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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.

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.

* * * * *

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.

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.