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 couples toolkit
Mom, I Know I Was Born With Eggs: Parenting Adult Special Needs One Month At A Time
Checking In: More than six weeks have gone by since I last posted on our daughter’s adult special needs life, and a busy six weeks indeed. During that time our twenty-two-year old daughter started a new volunteer job at Best Friends in Norwalk, an animal daycare and grooming center, and continued her two other vocational pursuits at The Complete Cat Clinic and ROAR. She began a trial a low dosage course of Focalin, a medication to enhance attention and focus, attended a staff’s wedding, greeted guests at her agency’s (Ability Beyond Disability) Gala, and won two medals at the Connecticut Special Olympics Trials in New Milford. She celebrated Passover at a family seder in New York City and a cousin’s Bat Mitzvah in Gaylordsville, CT and continued her Pegasus Therapeutic Riding Program and SPHERE and began Special Olympics aquatic practice sessions, all weekly activities.
The Ability Beyond Disability Day Services Options (DSO) launched their book club in response to our daughter’s suggestion. Their inaugural selection, I believe, is Beezus and Ramona, by Beverly Cleary. The DSO has expanded their weekly activities to include more springtime related events for their clients.
Not Just Doing, Growing Too: Does the gal sound busy enough? Yes and she is quite content too. The Focalin has increased her attention span, setting off a cycle of gains that include more success on the jobs by improving both her tolerance for frustration, her self-esteem and her mood. I was very wary of placing her on any medication after previous experiences, but I am grateful to the ABD staff for suggesting that we give the medication a trial. To my ear, when we chat on the phone, the Focalin clearly gives a boost to both how she articulates her thoughts and to her level of enthusiasm about the topics she shares with me. Clarity has improved as well, probably as she has more energy to put into her speech, so that I am not constantly saying “What?” which had provoked her annoyance during our phone chats. To date there are no medication crashes or side effects. So far so good. Fingers crossed.
Gratefully Stepped Back: But she is not just busy, she is growing too. Her relationship with her apartment-mate has deepened, so much so that when they have drama in the dorm/apartment blips they are short lived. She continues all her Internet hobbies, social networking, searching history sites and plowing through movies on war and love. As a family we have settled into a twice-weekly routine of visits, sometimes with both parents, sometimes just one of us, for lunch, an outing or a family event. I have gratefully stepped back to allow the staff the full reach of their day-to-day responsibilities, trusting in their expertise and judgment, with a newfound sense of security that they know her well and don’t need my constant input to provide optimal care for her.
Deficits That Challenge But Don’t Derail Her Growing Maturity: A sure sign of her sense of safety and comfort emerged during a two-week period when my husband and I took a road trip south and our daughter, though struggling with the confusion of our changing itinerary, did not demonstrate any significant struggles with our absence. She relied on texts and phone calls to keep herself connected and to figure out where we were each day and whether we were driving or flying, staying in motels or at a familiar destination in Florida. Her texts revealed, more than anything, her continuing challenge organizing time in a sequence that might have provided her with an orientation of our whereabouts. Unfortunately her deficits didn’t allow her to track our journey nor did schedules or calendars sufficiently fill the gaps. Despite this confusion, her routines were not disrupted, no significant interpersonal clashes with staff or peers ensued and we found her in great shape upon our return. Awesome indeed! A signal both of her comfort level in her new life and her increasing maturity.
A Parallel Journey: My time has been taken up with editing the book of collected posts on parenting adult special needs, for a summer e-book publication, which has imposed a revisiting of the entire process twice so far, a challenging enterprise which often has me cringing and blushing with embarrassment at my own behaviors, tearing up at moments where the pain is still so accessible, and of course, joyfully incredulous at just how lucky we were and are to have gotten to this place. That awareness and gratitude never leaves me. Rather it guides me to offer help to other families of aging out special needs children, many of whom I am meeting for the first time through Ability Beyond Disability, Pegasus and Angelfish, and some of whom I am re-greeting as their children age out of our local school district. My daughter and I bump into her former special education classmates or their families in stores or restaurants hither and yon. Just today our daughter called me to say she reconnected with an elementary school buddy who returned to our town after years away at the Perkins School For The Blind, returned to fight with DDS (Department of Developmental Services) for services, a fight that I knew of from his family. Blind, cognitively challenged and fighting for services. This is the nature of the system – nothing granted easily despite hardship and an unknown future.
Scenarios That Remind Me: It is not unusual for me to hear from my own psychotherapy patients or friends the stories of families with middle-aged special needs children whose parents are elderly, developing dementia or other incapacities while siblings and extended family are scrambling to find a program, a residence, a life for the now older and often isolated special needs adult whose dependency on the now aged parents has expired, in a sense, and a new life has to be created for them. This is the bullet I sought to dodge, and when I hear of these desperate scenarios my heart sinks for everyone involved.
