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Archive for the ‘IEP’ Category

Other people’s dreams can be so tedious, I know, but it can’t be helped.

I’m at a support group with other parents of special needs kids; I can’t see the other participants (am invisible to them, too) because the room is all obstructed views. I ask if we can re-arrange the seats, but am told that I don’t need to be there, this meeting isn’t about me, I seem to be doing fine and this is a support group for people with urgent issues, but why do I ask, they wonder, do I need to talk? I burst out crying, “I ALWAYS need to talk,” and I’m whisked away to another part of the room before I infect the others with my hysteria.

I am led to a table surrounded by a Greek chorus of special needs parents who in real life know my heart the best, and I plead “When will I need to stop talking about this?”, embarrassed, ashamed that I’m not cool about all this, that my struggle means that I don’t love my son, that I’m not a good mother. “I mean, he’s healthy, he’s not in pain, he’s not sick, he’s loving, he’s great. So why do I still feel like I need to talk about this?” They absorb my words impassively. Without pause my words continue to flood out, “Sometimes I think about what it would be like if I could take all of his challenges away,” and they shake their heads vigorously, moaning, “No, no, we must never do that, it can’t be done,” but I can’t help it, the words are already out, Pandora’s box has been opened, and the only way to describe what that would be like is to show them, and I raise my face upward and gasp for breath, arms floating as if I am breaking the surface after being underwater much too long, and they all raise their faces too, and they all inhale deeply with me.

“But that’s not the right metaphor,” I said, “because that would mean that now, I am drowning.”

And I wake up gasping for breath.

———–

Last weekend I went on a retreat called “Living Beautifully with Complexity and Change.” Our theme, we were told, would be this prophesy, taken from Perseverance by one of our teachers, Margaret Wheatley.

From the Elders of the Hopi Nation
Oraibi, Arizona  June 8, 2000
 
To my fellow swimmers:
 
Here is a river flowing now very fast.
It is so great and swift that there are those
who will be afraid, who will try
to hold on to the shore.
They are being torn apart and
will suffer greatly.
 
Know that the river has its destination.
The elders say we must let go of the shore.
Push off into the middle of the river,
and keep our heads above water.
 
And I say see who is there with you
and celebrate.
At this time in history,
we are to take nothing personally,
least of all ourselves,
for the moment we do,
our spiritual growth and journey come to a halt.
 
The time of the lone wolf is over.
Gather yourselves.
Banish the word struggle from your attitude
and vocabulary.
 
All that we do now must be done
in a sacred manner and in celebration.
For we are the ones we have been waiting for.
 
————

In my dream, I was right. Drowning wasn’t exactly the right metaphor. I wasn’t drowning, but being torn apart from clinging to the shore. And the clinging, I see now, doesn’t come from me wanting him to be anyone other than exactly who he is, but from wanting the rest of the world to be a place where he — where all of us — is safe, welcome, valued. I know that to help the world become this place, I must let go, surrender to the river and its destination, and sometimes I can. There are no guarantees that the middle of the river is any safer, any less treacherous, but it feels like the right thing to do. Every moment becomes the chance to do it again, to re-commit to letting go and being in the middle, where all the important work gets done.

Here I float, in the middle of the river, in sacredness and celebration, banishing the word struggle from my attitude and vocabulary. Will you join me here? When I forget, will you remind me to let go?

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As a parent of a child with special needs, I often shy away from memoirs and auto-biographies of self-advocates and family members.  I know I should want to be more informed, but after a day of IEP meetings, behavior plan implementation and toilet training, I tell myself that I simply can’t find the energy, let alone the time, to immerse myself in someone else’s experience. If I’m completely honest with myself, I must admit that as someone who hasn’t gotten her own story straight on what it means to be a parent of a child with special needs, I can feel guilty or inadequate when reading how some other parent has gleaned insights and found acceptance where I still struggle.

So it was with some trepidation that I learned I would be required to read just such a book for a developmental disability class I’m taking. We were allowed to pick the book, so I chose My Baby Rides the Short Bus: The unabashedly human experience of raising kids with disabilities for our assignment; I remembered hearing from several other parents that it was good, but had never gotten around to reading it for the reasons mentioned above. As an anthology of essays, it might be easier to dip in and out of it between loads of laundry and calls to doctors and state agencies.

My trepidation disappeared in the first page. Assembling thirty-eight stories from “non-conformist” parents “on the fringe of the fringe,” the anthology’s editors expressly collected voices representing a diversity of class, gender, race and struggle; I knew this wouldn’t be the usual special needs parenting book. The authors “range from a Burmese mother overcoming her own physical disability as she works through her son’s challenges, to a lesbian minister who becomes a foster parent and advocate of a developmentally delayed teenager not much younger than she is, and a ‘quirky’ single mama who quit school at the age of sixteen, yet successfully took on her son’s school system to find an accessible placement that accommodated his cerebral palsy.”

