The Best Thing They Do for Their Sibling With Special Needs

When my younger son, Saul, was first diagnosed with fragile X syndrome at 1, it became clear that parenting him would be involved. I felt especially overwhelmed because he was one of three children. I had always planned on two children but having a toddler and then twins equals three. And now one of them had a new and scary diagnosis.

I was jealous of the other special needs families who could focus on the latest therapy, diet or activity for their child while I rushed from the speech therapy group in Boston to pick up the other two at their preschool in our suburb.

I felt guilty all the time and was convinced I was short-changing Saul. I was so worried that I would never notice how his best smiles were always for his older brother and twin sister or how his early intervention sessions always went better when they were around to participate. He actually loved picking them up at their typical neighborhood preschool although it caused anxiety attacks and crying bouts for me.

When Saul is upset, all the occupational therapy techniques and soothing from me don’t do nearly as much as the private “cool guy” handshake from his big brother. My daughter is an amazingly kind and loving sister to Saul and is now becoming quite the advocate for special needs. She and her kind friends chat over after school snacks and play with Saul even though they go to different schools.

They do something I could never do. They just see him as their brother, just as a kid. My children know all the words: special needs, inclusion, small classroom, big classroom and fragile X. They hear us worry about the services, the education, the opportunities Saul is receiving or missing. Those words swirl around us always.

But my other children aren’t thinking about that when Saul runs up to them. He’s their brother, the only one they have ever had. And while we do sometimes discuss how he will always need help, I feel certain that’s not what they’re thinking about. They’re simply playing with him or fighting with him or ignoring him. Teasing, taunting, bickering. Everything that regular kids, regular families and regular folks do.

The most important thing about Saul isn’t measured by diagnoses, scientific terms, percentiles or scores. He’s their brother and a 9 year-old-kid. The very best thing they do for him is showing him, and me, and the rest of the world exactly that.

Leah Sugarman the mighty.2-001

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