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Retreat

Here's what I think happened:

When things fell apart with school last year, it was a bigger shock than I anticipated. I thought I had been holding the outcome loosely. "We're just going to see what happens," I told people when they asked how it was going. At every step forward, I cautioned, "It isn't over till it's over." But then when it was over, the result felt like a confirmation of what I had feared all along: that there is no place for Collin. No place for us.

And without realizing what I was doing, I retreated.

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Attack doesn't make me retreat. That's when I stand my ground or make plans to advance and overcome. It's disappointment that makes me want to circle the wagons, and I was deeply disappointed. So, I pulled back. My writing on the blog became less personal and less frequent. I stopped talking about homeschool in particular and sometimes felt reluctant to talk about Collin at all.

When I first realized what had happened, I felt ashamed. To retreat is to admit defeat. I'm supposed to be Collin's warrior mama, never taking no for an answer. But as I journaled one day, I noticed that if you take the word 'retreat' from verb to noun, its tone changes. To retreat is to give up, but to take a retreat, to go on a retreat, is to withdraw with the purpose of coming back better.

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Collin has outgrown a lot of the shows he watched as a little kid, but he is a long-time devotee of Yo Gabba Gabba. In one of his favorite episodes, Muno and Brobee build themselves a clubhouse. When their friends, Foofa and Toodee, come to play, Muno and Brobee won't let the girls come inside. They claim there is a secret password, but they won't share it.

Toodee and Foofa are surprised and hurt to be shut out when they thought they would be invited in. They get angry and want to make their friends do the right thing, but ultimately realize there's nothing they can do about it. So what do they do? They leave. They go somewhere else and build their own club house to their own liking. While they're learning this hard lesson, they sing "Do Our Own Thing," which I admit chokes me up from time to time:

We'll do our own thing, we'll have our own fun.

We'll do our own thing, we'll laugh, play, and run

We'll do our own thing, that's what we can do

When you want to play, but you get left out

When you want to go along, but get left behind

When you want to fit in, but there's no more room,

It's better not to let it get you down, and that's when we'll

Do our own thing.

A lot of Yo Gabba Gabba lessons are a little on the preachy side for my taste, trying to convince kids to act the right way through guilt or self-interest, but I love this one because it offers practical advice for what to do when you can't control a situation. When you can't make someone do the right thing. Which is always.

And now I realize that that's what we did. When the door was closed, we decided not to bang on it. We left. Yes, I was sad and didn't want to talk about it for a while. But we didn't spend much time sitting still. We were busy building our own place, finding our own people, doing our own thing.

Accessible Parking Part 2: For the Insiders

We've already talked about the who and when of accessible parking. Now let's talk about some guidelines for those of us who DO have legal access to those parking spots.

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Let me start off by saying: none of what we're getting ready to discuss is law. If you disregard these guidelines, chances are very slim that you will be penalized for it. But here's the thing: someone else may face consequences if you do. Unfortunately, in my experience, far more accessible parking issues arise from those parking legally but thoughtlessly than from those parking without a permit.

First, permits are for people, not vehicles. That means you need to be with the person for whom the permit is intended in order to use accessible parking spots. No using your grandma's placard to park up close. No accessible parking for me when Collin is at home.

Next, mind the lines. A distinguishing characteristic of accessible parking isn't just how close it is to the front of the lot -- it usually also provides extra room for exiting and entering the vehicle. This space is marked by a section of diagonal lines between parking spaces. This is not free space. It is reserved space. That means it's not for parking in.

This may not always be convenient. Maybe the person who needs extra room to exit the vehicle is on the passenger side of the car but the diagonal lines are on the driver's side of the parking space. That does not mean you can park halfway in the space to leave room on the other side of the car. It means you need to back into that space. 

The other bit of information not all accessible parkers understand (I certainly didn't before it pertained to me) is that not all accessible parking spots are created equal. Some are specifically "van accessible." What does this mean? Why is there no picture? How are we supposed to know what to do with this information? I shudder to think how many times I parked in the van accessible spot when we were still chauffeuring Collin in a sedan or non-adapted minivan.

Van accessible spots have a significantly wider reserved area next to the parking space because they are intended for adapted vehicles, which usually require deploying a ramp in order for one of the passengers to exit the vehicle. I want to make sure we all catch that: without a van accessible parking spot and an unobstructed area beside it, people riding in a ramp van CANNOT GET IN OR OUT OF THEIR VEHICLE.

So the final tip for insiders is this: leave the van accessible spots open if you don't need them. If ANY other accessible parking spots are available, use those instead.

There are always exceptions, I know. Some people have circumstances I can't account for and need to use accessible parking differently from most. (At least, that's what I tell myself when Collin gets parked out of our van.) But for the vast majority of us permit-holders, a small amount of thoughtfulness can make a huge difference in whether and how others can access a place we evidently think is worth visiting, since we're there too.

Accessible Parking, Part 1: A Primer

"Annie, come on!" My niece tugged on my hand. We were headed to the car from preschool pickup but I had stopped and was staring at a long row of handicap accessible parking, halfway full of minivans with no permits. Able-bodied adults loaded and unloaded their able-bodied little ones. A knot formed in my throat and then twisted as confusion gave way to the realization that these precious spots were being used for convenience.

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But then I remembered: before accessible parking became so important to my family, I didn't know much about it. I used to feel a twinge of annoyance to see open spots up front while I had to walk (on my strong, healthy legs) from the outer reaches of a crowded lot. It's human nature to look at things from our own point of view, so maybe it makes sense that many people don't understand accessible parking. If that's the case for you or someone you know, here's what I hope is a helpful introduction.

Accessible parking (usually called "handicapped" parking, but we're using the word "accessible" here because it's more respectful and accurate) is reserved for individuals who have any kind of physical disability that warrants getting a legal accessible parking permit in the form of a placard or license plate. Both the permit and the parking spots are marked with the familiar blue backdrop behind a drawing of a person using a wheelchair. This area of parking is located closest to the entrance because the people using it need to park closer.

SIDE NOTE: A physical disability can include anything from using a wheelchair to having a metabolic disorder that can't be "seen" but that severely limits energy levels. It is up to an individual and her doctor to determine whether accessible parking is necessary and it's not for the rest of us to judge. Yes, some people borrow their grandmother's placard so they can park close illegally, but that's rare and there's no way to know anyway. Just assume that if someone has an accessible parking permit, a lot of time, effort, and likely heartache have gone into getting it. 

Because accessible parking spots are reserved for individuals with official permits, no one else can park there. Ever. Even if the business is closed. Even if there are ten open accessible spots. Even if you'll just be a minute. Even if you have to shepherd 17 kids inside. Why?

Mainly because it's illegal. Would you park by a hydrant because there is no fire truck needing access to it right now? Of course not. You know there's a reason that space needs to be left open. And you know that if you park there, you're parking illegally and may get a ticket.

Beyond legality, it's disrespectful to park in an accessible spot you don't need because it assumes that it's not needed by someone else. But you can't know who might be on the way right now. A field trip for kids with disabilities. An outing of elderly people. A support group for people recovering from serious injuries. You just don't know.

Parking in an accessible spot without a permit sends the message that those spots are not a big deal. But they are. They are a very big deal. For some people, accessible parking is a gateway to accessing their community. It makes it possible to go to the store themselves, to visit their grandchild's classroom, to do something that is normal and easy to many others. 

We are all prone to believe that things we don't see as a big deal aren't a big deal at all. But to many living life with disability, accessible parking is a sign and symbol of welcome. It says there is a place for you here. By reserving a few parking spots, we extend that same welcome. We make space in the world and in our own lives for the needs of others.

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.