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 intellectual disability
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
Double Vision Wake Up Call: 2-6-12
Remain Watchful, Assume Nothing: I did get lazy, feeling too comfortable letting others care for our daughter. Reliable and wonderful persons but not perfect. Our daughter had an appointment to see her ophthalmologist who has been following her since childhood. I had scheduled a psychotherapy patient at the same time thinking staff would take her to what was to be a simple check-up. Alas a couple of days prior to the appointment, our daughter mentioned having some double vision in one eye, a condition known as diplopia which is a muscle weakness she had been diagnosed with previously. She had been prescribed glasses off and on over the years for the condition, which waxes and wanes, but had not needed them in well over five years.
Oh, Lazy Me: Here is the lazy part. My patient was traveling so I was uncomfortable tracking her down to change her time, as she was new to my practice. Instead I wrote numerous emails to the ABD (Ability Beyond Disability) staff telling them to call me when our daughter was with the doctor, also informing them of her “double vision” issue (which our daughter also planned to tell staff and the doctor). I reiterated that several times and sat through my session with cell phone nearby, having first informed the patient of the impending call. No call ever came in. Earlier that morning the staff person in charge emailed to ask again (!) if she should call me when with the doctor. Wasn’t I clear enough? I emailed back yes and never heard further from her. (Later I find out that she doesn’t have access to her email when on the road, though I emailed back to her within fifteen minutes.)
Again, Who Was The Decider Here? My only conclusion was that nothing much occurred so after the session I called the staff. Oh yes, all went well. The doctor (“He is so nice and funny”) gave our daughter a choice, glasses or an eye patch. She chose the glasses and skipped across the hall and ordered a pair. OH. Then I spoke to our daughter and got the real story. The choice was glasses or surgery (and probably the patch thrown in for a gal whose heart belongs to that great pirate Johnny Depp). And who made this decision? Our daughter and a young staff woman, without me.
Fit To Be Tied: Don’t you just love that expression, if you really think about the visuals here? But I wasn’t tied, I had both arms free and put in a call to the doc. The doctor returned my call and reiterated the choices: surgery or glasses. And again who made that choice? What was the doctor thinking? Honestly. I am our daughter’s guardian yet even the doctor did not seem to notice that a decision was being made by a staffer and a special needs adult. Hardly kosher and certainly not legal.
Notices Went Out: I actually felt scared, the kind of scared that goes along with “loss of control.” Now I knew all about this surgery for Diplopia. We had discussed it years ago. The doctor remains skeptical that our daughter will be able to sit through the snipping of a small muscle in her eye with just a local anesthetic. “She will giggle.” Yes, no harm in trying the glasses again. But never again will anyone make those decisions for our daughter except her guardians, unless there is an emergency. What did we sign all those papers for if no one is trained to understand their purpose? My question to the higher-level staff was how did this fundamental procedural issue get missed? Was the staff out that day or oops, forgot?
Oh That Slippery Slope: Here is that timeworn parental dilemma. We don’t want to ball out the staff (which for all parents at one time or another include teachers, camp counselors, principals and coaches) because they can grow to hate us and take their hatred out on our child. It is a very slippery slope to register a significant concern without raising your voice, without threatening anyone’s job, without using four letter words, without worrying that staff will take revenge on you through your child, yet making absolutely certain that this kind of thing is never, ever going to happen again. Also, I really don’t want to humiliate or maim anyone. These are good people but that is hardly the point.
Stupid Stuff: The senior administrative staffer knew just what to do with me. She got it and said all the right things when I tracked her down on the phone. The junior staffer defended her even more junior staffer with some gobbledy gook about being sure there is a “reasonable explanation.” First get the facts, don’t just stand by your staff by saying “I’m sure there is a reasonable explanation,” when you actually have no idea. Honestly, can’t people who are in a bureaucracy still retain the ability to have normal human intercourse without platitudes, jargon and BS?
