Holes in The PJ’s and Snagged: 9-27-11

Sphere: This was a SPHERE day for our daughter. She and her apartment-mate joined a small number of fellow SPHERE members on a visit to the Metropolitan Museum of Art in New York City. Normally on a Tuesday she would be at her DSO program but she chose to go on the field trip. I had no idea what part of the museum they would view but received a call from her on the way back home. She loves to call in transit. What else is there to do? Oh yeah, drive, well not for her. “Hi, how are you?” “Hi my love, are you at the museum?” “No, we are going back to Connecticut.” “What did you see?” ” The Egyptian mummies, and jewelry and some sculptures.” “Great.” “We didn’t see the whole museum.” “Nope, no one does.”

I guess they did the Egyptian wing. It was a special tour arranged by a “friend” of the SPHERE board. Our daughter is a veteran of the museum stroll and this museum especially but despite the frequency of her visits there, I could tell she was thrilled by what she saw today. I will follow up with her tomorrow for more details. It is difficult at times for me to understand each of her words on the cell phone, so I keep saying “What?” and she gets frustrated. Probably a combination of my hearing sagging, an imprecision in her articulation, and who knows where her mouth is, against the phone or on the other side of the room. You never know.

PJ’s: Later this afternoon I received another call (we didn’t talk at all yesterday) to inform me that she had holes in her PJ’s and had to throw them out. O.K. Then she said she had holes in another pair, and had to throw them. Then she said she had holes in a pair of jeans, and had to throw those out too. “Hey, is there something happening in the clothes washer or were these all old clothes? Old. Pause: “Mom, what are you doing tomorrow? Can you take me to Kohl’s so I can get some new PJ’s? Are you free?” “Yep, I can take you.”

The Snag: I was snagged. I do have time tomorrow but was looking forward to cleaning up my desk, now that my taxes are off to the accountant, clearing out a couple of other wasps nests of my life, like the linen closet, and starting my billing for September, until I had to work later in the day. Oh well. She snagged me. I almost never can say no to that girl simply because I had plans to meet some of my needs. I don’t postpone. I knee jerk yes. This has always been a parenting weakness of mind, and frankly an overall personal weakness. A gratifier first, without a pause, just a plunge. Sure.

Alas, She Perished On An Escalator, Poor Gal: But actually tomorrow the new furniture is being delivered and though staff can receive it, I will need to put my mark of approval on it, especially as this store is notorious for sending defective items. And she needs her monthly spending money from her parents. We pay for all social activities outside of Ability Beyond Disability programming. I will do the proverbial slaughter of several birds of responsibility with one big stone. It all works out and I know that come the weekend I am away for two days so I can’t offer to take her shopping then. But I do get snagged, perpetually. Whether it is to buy a DVD at Barnes & Noble while shopping for a cousin’s gift or agree to a shopping excursion at an inconvenient time, I cave. And yet, when I do say I cannot do something, because thank goodness I work and have other imposed boundaries on me, she is fine with it. Years ago my weakness and her meltdowns led me on a perpetual merry-go-round of trips to malls, pet stores and wherever, whenever she demanded. If I didn’t have to make a living, or had another child, best of all, I probably would have perished long ago on some escalator on the way up or the way down from sheer exhaustion. (By the way, my survival tool was always to sneak in a need-gratifying experience under these conditions, whether it be stopping for a Starbucks, checking out the latest baubles at the jewelry counter, or sliding into a conversation with an acquaintance, schmoozing companionably while our children looked off into space. Our daughter bore up mightily under my indulgences as well.)

Daughter Teaches, Mom Needs Practice: As I tell my patients, I learned this phrase from my daughter (whose years of social skills training benefitted the mother as much as the daughter) before you knee jerk an answer, pause and say: “I’ll think about it and get back to you.” Hey mom, practice what your daughter teaches. Who’s the child here? Well, actually no one anymore.

