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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."

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. 

Kids Like Ours.jpg

"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.

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.