Because no one either drives or has access to wheels, face-to-face has yet to occur. Both young men are known to the special needs community, one having gone to our daughter’s school (she met him briefly last year when he was visiting), the other her friend’s school. All three socialize for long stretches on the phone. So much so that I had to make both young men favorites on our family phone contract.
Mother-Daughter Chat: When something goes awry with one of them, we have a mother-daughter chat, but whatever clarity or course of action may emerge from the chat is undone within hours. Nothing sticks, so swept up is our daughter in the sheer fun of the flirt and though at times hurt, she quickly recovers, forgives, or switches loyalties. Is this healthy? One of the young men, after hours of wooing her, revealed that he was in a relationship. I was in the kitchen when she burst into tears after hearing this declaration on the phone. She was justifiably hurt and furious because, as she accurately described, “He was tricking me.” I comforted her, forcefully validating her reality and she decided, “I am not ready to forgive him.” His explanation, with some justification, was that they live far from each other. A half hour later she was ready to forgive him. The next day he wanted her to drive down to see him and asked to speak with her mom. On the phone he told me that our daughter was so beautiful and to please call his parents to arrange a visit. This young fellow comes with a reputation for compulsive flirting and flitting from girl to girl. Early yesterday, prior to this phone exchange, I had shared that information with our daughter, including a specific incident that occurred with a friend of hers some years ago. All her energy went into sympathy for her girlfriend, including sending her a text. But as for wariness regarding this young man, there was obviously none.
Exploitation and Judgment: The worry here is every parent’s worry; someone will take advantage of their daughter emotionally and or sexually. I doubt I need to explain that to anyone and as with many moms and dads, though I spell out this concern to our daughter, and she gets, it is gone with the wind ten minutes later. Despite this behavior, her history with a somewhat rocky though long lasting relationship at school showed mostly good judgment and boundaries. What pushes her buttons, and bodes well in many ways, is someone trying to control her behavior, not someone appealing madly flirting with her. Makes sense.
Middle School, Teen Or Dysfunction: Which typical developmental age group does this behavior correspond, fourth grade, sixth grade, ninth grade? I have no idea? Or will this be a life long cognitive dysfunction?
Danger Lurking? Of Course: Her ABD team was fully informed of these amorous shenanigans at the meeting last Friday. Fortunately the young apartment-mates on their own had the wisdom to establish rules with their team which exclude men from the apartment. Months ago both girls had requested that there be no male residential staffing. Our daughter will never be alone and it is also unlikely that these fellows will be making their way here any time soon. Visits with either young man with parental chaperones are a possibility but scheduling will be difficult since both live quite a distance away.
Cognitive Confusion: The cognitive confusion here is Mom’s. The staff will limit some of this “access” but not all is audible, such as texting. Fortunately our daughter is not secretive. I will insist that staff remind her to turn off her phone each night. She is trustworthy and will do so. She needs her sleep and one young fellow has been known to send a text at 5:00 a.m. But what is a mother to think? Is this a healthy progression, mimicking the typical behavior of a child much younger than her twenty-one years? Or a dysfunction that will remain? Probably both. There is some growth in socialization from her previous “romantic” relationship at school, more of the gossip and social networking that you see in middle school and amongst early teens. And more straightforward flirting.
Chocolate Showers: These new contacts have added a feature missing in her earlier alliance, sexually suggestive content. The former exchanges overheard in the kitchen typically focused on family dogs and the break down of a furnace. Now, when I overhear her responding to something that I read as sexual, though she doesn’t, I speak with her about what I think she may be missing. Chocolate showers, for instance, usually mean sans clothing. She didn’t get that and disputed my suggestion, so taken up was she in the image of a streaming fountain of velvety chocolate pouring over her much like ones she had seen at family Bat Mitzvahs. OY! Yet, she was highly offended when one young man said he wanted to make “love to her” and chastised him for it. Clearly this is all new and fun for her, but within a special needs world one must be especially aware and watchful.
