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
Who Defines Disability? The DSM V and Autism: 1-23-12
Who Defines Disability: The New York Times last week published two articles back to back regarding the controversy in the medical and special needs communities over the revamping of the Autism Spectrum diagnoses including Asperger’s Syndrome and Pervasive Developmental Disorder NOS (“not otherwise specified”) for the 2013 publication of the DSM V also known as the Diagnostic And Statistical Manuel Of Mental Disorders. This is a large volume produced by the American Psychiatric Association and is the bible that guides the medical and mental health community in establishing parameters for the diagnostic categories that determine insurance coverage, treatment protocols and special education categories. The concern is that by refining Autism diagnoses, those with the milder forms such as Asperger’s and PDD-NOS will no longer qualify for treatments that have been deemed essential for their development. The fear is that services such as speech and occupational therapy, neuropsychological assessments and social skills training covered by insurance companies or provided by public school special education departments would no longer be available to children who now qualify under the current DSM IV designations. This is scary business for many families and touches upon issues that make raising a special needs child riddled with fear and feelings of powerlessness.
Spared For Now: Our daughter is not one of those with an Autism Spectrum diagnosis. She falls into the amorphous category of cognitive disability, neurological impairment or the stigmatizing and hateful Mild Mental Retardation, yes that word, (DSM V may use the diagnostic category Intellectual Disability in its place) because her I.Q. meets those requirements, though I prefer Dr. Michael Powers’ description that she is in fact an Artichoke. That is why years ago when her scores came in, it was clear that when she aged out of our school district at twenty-one, she would qualify for life-long adult services, as long as we lined up all our ducks before her eighteen birthday. Ironic indeed. “You never know what to wish for.” Nope.
Mon Dieu: Over the decades as we fumbled along the special needs highway toe-to-toe, heel-to-heel with families whose kids were each unique in strengths and weaknesses, I began to recognize how arbitrary these designations can be. The New York Times provided yet another article that underscores the mercurial nature of this process. A documentary on the treatment of Autism in France revealed that some mental health clinicians, specifically in the French psychoanalytic circle, treat Autism as a psychological trauma brought on by a cold and frigid mother. Mon Dieu! This notion, once sadly popular in the United States and similar in its horrific accusatory nature to the notion of the “schizophrenogenic mother” that reigned as recently as the 1970’s, apparently still has adherents in France. Rather than viewing Autism as a medical disorder that benefits from behavioral treatments and training, there are French children who have ended up as psychoanalytic patients to the point of being placed in an “asylum” for six years to undergo psychoanalysis. Frankly, as an American trained psychoanalyst, I find this fact particularly mortifying.
In other words, how a “condition” is viewed by the medical and mental health community determines the fate of the individual and history has shown how mercurial, judgmental and destructive that view can be.
Our Friends: Our daughter has many friends from her years at her special education boarding school Riverview whose diagnoses are on the Autism continuum, yet with I.Q.’s too high to qualify them for adult services. With the impending revision of the diagnostic categories that allowed these children services, fear is spiking that the current crop of children will not meet the newly revised DSM V qualifications for developmental services. Without these services, how will these children grow up to become successful adults in a social world?
Revision Sample: I have reviewed the DSM V revision sample online. Take a look. It seems pretty comprehensive and inclusive to me so please let me know if I am missing something.
Short Term Solutions Become Long Term Drains: There must be no doubt that providing the tools for successful adulthood, in childhood, is a benefit to all society. While still supported by their parents with shelter, food, clothing, transportation, medical services and love, children in public schools can be taught to socialize and communicate with their peers in their communities at far less cost to the government, the tax payer and society in general. If those same training tools were withheld, that would render the adult versions of these youngsters more likely to become burdens to the medical and legal institutions and places enormous stress on their families. And stress of that nature, research has shown, introduces additional costs to the medical and mental health arena as well as taking a big bite out of worker productivity. Short term cost cutting solutions, where human beings are involved, evolve into long-term drains for all.