411 (Sex Education): Sometimes I miss our daughter though she is only twenty minutes away. But our lives are separate; she no longer lives in our home, there are no “school vacations” when she returns to the family abode to rest and regroup. And when I do see her, what knocks me over each time is not just how much I love her or how cute and clever she is, but how quick and smart is her out of the box humor. Here is a sample:
In a drive to the mall last week to purchase a gift for her cousin, a conversation evolved around sex. I cannot recall what triggered that particular chat but what ensued was the following:
“Mom, you know those 411 sex education classes we had at Riverview?”
“Yes.”
“Some of that was embarrassing.”
“I can see that.”
(A little more related chatter on sexual matters mechanical and otherwise.)
(Then a pause and a slight turn of a head in my direction, glimpsed from the corner of my eye, a hint of a smile, and then__)
“Mom, I know I was born with eggs. What I don’t know is if they were hard-boiled, scrambled or poached.”
All we needed was one of those drum rolls that follow a knockout stand-up line. Where does she get this stuff? Right out of her hat. She is a hoot and a half and those who get to hang out with her are the lucky ones.
Dating Adult Special Needs Style: Recently a young man who is also a client of ABD asked our daughter out to the movies. The date had all the conventions of a dating sequence of old: it started with two people getting to know each other while pursuing a common interest; followed with the male calling the female for a date; and then a scheduled night at the movies. Very 1950’s. What was different even from the 1950’s conventions was the involvement of ABD staff who okayed and supervised the event. No one directly asked for my approval though I was informed prior to its occurrence, with, I am sure, the possibility that I could have weighed in one way or the other. That aspect felt just a tad strange. However, since our daughter had been in a previous relationship some years earlier while at her boarding school, the thrill of that “first love” passage fulfilled me then so completely that when I heard that same excitement in the staffs’ voices that I had felt years earlier, I was happy for them. I have grown too, and know that whoever cares for our daughter deserves to feel the joy as well as the gratification for her successes, her passages and her new adventures.
Resources: I conclude this post with one important request. As I continue to prepare my book for publication, I am compiling a listing of resources that will be added to the book to aid others in their journey. I would like to invite readers to submit suggestions for the resources section so that all might profit from our experiences. To do so, send me an email or post a comment on the blog.
Monthly Posting: Some readers who had followed the daily and then weekly posts on parenting adult special needs have missed reading about our daughter’s journey. And I miss writing about it. So for those who are interested, as of this month, I will post on the life of our adult special needs daughter, one month at time. Stay tuned. I hope you like it.
©Jill Edelman, M.S.W., L.C.S.W. 2012
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A Smart Mother’s Day for The Coupledom
Your Mother, Her Day: May 13 is Mother’s Day and the material world is busy reminding us to commemorate our mothers with flowers, jewelry, breakfast in bed, and dinner out at a special restaurant. Though this tradition of honoring motherhood has ancient roots, the current version began in 1907 when Ana Jarvis, desirous to honor her deceased mother, proposed that one day a year be set aside to honor all mothers. And so it was that Woodrow Wilson designated the second Sunday in May as a national holiday for that purpose. The appellation was in the singular form, Mother’s Day, not the plural Mothers’ Day as it is sometimes used today, underscoring the very personal and specific focus on your mother, her day.
Many More Moms Than You Think: This all sounds pretty easy. But it is not always that easy. For instance, who is in charge of making sure that mom is celebrated? When the children are too young to shop or make French toast, the task usually falls to dad to ensure that mom feels special on her day. And that same man often has his mom and perhaps his in-law mom to factor in as well. There might even be a step-mom who expects some acknowledgement of her role for all those weekends together. Sisters are moms too. And here is the man, one man, three moms, some young children and a lot of confusion. How do you prioritize all these moms?
The Mother’s Day Irony: It is ironic that a day set aside over one hundred years ago for children to show honor and respect for their mothers has evolved into a task for husbands who are often at the helm of making the celebration reach a pleasurable conclusion for their wives. Hence, The Coupledom’s role deserves attention as we approach yet another Mother’s Day in the U.S.A.
Triangulating Mother’s Day: One sure-fire way to make a mess and misery out of mother’s day is to view it (often subconsciously) as a competition for “Most Important Mother Award.” Spouses, partners, everyone has a mother and most are alive and young enough to know if they are being sufficiently honored by their sons and daughters on that one day a year devoted to their loving sacrifices. Divorced families may add another twist when step-mom and step-grandma have played roles of maternal significance, and in so doing earn a place in the Mother’s Day roster of significant maternal figures. The permutations and combinations are endless and the potential for guilt, hurt and the resurgence of old wounds is palpable. Neither Hallmark, nor Macy’s, Target, 1-800-Flowers or any other merchandiser has figured out how to make all the moms feel satisfied and all the husbands, daughters and sons relieved. This goal falls into a different category of expertise.
