What matters to me

When our son was about six years old, my husband and I were faced with a difficult healthcare decision. His rare genetic syndrome made it nearly impossible for our son to keep his attention on anything for longer than seconds at a time, and he moved from activity to activity without landing or learning. (I captured a snapshot of a that time in a blog post here.)

His neurologist recommended that he try medication for ADHD. His teacher was supportive, since she watched his struggle to maintain focus in school. But others weren’t so sure. His cardiologist was concerned about side effects that could affect his vulnerable heart. His gastro-enterologist, endocrinologist and his dietician pointed out that he was already struggling fiercely to grow with the help of a feeding tube and growth hormone shots. Did we really want to jeopardize his growth with a medication that would most likely decrease his appetite?

I remember asking friends, family and other parents of children with complex health care needs what they thought we should do. Everyone had an opinion based on what they would do if they were us. The problem was, they weren’t us; it wasn’t possible for them to put themselves in our shoes. Clinically, there was no one perfect choice, and the professionals couldn’t say for sure, either.

Ultimately the decision came down to us. We thought long and hard and boiled the issue down. What mattered more: physical growth or mental/social growth? What mattered more to him? To us as his parents? To our family? With this in mind, we made a choice. Who knows if it was the right one, though in hindsight it still feels right.

I’m grateful that we were allowed to become informed and to make a choice. But that wasn’t always the case. For many years, patients and families were not given choices, and simply told what to do according to clinical guidelines.

Little did I know that almost exactly the same time, across town at Massachusetts General Hospital (the very hospital in which my son was born!), researchers Susan Edgman-Levitan and Michael Barry were writing about an important shift in health care called shared decision making.

In their article Shared Decision Making — The Pinnacle of Patient-Centered Care, they described a process “by which the optimal decision may be reached for a patient at a fateful health crossroads … and involves, at minimum, a clinician and the patient, although other members of the health care team or friends and family members may be invited to participate. In shared decision making, both parties share information: the clinician offers options and describes their risks and benefits, and the patient expresses his or her preferences and values. Each participant is thus armed with a better understanding of the relevant factors and shares responsibility in the decision about how to proceed.”

Edgman-Levitan and Barry go on to say that to work this way, both patients and clinicians need to change:

“Patients should be educated about the essential role they play in decision making and be given effective tools to help them understand their options and the consequences of their decisions. They should also receive the emotional support they need to express their values and preferences and be able to ask questions without censure from their clinicians. Clinicians, in turn, need to relinquish their role as the single, paternalistic authority and train to become more effective coaches or partners — learning, in other words, how to ask, “What matters to you?” as well as “What is the matter?”

Asking “What matters to you?” as well as “What is the matter?” It doesn’t sound like a big change, but it is. The question of “What matters to you?” has become a rallying cry within healthcare among those who wish for healthcare to become more empowering and inclusive for patients, their families and their communities.

In fact, this week marks the fourth annual ‘What matters to you?’ day, celebrated at healthcare organizations around the world to encourage healthcare ask patients, the public and professionals what matters to them.

Here in Sweden, I’m organizing a digital conference. (Info in Swedish here.) I’m excited to show how the question is being asked and used to improve health and care. In the hustle and bustle of the program, there probably won’t be time to think about what it felt like all those years ago when we were stepping into empowerment and involvement, but it’s there in my heart.

So, what matters to me? Connection, respect, learning. A good cup of coffee and saying thank you. Remembering to take the time to smell the roses (and if I’m honest, sometimes picking one as I did this morning on the way to the office). And of course, being allowed to make choices for me and my family. How about you? What matters to you?

The Birthday Girl Gives Everyone Else a Gift

birthday cake
birthday cake (Photo credit: freakgirl)

This Saturday my son and daughter went to a birthday party of a very close friend, let’s call her the Birthday Girl, who recently moved to another town. Though the Birthday Girl’s older sister has been acutely aware of my son’s developmental differences for the past few years – I wrote about out a wonderful moment we both had last summer – the Birthday Girl had never seemed particularly conscious of his differences.

