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 children with special needs
Giardia and Feral Cats: 10-24-11
Smart Girl: I caught up with our daughter at last when she called me yesterday around 2:30 P.M. as I was on route with my son to help him move into his new apartment/closet on 15th Street in N.Y.C. The young lady surfaced at last to give me her view of her tour of ROAR, which sounded like a resounding success. My son and I were heading down the Henry Hudson Drive, a super sparkly river on my right, replete with joggers, bicyclists and strollers making the “Sunday In The Park” a reality, when his sister called. I was so happy to hear her recitation of the “tour” and her comfort level with her vocational staff that I felt compelled to take notes, but didn’t, so this is from memory.
ROAR: Our daughter gave me the virtual tour, which included a description of the most common ailments of shelter animals, Giardia amongst the top two. Also, how many of the animals are adopted, and that those that are not are euthanized. Pang… Super Pang. She then launched into the future plans that ROAR has to create an “exercise space” for the dogs and how she will be working with cats, which doesn’t seem to bother her at this time, despite her primary passion being canines. She remarked on one very special pit bull she met whose name eludes me for the moment. Apparently Doreen, the Roar volunteer coordinator, posed some questions, including defining what a feral cat is, and Voila, our daughter responded “A cat who lives on the street.” Brava.
Drama: The drama of the last 48 hours had dissipated and apparently all went well with the new staff/daughter interface. However the issue of communication gaps came up. The Thursday – Saturday residential paraprofessional was the one who had strategized with our daughter for Sunday’s tour, working with me to help her overcome her concerns regarding the vocational staff person and to plan how to handle the day. That information was left to be conveyed through notes to the Sunday – Wednesday paraprofessional who comes in early morning. But that wasn’t done because I believe the professional staff took over the job of communicating the plans but then was unreachable by cell Sunday morning when the Sunday paraprofessional, following instructions left for her by her colleague, called her. Oops. Got it?
Now I’m Pissed: Well, not exactly. I know these system problems. The paraprofessional world often is usurped by their professional brethren when actually they are the folks in the know. So perhaps the residential coordinator, who had stopped in later Saturday afternoon, pulled all the pieces together and felt it was her role to present them to the paraprofessional the next day, certainly better to talk then to have her read all in the notes. But it didn’t work. If our daughter had not been in better shape, the whole thing would have been a mess as Sunday’s para would have had to piece together the last four days of drama quickly but certainly not in enough time to ensure a safe passage to the ROAR tour.
Werewolf Mom: Yes, I did send that email early this a.m. to the team. Not angrily. All went well so I don’t feel angry. But I do feel worried. Had it gone badly, well, you know werewolf momma would have descended. So I am trying for prevention once again. These folks are working so hard and mostly so well that it would be very unfair to hammer them, as well as unkind and destructive. They will get the message. Systems have so many cracks in communication, multiple people, human error and a cell phone turned off or dead perhaps, or a mailbox full. Whatever. We were lucky this time.
Friday ROAR Begins: It’s all about the girl and Friday she will become an official ROAR volunteer. She is psyched and though the early morning hour (she begins at 8:30) offers up plenty of challenges for her, I am working hard to help staff get her set for take off in plenty of time so that we lower the “spirals of anxiety” for all.
Am I working too hard? Possibly, but based on a couple of decades of experience, probably not. Am I a special needs version of “Tiger Mom?” I’m not that good or that bad. Anyway, “Its all about the girl.”
©Jill Edelman, M.S.W., L.C.S.W. 2011
Sick & Pissed: 10-23-11
Sick & Pissed: My visit to the “infirmary” yesterday revealed a young lady on the red couch, still stuffed up and anxious about her ROAR training, focusing mostly on the new vocational life skills staff person who has to train with her today at 11:00 a.m. I am typing this at 10:58 with the hopes that the gals got off to a good start.
A Rotten Combination: The trajectory of the conversation had the typical downward slid which occurs when our daughter had an interaction that left her insulted and bossed. “She put pressure on me to get ready. I hate that.” Her apartment-mate, seated nearby on the same couch, (she always chooses the chaise end, our daughter plops herself in the center) sympathized, adding that she has had the same experience with the unfortunate new staff person. Things became more and more heated, tears and anger, with residential staff comforting, mate consoling, and solutions offered as to how she can manage the training the next day while suffering from the rotten combination of a cold and a staff person with whom she is super pissed off.