In previous posts I have dealt with the tendency for The Coupledom to find themselves in a triangulated relationship that brings havoc to an otherwise happy home. Mother’s Day provides ample opportunity for just such triangles. Being pro-active as a couple to prevent this possibility means sitting down and talking about how to tackle potential complications with open minds, and the mom working hard not to personalize pragmatics while still feeling entitled to put her needs and preferences forward. This is a balancing act for all that takes some self-discipline, foresight, mutual respect and honesty.
A Developmental Approach To Mother’s Day: A useful perspective in assessing how to plan for the day is taking a look at the developmental stage that the particular mother is in. New mothers and those in the throes of raising young children really do need a break, as well as perhaps breakfast in bed. Feeling truly appreciated for her hard work may be best shown by doing some of the work for her and also providing an outlet outside the home for herself or The Coupledom to play and have fun without pressure or responsibility for the care of others. The mom of teens is probably still hankering for that break and the affirmation of her as a woman/wife that a husband can provide but women at both stages revel in the joy of being surrounded by children who are excited to show their appreciation. For the mom whose children are out of the house, everything shifts and the focus might be on efforts to bring all the children and grandchildren together. But here again, more than one generation of moms in the picture requires sensitive and thoughtful attention and communication on how to best honor each of them in ways that correspond to their stage of motherhood. Grandmothers are certainly important but the daughter or daughter-in-law who is in the trenches of caretaking children may be the mother most deserving of attention and consideration.
Husbands Are Sons Too: Obviously husbands as sons have pressures and obligations that pull on them as well. That is one of the reasons that it is crucial that the couple be honest and open with each other when making their Mother’s Day plans so that the day is just a day and a good day, not something that lingers as a bad smell or another grudge to haul out later to make a point.
The Smart Mother’s Day: Have a smart mother’s day that avoids traps and triangles, with a Coupledom that actively collaborates on how to make it the best day for mom, even with some surprises. What you don’t want is the surprise of hurt or the toxic infusion of competition. The Coupledom should roll out of this year’s celebration with shared warmth and a strong working engine of love and respect.
Good luck and Happy Mother’s Day.
©Jill Edelman, M.S.W., L.C.S.W. 2012
A Divorcing Option: A Gracious Ending
The Possibility of Closure and Release: Once again Sunday’s The New York Times has offered an article that warrants attention. Briefly, as I am still on the road with my Coupledom, I want to draw your attention to Abby Ellin’s review of a new trend in divorced, divorcing or breaking-up Coupledoms. (I would say, former Coupledoms.) Entitled Untying the Knots, and Bonds, Of Marriage the author describes a trend among former couples who are finding solace, comfort, closure and release through the enactment of some agreed upon ceremony, moment, or exchange that marks, with grace, the end of their relationship, even if that ceremony occurs months or years after the legal demise or break up was factually finalized.
Still Sticky Stuff After All These Years: In a sense, what folks are striving to do is to remove the sticky goo that adheres to the person’s emotional skin like suntan lotion after a day at the beach, sticky with a film of gritty sand that doesn’t brush off.
In one of my earlier posts, The Divorcing Coupledom: the Art of Uncoupling, I focus on the importance of honoring what was once a chosen bond, a family, a shared life, though that life may have lost its way. As with all the significant passages in our lives, those of joy and those of sadness, those fraught with anger and conflict, something remains unfinished and knotted up if not provided with a ritual, a moment, a sharing. How wise it is to understand this: imperfect mortals as we all are, how can our vows be always perfect too? Can we, former lovers, become something new with a shared understanding of loss and free ourselves to move on without trashing, bashing or attempting to deny that once there was a love, and now there is something else? And to do so for the dignity of that former Coupledom, and for the children that may have emerged from its joining?
Crazy? Impossible? I don’t think so. Life is long. And options remain. Nothing feels better than letting go of goo and finding personal renewal, even when it may involve holding hands for just a moment with the past. What isn’t always clear in the wake of pain and profound disappointment is that when you try to sever a part of your life completely, you cut off a piece of your self.
©Jill Edelman, M.S.W., L.C.S.W. 2012
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Oldies but Goodies: The Passive-Aggressive Punch: The Silent Code of Anger In The Coupledom
Jill is taking a break from the blog this week. Here is one of her most popular posts from the past year or so.
