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Preventing Suffering

One question I've gotten surprisingly often over the years is: "Did you know about Collin's disorder before he was born?" Most of the time, the person wants to know, Did you have a chance to prepare yourself? But sometimes I can tell they're actually asking, Did you have a chance to avoid this?

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Three weeks ago, CBS News released a story about Iceland's extraordinarily low rates of babies born with Down syndrome, owing to a combination of prenatal screening and "heavy-handed genetic counseling." Approximately 85% of pregnant women in Iceland elect to have the screening and approximately 100% of the women who receive a positive test for Down syndrome choose to terminate their pregnancies.

This is not a post about abortion, so let's all take a deep breath. It's not even a post about the fact that in order for Down syndrome to disappear, people with Down syndrome have to disappear.

This is a post about suffering.

In the CBS piece, the reporter interviewed Helga Sol Olafsdottir at the hospital where over 70% of births occur in Iceland. She counsels women who receive news of a chromosomal abnormality on whether to "continue or end their pregnancies".

Olafsdottir tells them: "This is your life -- you have the right to choose how your life will look like." Her explanation of what happens when the woman chooses to terminate her pregnancy?  "We ended a possible life that may have had a huge complication... preventing suffering for the child and for the family."

We're preventing suffering. If only.

Of all of the troubling aspects of this story, the one that struck me most deeply was the idea that one grossly oversimplified piece of information -- a chromosomal 'abnormality' -- can be a key to avoiding suffering. The idea that avoiding suffering is the goal as a parent. The idea that, regardless of whether you have the right to "choose how your life will look," you have the ability to make your life look a certain way.

The suggestion that a child with 'normal' genetic makeup won't bring you suffering is an illusion at best. Make no mistake: when you choose to have a child, you choose suffering. You can't know what shape that suffering will take and there is plenty of pastel hullaballoo to distract you from the fact in the early days; but it will come.

Maybe there will be terrifying food allergies. Maybe there will be uncontrollable behavior issues. Your child's "huge complication" might be cancer or terrible life choices. 

So why the desperation to avoid this particular "complication", this brand of suffering? Because, as Olafsdottir's statement implies, in our society there is no suffering as undesirable as disability. We can easily speculate on reasons for this: disproportionately low representation of individuals with disability in the media, segregation in schools, lack of education and experience. It all adds up to make disability a frightening unknown, both practically and socially. 

But here's the truth: there's only one thing more certain than suffering in child rearing, and that is joy. You may not know what suffering is coming, but you can count on joy. Always. And, rather than canceling joy out, in some mysterious way suffering actually seems to strengthen it.

This discussion, of course, doesn't touch on the suffering that can supposedly be prevented for the child or the suggestion that it is better to be dead than to live with disability. If you're interested in some thoughts on the subject from the kids' point of view, Collin and his cousins shared this.

The ultrasound above is the first glance I got of Collin's face. Looking at it, I had no idea the suffering that lay ahead of me. I also didn't have the slightest inkling of the joy in store. None of us do in the beginning. We can't. But we can go into parenthood with our eyes open, knowing that our very life is getting ready to become a "huge complication" and bracing ourselves for the joy will inevitably surprise and overwhelm us again and again.

Three Wishes

I've started to make some plans for homeschool this year and even to get excited about the possibilities. I know Collin is going to be just fine and learn a lot. But today is still a hard day. It's the first day of school for our district, so the disappointing outcome of our two years of hard work is feeling more concrete.

I try not to waste much time wishing things were different. Not only is it pointless, but it also typically doesn't mesh with the fact that I fully accept Collin just as he is. But today it feels okay to be wishful. And I can't help but wish today was Collin's first day of school. I wish I was dressing him in his uniform and packing up his backpack and feeling nervous about how the other kids would react to him. 

I wish public school was for everyone, not just those who fit easily into the system. That the system was geared more toward students than policies. Why can't the process of finding a place in that system be more of a partnership and less of a standoff? In which the approach is Let's come together to make school work for this kid instead of Here's what we're required to do, do you want it or not? Who loses out when we listen to the needs of the kid, even when -- or maybe especially when -- his parents have to speak for him?

Ultimately, I wish there weren't so many battles -- not just in the world of education, but in the world at large. So much of Collin's everyday life seems to require making a way: the countless public places that aren't wheelchair accessible, the medical equipment that languishes in an endless paperwork trail for months, the insurance companies that deny medications or supplies they've been covering for years. "It's always something," parents of kids with disabilities say to each other, and it's not just a saying. But it becomes your normal, so you stop noticing quite as much until a bigger roadblock comes along and then you find yourself asking: Why does it have to be a fight for my kid to get from here to there? To get what he needs? To go to school?

Wishing is pointless in that it changes nothing about the situation. But being open about what's hard and unfair benefits everyone. It lets you in on our reality, and it helps me move forward. So now I'm going to look at some first day of school pictures on Facebook and then take this kid to the arcade.

