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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.

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.

Meeting Annie

We sat about halfway back from the stage in the weird half-gym where my niece would be performing as Mother Goose in the kindergarten musical. It was hot and loud. Collin was on the end of our row of folding chairs, because that's life with a wheelchair.

She came through the door bundled up in a coat, like maybe she had chosen to skip part of her recess to see this play. She had the confidence of a "big kid". Probably at least third grade. So it must have been a younger sibling she was there to see. She spotted her parents and moved toward them. Until she saw Collin.

She stopped in her tracks when she laid eyes on him. I heard her audibly gasp. Her face lit up with a delight that I didn't understand, but recognized immediately. I smiled back at her, mostly because I couldn't help it, and she took a seat close by as the play started.

I look at Collin a lot during events. I enjoy it more when I see his reaction. And every time I looked over, she was watching him too.

Before the applause had completely faded, she climbed between the seats in front of us and was in our row. She was touching Collin before the words were all the way out of her mouth: "Hi, what's your name?" When he didn't answer, she looked up at me, not willing to wait. "What's his name?"

She rubbed his head, just like he likes. She complimented his shoes. She squeezed his hand. She laughed at his happy kicks.

"What's your name?" I asked. She looked straight at me. "Annie," she said. "My dream is to start a school for kids like Collin."

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.