Quickly I found my first question: Is there such a thing as a universal experience of parenting a special needs child? More questions quickly followed: Is there such a thing as non-conformist special needs parenting? Aren’t we all a little (or a lot) on the outside already? I got curious to see what themes would repeat within the essays and which voices would stand out as different.

The essays are brash, funny, outraged and outrageous, heartbreaking, disturbing—sometimes all at once. Reading Kathy Bricetti’s “A Bus(wo)man’s Holiday” about her experience working as a school psychologist while parenting a child with Asperger’s Syndrome, I was reminded how many of the school professionals and other experts we so eagerly mistrust are themselves parents of children with special needs doing their best in an imperfect system. Sharis Ingram told what could easily be my story in “What I Said, and What I Didn’t Say.” She recounts the evening she was invited to speak to social work grad students and all the many things she felt so compelled to share about her experience that she ran far over her allotted time; I often feel that same sensation as I participate as one of two parent voices in this developmental disability class. Some essays offer simply a glimpse into a sliver of someone else’s world, like Jennifer Byde Myers recanting of the challenge of writing an honest-but-not-scary ad for a childcare sitter in “No Use in Crying.”

As soon as I began to assemble a unifying theme to the book, I would read one more essay and it would prove the exception to my rule. It became clear pretty quickly that the authors, while united in the label of being parents of children with special needs, were not sharing the same experience. For example, many authors write about their struggle to connect with their child, and how their family provides the child with a sense of belonging. Then along comes Andrea Winninghoff’s “Interpreting the Signs,” the story of how she, a young, poor, single, hearing mother, after years of trying to keep her son close, releases him to his Deaf culture and lets him attend a residential school. “As he becomes older and more complex person, I am afraid that the nuances of his culture will escape me. The fear that breaks my heart is that because I found the strength to love him enough to let him go find himself in the freedom of his own world, he may never come back home to mine.”

Many of the authors write about feeling judged by other parents of typically developing children. Some feel judged by the healthcare and education systems or by their friends or family, but most often by strangers in public. I begin to assume that because of our experience of being constantly judged, we should be a fairly tolerant bunch. Not so! Amber Taylor, in “’Because He’s Retarded, Ass!’” writes about her experience of tension and backlash in support groups when the other parents learn that she became a mother through adoption, as though her “choice” to adopt a child with special needs negates her experiences and challenges. Again, no universal theme appears, at least for me.

This sense of feeling judged that permeates the book is often expressed as being offended by the word choices of others. Several authors write about how much they dislike when people use a particular platitude, like “I don’t know how you do it,” and yet many express that they think the very same thing when thinking of a parent with a child whose needs are greater than theirs. In “Jackpot!” Amy Saxon Bosworth writes about how people tell special needs parents “what a present they’ve received, what a strong person they must be to have been given such a magnificent gift, like you won some disabled kid lotto.” But then in Christy Everett’s essay, “A View through the Woods,” we are reminded that we could have been those strangers staring at us and our kids and saying the wrong things if things had been different. “To the Woman Who Stares and Looks Away,” she writes, “I’m no different from you, not really. I wasn’t born to do this, not chosen because of my wealth of compassion, patience, or grace. I looked away once, just like you.”

I think the strength of the anthology is this complexity, this lack of unifying theme or concrete answers. The editors do organize the book into loose chapters that parallel the rather inevitable journey from diagnosis, to navigating the system, finding validation, and community support and transition. But what the collection captures is not just a diversity of parents or experience, but a depth of emotion, and by providing a space for the writers to be raw and honest—sometimes so much so that we want to turn away—they are letting all of us feel less ashamed of the breadth and depth of our own feelings.

“This is what love looks like,” Andrea S. Givens ends the last essay. No single entry could have painted a complete picture, but together they do create something that is rich, complex and worth looking at.

My Baby Rides the Short Bus: The unabashedly human experience of raising kids with disabilities. Edited by Yantra Bertelli, Jennifer Silverman, and Sarah Talbot

If any of the authors happen by some chance to find their way to this blog entry and have links to more of their work–please plug away in the comments below. And thank you for writing!

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A few weeks ago I wrote about the luscious, feet-up summer I was having. The contrast between last month and this one couldn’t be more stark. Not only is it back-to-school for the kids, but back-to-school for me and a big mental transition out of a period of grieving for my father and my role as full-time case manager for my son with special needs.

Hear that grinding noise? That’s the sound of me switching gears rather ungracefully, from first to fifth and back again without completely depressing the clutch. As I work through the tasks of coordinating new childcare routines, figuring out how to be a student in the 21st century (there are no Trapper Keepers on this side of the millennium),  swapping summer clothes for fall, getting used to my husband being away for travel more often again — I am a hot mess. It is not pretty.