Adios: I left and later that night checked in to find out how the lass was doing. Better. She apologized for her behavior. Staff think her venting a positive. But I know how it can last for hours, feed on itself and not respond to efforts by others to reflect her feelings and offer strategies until it runs its course. Tantrum is another term for it, triggered by the powerlessness she was feeling confronted by conflict: “I know I need to do the training” versus “But I don’t want to do it with her.” We did find strategies that offered her comfort, so my presence was no longer needed, if needed at all. (We could postpone training but as mentioned in previous post, she has waited three months for this moment.)
ABD Rocks: At 12:30 I will call and see how the training went, if she went, and how she did with the vocational staff. ABD is on the ball. They are ready to move in if this new pairing does not work (that of the two clients and the new staff person). I was able to reach the powers that be on a Saturday afternoon, and the residential coordinator went over there last evening. Can’t ask for more than that from your service provider, nope.
Follow-Up: Our daughter did not pick up her cell phone when I called over to the apartment so I have not been able to get a first-hand report on the training. However, according to the residential person in charge, she did go off with the vocational staff without a fuss, completed the training, and though feeling super stuffy, felt good about it. Communication issues reared their ugly head but I will focus on that more tomorrow. I am eager to hear from our daughter regarding how she felt about the training, was she proud of herself for overcoming her difficulties and accomplishing the task at hand? I hope so. Fingers crossed.
©Jill Edelman, M.S.W., L.C.S.W. 2011
Tender Care: 10-22-11
TLC: Last evening hubby and I stopped by our daughter’s apartment after work to deliver her Vogue Magazine, The Quarterboard, Riverview School’s newsletter which included a photo of our daughter, and her Mucinex D. The young lady was watching the movie Julie and Julia, seated on her red couch in her pink Susan G. Komen sweat shirt – a gift from her cousin Dori’s Bat Mitzvah (a way to give back while celebrating) – looking comfy-cozy, the apartment-mate out dining at her folks. Our daughter is irresistible, so you just want to hug her to pieces. And she let me, several times, which was unusual. Her staff, Jane, who is motherly and had already homemade her some chicken soup, sat close by. Needless to say, I felt assured that she was receiving tender loving care. Though she had to forsake horseback riding and the pumpkin carving party later today, both at Pegasus, the possibility of her attending her ROAR training tomorrow remains good.
Other Matters: Today I will return to eye those eyes again. So far no indication of the dreaded sinus infection. I plan to pick up a few more supplies including saline spray and cran-grape juice, with the admonition to dilute with water, as all concentrates have way too much sugar. I attended a three-hour seminar this week on the in’s and out’s of healthy eating and will forward mucho information to the ABD staff regarding some easy choices that can make a world of difference, such as the aforementioned “cut the concentrate.” The girls are on a healthy eating program and weighed each week but I don’t have the data as to results beyond the initial five pounds shed the first month and a half. Her physician’s recommendation was to lose ten pounds. I don’t want to be too pokey nosey yet I can see that as the passage to adult living unfolds, no one will monitor like momma.
The Mother Facts: If that sounds self-important, or self-inflating, sorry. Not my choice. “All we want are the facts, ma’am” and here they are. The Mother Facts. Pretty interesting since I never thought of myself as particularly important until I became a mom. The ever-present reminder of the “good news/bad news” aspect of life.
©Jill Edelman, M.S.W., L.C.S.W. 2011
No Answer, Not Much: 10-20-11
No Answer: I am not sure what activities were scheduled for our daughter’s vocational day today as neither she nor any of her staff have answered my calls. By next week I am hopeful that both placements, ROAR and Ridgefield Crossings will be in place. I know that her ROAR training is scheduled for this Sunday.
Tonight: Instead of attending their Thursday evening SPHERE rehearsal, both young ladies have chosen a fundraising event called Hoops For Hope, at Danbury High School, to raise money and awareness for the employment of folks with disabilities. Two teams, Connecticut Spokebenders, a professional wheelchair basketball team, and High School students, board members from Ability Beyond Disability, local celebrities, and others will play ball. I may show up and pay $5 a ticket to see how the gals like the event. I know it will be a hoot watching our daughter watch them. Staff invited the parents. I am not working tonight, but on the other hand, isn’t the Big Bang Theory on at 8 P.M? Decisions, Decisions.
Not Much: Through the years, when I call our daughter to ask what’s doing, her frequent response has been “not much.” I get a kick out of her voice, the bounce of the words on her tongue, and the fact that I can hear the sound of a video playing on her laptop or the click click of her keyboard keys in the background. Not much can mean busy with social networking (Facebook chat perhaps,) a great movie, or some online research, in other words, preoccupied. For me, today’s “not much” means I haven’t reached the girl so I have “not much” to post. But always more to follow. Stay tuned.
