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

Texting While Sleeping: 1-15-12

Small Offshore Coastal Occurrence: This was one of those weeks where fatigue created a small offshore storm in our daughter’s special needs life involving a missing DVD and a whole lot of texting. Our daughter had requested that we purchase the DVD for the movie Dolphin Tale as her final, and I mean final, gift of the holidays. Unfortunately, to save a few pennies, I chose the less-rapid delivery system, USPS, and the snail, with a seven to ten-day ETA, lost the package. Our daughter had begun her series of texts (“when will it arrive?”) early in the process, coming to me with that ding of the iPhone while I was sleeping, working, driving or socializing. In other words, whenever she had a texting opportunity. Perseverating is the word that the special needs community uses to describe this type of behavior, which doesn’t easily respond to “redirection” or reasoning and is characterized by an urgency and anxiety not commensurate with the nature of the issue. And contagious, at least for this mom.

Texting While Sleeping: And so it was that I found myself texting while sleeping. This is probably a common occurrence in the dream states of younger folk, who would rather text than talk, and at last I understand the reasoning when a friend texted me while at the beauty salon “covering her gray” so that she could share some very private stuff in the presence of hair dryers, hairdressers and “social spies” who love a bit of gossip, even when provided by a complete stranger. Duh, no one can hear you! Got it. With our daughter, secrecy really is not a requirement but she has absorbed her peer culture and madly texts away. I responded to her texts using my uncoordinated digits making numerous errors which are further compromised by laughable substitutions (please iPhone, don’t try to read my mind or my digits) and finally reverted to the default position and called the gal, in the hope of placing a stop-gap to the compulsive texting. In the case of the missing DVD, a phone conversation alleviated nothing.

Lunatic Mom: Thus, in between texting and working, I was spotted wildly driving after a UPS truck (desperately and mistakenly) which I flagged down two blocks north of our home to inquire of the package’s whereabouts. The driver, checking his clipboard, assured me that the problem was likely our postal service. An hour later I invited our local UPS driver into my home office to view the tracking information on my computer screen who confirmed his colleague’s diagnosis: it was USPS, not UPS. Three phone conversations later with a local postal worker named Heidi and a kindly gentleman from Amazon’s help line did not resolve the mystery of the traveling DVD. Only late that evening, returning home in darkened surrounds, did I find the aforementioned package in our mailbox, probably delivered by a neighbor who wrongfully received the precious parcel. Desperate measures for so small a prize, lunatic mom.

It’s Always The Mom: What, you ask, makes this woman so neurotic? Well, many things personal and historic but one is certainly the contagious quality of our daughter’s anxiety and the pressure that I feel to reduce said anxiety to relieve both of us. The silliness of the ordeal – after all, we were not awaiting responses to college applications or emergency medical supplies – speaks to my inability to redirect our daughter or myself. This was a movie about a dolphin who sadly lost its tail, a movie she had already viewed on the big screen. And even though there is the lure of Harry Connick Jr. playing a staring role in the film, we had just seen him on Broadway in On A Clear Day, in the flesh. The next day, after delivering the item and having a delightful lunch with her, my fears that this would be a hell ride for a bit longer were allayed. However, on Friday at 3 P.M. I received a text, “I am exhausted”, and when I followed up with a call, our daughter burst into tears describing a helpless state of fatigue and other sundry problems that I couldn’t decipher over the phone. A subsequent conversation with staff went something like this: “She was fine until she spoke to you. I don’t know what happened. She seemed just fine.” So it’s me, mom, the trigger, the button pusher, the problem. Or is it me mom, the maternal permission slip that lets loose all the pent-up feelings of exhaustion and pressure built up in the child’s person? I do think it is the latter in this case. As I reminded the staff, a lovely young woman who is not yet a parent, “Moms bring out this stuff in their kids.” In other words, I didn’t create the problem, I just stepped into it.