Based on my observations of the Birthday Girl and my son together, I assumed that my son would just blend right in with this group of fifteen birthday-horn-tooting, sugar-high seven-year-olds. Boy, was I wrong.

It hadn’t occurred to me that because this party was in another town, many of the kids attending wouldn’t have met my son before. In fact, I wonder if many of them had ever met any child with a cognitive disability as great as his before. It made for an interesting party.

A few minutes after we arrived, the kids were invited to sit at the large dining room table for pizza. At the head of the table, the Birthday Girl had set a place for herself and my son, and insisted that he sit next to her. On either long side of the table, many pairs of eyes stared at him, curious about this boy who moved differently, talked differently, and looked very different, too. They weren’t rude, just quiet and clearly very curious. I tried to facilitate somewhat but was really at a loss as to how to turn this in to a teachable moment.

After pizza the kids went out to the back yard to play for a while, then came back in to have cake. Again the Birthday Girl took my son’s hand and led him to the head of the table.

A few moments before, the kids had been asked not to blow their mind-numbing birthday horns indoors a few minutes before; somehow my son missed that message and proceeded to toot away.

“It’s OK that he’s tooting,” Birthday Girl said. “Because he’s…” and she stopped short, not knowing how to end the sentence.

“Cuckoo,” another child said.

“DON’T COMMENT,” she yelled insistently. “Well, you can comment, if you want to say something like, ‘He’s so nice.’”

And that was that. The party proceeded on. The kids watched a movie, and my son had the darnedest time trying to stay focused. He made noise, climbed on the kids, and eventually, I brought him outside with some toys to play while we grown-ups had a beer.  I felt satisfied that on some level progress had been made. I wondered what it would be like for these kids the next time they met a child like him. Maybe they would consider that child a little less strange, a little less cuckoo.

Recently Kara Baskin wrote a nice piece in the Boston Globe about the simple wish list she has for qualities she hopes to see in her child: graciousness, gratefulness, kindness to strangers and kids who are bullied and old people. Who could disagree?

It struck me that that was probably what all these birthday party guests’ parents wanted for them, too. But it is Birthday Girl who is all those things, and part of why she is is because she has been given a many, many chances to practice being patient, considerate, compassionate, and accepting; many, many chances to see my son laugh, struggle, and love her, too.

If we want our children to be good baseball players, we have to give them a ball and a bat. If we want them to play piano, we have to get access to a piano. If we want our children to be compassionate, we have to give them situations to practice compassion. Not just write lists about it, but do it.

Here is a girl, freshly seven, standing up for someone vulnerable, speaking out to her peers and telling them not to bully. Modeling for her friends how to not just tolerate and accept, but to welcome and appreciate difference. How amazing her life will be. I am excited to watch her grow and am grateful to learn from her.

Happy Birthday, Birthday Girl. You are already wise beyond your years.

No Pity, part 1

I bring along my son, who attends a special education school many miles away, when I pick up my daughter at her neighborhood school’s after-school program.

Since he started attending the far-far-away school a year ago, the ties that bind him to our neighborhood are snapping, one by one. Granted, they were never strong, as he’s always been in a self-contained special ed classroom. But hanging out in the after-school room while his sister wraps up an activity and gets her stuff together is often the only five minutes he gets on any given weekday to hang out with a typically developing child besides his younger sister or her friends, who are not his friends.

Yesterday, he and I were approached by a young boy, probably just his age, who looked at my son, turned to me, and asked, “Can he talk?” Assuring him that he could, I facilitated a little introduction. Stimulated by the bustle of the activity in the room, my son had a hard time making eye contact and speaking in a voice loud and clear enough to be understood by the boy. “Why does he talk like that?” the boy asked. Slowly and gently I replied “Well, because his brain works a little differently than yours or mine.” Piggybacking on my egregious error of talking about my son as if he wasn’t there, the boy replied, “I feel sorry for him.”

“You shouldn’t,” I told him. I corrected myself. “You don’t have to. He’s happy.”

A teacher overheard us, told the boy to go back to what he was doing. My daughter appeared, ready to go home. There was just too much commotion in the room and too much chaos in my head to know the right thing to say, so I let it drop.

