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Archive for the ‘special needs’ 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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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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Another tool in my toolbox series that helps me live with joy, courage and compassion, as inspired by the Hindu goddess Durga.

In 10th grade business class, my teacher Mrs. Goldstein taught our class a model that promised to make us more successful in life. When faced with a difficult decision of whether or not to do something, she counciled us to execute the following strategy:

  1. At the top of a sheet of paper (this was the 1980’s, so no, there was not an app for that) write down the a potential course of action to address your problem. Below it, create two columns called “Pros” and “Cons,” and brainstorm what each of them could be.
  2. Review the list and after careful consideration, select the proper course of action.

Although I can’t say I (or many teenagers) went to the trouble of pulling out paper and pen when faced with a tricky decision, but the exercise captures the essence of a very Western approach to decision making. I put a lot of stock in what my intellect — my “head” —  had to say about things and had faith that sound reasoning and reflection alone would lead to a positive outcome. In the special needs worlds of evidence-based medicine and education, Data is King.

But there are other internal sources of information available to us. Marketing managers everywhere know that we unconsciously make decisions based on our emotions and then find intellectual reasons to justify our decisions. We often refer to our heart as being the seat of our emotional wisdom, as reflected expressions like “he followed his heart,” or “she has a lot of heart.” As a parent, my heart is often the governor for much of my behavior, both good and bad — affection and yelling to name just two. As a special needs parent, letting my heart take the reigns too often can lead to excessive worry or guilt and make my behavior very risk aversive.

Lately I’ve come to appreciate a third kind of intelligence as a complement to my head and my heart: my gut. Why? When I look at a situation through the lens of my intellect, I focus mostly on quantifiable facts, and my field of vision is fairly narrow. Looking through my heart, I often take the decision which will provide short-term relief of pain but may not provide a long-term solution. But when my gut is the lens with which I view a situation, suddenly I have access to all sorts of information — in addition to my head and heart wisdom, murky hunches based on connections with past experiences and insights that my intellectual memory can’t quite put its finger on get equal say. It’s as if my gut has superior peripheral vision, able to read and react to a complex situation quickly, the way a quarterback can read a play in progress and know exactly where to get the ball.

One way I my gut shares its wisdom with me is by acting as a little voice or a milli-second of nearly imperceptable hesitation. “Don’t put your keys there or you’ll forget them,” the voice says, or “Don’t hit the ‘send’ button just yet on this email.” The challenge, of course, in this crazybusy life of mine, is to not drown that tiny voice out with distraction and mindlessness. I don’t know how many times I’ve made a mistake — from harmless ones like dropping a glass to more costly ones like trusting the wrong person — and realized that I knew all along it was going to happen but I was in too much of a rush to listen. When I am grounded in my body and present in the moment, the voice is amplified. Pausing and taking a breath, I can reconnect with this voice and ask for its guidance. Perhaps people who seem to have extra-sensory abilities are simply able to crank up the volume of this voice.

I won’t stop using my head or my heart; in fact I think my gut instinct works as well as it does precisely because my head and heart have so much experience. No need to throw the baby out with the bath water. I simply appreciate having another channel of information, one that is often dead on and incredibly quick. But don’t take my word for it — trust your own gut. I’d love to hear your thoughts…or feelings…or instincts.

P.S. In recent years, the research coming out regarding the Enteric Nervous System (the one hundred million neurons embedded in our gastro-intestinal lining) now referred to as “the second brain,” is pretty fascinating. In the same vein but coming from a completely different tradition, many mind-body schools of thought like ones who use energy fields or chakras, consider the solar plexus to be the seat of personal power and will. There’s a lot to explore here if you’re interested.

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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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Life is glorious, but life is also wretched. It is both. Appreciating the gloriousness inspires us, encourages us, cheers us up, gives us a bigger perspective, energizes us. We feel connected. … On the other hand, wretchedness–life’s painful aspect–softens us up considerably. Knowing pain is a very important ingredient of being there for another person. When you are feeling a lot of grief, you can look right into somebody’s eyes because you feel you haven’t got anything to lose–you’re just there. … Gloriousness and wretchedness need each other. One inspires us, the other softens us. They go together.

Pema Chödrön (Start Where You Are: A Guide to Compassionate Living)

Lately it feels as if I am reaching the limit of my emotional capacity—my container, as it were, is if not overflowing, then damn near full. It seems like I’m looking at everyone around me through a pair of polarized sunglasses, bringing their pain, regret, injustice, joy and gratitude into vivid clarity. The highs seem higher, the lows lower.

Life seemed simpler when I was just bobbing along the surface. Digging in the dirt of the real and sometimes unmeetable special needs of my children, my family and even myself has brought me into contact with a side of life that I’d rather not know about.

Without afflicting you with the horrifying details, I was beyond saddened—I was sickened–last week to read of the case of abuse and coverup at the Judge Rotenberg Center. Years ago I would have shaken my head at the inhumanity of it; now I take it personally and read it as if it is happening to my own children. It’s so raw and extreme and I know it’s not helpful, but I don’t know how else to be right now.