Excerpt:
Withholding: A common form of passive-aggressive behavior is withholding: sex, affection, information, conversation. Someone in the Coupledom stops chatting, sharing details of family life; someone refrains from conveying essential data such as appointments, social events, school open houses, soccer games; someone “forgets” to share news about changes at work, relative illnesses……
You can read the full post here:
The Passive-Aggressive Punch: The Silent Code of Anger In The Coupledom
© Jill Edelman, M.S.W., L.C.S.W. 2011
An Article Worth Sharing: Pre-Marital Cohabitation
This Merits a Perusal: I am about to take a journey with my spouse which will include an abundant amount of “quality time” together, some of it on the road. Hence I am sure that upon my return home, I will have ample material to ponder and share. I had no plans to post anything Coupledom related this week except the “Oldies But Goodies” of previous posts but The New York Times Sunday Review published an article by Meg Jay, a clinical psychologist at the University of Virginia which warrants sharing.
In her article entitled “The Downside of Cohabiting Before Marriage” Dr. Jay raised some very interesting questions for folks to consider on the subject.
No Conclusions Just Process: Cohabitation is here to stay but some research has correlated cohabitation prior to marriage with the likelihood of divorce. However the data does seem to be shifting, and suggests that how you cohabit – that is, how you make the decision to do so or to continue that lifestyle choice – seems to be the key to its being a satisfying path for The Coupledom or an indicator of divorce.
A Slide Or A Commitment: Dr. Jay provides useful language for couples to discuss and define the type of “living together” that each envisions or desires. For example, is your cohabiting the “slide” into convenience or the committed road to happily ever after? Dr. Jay recommends that couples clarify their motivation for setting up even the most casual of homes, in order to allow both partners the opportunity to understand their intentions and those of their partner. Once clarification is established regarding these variables, then cohabiting prior to wedding bells can ring true.
Don’t miss this quick read. Clicking on the link above may help you to prevent future disappointments in love and life choices.
©Jill Edelman, M.S.W., L.C.S.W. 2012
Oldies but Goodies: Can You Say No To A Narcissist? Co-Narcissism and The Coupledom
Jill is taking a break from the blog this week. Here is one of her most popular posts from the past year or so.
Excerpt:
Do You Often Feel Invisible in The Coupledom? Healthy narcissism is a good thing. We need to care enough about ourselves to stay healthy, strive to achieve, pick caring partners, and teach our children the same. However, the line drawn in the sand is how the needs and feelings of others factor in to the equation. In the intimacy of a marriage or committed partnership, if one member is primarily caught up with trying to please the other, to manage their partner’s moods, and screen all experience through the lens of the effect on their partner, then you have a Coupledom in the throes of reactivity to unhealthy narcissism.
You can read the full post here:
Can You Say No To A Narcissist? Co-Narcissism and The Coupledom
Healing The Coupledom: Neurobiology and Couples Therapy
The Refuge of Stories: Steve Almond, the son of therapists, author and writing workshop teacher, described in a New York Times Sunday magazine article the mushrooming popularity of today’s writing workshops, which he views as a version of the old “talk therapy”, so popular prior to the psychopharmacological and managed care revolutions in mental health. To be a student in a creative writing workshop today, according to Almond, does not carry the “stigmatizing” or “covert” nature of psychotherapy, yet it can serve a similar purpose as “talk therapy”: that of providing a sanctuary of sorts to tell an individual’s personal story. In his article, Why Talk Therapy is on the Wane and Writing Workshops On The Rise, Mr. Almond describes how “telling a story” is “the most reliable path to meaning” and cites as examples, the world-class fiction authors Kurt Vonnegut, William Faulkner and J.D. Salinger as examples of writers who found a “refuge” for, as Faulkner puts it, “the human heart in conflict with itself.” To underscore his point Almond cites as evidence Vonnegut’s response to a question posed shortly before his death, “What was the central topic of his works?” Mr. Vonnegut’s answer, “I write again and again about my family.” In one way or another, so do we all.
Telling Your Life Story Together: As a couples therapist, I have witnessed the powerful healing force that comes when individuals tell their personal stories, powerful anecdotes or snippets of momentous moments in their past, to me in the presence of their partner. To do the deep work of change that relationships in trouble often need, personal history is critical. And though couples share much of what they construe as the most relevant data about their past with their partner through the years, it is startling how much is missing. There are many reasons for the absence of shared, emotionally significant data; one most frequent is that many of the most profound memories remain submerged in a file hidden from day-to-day conscious awareness. However, in the safety of the therapy office, a place where archaeological digs psychological in nature are the expected and accepted format, stories unfold with imagery so true and uncensored that veils are lifted and vision returns to allow individuals to see themselves and each other in the touching and compassionate light of vulnerability that is at the core of human experience. Stories shared can shift perceptions and open new pathways for intimacy that are not about the marriage or even the courtship but center on earlier experiences that have shaped the adult next to you and are subterraneously impacting your relationship each day.