My point was basic…putting aside for the moment my five ignored emails and misunderstood messages, someone didn’t understand basic protocol. Medical decisions are made by guardians unless there is an emergency, not staffers. This was to be a check-up and for a staffer to escort a client makes total sense. However, decisions regarding procedures that can be delayed should be passed along by staff to guardians.
Our Nightmare: This is what parents of special needs children fear most. That someday we will not be around and our adult children will be dependent on “providers” who are misguided, indifferent, distracted or destructive and no one will be there to stop that. That is why I became so frightened because this incident gave off a whiff of incompetence that unsettled me. Even now as I am writing this, I think how I need to emphasize to family who will oversee our daughter’s care after I am gone or going how much monitoring and checking in is necessary. This little excursion was relatively harmless, though I will have to revisit it all again after the glasses are worn for a while. But it was a wake-up call. Double vision indeed. Clear vision at all times, that’s what mom needs. And another wake-up call. When it is important, verbal confirmation is still best, despite all the emails and texts in the world. So I can say “Repeat what I have just told you so I can be sure we are both clear-sighted and on the same page.”
Choking Potential: But these people are really good too. For several years now I have worried about our daughter’s eating habits. Specifically that she puts too much food into her mouth at one time and adds more before she has thoroughly chewed and swallowed the previous intake. I don’t know if this habit developed during boarding school, feeling pressured to eat fast to get to classes and chores or what, but recently her rapid devouring of big forks full of food became really scary. My attempts to provide verbal cues were treated like so much mother vapor and blew away just as fast as they were emitted into the air. But lo and behold, the residential coordinator and staff noticed the dangers as well and contacted me to discuss the matter. Wow, I thought, they really are on the ball.
A Plan: Together we came up with a plan of action. Knowing what a visual learner our daughter is, I suggested the use of films that they found and viewed with her, mostly on choking and the Heimlich maneuver. The team then rapidly put in place a series of cues to enable our daughter to stagger her eating pace, taking sips of water, breathing between bites, chewing and swallowing thoroughly, putting less on her fork, and all coordinated with her apartment-mate who had developed similar habits. They are all working on this as a team, and our daughter, who loves to learn about the body, is soaking up the information including the hazards of ingesting too much food with the resultant consequences of indigestion, heart burn, and of course, choking.
Lessons Learned?: Too many to mention. But one is very clear. It has always taken a village or a team to teach our daughter many critical things and though I have to keep my watchful gaze on all, it is still very reassuring that I am not doing this alone.
©Jill Edelman, M.S.W., L.C.S.W. 2012
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
Typical Friends And The Cyber Social World: 1-9-12
Question: There are many wonderful friendships made along the special needs pathway both for our daughter and for her family. Devoted, kindly and generous souls who emerge via a variety of interfaces, and most last. But I have a question here. Have those friendships that grew out of typical peers helping their special needs classmates last into adulthood and on? I don’t anticipate an answer; rather, more of a discussion. Our daughter had some “typical” smart and loving peers from her one year at our local high school, though none from her years in middle and elementary school, before she went on to her special education boarding school. Seven years later, only one of those four is available for actual time together. Some of this is geography. But Facebook doesn’t require proximity nor does text and cell phone contact. Nope, I believe this is a matter of “difference”. At least in our case.
Unfriended: Is that the correct Facebook terminology? I believe our daughter has been unfriended by one of the two remaining typical peer friends from that earlier period. How do I know this? Not from prying but from her not commenting on a particular incident reported on my Facebook page by this peer that would have alerted and, in fact, been of concern to her. She said nothing, which was puzzling, so I mentioned the situation her friend was facing. She had no idea. I did my own search and saw that this name was no longer listed amongst her friends. Previously we had to remove the name from her “contacts” on her phone because she began texting a bit too much, which she understood, and agreed that…”taking temptation away is a good thing.” But the Facebook deletion, that could be quite confusing.
