When a Right is Out of Reach: My fight to secure special education support for my son

When a Right is Out of Reach: My fight to secure special education support for my son

• September 16, 2024
• 3:24 pm

Just a couple weeks ago, my sweet and affectionate 15-year-old son, Evan*, returned to school for the first time in two years. As I sit here reflecting on this milestone, I'm filled with relief, joy, and a deep ache from the battles we've fought to get here. For many parents, watching their child board the school bus is merely a part of the morning routine, but for Evan and me, it's been a journey fraught with challenges, fear, and uncertainty.

Evan, with his gentle demeanor and infectious smile, has always faced the world with courage. While it's certainly never stopped him from doing all the things kids love to do, being non-verbal and on the autism spectrum adds layers to his daily battles, and he struggles with self-injurious behavior when overwhelmed. The school bus, with its overwhelming noise and unpredictable nature caused serious anxiety for Evan-and for him, like many people on the autism spectrum, that meant intense distress to the point where the simple act of boarding felt torturous and triggered episodes of self-harm, even with a paraprofessional by his side. After witnessing the physical and emotional toll it took on him, I made the difficult decision to stop allowing him on the bus to ensure his safety and well-being.

But this decision brought even more challenges. In my search for a safer alternative, I reached out to everyone I could at Evan's school-teachers, staff, parent coordinators-pleading for a private car service with a paraprofessional, and instead of solutions, I was met with dead ends. I was forced into a frustrating journey, left to navigate the legal complexities on my own, and getting no response from the Department of Education - as DOE is responsible for school transportation needs-for over a year. Every day for 24 months, Evan was missing out on learning, being with classmates, and growing in a supportive environment-all because the Department of Education failed to fulfill their legal obligation to accommodate his disability. Each day at home was a painful reminder of a system that had failed us - a system that left Evan without access to the services he is entitled to by law.

But then, a glimmer of hope appeared when I called New York Legal Assistance Group's Special Education Unit intake number. With their help, we won a private car service to take Evan to and from school, along with a specialized behavioral support professional to keep him safe during the journey. We also won a large sum of compensatory behavioral services for Evan and comprehensive educational evaluations that will help me better understand his needs.

To be clear, this is all support to which Evan and every child with special education needs is entitled by federal law. It should not take an attorney to ensure the fulfillment of my child's rights, but until the complicated systems in place change to make that a reality, our story shows what dedicated advocacy can achieve. Without NYLAG's Special Education Unit support, Evan would still be confined within the four walls of our home, missing the social interactions and learning that are vital to his growth-and I would still be searching for a solution to get my son back to school.

Our journey is far from over, but we're finally moving in the right direction, and this fall marks a new chapter for Evan and our family. As his mom, my heart swells with hope and gratitude as we embrace this fresh start, and I know that when I see him off for his first day of school this year, he will go with the support he needs and deserves to thrive-like he always should have.

*The student'sname hasbeen changed to protect the family's privacy.

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