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Posts Tagged ‘Special needs’

Last year, my typically developing seven-year-old daughter had about a 1-minute homework attention span and over 30 minutes of homework daily. You do the math.

I tried everything — pleading, yelling, coaxing, creating a consistent routine, using positive behavior reinforcements and a visual timer — to no avail. Staying focused without having someone physically present to re-direct her attention to the work was simply above her ability. The year started and ended with a lot of teeth gnashing from both of us. The question of ADD hung in the air.

This year’s homework now lasts 10 minutes or less. Problem solved, more or less. No more anger and frustration. ADD is still a question mark, but our lives are more peaceful.

I also have a son who has a number of medical, developmental and behavioral special needs, much more complex than, but including, difficulty paying attention. Though it’s not a perfect analogy, it’s hard not to wonder if something similar could happen to him if the world was different.

The more time I spend “fixing” my son’s various medical etiologies, behaviors, and inabilities so that he can productively participate in society, the more I wonder: Are his disabilities themselves really a problem, or is it society who has a disability?

If his school cannot provide an adequate and appropriate education for him — is that his disability or theirs?

If our town’s recreation department cannot come up with a single activity that he could do with other typically developing peers — is that his disability or theirs?

If my community cannot see his value and seek out ways to include him in their restaurants, plays, activities and events — is that his disability or theirs?

If it does not occur to local business owners that they could one day hire him — is that his disability or theirs?

If my country cannot see the justice in creating a safe and welcoming society for him (and everyone like him) that gives him the supports he needs until all of these disabilities are overcome — is that his disability or theirs?

I’m not proposing that we lower the bar for him. But what if we could raise it just a little for everybody else?

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You don’t know how it feels to be me.” Tom Petty

Community is a wonderful thing, a place where we feel a deep sense of belonging, a place where we feel seen.  The special needs parenting community has been particularly healing for me. Connecting with people who understand my challenges, my fears and my anger releases or lightens those very same emotions simply through the act of having them observed and acknowledged by someone who I believe understands them. Realizing that instead of just a “me” there is an “us” is a true blessing.

The trouble is that with every “us” there comes a “them.” By finding comfort and community with those who understand what it’s like to be me, I’ve been drawing a ring around the “us.” While I’m not exactly banishing folks who haven’t shared my experience to the space outside of the circle, I’m unconsciously not including them.

This weekend I was on a meditation retreat with the Buddhist nun and wonderful teacher Pema Chödrön. At certain points throughout the weekend, she invited questions from the audience. An audience that I realize now I saw as “them.” People approached the mic, shared their stories, sought advice. People who had no idea about my particular flavor of pain, but who clearly had their own: addictions, abuse, trauma, violence, isolation. It was impossible to not expand my circle to include them in “us.” Our pain is all the same, Pema pointed out. Only the storylines differ.

When I am in pain, I feel isolated, cut off and invisible. Why would I want to inflict that pain on someone else? It struck me that placing someone outside my circle was an act of aggression, of causing that very same pain. It’s a little embarrassing and ironic for a person who declares she wants everyone to be included.

“How did I get so lucky to have my heart awakened to others and their suffering?”

–Pema Chödrön

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I’m on shaky ground this week, dizzy and disoriented. I can’t find a linear thread here so I toss out all these puzzle pieces hoping to make a coherent picture in the end.

Last week I jealously listened to a couple of parents on a panel share their memories of receiving their children’s diagnosis of a particular genetic syndrome before or at birth. Their stories triggered memories of my own years of confusion and worry when my child with medical, cognitive and developmental special needs had no diagnosis or prognosis, only assurances to wait and see. Nothing like their experience of having rock solid information, a roadmap, a sense of place even.

Chronic limbo left me unmoored during those years. I had two mental tapes, the public one which chanted “he’s fine, he’s doing great, wait and see, he’ll catch up” in unison with the therapists and teachers around me, and the private one, darkly creative, the one that read or heard about the worst cases of horrible care and outcomes for adults with disabilities and inserted my gentle, vulnerable son’s image into each one.

In the special needs parenting world, talk often turns to the need for acceptance. Accepting our children, accepting our challenges, accepting reality on a very basic level to simply exist helps us meet it with wisdom and discernment instead of running away from it in fear or kicking it away in anger. Without a clear sense of what was actually going on, acceptance was elusive for me. Acceptance and proper diagnosis, at least in my experience, were connected, and one couldn’t come without the other.

