Caring for a Child With a Rare Disease: Conventional Versus Specialized Education

Sending my child to a specialized school for special needs has been a deeply emotional journey, marked by feelings ranging from hope to heartache.

This decision, often fraught with complexities, sums up a parent's desire to provide their child with the best possible school environment. However, as I walk this road myself, the emotions that come alongside are nerve-wracking.

I knew I would have to fight for my son with a rare disease

Since the day I found out about my son's unique needs, I knew I would always have to fight for his educational needs in the conventional school district. My opinion was the school needed to meet his needs. No matter what.

8 years later, I finally realized that's not how the school system works. In my experience, in-district school systems are only meant to serve conventional students, not rare or ultra-rare students.

Our lives were upended overnight

My son was thriving and happy until our lives changed overnight. He went from being my happy little boy to a child who was irritable, throwing up all day, and extremely uncomfortable in his own body. He missed over 30 days of school in a 2-and-a-half-month period.

Even though he was sick, he was not contagious. The school thought otherwise. They didn't seem to care about the "rare" aspect. If he was getting sick, he was going home.

Eventually, for his own well-being, I pulled him from school. I would never let him experience something like this again. He didn't deserve to be around people who failed to recognize the "rare."

Taking matters into my own hands

Now was the time to fight for him more than ever before. I homeschooled and focused on the important things — simple tasks like communicating in his own way, flipping through books, making his drinks, and other things that didn't overwhelm him but were enough to keep him moving forward.

Throughout this time, I often feared the unknown: Will I win this fight? How long will this sick phase last? What school will he get accepted into? Will this school be any better? Will he get the attention he needs? Most importantly, will he feel safe?

One of the biggest struggles I face daily outside of education is knowing how my son feels. He is non-verbal, and all I want in this life is for him to feel safe, secure, and loved.

I will always wonder if I am making the right choice

As I continued down this road, I expected a maze of options, but in reality, there were very few to choose from. Either schools could not meet his needs through support, or they were full, with no openings in sight. This was extremely stressful, often causing me self-doubt about choosing this route for my son's education.

I will always wonder if I am making the right choice for my son. Is taking him out of a school where he could be exposed to all different types of children the right choice? Or should I just load up on outpatient therapies? The truth is, I'll never know.

Societal pressures and misconceptions about special education deter parents from making these difficult decisions, but the reality is these choices need to be made. I've accepted that I will always wonder if he could have succeeded in a mainstream environment.

Choosing a school for my son

We made our decision a week before summer began, choosing a school I believe will change my son's life. The one downside is the school is an hour away, which means a very long bus ride. However, after meeting our new educational team I immediately felt a ton of weight lifted off my shoulders.

Our new school has tailored programs that meet my son's needs, experienced and loving staff, and a customizable learning environment that can meet him where he is at all times.

Why I am optimistic

Though I continue to be anxious about not only my son but also myself adapting to new routines, new faces, and new challenges, I remain optimistic that, as a family, we will come out stronger.

My son will now receive maximum therapy during the school day, eliminating some outpatient therapies, which will allow us to spend more quality time together. I am optimistic that this will lead to a happier and more positive home. New beginnings are sometimes the greatest gift.