Last summer, my eldest son, who was 5 ½ at the time, attended a program known as “Extended School Year” (ESY) in New Jersey. This initiative is designed for children like him, who may have conditions such as type 1 diabetes, autism, ADHD, and various processing or learning challenges. The key aim of ESY is to prevent regression during the long summer break; it isn’t a traditional summer school. Instead, it focuses on reinforcing skills learned during the previous school year, while also providing essential services like speech and occupational therapy. For many families, including ours, these programs are invaluable for maintaining routine and stability.
However, when we attended the IEP meeting this year to discuss his goals for the upcoming school year, we learned that my son would not qualify for ESY. The school district had modified the criteria, and since he had surpassed expectations, his team believed that attending would do more harm than good. Instead, they recommended he participate in a typical camp with neurotypical peers, possibly a diabetes camp if feasible.
This should be a positive development, right? We’re encouraged to want our children to thrive and fit into the “typical” mold. Yet, as I processed this news, I felt an unexpected mix of emotions. Along with not needing ESY, it was also decided that my son would be mainstreamed more in the coming school year. In educational jargon, his time in special education would shift from “less than 40%” to “40-70%” of his day. He will be joining a regular first-grade class for math and science, while remaining in his Language or Learning Disabled (LLD) class for writing and reading. This is progress, and it should be a cause for celebration. Yet, I found myself grappling with unease.
I am fully aware of my son’s capabilities; in fact, he likely possesses a higher IQ than I do. His unique perspective on the world often astounds me. I tend to underestimate rather than overestimate him, so I trust that he will manage academically when first grade rolls around.
But what weighs heavily on my mind is the social aspect. Without the structure of a camp, how can I ensure he gets the social interaction he needs while still allowing for a fun family summer? And what challenges will he face as he integrates into a regular classroom setting next year?
Living in this uncertain gray area is a persistent struggle for our family. Anxiety and unpredictability are ever-present, and it can be draining. My son’s various special needs shape his identity, and every decision we make takes into account multiple aspects of his functioning. Do we prioritize his diabetes or his autism? The answer varies depending on the context, and the hardest part is determining when to encourage him and when to pull back. Although he is seen as “high functioning,” that label often fails to capture the stark differences between him and his neurotypical peers.
We receive many well-meaning questions and comments from others who don’t quite grasp the complexities of his situation. For example, when they find out he requires supervision for diabetes care, they might say, “Can’t he manage any of that on his own? My friend’s child was doing finger sticks by five!” No, he can’t do it unsupervised. Trust me, we are not holding him back; he will live with diabetes for life, so why not let the adults handle it while he’s young?
Then there’s the comment, “He interacts so well, is he really autistic?” Absolutely, but would you care to witness a meltdown? Because he can sometimes appear “normal” or display slightly “quirky” behaviors, people often assume he will outgrow these traits. Unfortunately, he will likely learn to mask his idiosyncrasies even better as he grows.
What concerns me most, however, is the possibility of bullying. My sensitive boy might not even recognize when someone is picking on him, especially if it comes from someone he considers a friend. It’s an unfortunate reality, given his unique personality. I worry about how he will cope when faced with unkindness. After all, he is wonderfully different, and we embrace his quirks—but the world can be harsh.
I am reminded of a moment at his kindergarten celebration when someone nearby referred to a special needs class as “the retard class.” Honestly? It’s 2023, and that kind of language is still in use? Thankfully, my husband didn’t catch that comment, but if parents are saying it, kids certainly will too.
Ultimately, I am deeply proud of my son’s achievements this past school year. While we enjoy a more laid-back summer, we also engage in daily academic activities and encourage him to play with neurotypical kids as often as possible. We aim to prepare him for interactions with his peers while also providing him the protection he needs. Life in this gray area may not be our forte, but despite the uncertainties, we continue to find joy in our journey.
For anyone navigating similar waters, there are great resources available. Check out The Center for Reproductive Health for valuable information, or explore how to manage your family’s fertility journey through this helpful article. And if you’re interested in learning more about home insemination options, visit this blog post.
In summary, raising a child with diverse needs means navigating a complex landscape of emotions, decisions, and social interactions. While the uncertainty of the gray areas can be challenging, our love and pride for our children make every step worthwhile.
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