Requiring Translation: This is not the first such incident. The Facebook and phone texting world can be a challenge for a special needs young adult whose inclination to be unusually focused on someone can feel like stalking, inappropriate or embarrassing. On one occasion, a friend of our son told our daughter in no uncertain terms to stop commenting on his photos on Facebook. That angered her and hurt her feelings. I think it also embarrassed and confused her. She didn’t get it. Another “typical” peer did something similar but since she had learned from the previous young man, she weathered the second “rejection” with understanding. Facebook invites many mortifying moments for vulnerable teens and young adults. Perhaps mature adults as well. So I cannot say that a special needs young adult is alone in this mix. But there is a difference. Reading social cues or grasping implicit social protocol, cyber style or not, is very difficult for the special needs world. And now that this young man (and usually it is a male who inspires her most active communications) has dropped her, the teachable moment has arisen once again. It is not for lack of kindness or goodness on this young fellow’s part. Nope, it is simply from his experience. When he had an emotional crisis last year, our daughter texted him constantly and made what might have been embarrassingly sympathetic comments on his Facebook page. It is simply a practical and preventative measure to bypass further embarrassments. Hence, the unfriending. Alas, it is not so easy to teach the nuanced distinction between appropriate empathy and what might feel like over the top, awkwardly soppy comforting.
Social Fact Facing: Our daughter does not choose to read this blog. And though she has been invited to participate in it, she has not. However last week I asked her for some input for my latest installment and her response was “Saying Goodbye To A Friend.” That was her input. Again her focus was on a young man who was off to study abroad, a “typical” friend (most are her brother’s pals who get her and care for her, and for him best of all) whom she knew she would miss. This is what moves her. She will probably communicate frequently via Facebook while this fellow is abroad, though I imagine he will have little time to respond. Will our daughter discover that her other friend has removed her from his Facebook listing? I think so. Do I need to tell her before she figures that out? No. And maybe I am wrong, perhaps he is still there somewhere but I couldn’t find him. But when she does notice his absence on her page, we will have a talk. Probably she will have her own ideas about why she has been dropped. And from her own ideas, she can learn. That is the good news. And learning social nuances, whether in cyber space or down here on the ground, is necessary for all humans, isn’t it? Taking a page out of a social skills workbook for special needs is probably a good idea for everyone.
Painful Process? In earlier times, I felt more pained for our daughter when she hit the jagged edge of social transaction, with the subsequent confusion and hurt. Now I do see that she learns something useful from these rocky crossroads. Something, not everything, because as so-called normals, we know it is hard to walk in another’s moccasins, especially when our toes fall beneath their soles.
©Jill Edelman, M.S.W, L.C.S.W. 2012
Medication Rears Its Ugly Head: 1-2-12
The Holiday Season: We had no breakdowns this holiday. Our daughter spent Christmas weekend with us and New Year’s with her apartment-mate and staff and all went swimmingly! Well, almost all. She did have a bit of a setback that confusing Monday post Christmas when transitioning back to her CRS (Continuous Residential Support) life and a bit of a stomach bug conspired to create some tense moments. The usual gifting issues arose when an appetite for a new laptop case set off continuous text messages, exhausting an already super-tired mom, and finalizing several days later in a desperate phone call to the Vera Bradley store at a mall an hour and a half away. Transitions, as all parents know, can take the most resourceful children down, and special needs children find the shift from parental abode to school, dorm or new home particularly unraveling, even when the “home” is only twenty minutes away. It isn’t loss or homesickness per se that dogs the process. Nope, it is change, readjustment and reorientation. We all know what that is like.
Current State of Daughter’s New Life: We are now beginning the sixth month since move-in August 1 and a new calendar year. The machinery of daily living is rolling along nicely, with three volunteer jobs, loads of social and physical opportunities, and relationships with staff and apartment-mate in fine working order. One issue looms down the road: medication. Our daughter’s professional team has witnessed the impact of anxiety and attention issues on our daughter’s functioning and requested that we, her parents, review the possible benefits of medication. The relationship between anxiety and attention is the chicken and egg question that no one has yet answered. The week prior to Christmas my husband and I met with an Ability Beyond Disability psychiatrist (my husband is himself one of their treating psychiatrists and the two men are colleagues) to review our daughter’s status. For many years our daughter has been medication-free and the interplay of meds such as Ritalin, Wellbutrin, and others introduces that slippery slope that we slid down years and years ago, beginning in kindergarten and terminating in late middle school. Most medications mute down her sparkling personality, and though she becomes more focused, rob our daughter of her bouncy spirit and quick wit, intolerable losses. Some led to crashing moods. When younger and her behaviors took a more dramatic form, giant temper tantrums and refusals to go out to social events, the price was necessary to pay. Not anymore. That’s my position.