©Jill Edelman, M.S.W., L.C.S.W. 2011

All About Me: 9-26-11

Yes Indeed: It is almost 6 P.M. and today has been all about me. Well, almost. Our daughter had her Day Service Options (DSO) program at Ability Beyond Disability where they do a variety of social activities. And though I put in a call to her cell a half hour ago, she did not pick up. Aside from working, which hopefully is mostly about others, and straining to pull our taxes together and send out to the accountant (we always file an extension as we are self-employed and need lots of time to procrastinate), I spent the bulk of the day on an outing with two girlfriends. We ate, we went to an art gallery, and now I am about to meet up with my book club for our annual dining out together dinner.

Not All About Me: Though dining out with my book club sounds like a strictly all about me event, it is actually an extension of my mothering. Twenty-two years ago this coming January, I joined a baby group. A year into the baby group, I suggested we add another dimension to our focus, a book club. We call it, brilliantly, “The Mothers Group” book club. For twenty-one years this January we have been taking out books from The Mark Twain Library (our town library, founded by the eponymous Mark who graced our woods by living and dying here the last two years of his prolific life). As a member of this baby group, which met weekly, our daughter’s development was seen against a backdrop of at least eight other babies over her first years. And through that filter I was able to see some striking differences in her milestones and those of her peers. Frankly, the whole process, initially wonderful, became brutally painful. Yes other kids have some speech delays, but across the board, our daughter lagged. It made baby group, and frankly book club, less than joyful, though I love to read, valued these women, and was fond of their children.

Celebration: Now two of these women are grandmothers and tonight’s dinner, in part, is to celebrate the second of the grandmother events. Of course, the offspring who are parents now are from their older children, not the twenty-one year olds, soon to be twenty-two, whom we share in common. For years, much of the content of the chatter amongst “the mothers” was painful for me as their kids’ achievements were acknowledged and challenges supported. They shared play dates, coaches and socials. No one had a child like mine. No one does to this day. I have stayed in this group for almost twenty-two years and of course the bonds are significant. But the disconnect is as well. My child did not socialize with their children after the age of 3. The discrepancies between abilities were too significant. And though a couple of the moms tried to reach out and invite our daughter to events and even barter baby-sitting in one case, mostly I felt alone. And protective of my daughter.

The Past Is The Past: There are a lot of clichés I don’t like and this is one of them. The past mixes the drinks of our present. Yet, so much has changed. Our daughter is happy. As we in book club are aging out or about too — one member has actually retired — the children are dispersed and their successes and achievements are shared with each month’s meeting. I am not in pain anymore. And the differences don’t matter either. But what a hell of a journey. Actually just writing this makes me feel that knot in my throat. No one meant to be cruel, or insensitive or clueless or oblivious. Yet, it feels like that when you are the parent of a special needs child who spends time in the company of the normals. Our book club is an unusual group. No one has divorced. One woman was widowed fairly young. I am the oldest mom. And this is a steady, sturdy bunch of employed, educated women who range from the helping professions to education to the arts. But what separated me from them was only one thing. They all had fairly normal children who had brought us together initially and I did not (though my other child fit that bill nicely).

Forgotten Or Forgiven: We are celebrating many things tonight: one lady’s retirement (though she can’t make it, too retired), another’s opening of a new business, and the new grandma. And I think everyone will celebrate our daughter’s new adult life. The past is the present forgotten or forgiven. I don’t forget but I forgive, especially when no one means to hurt. It is just the journey and now really, it is over, that part anyway.

©Jill Edelman, M.S.W., L.C.S.W., 2011

I Am Busy With Something: 9-25-11

Other Family Matters:  I was busy today with other family matters and called our daughter early this evening to catch up. She didn’t pick up on her cell so I called the apartment phone and her staff person told me of their day, which included a movie about a dolphin who lost its tail, a walk, and the welcomed return of her apartment-mate. As I was ending the call, while on a drive back from NYC, I said, “If she (our daughter) wants to speak with me, fine, if not, no problem. We can catch up later.”

Busy and Blunt: Staff do not quite believe I mean that. They asked our daughter if she wished to speak to me and she replied “No, I am busy with something.” Uncomfortable, they asked her again and she repeated the phrase. “So you will call her later?” Nothing. Finally the lady gives up and returns to our conversation. And I say, “It’s fine, she doesn’t need to speak to me.” And I mean it. She’s busy, blunt and by the way, I am not offended.

Good night.

