Many of us have begun preparing our children and our homes for one of the biggest transitions of the year. College students are heading off to their destinations. Student athletes have started practices. A final shopping trip or two may be promised in the coming days. Perhaps there is one last vacation marked on the calendar. And amid all of this is the art of preparing our children for what comes after their jitters recede and they settle into their new routines.
I remember my own jitters going back to elementary school, although some prominent memories from that time likely have nothing to do with what was on my mom’s top of mind as she got me and my sisters off to our first days: the smells of the building after a summer away, showing off newly acquired yet poorly executed tumbling tricks in the grass at lineup, breaking in a new Trapper Keeper® from the 5&10, and the thrill of discovering whether or not I’d been assigned one of those cool newer desks with a hinged storage lid.
I remember how important it was to shop for the right clothes going back to middle school, although no matter how pleased I was with my selections, when I walked through those heavy double doors in the morning it was clear I never quite hit the mark. And my return to high school always brought with it a last-minute panic to complete my summer reading, while also struggling to remember the novels I’d tackled earlier in the summer.
More important than all of that, in the early ‘90s there was a boy named Andrew*. He was an eloper, a child who removed himself from school property—ran away—when he was feeling triggered. What I remembered him for was when he tore up my Les Misérables playbill at lineup in 4th grade. I was gutted over the playbill incident, but there was such a deeper story going on there and I am certain now looking back that he was not receiving the emotional and behavioral support he required, what current research shows he must have needed, and that my little temper tantrum over torn paper was nothing compared with what he was going through. Then one day he just disappeared, and all of us kids returned to our privileged, homogenous classrooms, the idea of Andrew fading but never really gone.
A bit older, there was Brian*. He was a few years ahead of me and one of the first people I thought of when it came time to enroll my daughter in school. Our conversations were often facilitated by his friends who helped him seek me out in the hallways during class transitions. I don’t think academics came easily to him, and I wonder whether his parents were advocating to keep him in public school. He was kind and gentle, making friends wherever he went. He never cared that I was probably too young and too uncool to talk to—he saw who I was on the inside, and I saw who he was on the inside. I hope he enjoyed high school as much as he deserved…I like to think he did.
I shouldn’t have had so few experiences from my public school days of peers with additional support needs, but that’s how it was, and I was worse off for it, though I didn’t know that at the time. New Jersey holds the title of number one most segregated state in the country for children receiving special education services, meaning that certain students are being placed in self-contained classrooms with little to no meaningful contact with general education peers; decisions biased by their diagnoses, not decisions based on need (and please note, there are children for which a separate, not segregated, space is a need).
There are 13 federally designated eligibility categories for special education services, and over the years we have seen an uptick in meaningful inclusion for students classified under certain categories, admittedly aiming for a bar set embarrassingly low in New Jersey—less than 50% of students included for more 80% or more of their school day, the only state under 50% and far below the national average of 67%. However, students most frequently segregated from typically developing peers are classified under autism and intellectual disability categories, and those needles aren’t budging.
There are many reasons for disability-based segregation and plenty of ways to explain away the responsibility of this longstanding discrimination, but one by one, families and schools are fighting back with love, compassion, and knowledge. Our principals are working. Our teachers are working. And our kids are watching and reaping the benefits of learning alongside children with needs that are different from their own.
The calendar my heart abides by is not one that turns over in January but in September. As summer draws to a close and temperatures we never thought would drop finally start to cool off, our children are layering their memories one experience at a time through lenses on the environments we have cultivated for them. And beyond a shadow of a doubt, the most nourishing environment of all is one that is diverse in body, thought, and mind.
What are some of the things parents of children with IEPs and 504s are doing to prepare for the new school year?**
“Vision statement!”
“’Who Am I’ page—it’s a one pager with some information about my daughter’s likes and dislikes, encouragement strategies, and some regularly used phrases that might not be easily understood by a new person.”
“In the days leading up to school, I take [my son] to the school playground a few times and talk about school a little.”
“I always provide a fun fact [to school staff]…I try to concentrate on the positive.”
“We spend time in OT practicing opening backpacks and lunch bags. And I put adaptive zipper pulls on everything!!”
“I send an email to the school nurse for my son’s 504 accommodation. When he was new, we met in August before school was in session, but now she knows his routine, so an email is enough at this point.”
“We do social stories! [My son] gets nervous with the change in teachers and new kids in his class, so the more info we can give him, the easier the transition.”
How can you support a family whose child has an IEP or 504?
Extend an invitation to a club/activity, party, or playdate. Never assume they cannot participate and be sure to ask whether the child needs an accommodation of any kind. (The parents will know what to ask for! Best that you don’t assume.)
Teach differences to your kids at home so that they are prepared when they encounter people who look, think, or act differently than they do. Providing safe language to a younger child or answering questions from an older child can go a long way in making a peer interaction comfortable for everyone.
If you are inviting an entire class to a party, double-check that any students spending part of the day in the general education class are included. Your child’s teacher or principal may be able to help you out there if the child has not already been added to the gen ed roster.
As tempting as it may be, do not let your child accept service hours for supporting a peer in special education. Students with disabilities are not provided service hours for welcoming general education peers into their personal spaces. We need to stop teaching our kids that non-disabled–disabled relationships are transactional.
*I grew up locally and have changed the names of these two boys in order to maintain their privacy.
**I put out a question last week on Instagram and messaged a few friends to see what everyone was doing to prepare, besides the usual.
Note: Don’t forget to tune into the Paris Paralympics, which kicks off Wednesday, August 28!
Elena Croy is an ordinary mom learning life’s lessons from her two extraordinary children. She and her husband are raising their little girl, who has Down syndrome, and their son, who was born with upper limb differences, in Ridgewood. Elena chronicles their challenges, triumphs, and goofiness at AtHerOwnPace.com. Elena is proud to serve as a grassroots Down syndrome advocate for the National Down Syndrome Society.
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