When Couples Share: Halting the “he said, she said, they said” counterpoint of many a couples session by digging into the history and the memory of the individual, while the other sits and listens, is an extraordinarily powerful tool for both partners, if the light of hope and a flicker of love remains in their Coupledom. Then something transformational and ultimately healing can occur with the reliving of experience through stories of conflict, pain, joy, celebration and confusion related in the presence of a partner, yet not about that partner. “Who I was then and am in part now is what you are hearing. But I am not telling the story because of you or for you. I am telling this story because the therapist asked me to.” Listening is possible, hearing and being heard can take place, because the threat is reduced. When adrenaline is pumping, triggered by the fight/flight state, our empathic listening device is turned off. When the story is not about “you” the hearing device with its attunement dial turned up can be a sensitive instrument indeed.
And today, through MRI and EEG imaging, we have scientific data that supports the long-held perception that interpersonal relationships influence the mind, the brain, the entire well-being of the individual and their relationship with the other.
Daniel Siegel and Interpersonal Neurobiology: Last weekend I attended a conference at Mt. Sinai Hospital in New York City entitled presented by Dr. Daniel Siegel, who is a clinical professor of psychiatry at UCLA School of Medicine, a man with so many areas of expertise that a quick synopsis here does an injustice to the depth and breadth of his knowledge about human experience. His work in attachment experiences, his continuing search for a definition of the “mind”, which he has achieved to his satisfaction, and his study of the neurobiology of health and interpersonal relations makes Dr. Siegel uniquely qualified to discuss how we humans impact each other in ways that affect the health of our brains (which is inclusive of our entire bodies) and our relational and natural world. With the availability of sophisticated brain imaging instruments, Dr. Siegel’s findings have been supported by hard science.
Rigidity and Chaos: Dr. Siegel aptly subsumes all illness as a consequence of and manifested by either chaos or rigidity in physical (neurological and all body systems) and emotional functioning (the two are inseparable.) Psychotic behavior is the most extreme example of chaos and Obsessional Compulsive Disorder an easily identifiable example of rigidity. Linkage and integration of all parts of body and being bestow health. Blockages and disconnections subvert health. The neurobiological findings of current scientific investigation support this model of how human functioning operates.
How Does Psychotherapy Work? These tenets of health, which include self-awareness, or as Dr. Siegel puts “How someone makes sense of their life” and their interconnectedness with another, couldn’t be more obvious or significant to me as a psychotherapist as when I am watching a couple pause in their “I” moments of fight/flight defensiveness to engage in the telling of or the listening to their partner’s story. The process of story telling offers a deepening personal awareness for the story teller, to quote Mr. Almond, who in telling, will find “the most reliable path to meaning” for themselves and an opportunity for linkage to the listening other who is integrating their partner’s “story” in a mind altering manner.
Impacting Each Other Through Our Brains: Studies show that psychotherapy as well as meditation and many other practices that increase awareness and allow for integration of self enhance brain functioning, peacefulness and health. And research studies over the years that have compared different schools of psychotherapy (such as psychoanalytic, psychodynamic or cognitive therapy) reveal that what heals and changes the individual for the better is not dependent on a particular philosophy or methodology at work, but the relationship between the psychotherapist and patient; the relationship is the healing tool.
The Healing Tool: Therefore, drawing from this hard data, it is clear that the healing tool(s) of couples therapy can draw from multiple sources: the relationship between patient and therapist; the relationship with the self through the awareness that comes from “story telling” which is facilitated by the patient/therapist bond; and the relationship between partners through knowing the other by their stories. Siegel defines integration as health, which occurs when blockages are opened up (for The Coupledom, that would mean rigid ways of knowing self and the other are no more) and chaos is reduced by allowing the linkages that now open to form a safe foundation of self with another “when present, flexibility and harmony result.”
The Unique Power and Potential of Couples Therapy: Couples that allocate both time, resources and courage to this expansive learning and healing process, from my experience, do something impressive and long lasting; they allow their vulnerabilities and histories to be voiced and heard together to form a cornerstone of intimacy, of being separate yet known, that supports a lifetime of “healthy love” and opens neural pathways of mutual caring. This is powerful stuff, believe me.
©Jill Edelman, M.S.W., L.C.S.W. 2012
A Humbling Journey with Warts and Blemishes for All To See: Part 2: 3-27-12
Jeez What An Adjustment: Since our daughter moved into her CRS on August 1, 2011, I have struggled to define the parameters of my role as mother in the new order. The fact that as of July 1, 2012 our daughter has become the responsibility of the State of Connecticut and a client of Ability Beyond Disability who manages all aspects of her day to day living, while her parents, the legal guardians, live just eight miles away, has proven to be a challenging adjustment for me and one that revealed my many warts and blemishes for all to see. One could say that it has been a humbling journey.