The New York Times: I had sent an email to the team reviewing our daughter’s past trials with a variety of medications as preparation for the meeting. The behaviorist and the residential coordinator met with us and the ABD psychiatrist. Wisely our daughter was not invited, as this was just a stroll down the medication lane without any plan to prescribe. It was the morning of December 21. The discussion was useful but I grew impatient with some of the dialogue because I have at the tips of my fingers complete recall of what ensued whenever our daughter was visited upon by some chemical cocktail, and though the psychiatrists know the chemicals, I know the kid. New medications were discussed and no decision, or even a decision to make a decision, ensued. The next day the New York Times, in their series on the treatment of the developmentally disabled in New York State, published an article chronicling the sometimes abusive use of medication in various facilities around the state. I am providing the link to the article not because our daughter is currently at risk for such treatment. She is not, because I won’t let that happen nor do I think anyone wants that to happen. But because it is happening to others, and the potential evil, even when “good” is intended, for medication abuse of the intellectually disabled is heartbreakingly real.
War Horse: Coincidentally, our family went to see the movie “War Horse” over the holiday, and the corollary for me of animal abuse and the potential for abuse of the intellectually disabled, or children, who cannot “voice” their distress or when they do, are not understood or seen as the authorities they are on themselves, rendered me in a painful puddle of tears and ambivalent about recommending the movie to anyone prone to such reactions. Of our family of four, I alone left the theater gutted, with reddened nose and eyes. But that is what mothers are for, isn’t it? To feel for those less powerful than we, and do something useful with that feeling.
Historical Concerns: There is nothing new here about well-intentioned educators, vocational or residential staffers suggesting that our daughter’s performance at tasks might benefit from medication. The last evaluation from Riverview in the spring of 2011 unequivocally recommended that the family review medication options. And so we are. But I am wary and wise from experience. Who knows? Life is long. Daughter has matured. And new meds are always on the horizon.
Stay Tuned To 2012 Parenting Adult Special Needs: One Day At A Time
©Jill Edelman, M.S.W., L.C.S.W. 2012
The Artichoke: 12-12-11
Update: Our daughter’s past week of adult living has been a hearty combination of successful vocational programming, physical activity and social fun. Actually, I didn’t see the gal from our brief interlude last Monday until Sunday evening, though we texted and talked. She swam with Angelfish, sang with SPHERE, cleaned and combed cats at ROAR and The Complete Cat Clinic and set up chairs for the elderly yoga class at Ridgefield Crossings. She attended two days of DSO (Day Service Options) and dined out with her dad at the Olive Garden yesterday after their Christmas shopping at the mall. The staff and her apartment-mate decorated a live Christmas tree for their living room, and though she was unable to attend her last Pegasus riding class of the Fall season because her roommate couldn’t be roused out of bed, she handled that disappointment with forgiveness and tolerance (we were notified too late to get her there on time on our own).
Balloon of A Moon: I was missing the girl, so by last night, driving back from a gathering in Manhattan, I called our daughter and then the apartment staff to ask if I could stop by for a bit. Affirmative. So I continued my journey up the Saw Mill Parkway, the night air super clear and an amazing yellow balloon of a moon floating above, actually to the east of my driver’s window. A wow of a moon bouncing along with me, like those sing along markers, keeping me company as I sailed up the ancient highway (ancient in the American sense of old), exiting on to Route 35 and entering the town of Ridgefield where I saw the most pleasing of New England Christmas sights. Main Street was lit with white lights shimmering up and down sidewalk trees and classic Victorian porches and the Ridgefield community center, a grand old mansion, was as if soaked in a vat of sparkly diamond juice, so ablaze was the building. As a Jewish girl from Long Island, the classic New England Christmas of modern times still bowls me over. Lucky girl our daughter, I thought, to live in such a beautiful town where joyful festivities are right outside her apartment door.