©Jill Edelman, M.S.W., L.C.S.W. 2011
Angelfish: 10-18-11
Swim Lesson At Last: Tonight our daughter will have her first semi-private swim lesson with Angelfish, and Cindy Freedman, the talented occupational therapist who welcomed our daughter as a volunteer last Spring. Cindy’s talents are known far and wide. My fingers are crossed that our daughter will allow the Angelfish magic to take hold, and that she will take her dog paddles and half crawls to another level. Most importantly, that she will receive the aquatic therapy that she has been missing for years.
©Jill Edelman, M.S.W., L.C.S.W, 2011
Like this:
Love Her For Who She Is: 10-17-11
Ronan: I had an idea for today’s post but dropped it this morning when I read Emily Rapp’s piece in Sunday’s New York Times, Notes From A Dragon Mom, about her son Ronan, eighteen months old, who has Tay-Sachs Disease. The article is painful, so I am not suggesting it to readers without a useful motive. Ronan’s mom has a message wrapped around the agony of knowing that her son will be dead by the age of three. A message that recalled for me a moment in our daughter’s life occurring nineteen years ago this Fall.
Words That Cut Deep But Provide A Path: When our daughter turned three years old, educators recommended that we place her in a typical pre-school for two days a week while she attended our district’s special education pre-school the other three days, to enable her to be amongst ” typical peers” for language development and social modeling. Our son had attended this pre-school, which was well regarded in our town, in large part because of the director’s reputation. She was thought very skilled at creating the perfect balance of social modeling, nurturing and educating that is optimal for 3′s and 4′s healthy development. Many of our baby group moms were sending their children there so I signed her up.
It was a rough go. The gap between our daughter’s development and her classmates was heartbreakingly conspicuous and probably agitated her and certainly me. Yet, I did walk away with something which felt at the time both patronizing and profound. In my attempt to grasp at some threads of hope that our daughter wasn’t that “different” or that the director saw something promising that would herald the likelihood of our daughter’s catching up to her peers, I would make sure to chat with her briefly during pick-up, asking “how did she do today?” — code for “give me hope.” On one such occasion the director focused gentle blue eyes on my face and said, “Love her for who she is.” Really? She saw right through to my soul. The words cut deep but they provided a path, permission! Permission to let go and enjoy.
Permission: That was the message I took away with me and hear in the achingly beautiful lines of Ms. Rapp’s description of life with her dying son, “Parenting in the here and now” as she puts. Her story sadly will have a different ending than most of our stories raising our children, though she reminds us of the “long truth…that none of this is forever.” As parents of children with a future, we have to be working toward goals to get them in as strong a state as possible. But hearken to the message: while we special needs parents are researching speech and occupational therapists, sensory motor opportunities, the best nutrition and top neurologists, look to the child and permit yourself to enjoy who they are in the moment, for many moments of every day. Permission to celebrate the child they are, not the child they have to become. Ms. Rapp puts it this way: Parenting, I’ve come to understand, is about loving my child today.
©Jill Edelman, M.S.W., L.C.S.W. 2011
Full Circle: 10-16-11
Off To Take Her Home: We just had a marvelous evening. Our daughter and son spent a cozy Fall dinner in our home with two of our dear friends whom they have not been with since they were little children. The wife was a classmate of mine in graduate school and remains as dear to me as anyone. She taught me a great deal about mothering, as she predated me by two decades in the parenting realm and modeled deep caring and devotion to children while still thriving as an individual in her own right.
Our daughter wowed them, as did our son. When I asked our daughter what she enjoyed most about the evening, she answered, “talking about movies, actors and actresses.” As always, her memory was stellar, her humor sparkling.
Earlier this afternoon, we whisked our friends over to see the CRS (Continuous Residential Support) apartment and meet staff and our daughter’s apartment-mate. I invited our daughter to join us for dinner and was thrilled when she said yes.
Full Circle: This was a full circle moment for me. Thirty-seven years ago I was single, childless, immature for my years and embarking on a career. In the intervening years I married, parented and faced challenges that I had not expected. My girlfriend watched all of this development with empathy and wisdom, often holding my hand and my heart. Tonight she shared in the bounty of my riches, two wonderful children, both of whom are entering young adulthood with great prospects and good hearts and a husband who has provided the anchoring for all these riches. And no one understands more than this friend how far we all have come in this journey. This was a powerful moment for me. To have a friend who pulls for you and catches you when you fall and then celebrates you when you reach your goals, that is a powerful friend and a powerful friendship. Thank you!
