Always Something There to Remind Me

There is a kid at Moe's former school who looks just like Moe. He is maybe a year or two older and has the same curly hair and fair complexion, though I never saw his face. This boy was not in a special education class but I would often see him as school let out for the afternoon. As I waited for Moe, this boy would walk by and for a brief moment I'd think "why is Moe over there by himself?" Sometimes I'd allow the fantasy to go a little bit further, imagining that this was Moe, walking nicely by himself, looking for me. I imagined that the last five years had been a dream, that I would wake up and that this child would be my own, just as beautiful, just as sweet, but just another typical kid in the crowd.

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There are a couple of families in the neighborhood with developmentally disabled kids. The girl, who is maybe twelve or thirteen, often has vocal tics or stims, possibly Tourette's. She yelps and shrieks as she walks by (not an unfamiliar sound, though different from Moe's). The boy, who is probably around 18, usually holds a child's toy when he walks. I think it might be a radio. I don't know them, have never exchanged more than a passing nod, as they walk around the neighborhood. They all seem happy enough, or at least content, but I can't help but notice how old the parents look. They look so very tired, like they haven't slept in years. They look like my future. I wonder, when we stroll by, if they look at me and see their past.

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Earlier this summer, I was invited to the graduation ceremony for Moe's playgroup. Moe hasn't done much with that group since he was two, though I'm still friends with several of the women. The ceremony was a way to celebrate the kids moving on to kindergarten, graduating from babyhood into their school years. The invitation tore me to shreds. I knew we couldn't go. Moe wouldn't sit still for a ceremony. He wouldn't understand why we were there, wouldn't behave appropriately. And I didn't want to see him there, surrounded by typical kids, the only one not full of words and readiness to take on this new chapter. These children were all babies together; Moe used to be just like them. But didn't he deserve to go? Didn't he make it through five years just like the rest of them? On his own path, different in so many ways, but here nonetheless. Didn't I deserve, maybe more than anybody, to say "I survived. Am surviving?"

We didn't go.

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Today is the first day of school in this area. My Facebook feed is full of first day of kindergarten pictures. Friends with kids I've known since they were babies, since Moe was a baby. I didn't expect heartbreak today, didn't prepare for the crushing emotion. Today, I am having a hard time breathing, having trouble finding solace in the small crumbs of progress Moe throws me occasionally. I don't begrudge anyone these pictures. I posted my own "first day" picture as Jelly returned to preschool. And I will take a photo of Moe next week, when he starts his new school. I am hopeful about this year, anxious to get started. But it isn't the same. We are different. He is different. And there is always something there to remind me.

Endings and Beginnings

I had about an hour and a half of time to myself today. With both kids in school two mornings a week, I haven't quite figured out how to plan my free time. I have a to-do list, of course, but for various reasons, can't get them done. The place where I get my hair cut doesn't open early enough for me to fit in a visit before I pick up Jelly. The oral surgeon (ugh) only does consultations in the afternoons. I "forgot" to bring my gym bag. You get the idea.

The number one item on my list, however, is always "write new blog post." So today I went to my favorite writing spot, a local coffee house with free WiFi, ample power outlets, and a college town feel that makes me feel like a real writer.

But I'm not actually in a college town. So when I walked in today, I found a few of the usual suspects along with many, many new moms and their babies. I sat down anyway, tried to write a little, but found myself distracted. It wasn't the noise; lord knows I can write through almost anything. I was distracted by the memories of my own first mom's group meetings four years ago, Moe asleep in his car seat, me still learning how to hold a latte in one hand a push a stroller with the other.

How can it possibly be four years ago that I was one of them? How is it that so much and so little time has passed? Four years goes by in a heartbeat, and yet in this particular four years, my world has changed completely. Part of the change was just having kids, that life-changing jump from "me" to "mommy." But in the early days, Moe was just like all of those other babies. And I was just like all of those other moms.

What is even harder to believe is that we have now had as much time with Moe since his autism diagnosis as we did before it. And every day, that divide between before and after, between me and those new moms, grows bigger. My worldview has shifted. I am deeply and fundamentally changed, both stronger and more fragile, sometimes sadder, but often more hopeful than ever before.

They say one ending starts another beginning. Moe's diagnosis put him on a new path, ending his "normal childhood" and filling his days with early intervention and special education. But it also gave us answers and started us on a path toward healing. The diagnosis put me on new path too. I am a special needs parent. I am a blogger. I am a member of a new community of parents, helping each other out one day at a time.

And I've gotten really good at juggling a latte in one hand a stroller in the other.

This post inspired by the prompt "Where did it all begin?" at Kick in the Blog. 

Queen Bee

The  phone buzzed and we flew to your side, in swarms of three and four until we completed our hive.

We flitted around you, busying ourselves with whatever work we could find.

Straightening sheets.

Talking to nurses.

Taking turns watching kids in the lobby.

"Isolate a honeybee from her sisters and she will soon die."

In a group whose constant buzzing often keeps us out too late, we had only a few words.

We're here.

We'll take care of your girls.

Goodbye.

We love you.

Goodbye.

This post was inspired by my visit to a friend who is losing her battle with cancer. During her fight, we have been wearing honeybee necklaces, and she took to calling our group "Heather's Hive."

The quote above is from the book The Queen Must Die: And Other Affairs of Bees and Men (Longgood) and was quoted in The Secret Life of Bees, by Sue Monk Kidd.

Who do I tell?

When Moe was born, I joined a mom's group. I found that being a stay at home mom was sometimes quite lonely and isolating and the group was a way to meet other families in the area and get out and have some fun with our little ones. A small group of us met for playdates every Thursday morning, but with Moe's busy schedule, I had to stop going a couple months ago.

On Sunday, one of the moms hosted a potluck breakfast at her house. I was excited to see everyone, but a little anxious about going, since it was the first time I'd be seeing the moms since "coming out" about Moe's diagnosis, via this blog. I wasn't sure who knew and who didn't, and if I needed to say anything. I certainly wasn't looking for sympathy. I felt like it would have to be mentioned, but I really just wanted a nice morning out with the family.

I shouldn't have been nervous. It was a great morning. I am fortunate that the moms in the group are all smart, educated, caring women who have always been supportive of each other. With the women I know well, we talked about the blog and about Moe a little, and then we talked about other things. With the moms I don't know as well, we talked about our newborns and babies on the way, and whatever we would always talk about. Moe did great too. I tend to forget that just because he now has a diagnosis, he isn't actually any different than he was before. He did his own thing, exploring the yard and playing with the toys. For the most part, he just seems a little younger than the other kids. And at just over 2 years old, all of the kids have their challenges and quirks. In isolation, these are just normal toddler behaviors.

This outing got me thinking. What do I tell people? Should I say anything? It is hard not to, when we're catching up, talking about things like preschools and how we're spending our days. If I don't say anything, I feel like I'm hiding something. On the other hand, not everyone needs to know. If someone asks me how Moe is adjusting to having a big sister, I should be able to simply answer the question. If I take Moe to a music or gym class, shouldn't we just be able to participate at the level that is comfortable for us? But what about someplace like the dentist, or when interviewing babysitters?

Does having the people around me know that Moe has autism make it easier or harder for me? For Moe? I tend to be an open book on this kind of thing, but I don't want Moe to have a harder time than necessary, or have him treated any differently than other kids, unless it will be helpful to him. I think it may take some time for me to figure this one out.