Tracking The Journey: I have been reading two books by parents of special needs children. The Anti-Romantic Child, A Story of Unexpected Joy by Priscilla Gilman, a glorious, personal and profound book and An Unexpected Life, A Mother and Son’s Story of Love, Determination, Autism and Art by Debra Chwast, wonderfully illustrated with paintings by her son Seth Chwast. Both tales start off with the kind of groping in the dark of discovery that “your child is different” that is almost identical to my own, where someone outside the immediate family points out that the child has issues (though the parent has already worried that thought) and the first response is to plead and pray with the powers that be, NO, this can’t be. And then the equally agonizing process of realization that the “difference” part is there and will never go away. That this child will not grow out of difference or up into anything completely “normal” ever, the signature of discovery that brands your parental skin with a searing and permanent marker. And grief for the child and the childhood that would never be. Loss, as Ms. Gilman so poignantly conveys, is at the core.
Half blinded by the piercing light of this revelation, the parents stumble along, from one specialist to another, starting the therapies, nose to the grindstone, reframing all that they knew and expected of life. But with time, hard work, and most importantly, getting to know your child freely while forsaking the “expectations” of the norm, liberation sets in and true appreciation of their very specialness and its gifts to you unfold.
Anti-Romantic Indeed: Priscilla Gilman’s title of her book cups in four words what those early days and months reveal: this is not your conventional parent-child romance. This is not the child who brings home the trophies, report cards, and bouquets for mom, who runs effortlessly through fields of tall grass, or trounces about in eyelet dresses wearing ribbons in her hair. Nope, this is a child of another kind altogether.
Dr. Powers: When our daughter was in first grade, the late Joan Parker, one of those angels who crossed our path during the “dark ages” of raising our daughter and the finest director of special services ever to work in our school system, referred us to Dr. Michael Powers for an evaluation, with the hopes that Dr. Powers would nail down just what was “different” about our daughter and maybe, I hoped, prescribe the silver bullet (still fantasizing that there would be such a thing, silly mom). Up until that point, we were dancing around diagnoses but never settling on one. Our daughter was so difficult to test, so anxiety ridden and resistant that I held little hope that this enterprise would offer anything useful. But fingers are always crossed. Just getting our daughter up to Newington, two hours or so away, without her tearing the car apart was a considerable challenge. But we succeeded and after some visits, I can’t recall how many now, Dr. Powers sat us down to tell us this: “Your daughter is an artichoke.” She was not autistic, too social. She had significant peaks and valleys so she didn’t fit with the flat trajectory of abilities of mental retardation either. She was an artichoke, with serious language disorders and math disorders, social anxiety, fine motor and gross motor issues and sensory integration issues, but capable of symbolic play, abstract thinking and social perception (he continued to observe her over the years and was the first person to assure me that she would definitely read someday, which she did and does quite well). But she was still an artichoke, and an artichoke she has remained.
Is This Romance? Yes, because I love artichokes, and unique individuals, and most of all, our daughter. And so do many other people, fortunately. As with the authors of the aforementioned books, the best part of parenting special needs is that you stretch beyond convention and perfection and welcome out of the box living and loving.
Safe Joyousness: Thank you Ms. Gilman and Ms. Chwast for telling your very personal stories. In fact, the hallmark of these stories is just how personal they are. Lucky us who walk on the wild side of parenting. No one ever thinks that we are lucky but these ladies know that we are. May that luck go with our children in their life long journey of embracing difference in safe joyousness.