In the midst of all this busy-ness, I committed one of the cardinal sins of special needs parenting (and honestly, parenting in general…no, make that life in general): I decided I was too busy to take care of myself.

Self-care for me is the stuff that builds my capacity for this intense life, increases my strength, stretches me and makes me grow. It is not glamorous or even pampering; it is sometimes sweaty, sometimes painful, sometimes boring, often the last thing I want to do with my limited time and energy. It is more akin to the “wax on, wax off” training exercises that Mr. Miyagi had the Karate Kid do — motions that, when done often enough, become part of muscle memory, protective stances deeply rooted in habit and graceful in their economy of movement. Practices that bring me into my body and present moment and hopefully keep me there long enough to fix a couple of problems, give someone a hug and have a laugh.

It started out that I told myself that I didn’t have time to go running because I was too busy catching up on a summer’s worth of email. Then, I couldn’t go to yoga because I was too busy getting ready for school. I couldn’t plan or cook healthy meals because…you guessed it, I was too busy. Eventually, it wasn’t just that I was too busy, but I was too tired, too.

An occasional skipped workout — what’s the big deal, right? Isn’t all of this focus on self-care really just self-indulgence? Maybe for some, but for me, not taking care of myself quickly spirals into unpleasantness towards for the people I care most about, my husband and kids and my mother: I become critical and I raise my voice. I hold others responsible for my emotions. (“Don’t make me angry…you don’t want to see the Hulk when he’s angry.” That kind of thing. Real nice.) I overextend myself, get overwhelmed and anxious, which I strangely compound by trying to distract myself from by going on-line and taking in even more mindless information. I also tend to not pay attention to details and make mistakes which cost me more time and energy.

When looking at the costs of not taking care of myself, I see that self-care is not self-indulgent. It is a responsibility. For the sake of my family, my friends and my community, I can’t afford not to.

What is sort of confounding to me is just what a huge amount of self-care I, a bundle of anxieties and distractions, require. No two people require the same amount, but when I look at the list of just the basic self-care maintenance activities that are needed, it’s almost absurd:

  • Physical: run twice a week, yoga class twice a week, some form of activity (walking or biking instead of driving) on other days; plan and prepare healthy meals
  • Mental and spiritual: attend weekly talks at my local insight meditation center and meditate daily at home for 30 minutes; make some art once a month; step away from my phone and computer every day
  • Emotional: connect with my husband and kids every day; go to therapy every other week; blog once a week; sketch or write in my journal as needed; get together with a friend (without kids) once every other week; read books and blogs by and about special needs parents

I get up at 5am to meditate and journal. I go out after the kids go to bed for yoga and to see friends. I squeeze in the runs when I can; I’m no longer ashamed to show up to school pick up drenched in sweat. I leave early for my meetings so I can bike. At times it seems so unfair that in addition to IEP meetings, doctors’ appointments, therapies at home and everything else, that what this life requires of me is a tremendous amount of time and energy simply on maintaining my sanity.

But this morning, as I headed over to the yoga place around the corner, despite the fact that I have a million other things to do, I remembered there’s a brilliant saying from AA (Alcoholics Anonymous): “It takes what it takes.”

It takes what it takes. As in, yes, to get sober sometimes you do need to check yourself into a hospital, move, get a new job, leave your spouse, get new friends, go to a meeting every single day for the rest of your life.  Some people need more than that. Some will need less. How much does it take to get sober? It takes what it takes.

How much does it take for me to live without be angry, stiff, whiny and overwhelmed? Apparently a fair amount. It takes what it takes. For all of us. Even for me.

Anyone out there care to share what it takes for them? Can you share what you’ve done to make time for self-care, especially when you’re busy? I could really use some inspiration!

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Things have been silent on the blog front lately, not for any particular reason other than that I’m taking a little break from trying so hard. A time-out of sorts — a pause, a respite, a recess. Dead air, as they say in television.

As Mother Nature unabashedly does her thing, pouring out verdant lushness, ripe peaches and tomatoes spilling out over bushel baskets at the farmers’ markets, I’m taking a moment to stock up on sunlight, fresh air, sand between my toes.

It’s not just on the blog front that things are quiet, but on the whole special needs parenting front too. My family’s needs aren’t pressing right now and there is space and ease for hanging out. After a year of steady diligence on many fronts — academic, behavioral, medical, psychological, social — I have declared myself off duty, off the clock, off the hook and goofing off. I’ve got my feet up. I’m letting the piles pile up for a while, letting go of needing to make progress, letting go of striving — the compulsion to be moving toward something, anything, away from here and now. It is deliciously restorative.

And yet there is an undertone.