It triggers a nerve, begging the question that many parents of children with special needs contemplate—what will happen to my child when I die in a world of so much fear, so much ignorance, so much evil? I know, I know, heavy stuff, and not what you came here to read about. I sat with the question for a moment, breathed deeply and got on with life. What else can one do?

And though this is the new normal for me, I can’t leave this post hanging that way. As I said, the lows are lower, but the highs are higher too.

This weekend we went camping with some old friends. Their daughter is only a few days older than my son, though cognitively and physically they have seemed light years apart for a long time. She is becoming a beautiful, intelligent, strong girl and I’ve observed for the last few years how she tries to make sense of the boy who she once considered her best friend, who cannot always keep up with her fun, but who delights so much in everything she does that he literally cannot stop laughing when he’s with her.

She and I had a few minutes alone together walking in the camp ground. Surrounded by so much nature, we got to talking about the cells that all living things are made of. It seemed a teachable moment, and so I then remarked on how there are genes in each cell which give instructions on what the cell should do, and that sometimes these genes start giving the wrong instructions. In her friend’s case, I explained, the instructions about growing and learning are a little mixed up. “But sometimes there’s a good side of these mix-ups,” I said. Her eyes lit up with her a-ha moment, she nodded and without missing a beat, she said, “Because he thinks everything I do is funny!”

To watch her have that awakening, that difference is natural and sometimes beautiful—I can only wonder why I spend so much time worrying about the world when it is filled with so much love, so much awareness, so much connection.

Heartbreaking challenge and breathtaking beauty. Wretchedness and gloriousness. They go together indeed. And luckily, as the emotional containerthat is my heart is pushed to the limits of its capacity, it is seemingly growing bigger.

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Here’s the third in the belabored series on tools that inspire me as a special needs parent to live with joy, courage and compassion, as inspired by the Hindi goddess Durga.

I am not a naturally athletic person. Lest you get the impression from the post’s title that I am one of those people with a vexing bottomless well of physical energy, aptitude or endurance, (though my favorite is Rob Lowe’s Chris Traeger’s character on Parks and Recreation) I must assure you that I am a clutz.

I was a good student in my youth. I felt secure and comfortable in the realm of my mind but completely at a loss when I paid any attention to my body. Growing up I barely completed a season of any sport, most often quitting after the first few lessons or games. My athletic prowess extended to the occasional aerobics class or a night out at the bowling alley every decade or so. I learned to swim and ride a bike years after friends my age did. Oh, I did play softball one season, though it ended with a broken nose and the assistant coach sarcastically yelling, “Look what I got!” on the single occasion I managed to catch a ball during a game.

In my late 20’s I accidentally cultivated a slow-jog habit. I say accidentally because I really can’t otherwise explain how I found myself pulling on my sneakers and jogging while trying to hold steady a very skippy portable CD player during many of the summers of the late 90s. The object was to simply move my body, not push myself too hard – which I was very good at.

Once parenthood hit though, the sheer physical exhaustion and a sleep-deprivation induced fogginess punted that shaky practice right out the window. Finding time to exercise meant getting up early. Sleep was what my body needed there was no way I’d miss a minute of it. Besides, I hardly had enough time or energy to go to the bathroom; why would I squander precious energy on running a loop around my neighborhood when I needed it to unload the dishwasher?

At some point in the last few years though, the sneakers found their way out of the closet and I am just as surprised as you are to find out that I have a pretty decent jogging habit again. I’ve even done a few 5ks in the last year or so, run through the last two winters and I’ve probably doubled my speed – I can run much faster now that I’ve upgraded to an iPod.

What has come as a surprise is the pleasure not rekindling the slow jog ability, but of pushing my body really hard. As I crank up the volume of that perfect heart-thumping track, I’m almost always able to run faster and farther than I believed possible, and with that success comes the insight I am quite possibly mentally and emotionally stronger than I believe. I push myself by choice out on that sidewalk so that when I’m faced with a surprise obstacle in my everyday life, I already have experience of ignoring the voice in my head that tells me, “You have to stop, you can’t do this.” I don’t know how it’s possible that this is the same voice, but it is.

Another gratifying by-product of voluntary exhaustion is the way it can simply shut off my incessant mental chatter and calm my anxiety. Though my mind continually seeks out things to obsess about as long as it’s awake, it does take a little break in the hours after a good, hard workout. I have worked through and integrated some experiences more effectively by simply moving my body than I ever could by thinking about them. Sometimes the body knows how to handle that which the heart and mind simply cannot process. It took an apparently smart girl a surprisingly long time to learn that.

I don’t need to be a jock. I’ll always have my curves and my clumsiness. But I do have a new appreciation for my body’s wisdom, its value and its strength. And now when life throws me a curveball, I might just be able to catch it without breaking something.

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