Captain of The Ship: As the primary engine powering much of what has culminated with the successful launch of our daughter’s adult life, my focus over the two decades was not on my journey but rather on getting our daughter to her destination, and of equal importance, the impact of that journey on our other precious child, her brother, as well as my husband, our marriage and the family as a whole. Throughout these twenty plus years the message that I distilled from other parents, underscored by experience, was, “You are the expert on your child and her best advocate. Never leave anything solely up to others. You must be there at every turn.” It was up to me, as the designated parent who was in the trenches with our daughter day to day, to bring her to a place of safe happiness in adulthood, to protect her brother’s childhood and future adulthood and with my husband to provide some sort of safety net around our children, to the best of our ability, for the day we were no longer around, a goal common to all parents.
Unending Support: I was not alone in this journey. I have always had the unending support and wisdom of my husband, who handed over to me the power to lead the journey and the confidence to trust myself. I have been the grateful recipient of the unfailing love of extended family, and the excellent guidance provided by educators and therapists, angels and aids. But I learned in those first years, partially blindfolded by ignorance and stumbling in the dark, that I had to captain the ship and determine its course at all times. This role of “leadership” was new to me. The youngest of three girls, I had always taken direction from others. Now I had to determine direction for someone else where the stakes were so high and the terrain completely alien. This was my first major adjustment as a special needs parent and now, with the shift to parenting a special needs adult, has come another very complicated adjustment, which almost required unlearning all that preceded it.
A Guest In Our Daughter’s Home: Posting for “Parenting Adult Special Needs: One Day At A Time” these twelve months has yielded an unexpected and often startling window into a raw and often unattractive view of myself as I shifted from Captain of my daughter’s ship to being a Guest In Our Daughter’s Home. Sometimes I felt as if the last twenty years of training to be that ever present and alert parent of a child with disabilities had created a monster, a Mrs. Frankenstein of the special needs kingdom who made folks tremble when she came into view. All my warts and blemishes were on display as I shot off email after email questioning a minor lapse in our daughter’s care or schedule, some slippage or miscommunication related to a volunteer opportunity or a doctor’s visit.
Losing Control: Who is this nut? Yet I knew, and other special needs parents’ reminded me, this is being your special needs daughter’s mom. True. But also it was a kind of post-traumatic stress disorder, also typical, I believe of parents like me. Twenty plus years of living with what could go wrong, and often did, dramatically, leaves tracks embedded in the visceral memory and as with PTSD, (I know, an overworked diagnostic category these days) at any moment, something in the present can trigger a reactive perception that the past is happening again. I was losing control of our daughter’s destiny and that filled me with anxiety, and I needed time to make that O.K.
Reality Again: There were many startling moments when that reality began to materialize. One of the first was when our residential coordinator diplomatically informed me, in anticipation of our daughter’s moving into her apartment, that it was best to call ahead and clear the schedule with staff before visiting our daughter’s home. We were now “guests in our daughter’s home” and required clearance; no pop-ins. We had married her off to ABD and the residential staff were a kind of spousal entity. I understood immediately. This is the respectful and appropriate behavior for any parent when their child moves out of the parental home into their own abode. As always, there was relief too as this boundary, parameter, marker was clarified. It freed me from some of my responsibility.
A Burial Plan? Another visceral pang of parenting change came when the same administrative staff person asked if our daughter had a burial plan, which was simply a question related to identifying any funds in our daughter’s name, which, if not handled properly with full disclosure, could jeopardize her entitlements. But it raised in me the question, who decides her final resting place, something I had actually never even thought about. The state? Her guardians? Yes, her guardians, perhaps a spouse even. Adjustments and a reality a bit too painful to integrate quickly.
The Blurred Edges of the Mother’s Role: There was much that wasn’t clear over the twelve months. The other mom and I picked out the apartment for the girls to reside in, as this was not a group home but a CRS (Continuous Residential Support), which allowed us to do so. We even have our names on the lease and went with our daughters to select the furniture that would became the bones of the home, set its decorative tone and represent our mutual tastes. However, once the girls moved in, it was staff who added the accessories, picked out a rug and curtains, initially asking our permission, and in fact, actually trying to help to take the pressure off of us. Yet it remained confusing. What if I didn’t like their choices? But if our daughter did, it was really no business of mine now. And then, who sets up doctors’ appointments, goes to the appointments? When do the parents get feedback on those appointments if they are not present? When should we visit our daughter, or set up dates to see her? Whom should I speak to about “issues” that our daughter has texted me about it, or called me in distress to register her anger or hurt? With the day staff who are present when I call or visit, or their coordinators? Do I try to find volunteer opportunities? Can I really leave it to others?