Without wanting to seem pessimistic or dramatic, this break has a quality of a cease fire, a deliberate yet temporary break in the battle. It’s not that I consider myself at war with anyone or anything in particular; though it is tempting to allow myself that black-and-white self-righteousness of seeing my life as a fight against the enemies of a flawed healthcare system and an underfunded special education system, I’m capable of more complexity. But walking this path, regardless of the fact that I wouldn’t change it for the world, has its costs: fear, exhaustion, avoidance, denial, grief, frustration at not being in control, embarassment that I haven’t yet learned that no one can be.

This intermission to me is like those late afternoons Homer wrote so often about in The Iliad when Greeks and Trojans agree to put down their weapons so that they can clear their wounded off the field, bury their dead and patch their soldiers up for tomorrow. Each evening they would return to their ships or their walled city, roast a sheep, sing songs or play games, but fully aware that the next morning they’d get up and do it all over again, if they were lucky.

With this intermission I’m not just goofing off — I’m taking stock of the costs that have been made so far, awake with the knowledge that soon enough the troops of patience, compassion and courage will to suit up and be mobilized again. There will be IEP meetings, eligibility interviews, calls to my state reps, and long waits in doctor’s offices for very few answers.

Just…not today. Tonight after we put the kids to bed my husband and I will meet out on the deck for a drink and we’ll put our feet up. I’ll show him this video of vintage movie intermission clips, and we’ll talk trip to the beach for later in the month. And goof off.

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My son celebrates a birthday this month. It is a joyful occasion. Like all parents, I spend the days leading up to it planning surprises, buying and wrapping gifts, reflecting on how quickly the years are flying by. We are celebrating it not once (with cupcakes in bed on birthday morning), not twice (with a birthday party at the zoo for friends), but three times, this last and final once while we are here in Sweden visiting my husband’s family. I love that he can hear “Happy Birthday” — the Swedish version, that is — sung by his cousins, aunts, uncles and grandparents.

Because my son has some special needs, however, his birthdays can be a little “sticky” for me. The undeniable, black-and-white chronological number that designates the number of years he has accompanied the Earth on its rotation around the sun is not at all in alignment with any other age-related number that happens to be going on in his life, and this sends me for a series of tailspins:

  • The clothes I buy for his gifts are sized by age. Because of his genetics, his clothing size is that of a child three years younger than he is.
  • Toys are given an chronological target market, but the ones most appropriate or desirable for him are often half his age or even less.
  • When asked his age, my son often gets the number wrong, referring back to an age a couple of years ago. (Maybe it was a really good year?)
  • Even the whole issue of hosting a birthday party raises a host of questions. Who are his friends? Will inviting more children increase the odds that he gets invited to more birthday parties? What activity will be appropriate for his friends with special needs?

Most of the time I can ignore the numbers, but on his birthday it stirs up some sadness.

One thing that makes it easier is to know the sadness is coming and to be prepared for it. The most helpful perspective I got in this regard was from Maria Trozzi, M.Ed., director of the nationally renowned Good Grief Program at Boston Medical Center, who I had the great fortune to hear speak several years ago. Trozzi, who is known for her work in dealing with grief and children (she consulted on both the 9/11 and Columbine tragedies), Trozzi expands her expertise in bereavement to the grief families experience when a child is diagnosed with a disability: what she calls the “grief that keeps on giving.”

While some of you might find the use of the term”grief” in this context over-the-top or insensitive, I personally find Trozzi’s use of the term helpful to describe my experience of needing to let go of a lifetime of expectations. No other word could really get at the magnitude of the loss I was feeling at the time. “Grief” hit the nail on the head for me.

The night I heard her speak, she talked about the importance for parents of children with special needs of identifying what she calls “grief touchpoints” – predictable times in a disabled child’s development when parents’ grief is exacerbated. The example she gave of a that sticks with me most strongly is the story she told of the father who completely lost it each spring when he drove by the season’s first Little League practices starting up near his house. He had spent many years dreaming of sharing his passion for baseball with his child, for whom traditional Little League was simply not an option. Who knows, maybe the father found inclusive or adaptive baseball for his son, but the point of the story was that this particular experience really re-opened some old wounds. As long as he pushed that grief away, the pain was fresh each and every year; but once he began to see what it represented, and know that it was coming, he could absorb it a bit more gently.

My son’s birthday is a grief touchpoint for me. So are most of our IEP meetings and doctors’ appointments, reading evaluations and progress reports and nearly anytime I run into kids who were in our mother/baby group. For some folks, family gatherings or holidays can be grief touchpoints. They can come like a punch to the gut or they can come like a grey cloud that hangs over everything for days. For me, it’s helpful to know what they are, why they come. I’m getting better at recognizing them, feeling them arise, letting the emotion be what it is, breathing into it, and letting it pass. It’s not that I want to wallow in it; I just want to get on with it. There’s too much good stuff to celebrate to waste time being stuck.

I’d love to hear more about what your touchpoints are and whether Trozzi’s labeling of them as such is a useful perspective for you.

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