Romper

My Daughter Only Goes To School Twice A Week, But It Means Everything To Us

Courtesy of Hillary Savoie

My daughter Esmé is 5-and-half years old, and in a matter of days she'll go to kindergarten for the first time. And to be honest, I'm feeling completely out of my depth. I mean, I'm totally on top of the school supplies on the list (OK, so I bought them all yesterday, but, it’s done). Today we dropped the supplies off in the classroom, and Esmé was able to see the room again, say hello to another student, and hang out with the teacher for a bit. So those two items are checked off my list. We've been back to school shopping, but still need to pick out a first-day outfit. And I think I'm supposed to be starting some kind of Pinterest-inspired way to make it a special first day of kindergarten, but, I’ll be honest, that’s unlikely to happen.

Over the last few weeks I’ve found myself vacillating between pretending kindergarten isn’t happening, wondering how it is possible that she's old enough to be starting kindergarten, and getting randomly teary. I’m guessing that this kind of reaction isn’t unheard of, right? There is a lot of emotions wrapped up in this particular kindergarten milestone. It's understood to be the beginning of movement toward independence, toward the many coming years of academic life, toward a world of friends. It is a big part of a child’s first steps into the wider world. It’s all happening.

Except, also? Also, it is not happening at all. I mean, at least not in the way that most of us think about kindergarten.

Courtesy of Hillary Savoie

Do you still remember your first day of kindergarten? I think I do, vaguely. I believe I waited for the school bus at the end of our country road in my best plaid skirt and itchy white blouse. I wore socks that were forever falling down and little white shoes, dusty from our dirt road. I was so proud to be getting on the bus with my older sister while sporting my awesome koala backpack. As I grabbed the bar to pull myself up the impossibly large first step onto the bus, I was terrified and excited. I’m pretty sure my mom felt the same way. In no time I was into school —like in a super nerdy way, sitting up straight and raising my hand high to answer every question, regaling my parents with stories about what I’d learned once I’d gotten home. Also I stayed busy coloring, swinging upside down on the playground, and giggling during nap time.

Esmé will be the most medically involved and developmentally delayed child in the room, by far. She will attend twice a week for an hour, accompanied by her wonderful long-time home special education teacher and her nurse of more than a year.

On my daughter’s first day of kindergarten, I will not be taking photos of her standing on the corner in her itchy first-day outfit waiting for the bus. I will not watch my daughter pull herself onto the too big step of the school bus in some sort of brave assertion of her independence. In fact, my daughter won’t even be attending on the first day. She won’t ride the bus at all. She won’t come home telling me all about how she knew every answer to every question the teacher asked her.

Courtesy of Hillary Savoie

She won’t because she can’t. Not yet. She is just too fragile medically, too complex developmentally, too delayed physically to fit into any school available to her in a traditional way.

So, starting midweek on the second week of school, in our neighborhood school’s self-contained special-education classroom with eight other students across several different grades, my daughter will swoop in for her first guest appearance, complete with an entourage. Esmé will be the most medically involved and developmentally delayed child in the room, by far. She will attend twice a week for an hour, accompanied by her wonderful long-time home special education teacher and her nurse of more than a year. During the hour she is in school, I'll sit in the car outside, maybe getting some writing done, but more likely staring blankly at Facebook and compulsively eating chocolate, ready to answer the phone and hear that Esmé has turned blue.

I was reminded how sweet I find this little neighborhood school — with a diverse population, and a funny old-school school building nestled in among the community houses. I remembered how much I like Esmé's new classroom teacher, who is thoughtful, kind, and attentive.

With time, perhaps by the end of the semester or maybe by the spring, we hope, she'll be able to slowly extend her time to three hours twice a week. By then, maybe, she'll be able to stay with only her nurse, and, maybe, I'll feel comfortable making the five-minute ride home to work while Esmé stays in school.

Courtesy of Hillary Savoie

Maybe. We will see.

Needless to say, this isn’t what I envisioned when I imagined my child going to off to kindergarten. Not at all. When your child has significant special needs — needs that prevent her from fully participating in even the classes that are designed for children with special needs — you get used to the reality that there are a lot of things that just aren’t for you and your child. But, honestly? It still hurts, confuses, and exasperates me.

At another school, an hour drive from home, the classroom teacher told me that he knew none of his students would ever hold a job of any sort. I bit my tongue, but knew then that I would never put Esmé in an environment that already saw such a future for her.

I know Esmé’s first-day photos will not look like those I’ve seen my friends post over the last few weeks. I know that the glue sticks and crayons I bought for the classroom, like all the other parents, will likely go untouched by Esmé. But I bought extra anyway, just to feel like we are participating. I know that the school itself is filled with small stairs between split-levels, and there is no lift, barring Esmé from accessing entire sections of the school without being carried. Also, I understand all too well that this school cannot keep my daughter safe without long-term detailed, hands-on instruction, but they are willing to work with us. They are willing, within reason, to adapt to a child who is very much unlike their other students. I am grateful for that.

Courtesy of Hillary Savoie

And the other options? The area school that supports the children who are multiply disabled and can provide the most accessibility and medical support cannot offer the flexible partial entry to school that Esmé needs. At another school, an hour drive from home, the classroom teacher told me that he knew none of his students would ever hold a job of any sort. I bit my tongue, but knew then that I would never put Esmé in an environment that already saw such a future for her.

I also know that the interesting independent schools and private schools some of my friends send their children to aren’t for us either, not really. Esmé has visited one such lovely school regularly, a magical place, a place that feels special enough to match her, but they are a tiny little school that cannot support her needs longer-term. The other private schools I called? They wouldn’t even talk to me.

It feels like such a simple desire, a place that meets my daughter’s needs for safety, socialization, accessibility, and academic instruction. But it isn't simple. Not for her.
Courtesy of Hillary Savoie

As I've searched for options for Esmé, I kept thinking that someone at some school would say, “Wait, your daughter cannot speak or walk or eat by mouth? And she’s super talented at playing with toys with her feet? And she reads and does addition, but cannot point to her nose? And she is medically-fragile, but you are a knowledgeable ally who will help us design a supportive and unrestrictive environment for her? OMG, she is just the student we’ve been waiting for. How wonderful! Let’s make this work for her — so she can go to school, like other kids, and be safe, challenged, and included.”

But nobody said that.

The more I think about school, the more I wonder whether I'll eventually find a place for Esmé to go to school in some sort of recognizable way. It feels like such a simple desire, a place that meets my daughter’s needs for safety, socialization, accessibility, and academic instruction. But it isn't simple. Not for her. Maybe I will have to figure out how to build that place at some point; I don’t know.

Courtesy of Hillary Savoie

But for now, when we visited the classroom where Esmé will attend, I was reminded how sweet I find this little neighborhood school — with a diverse population, and a funny old-school school building nestled in among the community houses. I remembered how much I like Esmé's new classroom teacher, who is thoughtful, kind, and attentive. In fact, she reminds me a bit of my own kindergarten teacher, who I thought was a fairy godmother. When we left, Esmé in my arms, I turned us back to look at the school and said, "Esmé, this is your new school. I think you're going to like it a lot." Esmé looked at the school and smiled, proudly.

My daughter will be attending kindergarten soon. She'll be there for one hour twice a week. It's a step forward, and, in the manner of all of her milestones, it's slow and hard earned and altogether different than I’d expected. But this is progress — and that's a really, really good thing.