An Intensive, Microscopic Instrument of a Parent: Was the other mother like me? I don’t think so. So was it just me? My personality warts and blemishes surfaced, revealing myself to be a mom I often did not like: interfering, judging, stressed out and demanding. Ugh! What was the heart of the problem? I think I now know, after eight intensive months of adjustment – trust! As I wrote in an earlier post, it takes time to build trust that others will be knowledgeable enough about your child to keep her happy and safe, something I have attempted to do these last twenty-two years. And believe me, I have never felt “perfect” a day in my life, never. So did I expect “perfection” from them? No, but they did not know her as I did and that worried me. How long would it take them to know her? And would they feel what I have felt all these years: committed, determined and devoted to her care? Specials needs children require a fairly intensive microscopic instrument of a parent/persons to do the job well. Were these people up to the task? As it turns out, thankfully, they are!
Finally, Why Am I Writing About Me Here? These posts were written for the parents, are about “Parenting Adult Special Needs”, the parents’ quest to bring their child to the threshold of adulthood, safely and successfully. That has been the focus and purpose of the posts, and has led me to draw an honest picture of one family, one child, and most personally, one parent’s perceptions and experiences of that journey. I have been accused during this process of being too “I” oriented, selfish and narcissistic, and falling short of being the caring and devoted parent that a special needs child deserves and requires. I can understand how some pulled out that image of me and though it didn’t feel good, it felt honest and fair. I have behaved at moments insensitively and unfairly to others and I have apologized with sincere feelings of regret and remorse. But I know that when I felt threatened that our daughter might not be sufficiently protected, though my fears proved unfounded, my primitive response was fight, not flight. The stakes are high when you pass your child’s destiny over to others, for the rest of that child’s life. This was no summer camp or boarding school. This was adulthood; though not set in stone, still she was out of our arms and into the world, just like that!
Being a parent or a parent of special needs doesn’t mean being pure, always sacrificing and self-effacing. It just means striving to be the best you can be for that child, while still being a person in your own right, your own skin, with the weight of baggage from your pre-parental life in tow. We don’t come into this parenting business free of personal imperfections or inclinations. No way. It is an often heard yet ridiculous notion that just because you parent a special needs child that you are a saint or need to be one. My wish is that these posts have provided a practical template for a parent to use to aid them in their child’s journey, a portrait of sorts presented with all the warts and blemishes that make up even special needs parents, imperfect mortals that we may be.
Thank you all for taking the time to share our journey. The journey continues and may in fact bring me back to posting on it in the future. But for now, Adios.
©Jill Edelman, M.S.W., L.C.S.W. 2012
A Note from Jill’s “Blogger Guy”: This concludes the series of posts, Parenting Adult Special Needs One Day At A Time. We want to thank everyone who took the time to share Jill’s journey with her. Please check the blog tomorrow for a piece of news we hope you will find both interesting and exciting, and maybe even a little bit rewarding.
A Year’s Journey From All Sides Now: 03-26-12
All Sides Now: There is no easy way to end this series of posts on parenting adult special needs. Do I summarize, itemize, measure growth, anticipate challenge or celebrate accomplishment? Do I thank and applaud or alert and inform? Shouldn’t I be doing all of that? My hope is that I have done all of that during these twelve months of posting on our journey.
This is a story about one young lady who turned twenty-one in November of 2010 and aged out of her Connecticut school district that following June 2011, and her family as we made our way out of the child’s special needs world into the world of adult special needs, a day at a time. In the twelve months since these posts began, a thriving adulthood has been constructed for our daughter by a team who monitors all aspects of her daily life – a dedicated team who has seen our daughter from all sides now.
Never Static: And even as I try to summarize a year of effort, this team is busily at work improving on the model they constructed: new vocational settings are being screened for better hands-on opportunities and training; a book club component, suggested by our daughter, is scheduled to debut this coming week at the DSO (Day Services Option); a trial of a small dosage of the medication Focalin, to aid focus and increase job success, will be inaugurated next week with careful monitoring, this after extensive blood work measuring thyroid and other functions came back normal; the first weekend away as a CRS (apartment-mates and two staff) is scheduled in April to Mystic, CT. This is the proverbial “work in progress” model with no static “mission accomplished” endgame.
Increasing Independence: Adjustments and fine-tuning hopefully will remain a critical component of programming in response to our daughter’s maturing in the decades ahead. The goal of increased independence is a staple of the special needs world and spelled out in document after document over the two plus decades of our daughter’s life. But there are areas of dependency that may not change, ever. And by definition that is the meaning of the term “special needs” or “disabled”. Our daughter does not wake up to the fire alarm – ever. And, when alerted by staff to follow the protocol for the fire drill, she is resistant. Our daughter still looks at the ground when she walks through a trafficked area. How many years might it take for her eyes to scan properly and her brain to decide safety accurately? For a fire alarm to awaken her in time to follow the exit plan out of the building? Increasing independence is a goal but safety is the undisputed necessity for our daughter’s future.
