With Sanfilippo, it’s a foreign feeling when things go right

“Are you ready?” I asked my husband as we stood on the steps outside of a massive, intimidating building.

“As ready as I can be, I guess,” he replied.

We nodded at each other and walked to the front door. It was time to attend the first high school Admission, Review, and Dismissal (ARD) meeting for our son, Will.

As I’ve written before, it’s been a season of change and challenge for our family. We’ve moved into a new house, faced down a hurricane, and taken a cross-country trip. But for Will, 14, who has Sanfilippo syndrome, each change takes a toll.

The latest change was a big one. Moving to high school meant not only a new building, but also new schedules, new buses, new start and end times, and new people. We were very worried about how these changes would affect our routine-based son. We were still recovering from the feeding difficulties and caregiver burnout that had happened following the last routine shake-up during our summer vacation.

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We were ushered into a room with Will’s new team: his teacher, physical therapist, occupational therapist, deaf and hard-of-hearing specialist, speech therapist, diagnostician, dance elective teacher, and music therapist. Of these, only his music therapist had followed him from middle school. Everyone else was new and only knew Will in this stage of Sanfilippo.

My husband and I were nervous. We had known our old team for years and had built a strong unit of support for Will based on a shared history. They had been with us through so many milestone moments, both high and low. Further, we were still dealing with our own emotions and uncertainty about Will starting high school. How would today go? Would we be able to set up the foundation needed for Will’s success?

A welcome relief

Thankfully, our worries were assuaged quickly. As we worked through Will’s Individualized Education Program and discussed his plan for the year, his new team demonstrated care and understanding of his needs, as well as their willingness to make sure that he receives the support necessary to do his personal best. They had been getting to know Will and were ready to really focus on his goals.

After months of difficulty, it almost felt foreign to have something feel easy in regards to Will’s care. The meeting went very smoothly and we felt that Will was in excellent hands, especially with his amazing teacher. Such a welcome relief after all of our recent stressors!

Walking out of the school felt very different from walking in. The building no longer seemed as large and intimidating as before and we both felt lighter overall. Even though his school has nearly 4,000 students (OK, it’s still a little intimidating), our ARD meeting with the new team made us feel that Will is being seen fully as one of those students and that he’s included and important.

Again, it feels so odd to have something go right for once, but we are working on embracing it and hoping we can experience this feeling more often!

Note: Sanfilippo News is strictly a news and information website about the syndrome. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sanfilippo News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Sanfilippo syndrome.