©Jill Edelman, M.S.W., L.C.S.W. 2011
Phase ll Of Parenting Adult Special Needs: One Week At A Time
Back To Business: A full week away from writing my blog has been strange indeed. Though the time was bathed in the joys of turkey grease, sweet potato skins, family fun and amazing Fall weather, I do enjoy being back at the keyboard. A daily ritual was absent and no surprise that the experience was as if a part of me fell out of my identity kit. Perhaps I have turned into a “writer” as in a person who needs to write. I describe myself as a compulsive communicator, so adding this piece to my identity rounds me out quite well.
The CRS Open House: On the Tuesday before Thanksgiving, the Ability Beyond Disability team held an open house at our daughter’s apartment, mostly for ABD staff though the Ridgefield town selectman and two members of SPHERE were invited (none of them attended). The purpose was to provide a viewing of this new residential model to other staff who may be in positions to present the model as an option to new clients. The apartment looked amazing, with staff adding those little touches that make a house a home, including a series of small canvases painted with acrylics, grouped above the red couch, one by each of the apartment-mates, several by residential staff and a jointly composed abstract. The grouping is charmingly individual, with our daughter’s colorful floral composition, her apartment-mate’s sunny rainbow, and staff popping some touching mottos on top of original designs. Readers might recall that our daughter rejected contributions from her father’s ample supply of original oils, most of them landscapes, which surprised staff and the other mother, but made complete sense to me. After all, she is young, cool and “independent.” Dad’s wonderfully executed artwork did not match up with the aforementioned attributes at all.
The Third Storm Behind Us: I guess you could say the girls and staff have now survived three stormy episodes since the move-in date of August 1. There was of course Hurricane Irene, whose powerful winds returned the young ladies to their parental homes less than three weeks after the occupants took residence of their CRS. Then the Halloween Nor’easter that knocked down thousands of power lines and provided yet another round of outages, cancellation of volunteer jobs and general havoc. But most disturbing of all, Storm # 3, the Interpersonal Storm that lasted the longest (twelve days but who is counting?) during which time the apartment-mates were “not happy” with each other, “needed space,” resisted redirection, aborted attempts to inspire empathy via a board game and stayed loyal to the mantra “I am not ready to forgive her,” all ending on a wonderful note last weekend with a pre-Thanksgiving passing of the proverbial “peace pipe” so to speak, just in time to see “The Wiz” at the local high school. Whew!
The Other Mother And I: Throughout those dozen stormy days, the other mother and I never communicated, not an email, a text or a call. Wisely, I thought. We both know our daughters, are more than familiar with their “shtick” and at least from my end, saw no point in hashing it out together. I never called her to ask what she thought. I knew what she thought. It was the same thing I thought. This is what our daughters do, did, have done.
Pure Hell Revisited: Sitting next to each other on the red couch at the CRS open house after the guests left and the girls went up to their rooms to ready themselves for dinner and Angelfish swimming, the two mothers and the team spontaneously reviewed the episode. The staff spoke glowingly of the girls’ resolve to make up, acknowledged that it was tough going for quite a while but placed the emphasis on how well the ladies worked through this challenge. The other mother and I were less inclined to glow, having lived this journey too many times. In fact, sitting closely together on the red couch, mostly we chuckled, knowing full well that these ordeals are pure hell. And no amount of staff gloss or glow could cast anything positive on the process, except that they survived; the girls that is, still friends. As all said, the honeymoon was over, but the marriage remained intact. The truce was accomplished by the non-professional Saturday staffer who offers the most accepting attitude and placed her accomplishment in the hands of the “wonderful training” she received by the ABD professional team, “You trained me.” That’s cool.
A New Schedule and A Book: Now is the time for a change in the schedule of postings on parenting adult special needs. The honeymoon is over, the marital crisis abated, three volunteer jobs are in place, medicaid coverage has been reinstated, key staffers are on board, and our daughter has approximately five months of “adult independent living” (if you use the official date of onset July 1, 2011) behind her. I began the daily posts on April 1, 2011 and now will post weekly, on Mondays, to supply updates on the next months of her first year of adult life. An added focus will be on putting together a book of these days and writings with the hope that an even wider audience can benefit from our steps, missteps, learnings, failings, emotional highs and lows, bureaucratic bumblings and staff saves. Feedback is that the postings have merit for parents with “normal” children, in addition to parents of special needs offspring. Who knows? Our daughter’s star magnet quality seems to reach audiences far and wide.