Sleep Is The Answer: Blessed by the need to work for the next three hours into the evening, I did not view the following two texts assailing the staff person who was applying the stiff upper lip approach to our daughter, which tends to backfire. In the protective custody of my office chamber, I was unable to respond and by the time I exited at 7 P.M. to attend a friend’s birthday party, the last text was three hours old. I neither called nor texted that evening. I later found out that our daughter thankfully slept for twelve hours straight that night as well as the following night. Our conversations returned to normal, the feverish texting ended and our daughter took pleasure in her weekend activities which included the first session of her Pegasus’ Horses and Me Program, an unmounted winter program where students learn to groom horses, clean stables and receive education on horse health and anatomy. She loved her first class. She also regaled me with a hilarious description of her visit to a local cutting edge contemporary art museum, which she described as “BORING!” and puzzled aloud why a bunch of bottles stuffed with something would be called art.

Riding Out The Storms: Could there have been a better way to handle our daughter? I think so but I have never found out what it is. Is it me? Partly because my indulgent character is probably not an asset in these situations. Is it her? The difficulty with redirection is a characteristic of many children/adults with special needs and the added factor of exhaustion exacerbates greatly the behavior. For the last two decades I have ridden out these storms to the best of my ability. Whether our daughter resides in our home, four hours north at her boarding school, or in the next town, when she is in the throes of these obsessions she finds me, or staff finds me, and together we take that ride. Normal strategies backfire or intensify the situation. But one thing I surely have learned: I will never order anything from Amazon using USPS again. That’s what my UPS driver taught me. He said, “It just isn’t worth the few bucks you save.” You can say that again.

©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

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

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

Super Good Week: 12-5-11

A Complete Program: Last week ranks as the first ever where all pieces of our daughter’s independent adult life were up and running. Miraculous. For starters, she went to three volunteer jobs, and none of them had a glitch. Ridgefield Crossings, the senior residence, gave her the task of escorting seniors to their yoga class. Our daughter helped set out the equipment (not sure what that was) and participated in the activity. From what I could gather, since she texted me later, the seniors did their yoga sitting on chairs, “I like it better on the floor.” Okay.

SPHERE: That evening, Thursday, she returned to her SPHERE group after a hiatus during her “lapse” and apparently had a “ball” — even singing a solo of “Deck The Halls…” Friday she had both her ROAR job, and The Complete Cat Clinic, whose chores included combing cats and cleaning counters, “Which I did not like.”

Pegasus and Angelfish Therapeutic Swimming: Earlier in the week, she and her apartment-mate swam with Angelfish, with the director sending me a video of our daughter splashing the water with one of those foam noodles, having a great aquatic time. Saturday morning she attended the second-to-last of her Fall Pegasus riding classes where she jumped, which she describes as a sensation like being in a “rocking chair.”

Weekend activities included walking a staffer’s golden retriever Cinnamon, attending a holiday stroll through the Ridgefield community to participate in the festivities which included ice sculpture displays and culminating in a holiday party Sunday hosted by the male residents of an Ability Beyond Disability group home in town.

The Dream Week: Really, what more could a mother want? I visited with her briefly on Friday afternoon and didn’t hear a word from her until Sunday evening, when she called to follow up on an earlier conversation with the name of the actress who stole Robert Mitchum away from Polly Bergen, his alcoholic wife, in a made for television 1980’s World War II series “Winds of War” based on the Herman Wouk novel. The aforementioned Mitchum paramour was played by one Victoria Tenant. Who could figure that one out? She did.

The Interloper: I just returned from a quick visit with our daughter and found her, her apartment-mate and two staffers seated at the dining room area table. The two ladies were busy filling out a questionnaire of some sort. All were totally immersed in what they were doing, happy and barely lifted their heads to acknowledge my presence. I felt I had interrupted “family time.” And I think I did. The interloper. Though our daughter knew I was arriving to drop something off and take measurements for the Katy Perry photos we plan to hang above her bed, the staff did not know. I busied myself, than chatted for a bit, and went home, kind of feeling weird. The normal weird.

Kids All Grown Up: I think our kids are grown up now. All grown up in the sense that our home is just a temporary place for them now. A place to “come home to” but not to live in. Leaves a hole, doesn’t it?

©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

Have a Happy Thanksgiving from The Couples Tool Kit!

Jill is taking a vacation from the Blog this week for Thanksgiving. She’ll be back next week with new posts for both the Couples Tool Kit and Parenting Adult Special Needs: One Day at a Time. We wish all of you a Happy Thanksgiving holiday.