A few years ago my son was given a label, a diagnosis based on the appearance of his symptoms. The mothers on last week’s panel talked about how they both remembered the exact moment they receive their child’s diagnoses–where they were, what they smelled, what song was playing on the radio when the call came in or the information was revealed.  Our diagnosis was never like that. It just evolved over time based on new symptoms as they appeared, a name of a syndrome followed by a question mark which faded over time until it was nearly invisible.  It wasn’t a perfect match, but simply getting a label enabled me to get unstuck and move toward acceptance and advocacy. With the diagnosis came a whole new tribe of folks to talk to, new access to research, to resources. It felt good to stand on ground that wasn’t exactly solid, but swayed just gently and rhythmically enough to make it look like I was dancing.

A few moments spent on the website of a genetic syndrome support group this week brings me face-to-face with photos of a boy who could be my son’s identical twin. The same eyes, the same jaw, the same nose, even the same expression. Another click of the mouse and there’s another one. Brothers from another mother. With a deep sense of knowing, like cylinders in a lock clicking into place, I see my child in the list of symptoms where only a year ago I could see no strong resemblance. It’s hard to explain how. New symptoms have appeared, new behaviors have been identified. But this is not our genetic syndrome, not our diagnosis. A different one, a rarer one, with a whole new set of symptoms, a whole new tribe, a whole new language, a whole different place altogether.

And the ground begins to shake yet again.

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Following yesterday’s post about the importance of hearing more from siblings of special needs, someone pointed out this great video from the Arc of King County in Seattle, Washington.

Watching the video brought to mind a stressful evening last week where my daughter, who is typically developing, expressed her feelings of just how unfair it is that her brother, who has special needs, doesn’t have to do homework like her — through tears and with a great amount of screaming. This video convinced me that’s it’s time to ramp up the help she’s getting in figuring this all out.

The video is a little on the longer side at nearly 15 minutes, but a great introduction for parents, grandparents, family friends and teachers on the challenges their neurotypical kids might face. It could also be worth showing at a Special Ed Parents Advisory Council meeting or other gathering.

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Several years ago at a conference I listened to a woman tell about the extraordinary home she lived in India when she was younger. One side of the house, she said, butted up against a slum area; people lived amid squalor and poverty, picking through trash in order to survive. Exiting a door on the other side of the house, she could enter into a beautiful secluded garden, where peacocks strutted among exotic flowers. Describing one’s life, much like describing the outside of this house, she continued, was largely a result of perspective:

I could tell you a story of my life that would make you very sad, and it would be true. I could tell you a story about my life that would seem very joyous, and that would also be true.”

Last week I was challenged to write the story of my own experience as the mother of a child with special needs. Applying for a family leadership fellowship on neurological disabilities, I was asked to sum up my experience raising a child with special needs in a page or so. In writing it, I recalled the woman’s story of India and realized that my story too depended largely on perspective. I could tell several different stories – each one true – depending on my vantage point.

I was startled by how easily I could evoke sadness and pity or triumph and exuberance depending on the experiences I chose to include. Even the same experience could be seen as positive or negative depending on the details. For example, there’s the very real fact that my son didn’t learn to walk until he was nearly four, along with all the accompanying challenges and inconveniences of that. But there’s also the fact that my son learned to walk at all, which wasn’t always a given, thanks to the help of a brilliant physical therapist. Which set of circumstances holds more weight for me?

Which brings me to the bigger question: what version of my story do I tell myself? I’m not talking about our public stories, like the one I was writing, or the ones we tell when we introduce ourselves or the 140 characters of a tweet or Facebook status update. We all know how true yet misleading and selective those glimpses can be at times. One well placed exclamation point or emoticon can change everything. No, I’m talking about the story I tell myself when there is no audience – my honest interpretation that creates meaning and context for my experiences. The version of events I tell myself with no make-up on at 2 am in the silence and the dark. And if I can do that, is there any value to it?

According to some, there is good reason to explore this. Therapist Michael White developed an entire branch of family counseling called narrative therapy; this form of therapy assumes that narratives or stories shape a person’s identity and then uses these stories to create a healthier or more creative outcome for his patients.

The usefulness of narrative isn’t new to most special needs parents. Most of us parents are welcomed in to the special needs world with the well known Welcome to Holland story. I know that for me, that gave and continues to give some meaning and context to my experience.  For many of us, our very person story would echo some of the progression of that story.