A Good Decision That Hurt: It was only a year ago this March during spring break from her boarding school that our daughter and I had a conversation about the decision to end her post secondary education a year earlier than her peers and bring her back to her home state. We were in the car and she burst into angry tears telling me in no uncertain terms that it wasn’t fair, and it wasn’t her decision and it wasn’t right that we didn’t consult her when making the final decision. I was waiting for this moment.
Emotion Trumps Preparation: The last year and a half leading up to this discharge of feeling, our daughter visited residential settings, attended interviews with potential service agencies, raising questions about where do the kids live and what activities do they participate in. She met several times with her case manager, and had regular visits with her school guidance counselor to discuss her feelings about leaving school and moving toward “independent” adulthood. She even participated, at her request, in a support group whose purpose was to share feelings about leaving school in June. Since the Thanksgiving before this, she had been spending time with her future apartment-mate whenever both girls were home from their boarding schools, the families becoming acquainted as well. In fact, she used the phrase over and over with anyone who asked what her future plans were, that she was coming back to Connecticut because her parents could not “pay out of pocket” to send her for the third and final year of her post secondary program, Grow. And she understood what was happening.
The Reality of Loss: But all the preparation in the world is never enough to trump the reality of loss and the fear of change. Frankly, I was glad to see and hear her powerful expression of pain and outrage. It reminded me of when her brother was two and one half and attending sibling class at the local hospital to “prepare” him for brotherhood. Well, it didn’t prepare him, no matter how many dolls he held or how much teachers claimed he enjoyed the baby room at his twice a week daycare. When the real thing arrived, he was just as happy to leave her at the hospital or drop her off in the garbage on the way out, both feelings he expressed to mom and dad. Reality of change or loss, no matter how much we think we are ready for it, can sneak up on the best of us.
I agreed with our daughter on all counts, twisting in my own emotional tangle of guilt while simultaneously celebrating her clarity and honest expression of the injustice of it all. I was sincere in my expression of empathy for her pain, and together we came up with a plan to meet with her case manager and the director of her future ABD program so that she could tell them some of her feelings. And we did that the next day, which helped mightily to further forge a bond of trust between her and them.
The Wheels Were Rolling: And though I felt almost cruel, the wheels were rolling forward because they had to, timing was critical to allow our daughter to receive the optimal funding for residential support and if we waited another six months, even that opportunity, and this has proven to be the case, would be threatened. She was twenty-one and on July 1, 2011 she would officially “age out” of her school district and be just another special needs adult who was seeking housing and funding for services. At that moment she was at the top of the list for priority housing because she was returning to her home state after five years at boarding school, but six months later, she would tumble down the list to who knows where. This was the indisputable fact that ordered all my thinking, no matter what other longings were in play.
Transition To Adulthood: I have no regrets here. Our family received excellent advice and that grounded us in our determination to make this move happen immediately. What has strengthened that feeling is seeing how quickly our daughter has adjusted to her new life. As we had hoped, our daughter’s transition has been remarkably smooth because fundamentally her new life is more similar than different from her previous life.
The Plan Worked: Attending boarding school for five years, beginning at age sixteen, (the last two years for the post-secondary/vocational component), and prior to that four summers of sleep-away camp, begun at age thirteen, were preparation for this moment. All this planning that went into easing our daughter into “independent living” over the eight years, seems to have paid off. The structure provided by Ability Beyond Disability with 24/7 staffing alternating schedules, the daily programs, non-negotiable routines and residential life with peers, replicated the atmosphere and expectations of boarding school life. Both our daughter and her apartment-mate and their families had experienced the wrenching jolt and adjustment of separation years earlier so that trauma, quite frankly, was long past. And the young ladies have experienced only two bouts of significant interpersonal conflict so far, the first marking the end of the “honeymoon phase” this past Fall and lasting twelve hideous days, and the most recent, a mere two days last week. Their mutual compatibility is partly because they actually find living with just one other female a stark and relieving contrast to the “drama in the dorm” atmosphere of multiple females inhabiting one “home” that marked their boarding school years. This cohabiting, in contrast, is a “peace” of cake.
The Surprise: Our daughter’s adjustment to her new life has been swift and relatively smooth. She has never complained about returning to Connecticut since that Spring Break car ride a year ago. She has never asked to return to her boarding school though at times she speaks of missing her friends or the Cape. When questioned by family or friends on how she feels living in Ridgefield, Connecticut her answer is immediate and consistent “ I love it.” No, it is not our daughter who had a difficult adjustment to the new life. It was her mom.
Part 2: Tomorrow I will post on mom’s adjustment, one that was not so smooth. A journey for which I was not prepared, and one that I hope to make easier in some ways for others, simply by relating my own tale. Stay tuned and let me know what you think.
©Jill Edelman, M.S.W., L.C.S.W. 2012