Fingers Crossed: By the way, our intellectually disabled daughter just completed reading forty pages of “My Sister’s Keeper” in two days (“I like the movie better)…the Jodi Picoult novel for high schoolers and adults and will probably finish it off pretty soon. (Ms.Picoult is popular with women’s book clubs.) Does our daughter comprehend it? You bet, enough to know that the hot guy in the movie has not appeared in the book, so far. But can she pay a bill, safely cross the street, travel on her own or make critical decisions in an emergency? No. But she sure can read, thanks to years of special education services! Fingers crossed these precious special education resources will remain intact for the severe, the so-called mild, and all those in between whose success in adulthood depends on them. Fingers Crossed.
©Jill Edelman, M.S.W., L.C.S.W. 2012
Uneven Terrain: 12-19-11
Ducks In A Row: Our daughter had a superb week, all ducks in a row, clear, cool weather including a day of Christmas shopping with mom at the mall, followed by an unexpected outing with both parental members to the Yale Museum of Art yesterday. Her apartment-mate was under the weather, which left our daughter with the option of staying in or hanging out with us. She chose us and delighted in the early American portrait paintings of ladies in ribboned, indoor bonnets (aka mob-caps) and was particularly intrigued by a painting of a view from the World Trade Center prior to 9/11. “I am going to tell Ms. Shannon about that when I see her at the DSO tomorrow.”
Ten Pounds: One of the goals of her new adult life was to shed the extra ten pounds packed on to her small frame the last two years at boarding school and she did it! An amazing accomplishment recommended by her physician and facilitated by her residential staff. The young lady is very proud of this achievement, twirling around in the petite section of Macy’s to reveal her svelte frame, and I am very relieved. Portion control seems to be key in addition to low sodium and unprocessed foods. Hoorah. The Ability Beyond Disability staff: when they set a goal, they mean it. Very impressed.
Not Within Reach: What still strikes hard at this special needs parent are the jolting reminders of disability with basic concepts. Our daughter informed me that her plaid wool jacket had a tear in the armhole seam and needed repair. She attributed the tear to her weight loss. Excuse me? Yes, “My jacket is too tight because I lost weight.” Without attempting to replicate our conversation, I wish to convey that we had a rather lengthy discourse on how losing weight should have made the jacket looser rather than the opposite, hence reducing the likelihood of a tear in the seam. This dialogue matched many such excursions into wardrobe confusion. Shoes that are too small are often too big. A young man who is short in stature is “shorter than me.” He is not. The jacket is ripped in the seam, but the culprit appears to be the hoodie she wore under it this Fall, rendering it tight indeed, weight loss aside.
Analog Watch: Does anyone really know what an analog watch means? I do now. “A clock or a watch that represents positions on a timepiece with dials” or “of a time piece having minute and hour hands.” Such was the holiday gift our daughter received from her cousin. The watch is cool with a big round face, purple in color with roman numerals marking the hours. Not only non-digital but also non numerical. Oops. Here is another non-computing arena for our daughter. What is the neurology of her brain, this uneven terrain that can absorb fountains of information and apply it not as an idiot savant but with meaning and useful application, yet struggles to distinguish short and tall, causal relationships of less and more, half a cup, time, money? Who can grasp historical significance in the story of Anne Frank and yet read fifty-nine dollars and ninety-nine cents as fifteen nine nine, not a typo. These lacunae of knowledge are characteristic of the category of life our daughter occupies, where deep gaps of understanding render cooking (recipe measurements), budgeting, and all matter of spatial correspondence outside of her avenues of “mastery”, so far and for so long, despite hours of IEP protocols: “…shall count up to one hundred pennies…”
Uneven Terrain: This is the uneven terrain of adult special needs. I am awed by our daughter’s literary achievements; reading and writing skills increase monthly. Vocabulary grows, conceptual awareness deepens. But the terrain that rests within her brain that eludes change, will that ever be different? Life is long. Much is possible. In the meantime, these needs and many others require that our daughter receive services to make her world safe. Fingers crossed, those services will always be available…to walk her across a street, help her make a hot meal, and figure out whether the shoe fits or not. If it fits, Voila, wear it.