And if you’re looking for Jill’s posts about the stress and pressures of the holiday season, remember to check out The Holiday Toolkit.

Sunny With No Chance Of Angst; Medication Dilemmas: 11-20-11

Sunny With No Chance of Angst: We hope. The young ladies seem to have passed their first domestic crisis and spent Saturday attending a matinée of The Wiz at our local High School. Last heard from, our daughter was coming back to their apartment for a chicken dinner.

Medications in The Special Needs World: Given the propensity for negativity during “menses” we will revisit options including medication to circumvent a recurrence. We will also address the Seasonal Affective Disorder (one cousin recommended vitamin D) conundrum and anxiety. Our daughter’s history with medications for moods, anger, anxiety, and attention challenges is typical of the special needs community. Many of the students at her boarding school, Riverview, were on a pill potpourri ranging from seizure drugs to anxiety, depression and attention medications. Other health issues including diabetes and childhood arthritis were heard of through the grapevine. The health care center was the busiest place on the campus.

Medication History: As early as first grade, Attention Deficit Disorder medications were utilized periodically but they muted down our daughter’s already delayed speech development and her frolicsome personality and she would crash so badly that they were discontinued. In middle school her anxiety was treated with Wellbutrin and then Depacote was called in to moderate the frequent aggressive and defiant outbursts that were undoing us all. Those medications also inhibited her personality and eventually were disbanded but they did facilitate her learning tremendously. She entered high school sans medications but ended her challenging freshman on birth control pills to treat premenstrual and menstrual mood strife. (Her menses began at age 11 1/2, how ironic that the only area of development on the early end of normal was one of the most challenging for a young girl to handle.) They worked beautifully for years but when she gained weight we decided to give her a break when she graduated high school. Since then she has been medication free.

The Challenge: In addition, we did many trials of natural remedies and I worked for a long time with a naturopath who lived in a far away place and was a disembodied voice coaxing us along. To expedite this long-range treatment I was asked to provide a video of our daughter’s temper tantrums, which I later showed our daughter. She was pretty mortified and apologized. We did the full series of Auditory Sensitivity Training and of course the hallmark of sensory integration treatment in those years, brushing. Our daughter received occupational therapy, physical and speech therapy, naturally, throughout elementary school and continued speech and O.T. in middle school.

A Costly Effort: All parents of special needs of any kind, whether their child be cognitively or emotionally challenged, put hours and dollars into consulting, dosing and ruminating about what works, what makes worse, what burns out, what side effects, seen and unseen, might bring down the whole house of cards.

Talk About Complicated: This is one of the more complicated issues facing folks today in all areas of life. In my field, patients are constantly debating the usefulness of anti-anxiety and anti-depression medications along side fears of life long dependency, often labeling themselves as “weak” for choosing a medication manner for dealing with difficulties. Side effects like dry mouth, weight gain and loss of libido further complicate the process. For special needs parents, the medication issue casts prickly pangs of guilt as we the parents are often the deciders, which presents its own emotional burden. Seeing our children suffer uncomfortable side effects, lose their particular swagger and spirit, or feel somehow punished for behaviors they cannot control is agonizing and terribly sad.

The Proof Should Be In The Pudding, Really? Most psychiatrists today, also known as psychopharmacologists, mix cocktails of medications, customized for the particular medley of symptoms the patient exhibits. This is an art as my husband has educated me to understand over the decades, and requires careful monitoring of side effects, meticulous coordination with medical conditions, and most important, specific feedback well-listened to from the patient. This is no walk in the park for anyone and I have serious trepidation as we now revisit that can of worms with our daughter. Riverview teachers, staff at Ability Beyond Disability: everyone would love to see her on anti-anxiety medications, or medications that enhance focus and attention. Easier said then done. We have been there before and it can be a hellish ride. The answers rest with the young lady and we will approach putting any kind of pudding together very carefully, consulting with experts and for me, relying on my gut. I know her second best. She knows herself best.

The Proof Should Reside In The Pudding but the process of finding just the right ingredients for that pudding can rain havoc and misery upon our gal. The whole process has to have those bright plastic caution ribbons wrapped around it. This is no simple pudding.

©Jill Edelman, M.S.W., L.C.S.W. 2011