I want to talk about kindergarten.
Esmé is 5 1/2. This means that in September my little girl will be at the age where she should be starting kindergarten. I imagine that for most parents this is a terrifying and exciting thing. It can be hard to accept that our little kids have grown up enough to be school age. This is a thrilling thing–to see the tiny humans we have carefully nurtured marching toward their independence, moving in the direction of the wonderful things we see in their future–both immediate and distant.
For me this milestone is different, as they all seem to be, because of Esmé’s disabilities. My daughter cannot go to kindergarten like the rest of her peers. Come September she will not be waiting for a bus at the end of our driveway, fidgeting in her stiff new outfit and backpack. She will not go to school everyday and come home to regale me with stories about who she played with and what the teacher taught her–at least not stories I will understand. She will not bake and carefully decorate cupcakes for her classmates with me to celebrate her birthday in January.
These are the things I imagined doing with my kindergartener. But Esmé’s developmental disabilities and medical fragility mean that my image of what it is to be the mother of a kindergartener has had to change.
And that’s ok.
I keep saying it over and over to myself: It’s ok
Because it has to be ok.
I’m not naïve. I understood that sifting my vision of what this milestone means for my daughter would be hard. I understood that like most everything else with parenting a child who has special needs and developmental delays, the path toward an appropriate plan for Esmé would be complicated. I expected that finding an actual classroom placement for Ez–given her unusual mixture of skills and delays and medical needs–would be a serious challenge.
I expected an uphill struggle by virtue of her complexity.
I did not expect that the very basis of her rights to a safe and enriching education would be systematically called into question. But, you know what? This is how it has been. Seemingly at every turn there have been roadblocks made up of references to rules that appear to not be written down anywhere, discouragement about informing myself about the range of possibilities available to us, and a general sense that my daughter’s challenges and my advocacy are a bother rather than an opportunity.
I have spent countless hours dealing with the challenges of this process, with the support of Esmé’s amazing therapy team. To put this in perspective: I have a doctorate in communication and rhetoric, a healthy ability to question authority, a deep love of learning, a fantastic working relationship with all of Esmé’s team, great knowledge of Esmé’s medical and educational needs, an ability to read and grasp legal language, a love for creative solutions, and no 9-5 job. Finding a placement for Ez should have been my jam. And yet there have been multiple times in the last few months where I have been brought to literal tears over the nonsensical, obscure, and option-poor process of placing my delightful and, yes, complex, five year old in a school that can meet her needs.
And it has been completely exhausting.
Let’s talk about some of the things that have been weighing on my mind since I began looking carefully at the options for Ez. For example, the adorable neighborhood school with the only in-district special ed classroom that was given as an option for Esmé? It is in a bright classroom with a lovely teacher and an involved principal. Esmé would be the only student with her degree of multiple disabilities and medical fragility. So, that’s a challenge to be sure, but one that can be worked on with a willing team. A bigger challenge? The school isn’t wheelchair accessible. Her classroom would be accessible through a side entrance (cue Minnie Driver’s “Trash or Person” speech on Speechless), but movement inside the split-level school would require her being carried up and down stairs. Ditto her chair or walker.
The main out of district option we were given has no possible individualization for a five-year-old complex child who is unlikely to manage a full day five days a week. This seems to stem primarily from state legislation created for reasons of efficiency…frankly, my child does not care for efficiency, as tends to be the case when your main concerns are breathing safely, learning to move independently, and clapping. This program offers several exciting options that come from having a larger population of individuals with special needs in one place, but the trade-off is that it does not offer typical peer modeling–something that seems so important for a child like Esmé–as well as for her typical peers!
I visited another classroom in a beautiful accessible school…where, despite the long drive to get there, I could imagine sending Esmé. It was a place where she’d have the comfort of a self-contained room as well as in the opportunity to interact with peers in the general education population. I was teary as I walked in–impressed by their focus on security at the main entrance and the bright fun colors everywhere. But while visiting this classroom for 5-8 year old children I was told by a special education teacher: “None of my students of course, will grow up to work at all. Well maybe one. But you know, piece work.” Sure, great, just what my kid needs, a kindergarten teacher who already knows all the ways Esmé will fall short in life–while I’m talking to her about Helen Keller and Stephen Hawking…I’m leaving now…thanks, but absolutely, no thanks.
Then last week I heard about another classroom in a neighboring district that sounded like it had some potential. I figured I’d make some calls just to figure out some of the basic information–things that, frankly, if you have a kid in the general education population you can find out online–so that I could see if we could consider the classroom or even just learn about what to advocate for in our own district. Also, in New York you can switch districts with the payment of tuition…so I wanted to see if that was a possibility. I was told that I could not visit the classroom, and they would not even discuss the class with me unless my daughter was a registered student in the district. I was so startled and vulnerable that I cried on the phone as I still tried to uncover any information I could, all while wondering if a prospective students mother would be dissuaded in this way if her child were a general education student.
Would a parent of a typically-developing child consider a school that was not physically accessible to their child? A program that couldn’t accommodate that child’s day-to-day needs? A teacher who already decided that child’s future? A school district that was so disinterested in their child that they refused to even speak about their school?
These are the options.
I suppose that in many ways my feelings about this are exacerbated by the visit to Hole in the Wall Gang Camp two weeks ago as well as by our wonderful relationship with the small independent school that Esmé visits for short periods of time most weeks. Having experienced what it means to have doors opened to Esmé in ways that I have been unable to imagine since realizing the extent of her challenges has reinforced my feelings about what my daughter can have access to–what she deserves to have access to. Like all children, Esmé deserves to have an education experience that views her in terms of possibility, in terms of what she adds to a community, in terms of excitement.
Now I do want to be clear, it isn’t that options that exist aren’t wonderful options for many children–I saw lots of happy children in each of those settings. But there are clear holes in what the existing programming can offer. And there is one giant hole that my daughter is falling through: namely the hole where we should find programming for children with multiple complex challenges in need of individualized solutions and access to typically-developing peer models. In a district as large as ours, bordering as many large districts as we do, it is an incredible shame that such an option does not exist.
Let’s be real here I have an issue with perfectionism, like in general, but especially much when it comes to Esmé. I get that my standards for the environment she is in are incredibly high. Frankly, they have to be. This is how Esmé has stayed safe and thrived despite so many odds against her. This is how we’ve avoided hospital medication errors. This is how we’ve found about life-threatening medical issues that were shrugged off by our first round of doctors. This is how she is the kid that keeps doing things that should be “impossible.”
And it is probably also clear that I am pretty impatient with uncreative solutions…Nothing gets me thinking like answers like “we don’t do it that way,” “it isn’t done,” “it’s impossible,” or, you know, “no” without any logical explanation.
These are (some of the) limitations of my personality…but they are also assets to my ability to advocate for outside of the box solutions for my daughter. As Esmé’s doctor said when I asked her to write a letter to the school district, “Should I just put in there that they should give you whatever you ask for? Because you know what Esmé needs and you’re going to talk them into it anyway. It is just a matter of time…” And, for next year, we have found a path forward that allows Esmé to maintain access to the team of therapists that has been having great success with her over the last few years, while trying short (but extendable) periods of time in a classroom that is lovely and bright, but was designed around kids with different needs than Esmé’s.
It is a start. I am trying to be hopeful and excited about it.
And, also? The cranks are turning on how, as Esmé gets older and needs more independence, how we can work with the district, other parents, and the state to find a way to fill this programming hole–because I know that Esmé is not the only child in the area or in our district who is falling through it.
And all of those kids deserve solutions that work for them.