For many people, the monomyth of Joseph Campbell’s Hero’s Journey also provides a meaningful narrative that describes a life of challenge, growth and redemption. His work is so rich that I can’t begin to describe it in this post, but I promise to get back to it soon, if only for my own benefit. For Campbell, Homer’s Odyssey was perhaps the archetype and I find strength and meaning in its arc of denying then accepting the calling, receiving divine aide, facing the trials, achieving the boon and returning back to help others.

I encourage all of you to give writing your own story a try. In one page or less, how would you summarize your plot? If it were a movie, would it be a comedy, a drama, a quirky indie flick or a horror movie? Do you have any lesson, truth or theme and how can you capture the complexity and contradictions of your experiences? Beware of trying to write how it ends. Just tell the story of what has happened up to this point; remember, we’re not whitewashing anything or trying to manifest anything through wishful thinking – just create order out of the chaos of what has already happened.

In the mean time, I continue to write and re-write my story. I know it can change on a dime, but for the moment it’s my story, and I’m sticking to it.

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With the same jarring sense of realization that I’ve left a load of laundry rotting in the washing machine, this Sunday’s Boston Globe article Learning to Share reminded me of my intention, pledged back in the last millennium, to equally share the parenting load when I became a mother. What’s shared parenting? As the article so aptly puts it, “it’s the difference between being willing to drop off the enrollment form for summer camp and realizing, months ahead of time, that the right camp must be found; between picking up a box of Huggies on request and knowing when supplies are running low.” It may sound tricky (and according to the article, it is) and maybe it isn’t everyone’s dream, but when I read the article, I remembered that it had been mine.

In the idealistic-yet-oblivious flash of social justice insight that only 20-something’s get, it was obvious to me that if I wanted my future daughter to be able to balance a family and a career, I would have to do it first. And with almost eerie prescience, I sensed that simply learning to juggle more wasn’t going to cut it; equal opportunity would start in the home, and that meant shared parenting, not just being a mom who could bring home the bacon and fry it up in a pan.

Looking up from my coffee cup twenty years later, I realize things aren’t quite what I planned. Influenced by aptitude, interest or culture, when my husband and I divide household chores, we party like it’s 1959. Him: breadwinning, carpentry, car repair, pay the bills, IT service, comparison-shop for large household purchases, mow the lawn, kill vermin, assemble the tent, load the bike rack on the car. Me: cook, grocery shop, laundry, clean, de-clutter, mend (well, feel guilty about not mending), volunteer for PTA, buy teacher gifts, do all gardening except mow the lawn, schedule playdates, shop for back-to-school clothes.

Having a child with special needs seems to cement the roles even further. It’s fairly common to have a “case worker/bread winner” division of labor in special needs families, a la Kristina and Adam Braverman in Parenthood. (Love it or hate it, but that show and its companion blog nail my experience as special needs parent in so many ways.) In our family, I’m the one who schedules appointments with our son’s eight doctors and three therapists, chauffeurs to therapies, spearheads IEP meetings, special orders medication and medical supplies, badgers the insurance company, keeps track of the big picture in both kids’ development. Perhaps it’s possible to split this work down the middle, but I honestly can’t see how. In my son’s case there is simply so much information to keep track of and synthesize that my husband and I would spend as much time getting each other up-to-speed as doing the work itself. To make it possible for me to do this, my husband gets to take on the high-stress role of sole breadwinner while keeping up with one heck of a honey-do list. (Is it my fault that he’s the only one who knows how to solder?) We both work incredibly hard, but we are definitely not sharing parenting. I don’t even think this is strictly a gender thing; I’d wager money that same-sex special needs parent couples find themselves in the same bind.

Reading that article, I felt a little disappointed in myself. Somewhere deep inside I’m still that idealistic young woman who hoped to change the system instead of punting the problem forward to the next generation. Caught in a daily grind of unloading the dishwasher and reading neuropsychological evaluations, it became so easy to lose sight of that.

Without creating unnecessary pressure to hold myself to ever increasingly impossible standards, I want to continue to think about this. I would love to hear from other families (especially one who understand the challenges that special needs add to the mix) on how they share parenting. I need some good role models and some inspiration. And maybe simply some hope. Am I the only person thinking about this?

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