Pity is just an indicator of not being aware of someone’s strengths, which in turn is an indicator that there isn’t much opportunity to get to know someone in the first place. Inclusion, inclusion…how long do I have to wait?

Playing Whac-a-Mole

The daily grind of life as a special needs parent often feels like a game of Whac-a-Mole. Have you played that arcade game? Equipped with one huge padded hammer, the player attempts to hit small mechanical moles that pop out of their holes. Only one mole can be up at a time, but as soon as you hit one down, another pops up. The faster you hit them, the more there are to hit. Hit the most moles in the allotted time, and you are the winner. Free stuffed tiger to the lady in blue!

For those of you who’ve been there, you know what I’m talking about. Just as we finish addressing one issue, another comes up. Some neurology crisis arises…whack!…then it’s time for IEP negotiations…whack!…cajole our way to a new bus driver…whack!…and it’s time for another surgery…whack!…and the game goes on and on and on.

This past week we saw a new specialist in a branch of medicine we haven’t encountered before. It’s been on my to-do list but we just had so many other pressing challenges to deal with — failure to thrive, regression at school and the death of my dad to name but three. Not trying to sound like a Drama Mama, but I’m just sayin’: this particular specialist didn’t even make it out of our doctor’s recommendations and onto our calendar for five years.

So this week, as we waited in the exam room for the doc to arrive while my son ripped his collection of outdated periodicals to shreds, I reflected on how I’m just whacking away…but kind of grateful that our situation has changed enough that I could even contemplate sitting in this particular office at all.  Another tiny wave of gratitude arose when it hit me that some things can wait. Everyone isn’t so lucky. What happens when all the moles pop up at the same time? One only has one mallet.

Of course, seeing the specialist this week (whack!) led to another referral and another specialist. More whacks to come. But I’m aiming to win that giant panda hanging up at the rafters and I can do this for a long time.

Siblings talk about the sibling experience

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.

Families pull up a chair to the table

After years of asking myself questions like “Why am I filling out this medical form when this information is already in their computer?” or “Why does this doctor only see patients during school hours?” and other such silly observations along the journey through parenting a child with special needs, I suddenly find myself invited by a couple of well-respected healthcare institutions to share my perspective with their staff and students.

It’s quite a responsibility to be given a seat at the table among pediatricians, speech/occupational/physical therapists, psychiatrists, practice managers, social workers and policy lawyers. I am so grateful to those family advocates and disability activists who have worked tirelessly to create a culture where a parent’s experience and opinion is valued and sought out. I hope I don’t let them down. I’m also acutely aware that I am speaking on behalf of the vast majority of parents of children with special needs who feel disenfranchised and powerless; due to either perceived or actual limitations, they don’t know how to speak their mind, share their story, or give their feedback to the professionals who hold the purse strings, create the laws, implement the therapies or design the communities that impact their families’ lives in very real ways. I hope I don’t let them down either.

On the heels of us parents pulling up a chair at the table, there’s another group beginning to claim their space here too—siblings of people with special needs. As the folks who will possibly spend even more of their own lives with their special family members than parents, sometimes as adult caregivers and guardians, they have a perspective to add to the conversation. Particularly amazing to me is how aware they are of the ways this experience has shaped them and helped them grow. Their very “boots on the ground” experience with a decidedly non-parental (read: less hysterical) perspective gives their experience credibility; I know I seek out their advice to help me create a family where both of my children can thrive and feel nurtured.

As sibling groups mobilize to create support groups and education like SibShops, conduct and share research, and build their own community within the Family Movement, I just have to say how glad I am that they are here.

They also just might be more effective at educating the very folks whose tables I’m sitting at these days than I am. In blogs, at fundraising events, on YouTube, in the media and on Capitol Hill, they are savvy and persistent.

Here’s a recent example, a short but remarkable video by a teenage sister of a boy with special needs. I can’t believe how lucky we parents are to be standing shoulder-to-shoulder with her:

Durga’s Toolbox #4: My gut

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.

Let’s all go to the lobby and get ourselves a snack

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.

Gloriousness and Wretchedness

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.