“Hey sweetie,” I nudged my 7-year-old son. “I want you to meet Rachel. She has a brother with Fragile X Syndrome—just like you do!”
My enthusiasm was a bit much. And yet, his eyes nearly popped out of his head. We talk about Fragile X all the time, and yet here was someone else who also had a brother with Fragile X? I could see the wheels turning.
We are a family with Fragile X, even though only one person has the full mutation. To my older son, Fragile X is the reason his 5-year-old brother acts the way he does. It’s why we often have to leave places early, even if we’re having fun. It’s why we often don’t do things together as a family, like go to concerts or sporting events. It’s why we were at Camp Ramah New England in the cold of November: for the Tikvah Family Shabbaton, a weekend away with other families who have at least one child with special needs.
Fragile X is a regular part of our vocabulary and our lives. My boys know their cousin has Fragile X too (after all, it’s a genetic mutation!) and that many of us are carriers of the pre-mutation. But meeting someone else who has a brother with Fragile X was a total surprise for my son. It’s possible he thought he was the only one who had a brother like this.
In the Fragile X world, similar to autism, we say, “If you’ve met one child with Fragile X, you’ve met one child with Fragile X.” In other words, Fragile X is a spectrum, and each person is affected in different ways and to varying degrees. So there is no one truly like my 5-year-old son with a disability. But, there are many people in situations very similar to that of my 7-year-old, and attending the Shabbaton reminded me how we need to pay more attention to our typical child’s special needs.
I have a dear friend who grew up with a sister with special needs. He’s shared with me over the years how his parents were never open about her disability when he was growing up. He needed support in his quest to understand her needs and to seek his own individuality, separate from his family. He needed friends in similar situations to share with and learn from. His advice has helped guide our family’s choices as we strive to hear our older son, to teach him, and to let him know that he is not alone.
After meeting Rachel, I could see my son’s beautiful eyes suddenly open wide as he took in the world around him. While we’ve been to the Tikvah Family Shabbaton before, this was the first time he seemed to realize who else was there. He saw other families who each had a child with a disability and siblings who “got it” and could understand his frustrations and challenges. In an instant I saw him feeling less alone. I took comfort in that moment and those that followed.
Knowing that there are people who walk a similar path, who wrestle (literally!) with a sibling in the same situation, and who can support both of my sons as they navigate their lives, is an incredible gift.
Spending a weekend with other families who have children with disabilities is incredibly empowering and comforting. Spending a weekend with other families who also have children who are learning to be incredible mensches—honest, humble, caring people, who recognize ability and strength in everyone they meet—is a true blessing. Recognizing that my sons both have “special needs” that we are privileged to nurture and support is what made the Shabbaton extra special for our family.
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