Blogging Gal: Another possibility is to turn the gal into a blogger/critic herself. Many have suggested this, as she is adept at reviewing everything from movies to Broadway shows, restaurants to ice cream flavors. Just yesterday, her staff spontaneously stated “Whenever I want to know about a movie, I ask… her (our daughter.”)
Yep, so do I.
The Journey Continues: Please stay tuned. Perhaps the star magnet can offer some insights into her “world” directly, and I would love your feedback on the weekly posts. Let me know if the format works or not. And of course, thank you so much for checking in daily. For those who also read The Coupledom posts, I will be publishing more of those than I have in recent months, as my new schedule allows.
Fingers Crossed: My original goal remains firm: to paint a picture in prose for parents of adult special needs to view and use as a template of sorts to aid in reaching a satisfactory vision of adulthood for their child. As I have written previously, each state has its own confusing process, each adult child their own set of challenges and abilities, each parental body, their unique gifts and opportunities. Some folks do not need government funding. Some folks have children who do not qualify, in our existing state and national system of entitlements, for government funding, yet clearly are ill-equipped to live on their own. Whatever the composition of your child’s patchwork quilt of adult special needs living, if I can help or if this blog has offered something, well, that is very satisfying indeed. Fingers crossed our special children will all get to that place of safety in adulthood. That is the wish, that is the work.
©Jill Edelman, M.S.W., L.C.S.W. 2011
A Hairbrush, Forgiveness and Natalie Wood: 11-19-11
Happy Birthday To Grandpa: If our daughter’s maternal grandfather were alive today, he would be 101 years old. Wow. Our children never met either of my parents but their presence is felt by my children in my presence as their parent. Happy Birthday to you Dad.
A Wake Up Call With Horses: My iPhone showed a call made from our daughter’s apartment at 8:34 this morning, which I missed. Oops, I thought. Trouble still in the air, I felt a strong desire to ignore the call. But how could I? As I suspected, the apartment-mate did not want to accompany daughter and staff to Pegasus and watch our daughter ride. O.K. I jumped into jeans and other things and dashed to the apartment to take our gal to meet up with Sneakers, and Pegasus crew. Once at the apartment, instead of being greeted by grumps, my daughter and staff came out of the building smiling ear to ear. Apparently the girls had made up this morning. How? Staff explained that she sat our daughter down, reviewed the importance of friendship, the meaning of Thanksgiving (hey if the Indians and the Pilgrims can do this!) and Voila, the girls refriended. All forgiven but I still had to drive the lass to the horse.
Hairbrush: The day is beautiful and the riders jumped and posted for forty-five minutes. When we returned to the car, our daughter removed her helmet and began to brush her tresses. Stop! That brush again, weighed down by a collection of hair. Yes, I did. I asked if she had her other small brush in her purse, using it to pull that mat of hair out of that brush. I told her that I could throw the hair out the window (I didn’t) because birds use human hair in constructing their nests. “Oh good, they have a hairy nest.” Well, yes. We laughed, but I have to say the staff dropped the ball here. I guess they have other things to do, like meet as a security council and decide whether to intervene on warring nations. Priorities, Mom!
Natalie Wood: Pop culture and news being major attractions for our equestrian, naturally the re-opening of the case of Natalie Wood, a current hot topic, dominated the conversation on the ride back to her CRS. Natalie Wood, known to our daughter mostly as Maria in the film version of West Side Story. (You mean she wasn’t the one singing? Sadly no.) Now let’s see. Was Christopher Walken having an affair with Natalie and did hubby Robert Wagner find out, fight with his wife and then… (drum roll), either push her into the dark seas or not look to find his gorgeous wife? And, my daughter wondered, did they have children? I think so. And why did this come up now? All great questions. Our daughter concluded: “I don’t think they will ever find out what happened. Like with Jon Benet Ramsey, they never did find out who killed her.”
