Last summer, my eldest child, who was 5 and a half at the time, participated in a program known as “Extended School Year” (ESY) in New Jersey. This initiative supports children like my son, who has type 1 diabetes along with autism, ADHD, and various learning challenges. The goal of ESY isn’t to teach new material; rather, it helps children maintain their skills and provides necessary therapy services during the long summer break. For many families, including ours, this program serves as a crucial support system, especially for those who thrive on routine.
However, when we attended the annual IEP meeting to discuss his goals for the upcoming year, we learned that he wouldn’t qualify for ESY this summer. Our school district had adjusted the program, and since my son had surpassed his previous year’s goals, the team believed attending ESY would not be beneficial. Instead, they suggested he join a regular camp with neurotypical kids or possibly a specialized diabetes camp.
This should be celebrated, right? We’re supposed to aspire for our children to be “typical.” Yet, I found myself feeling conflicted. Alongside not needing ESY, it was also decided that he would be mainstreamed more next year. In educational terms, his time in a general classroom would increase from “less than 40%” to “40-70%.” While he’ll still participate in his Language or Learning Disabled (LLD) class for reading and writing, he’ll join a first-grade class for math and science. This progress is commendable, so why didn’t I feel elated?
I have no misconceptions about my son’s capabilities; he likely has a higher IQ than I do, and his unique perspective on the world is truly awe-inspiring. Academically, I’m confident he will excel as he enters first grade. But socially? Without ESY, how can I ensure he gets the social engagement and structured routine he needs while also allowing for a fun summer with family? What will it be like for him as he integrates more into the mainstream classroom?
Living in this grey area is challenging. Anxiety and uncertainty are constant companions in our lives. My son’s various special needs intertwine to shape who he is, and every decision we make must account for his diverse levels of functioning. When deciding whether to prioritize his diabetes or autism, the answer often hinges on the situation. Knowing when to encourage him and when to ease off is a delicate balance; he is highly intelligent and often perceived as “high functioning,” but that doesn’t always reflect his reality. The gap between him and his neurotypical peers is stark.
We often receive well-meaning but misguided comments from others. For example, people might say, “Oh, he needs to go to the nurse for all his diabetes care? He can’t manage any on his own?” The implication is that we’re not pushing him enough. In truth, we do our best to lighten his load while he’s young. At this stage, it’s about protecting him from the burdens of his conditions.
Then there are those who question his autism because he interacts well. They might say, “He seems fine; maybe he’ll grow out of it!” But what they don’t see are the moments when he struggles or has meltdowns. Yes, he can sometimes mask his behaviors, but that doesn’t mean he’s no longer autistic.
What worries me most is the thought of him becoming a target for bullying. Will he recognize when someone is being unkind, especially if it’s from a “friend”? As a parent, I want to shield him from the harsh realities of the world, including the ignorance of others. Just last year, while waiting for a kindergarten event, I overheard someone refer to a class of children as the “retard class.” It’s 2023, and we still face such outdated language. If adults are saying these things, we must prepare for the inevitable hurtful comments he will encounter.
Despite these challenges, I am immensely proud of my son’s achievements over the past school year. This summer, we’re enjoying more time together, with relaxed mornings and engaging in daily reading and outdoor activities. We aim to equip him for interactions with neurotypical peers while ensuring he feels supported and safe. While navigating this grey area of parenting is not easy, it’s where we find ourselves, and even amidst uncertainty, our life is filled with joy.
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Summary:
This article explores the emotional complexities of parenting a child on the autism spectrum, highlighting the challenges of transitioning between specialized and mainstream education. It addresses parental concerns about social interactions, the impact of neurodiversity, and the importance of creating supportive environments for children with special needs.
Keyphrase: Parenting a child on the autism spectrum
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