©Jill Edelman, M.S.W., L.C.S.W. 2011
More Than One Mother: 10-15-11
Cozy Comfort: Last evening I dropped by our daughter’s apartment to deliver her dog magazine and a Pegasus announcement of a pumpkin-carving party next weekend, and while there, was able to take the pulse on her mood after her “misunderstanding” with a staff member. She looked great, was having popcorn and watching a movie with her apartment-mate and the weekend staff person, with whom she has become close. It was pouring rain outside and the whole scene, with the girls comfortably arranged on the red couch, feet stretched out on the matching ottoman, the air scented with the irresistible aroma of recently popped corn and something Pixar-looking on the T.V. screen made me want to stay but I couldn’t and I shouldn’t. Mom and Dad were actually on our way to a wine tasting at the Community Center with a friend who resides three doors down from our daughter’s apartment.
Doing Better: The staff whispered me over to the kitchen entrance to say, “She’s doing better” but as yet was not ready to forgive the other staff person, though apparently they had talked earlier. O.K. This staff member is a mature lady with a grown child who exudes that maternal earthy acceptance that soothes our daughter most. Apparently our daughter unburdened herself to this lady, which shifted her mood to its current contented, smiley state. Great.
More Than One Mother: I have watched our daughter over many years being “mothered” by different women, mostly mothers themselves, dorm staff and before that, paraprofessionals who spent day after day with her in the public schools. Women with great empathy, practicality and a large dollop of love for our daughter. And I am grateful that she has had and still has more than one mother. I think all children need more than one mother. Someone to fill the gap, or someone who has a different knack. Studies in child development teach us that having the ability to bond with others in addition to our parents strengthens the child, giving them additional models to draw from for their life journey and a richness in social connection. Seems to have worked for our gal.
©Jill Edelman, M.S.W., L.C.S.W. 2011
Trouble In Paradise: 10-14-11
Oh Dear: Our daughter called at 9:03 a.m. today. And then again at 9:06. I was working but when I picked up the message at 10:15, it was something like this: “I am having a water problem.” Well, it has been raining fairly steadily for 24 hours so I assume there is a leak in the apartment. Actually, first I thought her water bottle broke. However, viewing the soggy mist and silky strands of abundant rain streaming outside my office window, I figured, flood. So I began the phone calling. No answers from daughter, apartment phone, staff cells or office numbers. O.K.
Active Fantasy Life: I left messages asking if the apartment basement had flooded or what was up. I have a prolific fantasy life for disaster and was already picturing the windows over my daughter’s desk leaking and corroding the wood surface. I also suffer from a psychological imperative to get at problems fast. I can’t stand the anxiety of a negative unknown. So I rush in disturbing all kinds of hornets’ nests in the process, often getting stung while making more of a mess along the way. It’s all about mastery. Trying to master my anxiety.
Bent Out Of Shape: Finally, I reached our daughter, who was at her Complete Cat volunteer job yet able to pick up her cell. No flood, no leaks, but a rumble and grumble with staff personnel. Apparently, our daughter gets super thirsty in the middle of the night, drinks water and then has to use the bathroom. This has created some disturbance and words between her and staff. “Bent out of shape” describes how my daughter was feeling. She was indignant that staff said or she took what they were saying as “You shouldn’t be drinking water in the night” and daughter responding, “I can’t help it. I’m thirsty.” She spat out at me on the phone, “I’m so angry at her.” So I did the usual mom/social worker dance of empathizing while trying to track what actually transpired. Never easy. I validated the intrinsic human right to drink water when thirsty and then evacuate said water from body. I mean, what about that is wrong? Then promised to talk to her staff member.
Sodium, Hydration And Resolution: Having scattered phone messages amongst staff, I was rewarded fairly quickly by a call from the administrative staff person who had some inkling already of this trouble in paradise. Apparently, our daughter had been getting up numerous times each night for several days. We reviewed various possibilities including daughter’s need to hydrate more during the day, sodium content of foods leading to water retention and staff concerns regarding a possible UTI (urinary tract infection). Shortly after that call, the alleged perpetrator of the unkindness checked in and we honed the content and context of the exchanges and possible resolution. What was really kind of hysterical is that the night of the most active bladder activity followed the meal at the Cheesecake Factory. Ah ha! Salt content of tomato basil flatbread sandwich? Anyone’s guess but guess high. And what’s more, what beverage was imbibed to accompany said sandwich? And what size was the beverage? Beware restaurant chains, notorious for sodium, fat and oversized everything.
