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Look At Us

I get versions of this question from time to time: Someone I know just received a hard diagnosis for their kid. What should I say to them? What would YOU say to them? 

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I remember the oppressive pain of those early days vividly, viscerally even. When bright hopes of a particular future are snuffed out, it’s like being instantaneously cold and alone. It’s dark. And the golden moments of your coming life haven't yet started to stack up in the corners of that cavernous darkness. 

There's no right answer, of course, for what to say when speaking into that kind of struggle. Just speaking is the main thing, so long as you mean what you say and don't lob platitudes.

But I've been thinking more about what I would say if I could only offer one thing to that terrified, despairing me of almost ten years ago, to any parent facing the previously unthinkable. And I think it’s simply: Look at us.

Not because we’re perfect at this. Not because we don’t have struggles anymore. But because we’re here, we’re real. And any future of your own you think you’re looking at isn’t really there. You haven’t made your future yet and what you’re seeing right now is mostly sketched with shadows and fear.

But look at us, with almost ten years under our belt. There is a lot of smiling around here. Lots of hugging and laughing. We do art projects. We watch movies. We pick pumpkins.

I don’t mean to downplay the difficulties. Hard things come. But we face them, solve what can be solved, and weather it all together. We keep on moving, and most of the time it’s not a trudge.

The picture above is from a morning after a long, hard night with Collin. I remember how peaceful that day turned out. How much we enjoyed just being together, cuddling and reading books and listening to music. And I had the thought: I wish I could have seen this day in the beginning. My early days as a mother were so strangled by fear for the future that it felt impossible to enjoy the present. But look at us. Happy on the heels of tough times. I think seeing that would have helped me to feel more okay. It may have freed me to focus on the day I was in.

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.

School

Two years ago, after a wonderful experience with a private pre-K program, we started the process of trying to find a place for Collin in the public school system. 

From the beginning, we determined that the most important thing for ensuring an effective educational experience was an instructional assistant who knew Collin well enough to read his cues and respond appropriately. We made this clear from the start and again at every step in the long, long road. We met with resistance at first, but chose to wait it out with as much patience and kindness as we could muster while still sticking to our guns.

So when, 18 months into the process, an instructional assistant was approved to work with Collin at school, we were thrilled. The job opening was posted and someone who knows Collin very well, who has worked with him in both home and educational settings for years, applied for the job and got called in for an interview.

Did this person get hired? No, she did not. Someone "better qualified" was chosen.

Could anyone in any position of authority explain to me how the chosen candidate was better qualified for the position? No, they could not. The only information I got was that the other candidate has more experience in the school system.

And at any point in the process did someone contact us to say, "We know that you feel very strongly about this, but we think another option might be better"? No, they did not. The school chose someone with no knowledge of Collin and didn't even tell us about it. I found out through another avenue.

We were being asked to trust a panel of people whom we didn't know and who didn't know Collin in their decision to choose a person with no experience with Collin to be his primary caregiver and facilitator at school. And our first opportunity to meet the assistant would be two days before school starts. No one we spoke with could/would answer any of our questions about the process, the decision, or the candidate and dismissed every concern with an "I understand your frustration."

So, after two years of meetings and phone calls and paperwork and hoping and hoping and hoping, we withdrew Collin from school.

Parents in our situation, who have children with a wide range of disabilities and no verbal communication, approach school in all different ways and I deeply respect those decisions. This was just the approach we chose and I still believe it was and is the best for us.

So, today I am returning Collin's school uniforms to the store. My heart wrenches thinking of his cousins and friends starting school without him and I'm avoiding back-to-school advertisements. After a few more days of being sad, I will regroup and start to think about what's next -- how to continue to give Collin what he needs in a way that's best for him.

Kids Like Ours

On Valentine's Day, I had a chat about school with the nurse practitioner at Collin's neurologist appointment. She was voicing concerns about the risk of sickness in a typical classroom. 

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"With kids like ours," she said, "the most important thing is quality of life. We want them to have the healthiest, happiest life possible."

At an earlier point in my grieving and healing process, I would have been hurt and taken strong issue with her comments. Aside from lumping together all kids with complex medical and developmental challenges, the statement seems to assume that things important to typically developing kids aren't important for kids with disabilities.

But I know this woman, I know her heart on the issue, and I'm further along in my journey now. So when she said those words and the pain scraped at my heart, it wasn't from offense.

Instead, I saw the faces of my nieces, of my friends' children, and I wondered whether a doctor had ever said words like these over those kids. Had experts ever encouraged their parents to focus on what's most important? Did those families feel empowered to let go of the nice-to-haves when push comes to shove and hold onto the precious no matter what? 

It was the first time I remember wishing that something said about Collin could be said for all kids. I wished that we could all look at each other and say, "With kids like ours, the most important thing is quality of life." And then help each other sort out what that means.