A few days before kindergarten was set to begin, I gathered up all the school supplies I needed to deliver during my daughter’s Back to School Night. I looked down at the list I had created earlier in the summer and mentally ticked off the items. Clorox wipes. Check. Crayola markers. Check. Pencil case. Check. Then I looked at the stack of neatly folded papers sitting on top of the supplies, and my stomach lurched. I knew that no other parent in JJ’s grade would be checking anything like this off their list.
The folded papers were letters I had created in order to introduce JJ to the other families in her mainstream classroom. My daughter would spend a good amount of time in her special education classroom, but several times each day, she would be integrated into a class of her typically developing peers. I knew that the minute she rolled into the room in her wheelchair, with her speech device clamped onto a mount in front of her, that her classmates would see how different she was. This is why I had gotten permission from the school to send a letter home with each child. I desperately wanted to get ahead of the whispered questions and curious stares.
The letter I had written explained all about JJ’s disease, as well as her disabilities and equipment. But it also described how smart, funny, and alert she is. I wanted everyone to realize that she understands the things going on around her and that inside her uncooperative little body are a sharp wit and a bright intellect.
I decided to avoid the She’s a kid just like yours spiel—mostly because this simply isn’t true. JJ is not like other kindergarteners, hence the need for a letter of introduction. Kids are smart and they notice differences, like we all do. I have found through experience that when we address these differences honestly, it can alleviate a lot of stress and fear. It’s also a good way to teach typically developing children not to make assumptions about the abilities of others. (After all, JJ can walk, communicate, and comprehend all the things her peers can).
I think so many people feel uncomfortable addressing JJ’s disabilities directly because it feels like a value judgment to them. The She’s just like all the other kids myth comes from a place of kindness. People think that pointing out my daughter’s differences is akin to pointing out her deficiencies. But “different” doesn’t have to have any kind of value attached to it. It just is.
Even though my daughter is not a typical child, she is still, of course, a fully developed and complete person. There are many ways in which JJ resembles her five-year-old peers, and it’s as important to focus on these similarities as it is to acknowledge the differences. This is why I also attached to the letter a little card explaining JJ’s personality and interests. It included fun facts (She has her own adaptive, motorized car) and a list of her likes (Kidz Bop, Matilda, and princesses).
As I stared at the stack of letters and cards, I realized why they made me feel so strange. It was because they signaled not only JJ’s differences, but also my own. My daughter is not a typical kindergartener, and I am not a typical kindergarten mother. There are so many experiences, hopes, fears, and dreams I will never share with the parents of her classmates.
Unlike many families, ours has not taken a typical route to the first day of school. Instead, we have followed a path filled with emergency surgeries, outpatient therapies, trips to faraway specialty clinics, and more medications than I can hope to remember. The first day of school is meant to be a bittersweet moment during which parents both wax nostalgic about times when their child was young and marvel at the autonomous, independent person they will one day become. This is most emphatically not the case for us.
Unfortunately, there are more bad times than good in my family’s rearview mirror. So many of JJ’s earlier years contain moments I wish I could erase from our memories, like the months she spent having screaming tantrums and biting herself or the day when we received her Rett Syndrome diagnosis. I also do not have the same hopes for my child’s future that most other parents do. JJ will never be able to live on her own and will likely never stop living at home with us. On her eighteenth birthday, we will celebrate her entrée into adulthood by asking a court for legal guardianship of her. I am not aware of anyone with her syndrome who has gotten married or had children, so these goals are probably out of reach as well.
Milestones represent and foreshadow very different things for special needs families like mine. But it’s not all doom and gloom. Instead of the usual rites of passage, we have other milestones we celebrate. For example, on the night before JJ took the first dose of a special new medication—the very first approved to treat her syndrome—the four of us dressed up, ate cupcakes, and had a party. More unusual milestones followed, like the days when the medicine helped our daughter say a few words again or roll over on her own for the first time in years.
Special needs families have our own times of private joy. During these moments we don’t commemorate the passage of time or the brightness of the future like others do. We try not to focus on whether or not that particular milestone will ever be repeated or what it could mean for the future. Instead, we celebrate the amount of work, bravery, and perseverance it took us all to get to there.
On the first day of kindergarten, JJ’s school organized a “Coffee and Kleenex” event for all the kindergarten parents. As soon as I read the title of the event, I knew I wouldn’t be attending it. This wasn’t because I didn’t appreciate the sentiment; I just knew I wouldn’t fit in. No part of me would grieve my daughter’s first day of school. Instead, I had been waiting a long time for the relief and help it would provide. School gives JJ so many things that my husband and I cannot, like constant stimulation, a sense of independence, opportunities for daily therapies, and socialization with a host of other children.
JJ loved everything about her part-time preschool, and I have no doubt that the same will be true of full-time school. Put simply, it is a place that makes her happy, keeps her safe, and helps her become her best self. It also doesn’t hurt that it provides me with a seven-hour break from caregiving in a quiet house free of helpers and therapists.
Three days after I handed JJ’s supplies and letters to her teacher at Back to School Night, I wheeled her onto the bus for her first day of kindergarten. She looked excited as I gave her one last wave and watched the para secure her wheelchair to the floor of the vehicle. As the bus drove away down the street, I thought about all the obstacles and complications that my family had overcome in order to reach this moment. Among other things, we had navigated multiple diagnoses, an emergency brain surgery, the loss and return of JJ’s sight, the installation of a feeding tube, and months of uncontrolled seizures. We might have needed tissues at many of those times, but we certainly didn’t need any now.
As the bus rounded the corner and disappeared out of sight, I imagined JJ sitting in her wheelchair, eager to begin the next chapter of her life. Then I turned back toward my now quiet house. Once I crossed the threshold, I smiled and released a sigh of relief. I felt ready to begin my next chapter as well.
What are your experiences with your child/children’s first day of school? How did it make you feel? Please let me know in the comments below.