A different story

The last year has been tough for Ben. He often acted out at school where the demands seemed too much. Outside of school his world seemed to get smaller. It's hard to find activities for him that he enjoys and can participate in easily. He doesn't get enough exercise and is content to sit at the computer or TV for hours.

So imagine my surprise when I learned that Ben was becoming quite the aqua plane champ at Camp Kennebec. It's hard to see, but if you look closely in the pic above (or zoom in on it), you'll see Ben being pulled on a board behind the boat. 

He holds on to two ropes with knots in them.

In the last three weeks he's also done: tubing, horseback riding, water skiing, music, woodworking, arcade, puppetry, talent show, canoeing, sailing, swimming, go-karts and kayaking.

At the carnival a week ago, Ben chose to be the person to sit in the booth while people try to hit a target. If successful, a nail punctures a water balloon over Ben's head. He participated in the talent show where another camper sang his favourite song: When somebody loved me (Jessie's theme song in Toy Story).

Here's an update from Coco, our friend who is with him this week at camp:

"Ben is becoming a pro on the aqua plane. He didn't even say 'no' once when he was getting into the water yesterday to wait his turn to get on it!  

I am so proud of him. He is excited for the dance tomorrow night. Tomorrow is one of his counsellor's birthday's. Yesterday we made her a card. He knows that tomorrow we will get cake.

It's an overcast day today. Potential for rain is everywhere [Ben's favourite weather] so he has been looking up at the grey skies and just about giggling with excitement.

He has been initiating signing a lot this week and asking a lot of 'why' questions. I've been interpreting for Ben a lot with his interactions with staff and campers here while his counsellors are really taking a lead with guiding him. 

He wrote in his journal the other day: 'I feel happy at camp.'  I think that pretty much sums it up. Camp is great for Ben. I believe he has a true sense of belonging here. The staff here are great with him, as are many of the campers." 

I love picturing Ben, outdoors, waiting for his next turn on the aqua plane. Then, being pulled across the water like he's flying, the wind in his hair and an ear-to-ear grin on his face. Occasionally he'll burst into laughter, but he'll quickly pull himself together, otherwise he'll fall off the board. But even if he does fall off, which he does, he's learned how to get back on.

These are the stories I want for my son, the stories that diverge from the disability narrative and what he can't do. 

These are the stories Dr. Paul Browde of New York University spoke of at the international conference on narrative medicine in London in June. 

“Everyone has a story,” he said, noting that “people who are marginalized often feel they don’t have a story.”

Second, there are many stories in every life, he said.

And third, “a good life is one richly described.” This means a good life is one about which many stories can be told...It’s not about stories having a positive spin, but rather about excavating for many different stories to describe someone’s life, which makes the life richly-described, and that is a full life.”

I thank our workers Sallyanne and Coco and all of the people at Camp Kennebec for giving Ben the opportunity to live and tell a different story.

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Does being smart make you a 'better' person?

When I was at university (yes, decades ago!) I think I felt that I was somehow "responsible" for my intelligence. That I'd made a choice to be "smart" while others make choices to be athletes or runway models or contractors.

I think I was even a bit smug about it. 

I remember a conversation with a friend that went something like this: "If you could be smart OR beautiful—but not both—what would you choose?"

I was flabbergasted when my friend (who happened to be brilliant and was once a child model) chose beauty. She felt it was more important to be beautiful than smart, she said. She felt it could get her further in the world. 

This seemed shallow to me. I thought of beauty as something that a person had little control over. You're either born with looks that fit Western standards of beauty—or you're not. And looks can't tell you anything about who a person is inside, I thought. Looks can't make you a "good" person.

It's taken me all these years, and the birth of my son with intellectual disability, to realize that I didn't in any way "earn" my intelligence, or "work hard for it," and it certainly wasn't a "choice."

It was an aptitude bestowed on me at birth. It was luck.

For some reason, I'd grown up believing that smart people got where they were because of some combination of moral superiority and hard work. That they'd chosen to be smart. And that there was some kind of higher good associated with intellect that didn't exist with other human attributes.

I was reminded of this mindset when I saw intelligence described as "the highest virtue" in this article by Columbia University professor Rachel Adams, who has a son with Down syndrome.

Her piece begins: "Last week, a doctor told us our 4-year-old son's IQ is 67."

Adams recounts the process of having her son tested and, how, even though she knows the weaknesses of standardized testing, the results were devastating.

"Much as I recognized the flaws in the test, I found it impossible not to care about the results," she writes. "I know how much they matter. Between us, my husband and I have nearly 25 years of higher education, three master's degrees, two Ph.Ds and a J.D. We've gone far in life by being extremely good test takers. I teach at an Ivy League university where intelligence is held to be the highest virtue. It was cause for celebration when the SAT scores of our first year entering class outranked those of Yale's. I see the opportunities made available to students who, because of talent or training, know how to succeed at standardized tests."

It was Adams pairing of intelligence with "virtue" that made me balk.

I've always considered virtues to be various kinds of human goodness. In this online Oxford dictionary reference virtue is described as:

"Behaviour showing high moral standards: A quality considered morally good or desirable in a person."