Pop Culture Commentator: Shouldn’t this girl have a gossip column? Or at least be a movie critic or pop culture commentator on cable? Love to get her career launched. The animal specialty has had so many blips, makes one wonder if another direction would be more reliable. When can I get this girl to write her blog, her book? I have invited her to contribute to my blog. She smiles but nothing happens. Oh well.
Setting Positive Patterns For Future Skirmishes: This round of interpersonal difficulties at the CRS with spill over to SPHERE, took up ten tedious days of my life (It’s not about you Mom) and the lives of the girls and their staff. My hope is that now that they have a paradigm for how to resolve conflict, they will get to the resolution sooner, with the likelihood that since their (“girl thing”) cycles are in sync, we can ward this conflagration off by a variety of measures not worthy of discussion at this time.
Fingers Crossed!
©Jill Edelman, M.S.W., L.C.S.W. 2011
War: 11-18-11
The Honeymoon Is Over: Coming off of her Katy Perry moment replete with a meet, chat and photo-op, I was hopeful, with a measure of trepidation, that our daughter would return to her CRS in good spirits and a bountiful heart. Alas, no such luck. Her mate was battling her own demons this week, some reactive perhaps to our daughter’s (angst is contagious, anxiety is viral, and all of it is provocative) as well as stuff of her own making, so the last twenty-four hours have been fraught with clashing wills and words, culminating in a few really bad moments. Oh dear.
Stuck Together: It is three and a half months since the ladies began their shared life and the last eight days have been the most serious challenge for staff in the interpersonal conflict zone. Apparently the assistant residential coordinator and the vocational life skills person sat down with two young ladies this afternoon (each back from their volunteer work) to play a “social” board game aimed to create understanding and forgiveness. It backfired, with both girls accusing the other of being at fault. Our daughter called crying, full of indignation and anger. The other young lady’s mom had taken her out this morning to get some air. Nothing much is working now and both are off to their rooms, our daughter busily texting and calling me. It is very difficult; after all they are “stuck together.” The suggestion that they go to the recreation center this evening to exercise/exorcise the demons within was met with “I don’t want to go with her.” However, they do have to go “with her.” One staff, two gals, one car, one home. Sounds a lot like real life, doesn’t it? Siblings, spouses, limited space and the complete absence of empathy for the other’s experience.
Couples Crisis Intervention Needed: Couples therapist though I am, I cannot negotiate this one. Once I did a couples’ session with our daughter and her boyfriend. I had to, as they blew up at each other in a public setting and I was the only parental body on the premises, the others blissfully off snow tubing. I dragged the two love doves to my car, where the young man desperately tried to explain his feelings while our daughter shut down, though she was willing to offer minimal comfort, some hand holding and mouthed the words “I forgive you.” But she really never did fully forgive or maybe she forgave but never forgot. Sadly for both of them. The music from Sweeney Todd, the Johnny Depp version, was playing in the background, my choice to give our daughter a focus as she was not engaged in the therapy process at all. Was I successful? Sort of, it calmed them down for the rest of the weekend but ultimately they never fully recovered their bond. Probably needed ongoing work, as all couples do.
Dad To The Rescue: My husband just called his daughter to offer his services, a ride to the mall, a bite to eat. She turned him down “I am not in the mood.” Cheeky girl. Well, I for one am off to work and grateful for it.
Fingers Crossed: We can’t blame the full moon, that’s passed. Their cycles, waning. Jealousy? Too much proximity? Whatever, fingers crossed they will remember that they care for each other before much damage is done. That is always my hope for my couples. Come in before the bruises form thick scar tissue and accrue, like plaque build-up on artery walls, repair impossible. These are young girls, after all. Young hearts. Clean arteries and hopefully a bright future for their “shared life.”
©Jill Edelman, M.S.W., L.C.S.W. 2011