Something Wonderful

For years in Collin's early life, I spent my days clenched in anxiety over what terrible thing might come next. I was constantly braced for the next hard thing. That has eased some recently, but it is still my default.

This September, we sat down at our dining room table with a couple from a local foundation and they told us that they wanted to build a large, fully accessible bathroom for Collin. That two other local businesses had approached them and asked if they could participate, too. That the three of them wanted to work together to redo our kitchen, open up walls in our living spaces, and make our house beautiful and completely accessible for Collin. 

I had been submitting grant requests for that bathroom, getting turned down. We had been trying to come up with a sustainable plan for making those adaptations bit by bit while still allowing us the time we need to care for and spend time with Collin without running ourselves into the ground.

My tears didn't start in earnest until our visitors, sensing our hesitance, asked us to please let them do this for us. They explained that no matter how gorgeous and useful this house turned out, the benefit to us would be nothing compared to the benefit to those lucky enough to work on the project and get to know us.

As they prepared to leave, I couldn't find words for my feelings. "I'm in shock," I admitted to the man. "I'm having trouble wrapping my mind around this."

Their foundation is named in honor of their daughter, who had a rare genetic disorder. Its mission is to improve the lives of families who have children with special needs. These people get it.

"Isn't it nice," he said, "to be surprised every once in a while by something wonderful?"

Firsts

In the early days, the pain was searing when other babies sailed through their milestones while we struggled just to keep Collin healthy and make it through the days. Over time and through healing, I've come to terms with the fact that, though Collin's firsts are not the same as other kids', they are no less exciting or beautiful.

We've had lots lately. First time mowing the lawn with Daddy. First marshmallow roast. First campout. And something about celebrating these surprisingly meaningful and joyous occasions all in a row made me remember what I think of as our first first. 

Collin was not quite a year old. It was between two long hospital stays. We were still raw from the terror of Infantile Spasms and starting to accept that the new seizures were not going away. We hadn't seen a laugh yet and smiles were rare. Then it snowed. Collin had a beautiful snow suit that was buried with the other unused baby gear behind his medical supplies. I dug it out, zipped him up in it, took him down the front steps, and laid him right in the snow.

He wriggled. He flashed a couple of small grins. But what grabbed my attention was that he kept raising his eyebrows. Over and over. My scared mama heart kept analyzing it, trying to figure out if it was another new kind of seizure. But soon I realized that he was taking in this new experience. He was appraising the situation with what looked like mild amusement. 

And that's when it hit me: my baby has a personality.

It sounds obvious, but it was a revelation to me. For almost a year, I hadn't been able to distinguish symptoms from side effects from "normal" behavior. I was fully focused on caring for Collin, but had not gotten to know him. And here he was. In spite of everything, here he was -- warm, alert, funny. 

He still makes that face all of the time. On the lawn mower. At the campfire. In the tent. His eyebrows reach high and a gleam comes into his eye. I'm liking this, he says. I'm interested. I'm here.

What Am I Doing?

I'm discouraged.

After our wonderful, inclusive pre-K program last year, I slipped into thinking that a positive long-term educational experience might be possible for Collin. The teachers and administrators trusted that we knew Collin best. They listened to our input and acted on it. We all learned together as we went, asking questions and adapting as needed, thus creating a mutually beneficial learning environment. 

Some people hint that I'm being naive when I explain what I want from Collin's school experience, but I'm not; I've seen it.

However, every step since our first contact with the public education system has been a fight. Every answer is no. My calls aren't returned. Every 'authority' throws up his or her hands and claims there's nothing they can do. The advice I'm getting from other parents and experts involves filing official grievances and contacting professionals. I haven't been squeaky enough, they tell me. 

But as I read books on special education law, pen letters, and make lists of people to call, I find myself asking: What am I doing?

One part of me says: It's Collin's legal right to receive a free, appropriate public education and I dare somebody try to keep him from having it. I will not allow my son to be placed in a certain school or classroom or situation just because it's cheaper or more convenient. I will not give up on the idea that I can send him to his local school without fear for his safety. I will not let go of the image of Collin surrounded by typically developing peers with every support he needs to be integrated to his fullest potential. I will not accept reasons like "policy" or "protocol". I will not defer. I will not be put off. 

But another part of me asks: Why am I really fighting this? Just to win? Will Collin be getting anything better from the public schools than he would get from a combination of homeschool and community activities? Is this battle for Collin, or for the principle of the matter?

I don't know. And I don't know how to sort through the questions and motives that inevitably surround an issue like this one. For now, I am taking small steps in both directions. I'm flipping through curriculum books, thinking about fine motor activities, and scouting out groups of peers. I'm making calls and getting things in writing and educating myself. And - all of the time - I'm reminding myself that, either way, Collin is going to be just fine.