Mother Detective and Cognitive Disability: I am a sleuth. In my work and in my parenting, I have to be a sleuth to trace what may have led to any number of unfortunate occurrences in the course of my daughter’s life. The aforementioned staff member and I reviewed all kinds of variables while the poor young lady crucified herself for hurting our daughter’s feelings. Again, here is where the cognitive disability gets confusing. Our daughter is so smart in many areas that staff is generally puzzled or surprised when something that to them seems obvious, like a brainstorming about the water, bathroom, nocturnal activity, is experienced as a scolding or disapproval. “Too many questions.” That’s what the staff concluded. She was asking too many questions and our daughter heard or projected disapproval and irritation, I’m guessing. And perhaps the staff did become frustrated or even irritated as the brainstorming bogged down. Who knows?
Paradise Momentarily Lost and Hopefully Regained: Well, I am glad that it wasn’t a house flood. The corrosion of wood and the need for repair would take longer and be more frustrating than this spate. I do believe they will correct things and that our daughter will say, “I forgive you.” She is good at that. Fingers crossed.
©Jill Edelman, M.S.W., L.C.S.W. 2011
Join Their World: 10/10/11
100 Years Of Peter Pan: Today’s New York Times Op Ed section had a piece written by Maria Tatar, chairman of Harvard’s folklore and mythology program who reminded us all that this week Wendy and Peter are one hundred years of age. In my opinion, one hundred wonderful years for those of us who fell in love young and have stayed in love with perhaps the most enchanting tale of boyhood, young love, the complexities of a fairy who tinkers with jealousy and loyalty, and the exotica of mermaids, pirates and punctual crocodiles. Even distraught parents play a key role in the suspense and delight of Peter Pan.
What Ms. Tatar stresses in her editorial is that both J.M. Barrie and Lewis Carroll, author of Alice in Wonderland, spent time with children in their worlds, boating or playing or photographing them. And it made me think about how as parents of special needs children it is so critical that we spend time in the special world of our child particularly because it takes them longer than “typical kids” to understand or enter our worlds.
What Parent Type Are You? There are many different types of parents, but one grouping that I have observed are those who are driven to bring their children toward their interests, or the interests they had as children. The other grouping, the Lewis Carrolls and the J.M. Barries, who though childless I liken to those parents who grasp that we have to follow the child’s lead, making the experience of child raising smoother and more satisfying in those early years when children’s cognitive and muscular development need time to appreciate what is interesting about their parents’ world. But early on, what catches the child’s eyes and ears is where we must go. With special needs children this is critical, especially when language is delayed and communication depends on experiential moments far longer than with a typical child. Sharing a laugh at a silly cartoon. A giggle at a toad scampering across a lawn. Or more challenging, the endless repetition of a song, or a game or a story. To make their world more interesting to us, it behooves us to observe where their delights rest, join them and perhaps expand the experience with something of the same ilk, yet new; a storybook on the topic, a video game or song, a ride to a location where the object of attention is revealed in a new setting. By doing so, we provide variety for ourselves, which can reduce boredom, increase tolerance and make the time spent in our children’s company more enjoyable. It also stretches them as well.
The Challenge of Stasis: For a long time it can seem as if our special children don’t move…developmentally. Their pace is so much slower than typical children that the redundancy of their interests can prove trying. That’s when it is time to roll up the creative sleeves and see what else you can do with a redundancy. With our daughter, the obsession with rodents and rodents, and rodents, was quite trying, forgetting about the messes. So we read about them, we alternated pet stores so that I at least could find something new in the setting. I learned the differences between a guinea pig, a hamster, what’s that other really little one? Who remembers now. We chatted chinchillas with a friend we bumped into on several occasions in one or another of these pet stores. And nowadays, the internet affords endless opportunities to search for cartoons, movies or clubs to further expand subject matter. We thought it would never end, it took years. We had mice and rats and dead mice and dead rats. We had horrific tragedies and the bounty of baby guinea pigs, naked, pink and at risk. We were in her world. What’s the difference between that and a typical kid? Plenty. It goes on forever and the parental involvement is on a different level.
The Disappointing Child: There is a lot of disappointment and frustration in raising a special needs child. One can be distracted and preoccupied for many years by what the child is not doing, and the fears of what they may never do. But I have found the best antidote for those painful ruminations and that is curiosity and interest in what the child is doing. What are they trying to master, understand or find entertaining? Often, their preoccupations serve a developing neurological challenge. Joining their world and reminding oneself that the present is the place to be when with them can be comforting as well as productive. Working on their future can be accomplished when they are sleeping, assuming they sleep of course.
©Jill Edelman, M.S.W., L.C.S.W. 2011