©Jill Edelman, M.S.W., L.C.S.W. 2011
Two Lady Grumps With A Lot To Share: 11-3-11
Senior Residence: Surprise, Surprise, Ridgefield Crossings start date has been delayed another week due to power outage. Still waiting to hear from Roar, postponed last week due to Ringworm. These vocational settings have been fraught with problems, though the trustworthy Complete Cat Clinic has remained steadfast and true so far.
Medicaid Update: Looks like the bureaucratic glitch was just as anticipated: “It (the waiver application upon which the Medicaid approval is dependent) is in Hartford in the waiver unit’s possession. They hope to process by Friday…” so says the regional director. Makes sense, it is after all, her birthday on Friday. Fingers crossed they won’t mess around with the promised “entitlement” gift of the aged out independent young adult gal.
School Was Easier: The years our daughter spent at Riverview were far less taxing from a parental perspective. She was surrounded by staff, four hours away, and we didn’t have to fight for anything beyond some occasional social facilitation when “drama in the dorm” reared her ugly head, or heightening awareness of academic oversights, and touching base with health care regarding sinus medications and other minor health related activities. Her new life has kept me busy almost daily since June, setting up and now follow through, even though she is with an excellent agency. Is it me? Or is it that Phase 1 of independent adult living takes a village and a half to get it launched. That plus two power outages since she moved in, and all kinds of vocational placement problems, have kept things lively. Too lively. And of course, this latest “entitlement” conundrum.
Who Knows? Will Medicaid be fixed by Friday? Will Roar reopen Friday, freed from the taint of Ringworm, to allow our daughter to attend her first actual volunteer day? Will Ridgefield Crossings open its doors next Thursday when our daughter is rescheduled to meet the senior female resident with cat to embark on her new career as “companion?” Who knows? Not I.
Just As An Aside: For those readers who do not reside along the east coast between Maryland and Maine, most of normal life has been cancelled or postponed in these here parts. For our daughter, her Sphere rehearsal, scheduled as usual for Thursday evening, will not be happening as a tree apparently has fallen into the room at the church where the group meets. Pegasus Therapeutic Riding program sent out a warning that they may have to cancel all classes this week due to lack of power. And most Halloween events, except for the small party at our daughter’s Ability Beyond Disability DSO on Monday, have been postponed until next week. Can you actually postpone Halloween? At least candy, as a rule, doesn’t spoil, though the food in our daughter’s CRS apartment fridge and freezer that I observed being hauled out in white garbage bags to the bin, sure did. Still can’t get a fresh piece of meat at the local supermarkets…and I am lusting for a chicken thigh.
Follow-Up On The Grumps: Our daughter called last evening to fill me in on a hysterical episode of “The Big Bang Theory” in reruns, where Sheldon has long dark hair and polishes Penny’s nails. She followed with a short synopsis of a Seinfeld that I couldn’t identify from her description and ended by apologizing for her grumpy mood on Monday. She ascribed her’s to her sinus infection and fatigue. I too apologized for my grumpy mood, tying mine to my tummy virus and frustration with the Medicaid debacle. Two lady grumps with a lot to share, mutual forgiveness, and much fun ahead.
©Jill Edelman, M.S.W., L.C.S.W. 2011
Oldies but Goodies: Parenting Adult Special Needs: One Day At A Time
Jill is taking a break from her daily posts tonight and tomorrow night, so since it’s Rosh Hashanah and the start of a new year, we thought it was a great time to revisit the very first Parenting Adult Special Needs: One Day At A Time post from March 30, 2011.
Excerpt:
Your Child Is Coming Back To A Town Near You — Or Maybe They Never Left: Our daughter is graduating this June from a special education boarding school and returning to her home state of Connecticut after five years living with peers in a dormitory setting where all needs were met: academic, social and vocational. Now at 21 years old, according to Connecticut’s state law (each state has its own “age out” number, some are 22), our local school system is no longer responsible for her educational and special needs, and by extension, nor is any other school setting. Instead, our daughter is now in the hands of the Department of Developmental Services (DDS), SSI and other non-profit and governmental bodies…
You can read the full post here:
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 Juliette 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
