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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.

Strange Gift

We just got back from a week in paradise. Just the three of us in a little house a three minute walk from my favorite beach. We ate seafood, took long walks, read books, and generally did as little as possible. It was wonderful.

It took a day or two before I noticed something strange going on.

On our walks, out at restaurants, everywhere we went, people were genuinely happy to see Collin. 

He got waves, broad smiles, peace signs. People insisted that he move to the front of the line. Employees reserved choice tables for him. People brought their dogs up for him to pet. Kyle and I got free dessert from a server and free breakfast from a stranger and we were under no illusion that those gifts had anything to do with us.

It was like walking around with a famous person. One night, a man riding by on a bike pointed at Collin in his beach wheelchair, grinned like it was the best thing that had happened to him in a long time, and waved and waved and waved as he pedaled away. I actually looked around to see if I was missing something. 

I'm still not sure what was going on. Part of it is probably that people feel more generous and open on vacation. Part of it is also that I didn't realize I had gotten so used to stares, pity smiles, and awkward avoidance, making this treatment even more impacting. But even those two things together couldn't account for what we encountered last week.

Regardless, I'm taking it as a gift. As a tangible experience of grace. I'm treasuring this gorgeous picture of inclusion and acceptance, knowing that I will pull it out on the hard days to remember what can be.

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.

First Day of School

Yesterday, I got the call confirming that Collin won't be joining the ranks of other kids in our county heading to the first day of school today.

Collin dreaming of how fun it would be to go to school with the supports to make it a safe, empowering experience.

Collin dreaming of how fun it would be to go to school with the supports to make it a safe, empowering experience.

It wasn't a surprise, but it was still hard. 

According to our contact, the "powers that be" have declared that Collin must attend school (we are requesting a mainstream classroom) on his own and be observed in order to determine whether he really needs the aide we contend is necessary. Apparently, they understand that this would be dangerous and traumatic for Collin, but it does not impact their decision.

So we will keep pushing and waiting and working. We have people rooting for us, people helping us and that means so much. And it's not any one person making this process so tortuous - it's the system. But I choose to believe that there will be a day when it doesn't take favors and lawyers and research and fighting for a kid like my son to go to school on day one with everything he needs.