Virtue is also described as a "useful" quality of a thing (e.g. "these are his greatest virtues") and in the archaic sense of chastity.

By describing intelligence as "the highest virtue" at Columbia, Adams seems to give it a moral quality (though perhaps she meant simply to say it is the most "useful" human attribute).

Intelligence—which is largely dicated by our parents' genes—has nothing inherently to do with goodness. It can be used for good, and it can be used for bad.

Because Adams ranks intellect 'numero uno" among virtues, the reader is nudged to consider the traditional theological virtues of faith, hope and charity (love). Is Adams suggesting that intellect has surpassed these as a moral good?

I don't think she is—because she goes on to say that the best rejoinder to her son's low IQ score was to be found at home, in "the warm reality of my complicated child," a boy she sees as "clever and funny and full of potential."

I do, however, think Adams is underscoring how quick our culture is to define intellect as the most precious of human qualities, and to assign a moral characteristic to it: Smart people are good people. 

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Love: It defies measure

Imagine my surprise and delight when I received this story by Eric Fischer, dad to Segev, 15, in Israel. Many of you know Eric as the author of I am a broken man/You can't break me, a personal blog that Eric recently closed. Eric was born in Holland and has lived in many places. He's trained in traditional Chinese medicine and shiatsu and is an intuitive bodywork therapist. Thank you Eric for this important piece! Louise

Love: It defies measure
By Eric Fischer

I have to wonder at the audacity with which we are judged by others. 

Of course it happens to us each day and we may even be guilty of it. But nowhere is it more alarming than when we feel our children’s lives deemed unworthy because they are severely disabled. 

As a parent providing round-the-clock care for my son for 15 years, there are many constants in what has become our tiny, hermit-like life. Unfortunately, judgment is one of them.

It may come in the form of "What is the point?" when discussing the care of my son. "Isn’t he suffering?" is asked, sometimes in tandem to suggest that I've had no reason to be taking care of him all these years. “You have no life," is the nail in the coffin.

It seems incomprehensible, even to those well-intentioned, that my life providing 90 plus hours of care to my son each week is as fulfilling as it is difficult. That in the process of this caring there is a place for personal growth: an opportunity to experience a connectedness at the deepest level of our humility, an opportunity to define our humanity.

Each day my son has countless seizures and multiple respiratory therapy sessions. He must be fed and toileted and given a large number of medications. Surgeries have left him scarred and debilitated as his paralyzed body slowly collapses in on itself.

Strangely, the practical difficulties this presents don't disturb me nearly as much as the ignorance expressed by people who feel the need to project negativity on our lives. This includes doctors who counsel "You should think about having another child, don’t bother with this one,” to bioethicists who maintain that a sick child, if also disabled, doesn't possess a life worth living.

For years I remained calm when these comments were made. After all, we're all mature adults, simply discussing matters dispassionately, aren’t we?

I tried to convince whoever I was speaking with by gently pointing out the good moments in our life. I never invoked the "sanctity of life" dictum, so frowned upon by academics. In The Netherlands they've already found a way around the "sanctity of life" argument: the bioethics of utilitarianism hold sway and, without a public referendum, the term "unbearable suffering" has become the catch-all to justify doctors encouraging parents to agree to "assisted dying" of newborn disabled children.

But this view is based on more than one omission. We are human beings, still caught in a process of development and indeed, in need of development. As evolving beings we need to progress in some of our most lofty virtues, such as caring for one another and the understanding it brings of our inherent equality as humans. The ethics behind discounting the worth of a disabled, ill child suggests that we are only equal when we are "the same."

I no longer attempt to defend my position in these discussions. Instead, to those who judge my son's life as meritless I say: "Try it." Raise an extremely physically and mentally compromised child and then, and only then, tell me what you think. You can't express opinions with deep, life-and-death ramifications when you lack basic knowledge of the subject.

Of course most people won't have the opportunity to try this kind of "extreme parenting." So the next best thing, for those who want to develop an informed opinion, is to speak to parents who are raising, or have raised, these children. Yes, speak even to the parents who have lost their child. Ask them about their experience and I dare you to find someone who weighs in solely with regret. Ask them if it was worth it. Ask them if it contributed something real to their lives.

I don’t think many parents, when their child is given a strange look at the park, enter into a discussion of bioethics with the perpetrator. And I find everyday people who give “the look” are not usually in the least bit nefarious. 

However, I am worried about policy makers, bioethicists who sit on medical boards, like the ones in Great Britain, Belgium and Holland, or someone like Peter Singer in the United States. These people cloak their bias in reasonable-sounding arguments: as Horace called it, ecipimur specie rectie (We are deceived by the semblance of what is right).

Many people are dazzled by our information age's ability to express the human genome in a series of ones and zeroes in a computer. But we can't reduce our love of and care for a child to a number, to a quantity of human worth.

Caring night and day for a disabled person changes us. Allowing it to change us is an exceptional and worthy endeavour, especially in light of the fact that we naturally recoil from change. Change makes us uncertain, and parents willing to partake of this life are the very definition of courageous pioneers.

"Given the chance, would you do it again?" is a question asked of parents like me on forums and in news story comments. It's often used as a trump card to silence those who defend the value of children like ours.

