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Posts Tagged ‘acceptance’

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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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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INT. AT A BREAKFAST TABLE – MID-MORNING

The table is set for four although only two people sit at the table — an energetic seven-year-old DAUGHTER and a slightly groggy and disheveled woman, her MOTHER. At the two other place settings, a full but untouched bowl and a cup of obviously cold coffee sit opposite a rather messy, half-eaten dish of food.

Off-camera, a boy and a man are heard upstairs in the bathroom, where Week 8 of an Intensive Potty Training Siege is under way. Strains of Angry Birds and Thomas the Tank Engine spill down the stairs.

DAUGHTER

(With a maturity completely out of character, perhaps intending to distract her mother from the fact that she has covered her oatmeal in a vast quantity of brown sugar.)

So, Mother, what are you studying these days when you go to Children’s Hospital? (Takes more coconut flakes. And some raisins.) Like, are you studying to be a physical therapist, or an assistant doctor?

MOTHER

(voiceover, as she chews a bite excessively thoroughly)

Oh crap, oh crap, oh crap. Teachable moment approaching at 100 mph. Do I take it? WTF, why not. We saw the movie “A Dolphin’s Tale” this week and I think I did a good job teaching her about physical disabilities. I think I can handle taking this to the next level. Let’s do this!

(Aloud in a deceptively unaffected voice.)

Well, I’m actually studying kids who have something called developmental disabilities. Do you know what that is?

DAUGHTER

Oh, you’re studying Brother? Are you learning how to take care of him?

MOTHER

(Voiceover, completely freaking out but managing to act cool.)

What? How does she know? I’ve barely been able to refer to him as having a developmental disability to myself. I don’t even think I’ve ever used that term in front her her. Damn kids, they repeat everything. Shit, I have to stop cursing. OK, calm down. This is it! You’re going to have The Talk! Stay cool. What did the books say to do? Oh yeah, I never found those books.

 (aloud)

Well, actually, I’m studying in a class of people who are doctors and nurses and physical therapists and people like that who want to learn how to take care of kids like him. They’ve invited me to study with them because they want to hear what it’s like to be a parent of a kid with a developmental disability….They ask me about you, too. They want to know what it’s like for brothers and sisters of kids with developmental disabilities. Maybe you could come to class with me some day and they could talk to you. (Pause.) What would you tell them?

DAUGHTER

(Without hesitation)

That’s it’s hard to get my parents’ attention because they’re so busy with Brother.

 (She glances to get reassurance from her mom as she realizes that she might be saying something that’s not good.)

MOTHER

(Sips her coffee, nodding in agreement. Voiceover)

Oh crap, she noticed. OK, just acknowledge her reality, don’t try to fix it. Let her talk.

DAUGHTER

Because he needs a lot of help doing things, and he’s active and moves around a lot. And I help him, too.

(Though she has been speaking at a rapid clip, it’s clear she feels she has crossed a line and somehow betrayed her brother to the imaginary group she is talking to and begins to backpedal.)

I mean, he helps me and I help him. We teach each other stuff. I teach him things he needs to learn, like the alphabet and counting.

 MOTHER

What does he teach you?

 DAUGHTER

He teaches me that he’s been learning things at school. It makes me feel good to know that he’s learning things and growing.

(With a certain amount of surprised realization)

 Being a sister of a person with a developmental disability actually makes you feel pretty special.

MOTHER turns her head to hide her smile and watery eyes. She wants to cheer and hug her daughter; she realizes that the conversation went so well that if it was scripted it would seem fake. But she is acutely aware of the danger in praising her too much at this moment; she fears that she will condition her daughter to be self-sacrificing and ultimately resentful, which she desperately wants to avoid.

DAUGHTER too decides that that’s about all she can handle, and asks if she can have more coconut flakes on her oatmeal. Her day continues as if this conversation has never happened.

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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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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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Certain emotions — like fear, anger and sadness — are a little sticky for me. Among the skills that helps one get through life (like being able to jumpstart a car and make good martini) “processing painful emotions” isn’t one I’ve mastered. It’s not that I don’t feel those emotions, but I don’t always seem to experience them full out. I take a kind of walk-it-off approach, like when someone falls in public then jumps up and reassuringly shouts, “I’m OK!” and walks away quickly, even when their leg is bleeding.

As the challenges facing my child and my family queued up — medical, cognitive, financial, psychological, marital, and legal – the plain old fear developed into more of an outright terror. Even then, my Jedi mind tricks got me through. Move along, there’s nothing to see here.

During the first few years as a parent of a child with special needs, I became an expert at keeping painful emotions at bay by staying busy. I was a Superwoman – I worked full-time, had another baby, started my own business, served as PTA President – and I did it all with a smile on my face, a spring in my step, always upbeat, optimistic and positive. Not particularly joyful …just incredibly busy and completely exhausted.

Eventually, as most people skilled in the art of denial come to learn, it becomes more and more difficult to keep up the façade. As special needs single mom M so aptly puts it in her blog, In the Mire,  “[m]y theory is that you can’t get through special needs parenting without healthy and normal doses of denial at certain stages, which God then gently pares away when it’s time to move forward.”

Fast forward a few years and gratefully some level of the denial is being pared away, (maybe by God, maybe by lots of meditation, yoga and getting caught up on sleep) and I find myself not running away from my terror. After years of living as though this terror was a bottomless abyss that threatened to swallow me whole if I got too close, I’ve started to visualize it instead as a desert canyon. Sitting at the edge of this canyon, with my feet dangling off the edge, feeling a gentle breeze, I try to conjure up not a sense of fear as I look into its depths, but fascination. I’m trying to be a little bit more courageous to, if not befriend it, then to at least get to know it better. How deep is it? What are its layers made of? Does anything live down there?

As I explore and catalog the inner workings of this canyon, I find that it even has a name: the Terror of Scarcity. In the Terror of Scarcity, there’s never enough and there never will be – enough me, enough of my husband, enough expertise, enough time, enough health insurance, enough research, enough kindness, enough therapies, enough strength, enough resources, and especially, more than anything else, enough years of life in my body – to get my child safely and meaningfully through his life.

That’s a pretty scary place to explore. No wonder I avoided it. But guess what? I didn’t fall off the edge and I didn’t get swallowed whole. I’m still here. As long as I was unable to face the fear, there never was enough. I’m no longer so dysfunctionally optimistic that I can wish away the fear; as hard as it is to do it, I can only stop what I’m doing, look at it and really feel it. I don’t know for sure that getting to know it any better will ever make the fear or scarcity subside, but my instincts tells me it will. The biggest relief is that I don’t have to stay so tightly wound up anymore, so chipper and cheerful, so incredibly busy all the time.

There’s more to explore here, as there is in all rich places. But for right now, I have to go play with my kids.

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