P.S. Just as I was finishing the post, my cell rang twice. Yep, the daughter called to tell me the tale of the dolphin, a boy, a veteran who was wounded, and a sad story that ended well. When she is ready to share, she does so beautifully, on her terms. A tale ended well.

©Jill Edelman, M.S.W., L.C.S.W. 2011 

Flying Home On A Donut: 9-24-11

We Made It: I missed an exit leaving the Cape, no surprise as I was super sleepy. Sharing a bed with our daughter in an Inn she disliked (my mistake) left me super drained and groggy. Probably stirred up by the prospect of the following morning’s memorial service and reunion with former classmates, teachers, and dorm staff, our daughter rose from our shared bed seven times before finally falling asleep, having startled-awakened me six times in the process. That was enough to bolt me upright and sleepless so I turned to one of those teeny tablets that smooth the journey to Mr. Sandman land, it now being 12:50 a.m. Early rising, emotional outpouring and post-memorial mall crawling left me rattled and ready to head south. Oops, missed the exit toward Providence, got off on way to Plymouth, turned around in housing development with granite curbs (yes, you heard it) and poof, puncture.

Meltdown Memory Lane: By now it is near four P.M. AAA took forty-five minutes to get to this slightly rural suburban street where I am parked with my puncture, daughter and iPad whose cellular access ran out as I was typing yesterday’s post awaiting Mr. Triple A. Here is where special needs kicks in. Our daughter, tired, eager to get home, looking forward to her Saturday of horseback riding with Pegasus, and attending Ridgefield Park and Recreation’s “Out and About Club” visit to the Irish Festival in Danbury, began to melt…down, down, down. “Where is that man? This is terrible. I have to get home. What about Pegasus? Oh this is just great.” And so it continued.

Did I try to explain, reason? Yes. Poor kid, it was a tough day. Earlier we had talked “feelings”; she was clear, no regrets leaving her school for life back in Connecticut. But she did miss her apartment-mate a lot (transitions) and her new home and wanted to get back there soon. When the man arrived, and replaced the tire with the donut, he told me either to drive no more than fifty miles per hour, or just fifty miles period. I wasn’t sure which but armed with my Garmin, I went to a Wareham, Massachusetts tire store certain to get a new tire and head home. No such luck. Apparently my tires are huge (who knew, bought the car off the lot) and would have to be ordered, and delivered, maybe by Monday, possibly Tuesday. Excuse me?

Swarm Of Wasps: Now our daughter is furious, as stormy as the darkened sky with its buckets of rain pouring down on us, and oblivious to the kindly efforts of three lovely local gentlemen whose empathy for our plight lead them to busily search their iPhones for open tire shops in the area with mega tires. One gentleman recognized my daughter, as he is part of the maintenance crew at her school (Riverview is one of the largest employers on Cape Cod), but this connection offered no solace for our daughter at all. For me, it is deja vu. I am caught in that miserable space of needing my daughter’s understanding and finding only anger and cognitive disconnect. Memory Lane. Years of it. So I drove home. Two hundred and probably twenty miles all totaled between the backtracking and such. Never surpassing fifty miles per hour, but quadrupling the fifty-mile limit of total miles traveled. Crazy? Choose your poisons.

Frazzled But Safe: Despite the rain, the glare, the trucks and their spray and with my dear hubby driving two hours north and meeting us in Mystic at Friendly’s (where we dined on junk and sucked down two sundaes) to shadow us the rest of the way home, in fact we all made it, arriving home frayed and frazzled yet safe, the midnight hour upon us.

 An Awful Powerlessness: Reminders of decades of scenes at airports, supermarkets, movie theaters, wherever and whenever something went wrong that disappointed, frightened or inconvenienced our daughter weighed on me as did the image on this week’s cover of the New Yorker Magazine, a clever black and white rendition of a bedroom scene, little girl in her undies, piles of clothes stacked near a window revealing a bus waiting outside, and a mom, with that familiar look, a bit desperate, a little pained while the pint-sized powerhouse tried one outfit on after another, reality or a bus honking, irrelevant. With cognitive disabilities, these scenes don’t age out, hopefully they mellow out but with the perfect storm, they swarm back in, just like wasps, bearing down on your head, your exposed places, your sanity. Sound dramatic? I am sorry for that. It is all a matter of numbers. Accrued. As I tell couples I work with, it isn’t simple hurt that takes a marriage down. We all hurt the people we love. It is accrued hurt, how much hurt over how many years, that topples the love. With a special needs child whose cognitive disabilities lead to challenging behaviors, it is the accrued meltdowns day after day over years; though love is never toppled, the spirit can be for periods of time, that’s for sure.