Would I do it again, if given the choice? Allow my life to be turned upside down and inside out? To lose financial stability, any semblance of certainty in life, and comfort? To see aches and pains and chronic fatigue turn to ailments? To watch others continue their lives with social connections, vacations and friends?

Would I choose to suffer the heartache of those moments when my son’s life seemed to slip away, only to marvel and be filled with gratitude as he bounced back, again and again? And until when? Would I choose to share in those simple moments of connection, when life is reduced to its most valuable elements?

Yes. In a heartbeat, I would. 

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Nature fix

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He ain't heavy, he's my brother

Pamela Merritt, 40, talked about being co-guardian with her sister of her 42-year-old brother, who has profound autism, at the Healthminder day at BlogHer 13 in Chicago.

"I was five years into the guardianship when I said 'this is for life,' Pamela of St. Louis, said. "I have to pace myself. There is no end game."

Pamela and her sister live about 15 minutes from her brother's group home, "so we can drop by unannounced and give him an active social life," she said. "If I didn't have my brother I wouldn't live in St. Louis, but he can't move and that's a sacrifice I'm willing to make."

Pamela says the greatest struggle "is to maintain his sense of worth and ensure he's participating in the community." She said he had a wonderful job that gave him a great sense of pride. "He would get up at 4 a.m. to go in at 10 a.m. When he went to the bank to deposit his pay cheque he would shake everyone's hand."

Because her brother receives Medicaid and food assistance ($160 a month), he had to give up the job. "If you work you're seen as taking advantage of the system, a freeloader," she said.

Her role as a sibling guardian is often not recognized, she said, particularly at work. "There's a huge understanding from co-workers if you need to leave work for a child, but not for an autistic man who is your brother. The guilt you feel over a sibling is the same as the guilt you feel over any loved one."

Pamela uses her blog as a place to vent about the challenges. To protect her brother's privacy, "I talk about it from my perspective: 'This is how it's impacting me.'" 

For example, in this post she said: "My brother has had a rough couple of months. I can't get into the details...

"Suffice it to say he’s frustrated and letting the whole world know.

And I’m a mess.

Because I can’t cast rainbows across the sky.

I can’t fix it with a snap of my fingers."

Pamela said she relies on the support of her blog readers to help her get to a place where she can problem-solve. "I give myself permission to not be all that perfect, which is hard for me," she said. "You have to give a person permission to be human, to stumble, to cry and laugh, and say inappropriate things on Twitter."

Pamela said it was important for children to know that it's okay to sometimes be embarrassed or resentful of their sibling with disabilities. For example, she described coming home one day to find her brother outside their house in his underwear, eating an apple.

"I knew it was okay to resent my brother the same way my friends resented theirs," she said. "I get angry with autism sometimes. I wanted to be perfect as a child because I never wanted my mother to have to deal with me in addition to my brother."

In becoming a guardian "there's no way to plan for what we walked into," she said. "You can only plan to have to learn."

Pamela relies on social media tools to help cope. For example, she has a scheduled Skype chat with her brother from work once a week. When it's her brother's birthday, relatives who live too far away to attend the party participate through a video chat. And Pamela uses Google Hangouts to stay connected to her girlfriends.

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Women who build community, change minds

With Jen Reeves, Born Just Right (back left), and Julia Roberts, Support for Special Needs (front left), and Christina Shaver (Hopeful Parents).

Today I was part of a BlogHer panel about how our online stories about raising children with special needs can build community and pull disability issues into the mainstream, changing perceptions.

I have "known" Jen and Julia and Christina in the blogosphere for some time, and it was an honour to meet these women, each a powerhouse in her own right.

Jen is an advocate for children with limb difference (I got to meet her lovely kid Jordan last night). She just did a meet-up here in Chicago that drew 45 families, including some out of state, who all have kids with limb anomalies. The message of her blog Born Just Right: We are all okay, just as we are. Jen is from Missouri, but we immediately knew someone in common: Gavin, a little boy featured in a winning photo in Holland Bloorview's Filmpossible 2011 contest. Gavin's mom blogs here: One Little Fin.

Julia's two children have a number of medical conditions and differences: vision disorder, developmental delays, kidney failure, dialysis, kidney transplants, each at the age of 8!, and therapy for the side effects of medical trauma. On top of writing her blog Kidneys and Eyes, Julia, who lives in Georgia, created a community for parent bloggers of children with a variety of special needs. She also speaks to medical students; supports families of children who are newly diagnosed with her children's disorders; shares her story with media; lobbies politicians; and sits on numerous boards.

Christina is a Chicago mom who founded Hopeful Parents in 2009. Her take-away tip this morning was about parent self-care, about how we can only support our kids if we sustain ourselves. One of Christina's sons has a serious mental illness. In addition to creating a forum for parents of children with a variety of special needs to share their stories, Christina works to remove the stigma of mental illness and raise awareness of the needs of children like her son. During a public school strike in Chicago last year, Christina spoke to the media about the impact of the loss of a structured daily routine on her son: a devastating month of hospitalization.

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At BlogHer in Chicago

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