Safety First, Fingers Crossed: The new regime will provide the proper balance to allow her fun but keep her safe through this next developmental progression. We want love in her life, and romance. And perhaps someday, something more permanent. Why not? She has a heart too. It’s the head we have to keep a watch on, and the body. Naturally. Fingers crossed, all be well. (And yes, she has had sex education practically since kindergarten. One takes no chances with special needs.)
©Jill Edelman, M.S.W., L.C.S.W. 2011
Night Time Fears: 7-30-11
A Team of Caretakers: Ability Beyond Disability, our service provider agency, is hoping that the program developed for our daughter and her apartment mate will serve as both a template and a model program in the State. Utilizing the CRS residential category (a Connecticut Department of Developmental Services (DDS) model that translates to Continuous Residential Supports For Young Adults) allows ABD to consolidate services with more flexibility and autonomy while within the strict budget allocation and enables parents to choose the housing location and be influential in designing aspects of the program as well. Most of the team members providing the various services met with the parents yesterday.
Group Leader: The meeting was held at the ABD HQ where are daughter attends DSO (Day Service Options) twice a week. Team members took turns introducing themselves and describing their roles. All but two had previously met our daughter. The residential staff alternate shifts, 3 days and four days. Two alternate the day shift, two the night shift. The day shift staff are trained life skills providers or have a special education background. All new staff attend an ABD two-week training and an additional two-day training where they learn about their specific clients. Included in the team are the two DSO group leaders responsible for the group of twelve who recently aged out of their school districts. The young fellow, a delightful Peruvian born fellow (his origins intrigue our daughter) who received the more romantic appellation from our daughter early on, is the chick magnet who draws the girls group together. Another team member, the behavioral specialist (BMPS), will visit the girls at their apartment weekly and consult with the team. There is a nurse assigned to the team, also visiting on a weekly basis.
Shared Impressions: The two parent groups each had a private meeting with the team. Last evening the OM (other mother) called me. We compared notes and had identical takes on each member. They are a wow team, energetic, smart and eager. However, both of us were on the fence about the night shift. The OM and I are professionals in the health care world and have worked in settings with para-professionals and aids of all kinds and know the signs of the overworked, underpaid and probably exhausted, who are often working two jobs and raising families. The night shift staff gave off some of that vibe. Both women appeared detached and disinterested for much of the meeting, one of them earnestly yawning and rubbing her eyes. Exhausted. The other mother has pressing concerns regarding her daughter’s nights as the daughter has sleep issues. We pooled our fears and I made a call to the residential coordinator/backbone of the operation though the workday was over. “How rude,” as my daughter would say. But the deadline is Monday night when these girls are going to be bedding down in a new place with strangers and we are worried.
Diplomatic? Not Me: Mindful though I am of the fact that our coordinator has poured hours of her expertise and unbounded dedication into setting up this program, I do not pull punches. I asked for very specific data on the ladies references, the protocols of the night shift, and how the ABD staff measures whether the unwatched night person is doing their job. We spoke of how frequently they would check on the girls, how close in ear shot they would be, and questioned what the staff would be doing all night (cleaning minus the vacuum, amongst other tasks) and how can that be checked. I feel empathy for these women who are striving to care for others and yet some anxiety remains. The OM will be making a similar phone call tonight after work. I didn’t feel good either before or after the call. And my hubby, lurking in the distance, and prowling the garden, had a hands-off attitude. He is a part-time psychiatric consultant at ABD, has been for 25 years and is in no way concerned. I imagine he feels I am out-of-bounds or just silly. But I know as a mom that I am neither.
Suitcases and Final Touches: Today I take our daughter to her Pegasus Therapeutic Riding program and after some errands (she wants new PJ’s for the inaugural night) we will pack.
The First Night Will Be The Hardest; Or The First Week; Or the First Month: It is simply a matter of safety. I feel confident that the program is wonderful, the apartment outstanding, the location perfect, and most of the team terrific. But will she be safe all night? Every night? What is it about the night that makes us all so scared? I will keep the cell phone on for the first few nights, or weeks or months. And fingers crossed, I will hear great things and funny stories about the late night staff and feel reassured and hopefully rested too.
©Jill Edelman, M.S.W., L.C.S.W. 2011