From Their Perspective: Clearly my daughter felt powerless too. Anxious, tired, overwrought (I love that word) and angry that her mom wasn’t doing something to alleviate her situation. The details of tires never mattered. Why the puncture, why it took Mr. Triple A so long to get to us, why we were standing in the rain and not heading home, did not compute. Is this disability? I think so. And how awful that must be, not to really understand something and yet be so sidetracked by it. That is why so-called “intellectual challenges” create havoc and fear. She and I argued a bit, not much. But for a moment it went something like, “Its all about you Mom.” And crazy me again, I even tried to explain how her attitude was all about her. If ever there were a conversation that two people of any age, relationship or gender, should never have, it is this one. I was deteriorating on the spot. Yet, sometimes I do worry that this blog is all about me. And that is an awful perspective.

Apology: This morning, while our daughter prepared her breakfast, about to go off to riding with her staff person who was kind enough to meet us at our house, she said, “I am sorry for being grouchy yesterday. I was tired.” Thank you my love. “Do you forgive me?” You bet. Always have. Always will. Do you forgive me for being a mom who sometimes doesn’t get it either? But when we signed off on the weekend, though I love every inch of that gal, I felt such relief. She behaves better for everyone else anyway. They won’t get the same “stormin” around that we do. And that is a good thing. And for me, I behave better too. You bet.

©Jill Edelman, M.S.W., L.C.S.W. 2011

A Shared Grief and A Puncture: 9-23-11

Riverview: What a profound place, this special education school that embraces its students and their families with arms of acceptance and devotion, class and humor. The memorial service for this precious young man, who perished because his seizure disorder interrupted an innocent dive into a lake he has probably spent years paddling about in, wrapped up his twenty plus years with rich descriptions and dedications to his determination and readiness to jump on board life’s many offerings. His family stood tall, his friends, dorm staff and teachers made speeches that revealed how well they knew this young Canadian. Unforgettable. My respect for this school and this family has no measure…it is just boundless.

Our Daughter Did A Good Thing: And she knew it. “I’m…

(Webmaster’s Note: Sorry for the interruption. Jill’s post, and the ride home from the Cape, was interrupted by a perfect storm: a flat tire, a dying iPad battery, bad weather, low cell phone battery… you know what, let’s just wait until Jill can tell you all about it tomorrow. Tune in tomorrow for the conclusion.)

I 95 North: 9-22-11

Kleenex: We are off to the Cape. I don’t need my Garmin. My daughter wants to know the dress code for a memorial service at her school. For me, the necessary article is Kleenex.

I have no idea what this return will feel like for her. But I will be watching.

©Jill Edelman, M.S.W., L.C.S.W. 2011

I Believe In Dreams: 9-21-11

Catching Up: Since our daughters moved into their new home about seven weeks ago, the other mother and I have not chatted. All was going well and we had the freedom to take care of other aspects of our lives. Today we finally caught up to make some decisions on coffee tables, ottomans and side tables. And to celebrate this smooth sailing that both our daughters have been experiencing in their shared life. We count ourselves enormously lucky. Lucky! The girls are really so bonded, beyond our dreams. She asked me “Have you heard anything negative between the girls?” Nope. In fact what I heard when I asked my daughter what she thought of her apartment-mate, some weeks into the new life, her answer was “She is awesome and so funny.” The other mom said, “That’s what I hear too.”

The X Factor: I know. But once our daughter went to boarding school we started watching Idol. (I was raised on Broadway musicals and love a great vocal performance). It is a natural segue. Tonight, the premiere of The X Factor brought out the good news first; this twelve-year-old girl with the kind of sweet face that reminds one of yummy muffins, belts out a song, and I am sold. (Even though I know I am being manipulated, that’s entertainment, the ultimate manipulation.) I believe in dreams. And I tell my patients, fantasize about what you would like (fantasy is a daytime dream). That’s how you know what direction to move towards. I did fantasize, or dream, about our daughter’s future. You have to. And I wasn’t deluded. I was wishful, watchful and pro-active. With our daughter for now, that dream has come true.

A Memorial: Tomorrow our daughter and I go to the Cape for the Friday memorial service of her classmate who died last month. This is the first visit since her June graduation. She will return to the campus where she spent most of her last five years. Many of her friends are still there or in the area. I wanted her to have this “reunion” and to honor her friend. Of course dreams are only as good as reality.

©Jill Edelman, M.S.W., L.C.S.W. 2011

Oh What A Night! 9-20-11

Colbie in Concert: Our night out on the town was splendid. Colbie Caillat is a teenage girl’s dream, soft, sexy, and descriptive on stage of thwarted love, regrets of affection withheld, vows to reveal more passion and take no guff (well that particular song was really about her girlfriend). With a slim body sporting denims with holes just where they meet the boot tops, straight wispy blond strands of hair requiring that precision sexy wave of the hand to sweep them from the eyes, she entranced the females from age six to, well, sixty plus off their seats and onto their feet singing the simple lyrics of love that make her songs as easy to inhale as wads of pink cotton candy. And I have no doubt that the dads and the dudes in the house were “moved” as well. And it didn’t hurt that her sensuous struts and leanings about the stage put her in hot proximity to her mostly male band members. The intro act, Andy Grammer, whose hit is “Keep Your Head Up”, was no slouch himself in bringing on the love: cute, talented, a cross between Jason Mraz and every one’s brother or son. To tip the scales even further in his favor while we waited for Colbie, he dedicated one of his first songs to his deceased mom, which evoked a deep groan of sympathy (Ohhhhh) from our daughter, probably heard from back balcony to front stage. What was I doing throughout the night? Grooving of course. And my gal pal, too.

Proud and Punch Drunk: They do serve beer at this theater but I didn’t drink, nor partake of the macaroni and cheese that is part of the family oriented snack bar. Nope, my inebriation came from bubbles of joy watching my daughter act so teen, knowing the lyrics, swaying and high-fiving with her best bud, the ever present apartment-mate. It felt so “normal”; forgive me for using that term. So free of the “outsider” world she inhabited for so long, and in ways still does. Maybe I waited a long time for this moment; actually I was content when it didn’t come. But strangely, now it was here. Though hardly a pre-teen or young teen at age 21, still our daughter manifested all the signs of an intoxicated groupie and honestly, that felt great! Oh what a night.

©Jill Edelman, M.S.W., L.C.S.W. 2011

DSS Messes and A Scary Future: 9-19-11

DSS: The Connecticut Department of Social Services, which handles the entitlements of Medicaid and food stamps, has decided to mess with my head in the last week or two. I can imagine how this must feel for folks who are more handicapped, cannot get to the DSS offices, or have few family members to deal with bureaucratic mistakes that impinge on food supply and health care amongst other necessities. Besides receiving a notice of a “new worker” assigned to our daughter’s case approximately once every three or four months, I received notice that her medical entitlements were to be dropped. Then I received another notice three days ago that I missed a scheduled appointment to consider an application for food stamps. Both notices were incorrect and fortunately went to Ability Beyond Disability, which is now in charge of all things financial for our daughter. Needless to say, it is daunting at best to think how increasing government cutbacks forecast on the horizon will compound problems for clients who are challenged with the normal routines of daily living.

Human Values, Missing: While Congress bats about the futures of the disabled as if they were those badminton birdies that are weightless and replaceable, I worry that our daughter and her compeers will experience an increasing deterioration of quality of life over the decades. This image is awful, and going on in many homes already. While millionaires shouldn’t be taxed at a rate to match middle class fellow Americans, perchance it might adversely affect someone, I forget whom, less fortunate folk can be sliced and diced in entitlements, education programs withered and roads and bridges cracked with fissures not unlike our culture at large. Human values? Missing!

Cobie Caillot: But tonight we party. Our daughter, her apartment-mate, my buddy and I will hear Cobie sing her heart out at the Ridgefield Playhouse. Every day that I am here will be a good day for our daughter. No one is going to mess with her future but she is amongst the lucky ones. I never forget that.

Hard Choices: I know families who are choosing to forgo dependency on government bodies for the care of their adult children though they qualify for government programs, because they are frightened by the uncaring hand of government agencies, frightened that programs can get cut; that quality of care can be compromised at the expense of their adult child. Many reasons. We chose a CRS category of housing for our daughter on the advice of our case manager and ABD as it gives us more control over where she lives, with whom she lives, and so on. To whatever degree we as a family can customize her care, we will do so. Depending on the government is a slippery slope indeed. But for most, providing funding for the long life of an adult special needs child is impossible. Fingers crossed, we will never let her slip. Hard choices for a lot of good people. Let’s hope that those who govern get compassion injections every two to four years. Intravenous would be best.

©Jill Edelman, M.S.W., L.C.S.W. 2011

An Oblong Moon and Courage: 9-18-11

A Revelation of Relief: Driving home from Ridgefield after dropping our daughter off following the movie “The Help” I saw this oblong moon in the sky. It was formed by an unusual arrangement of clouds framing its intense orb. Folks clearly had their first Fall fires burning in fireplaces and the car registered 50 degrees Fahrenheit for the outside temp. It felt like Halloween and a rush of thoughts about holidays to come filled my pensive mind. Wow, this season would be very different from the previous five. Halloween was a great family favorite (though pockmarked with behaviors, resistance and disappointment as well) but during our daughter’s years at boarding school, the family piece went out of the picture. Instead parents weekend at Riverview School was a command performance that included an awesome Halloween dance but also a lot of focus on parent-teacher meetings and “efforting” to ensure that our daughter was getting the educational programming and socialization training that were the obsession and direction of those years. Now I felt a coating of relief over sore nerve endings: no more holiday multi-tasking. Not in that way. The girl lives in the next town and Halloween, Thanksgiving and Christmas won’t involve eight hour drives, motel stays, intense probes into “How are you being treated here?”, impressing teachers and dorm staff with her “needs”, the inevitable breakdown revealing what was not working and of course, the fear of what will happen when these boarding school years are over. Wow. I mean this. Wow, this particular revelation of change feels exhilarating.

Relief: I thought of Christmas, one day rather than a two-week stay. Of Thanksgiving, one meal rather than a ten-day race to get to dentists, doctors and later, case managers, probate office and visits with potential apartment-mates. So much work is behind us, behind me frankly. Whew. It can happen. It has happened.

A Reminder Provided by The New York Times: To underscore the pleasure in this nocturnal revelation was an article in the Sunday New York Times today on efforts of one family and a special education specialist from Montclair, New Jersey, to move a talented autistic young fellow from the cloistered world of “difference” towards the opportunities of adult productivity and independence, a journey full of hard work, cries for help, loads of obstacles and the muscle and backing of those few angels along the way who make all the difference. Inclusion has many critics but several themes stood out for me in this piece: familiarizing peers with “special” youngsters early in their school experiences makes for a safer journey for that child. I saw that with our child and with others. “Weird” kids don’t seem weird at all when you know them. And secondly that the world of employment is missing out on incredibly talented and dedicated workers when they dismiss the possibility of providing an opening in their work place for special needs teens and adults. (See this article on one Danish company utilizing the talents of autistic adults.)

The Help: Oddly enough, the movie “The Help” spoke to me of the same issue as the article on autism and our family journey parenting special needs, “Difference.” When is the world going to get over “difference?” When are we going to evolve into a species that relies on curiosity and empathy rather than fear and rejection? Whether it is skin color, brain function, or belief, what will it take to embrace rather than shirk? I know this is philosophy and I am not a philosopher. But my goodness. When? My favorite line in the movie occurred when the main character’s mother, a former president of her DAR chapter, said in a moving apology to her daughter for a heartbreaking cowardly act that underscored the evil of their 1960’s Mississippi racist culture, “…courage sometimes skips a generation.” Too many generations! Come on world, let’s get on board.

©Jill Edelman, M.S.W., L.C.S.W. 2011