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Jewish genetic diseases

What Traveling with My Child with Disabilities Has Taught Me

kid in plane

More ferocious than the Tiger Mama. Hovering closer than every Helicopter Parent. More stereotypical than anyone’s Jewish mother.

A vacation. No, a family trip. Add to that: a family trip with a child with special needs. As we tried to escape the cold of New England to visit Miami, we found ourselves facing a different set of frigid conditions: long lines, cranky children, delayed flights, and my favorite, unfriendly stares from people who think we are bad parents. If only they knew, or took the time to ask. Or, preferably, if only they would just look the other way.

I never knew I had it in me. Sure, I can be pushy, assertive, directed, and directive. But traveling through airports with my child with Fragile X Syndrome brings out a whole new dimension in my parenting. I hardly recognize myself, but when I look at my reflection in the airplane window (once we’re finally through the airport and I can take a breath), I am proud of what I see.

READ: The First Line of Dolls with Disabilities Is Finally Here

I speak my mind. I speak his mind too, since my child is too young or developmentally delayed to truly express himself. I educate. I advocate. I don’t wait in line if it’s not necessary. I take advantage of every possible opportunity to make the experience less challenging for all of us.

It’s not just about getting what we need for our child, though his needs are certainly our priority. It’s about making a difference for our child’s life and for other children and adults who will come through the same airports after him.

Of course I know we cannot educate every person who handles our luggage (as he screams for our bags to remain in our hands) or explain his condition to every TSA agent (as we wrestle him in our arms, trying to calm his anxieties). There’s not always time to find a family restroom and even less often a chance to find one with a toilet that does not self-flush (too loud and unexpected for his sensitive ears). And while airlines are starting to be more accommodating with “silent boarding” options (even before pre-boarding), it is hard to explain to the gate agent that we’ve exhausted every line of reasoning and the iPad has almost lost all of its battery and this child just must board the plane right now.

READ: Investigation Finds 83% of NYC’s Public Schools Are Failing Students with Disabilities

One step at a time. One ferocious, hovering, overbearing step at a time.

It is exhausting traveling with any child. Add a child with disabilities and it means we are always advocating, teaching, and explaining. Our work here, there, and everywhere is never done.

Our rabbis in the Talmud have a beautiful teaching: I have learned much from my teachers, more from my colleagues, and the most from my students. The same applies to our children. They teach us something every day. Our son with Fragile X Syndrome has taught us to be aware of the sights and sounds around us, to appreciate the quiet, still moments (fleeting as they may be), and to advocate and teach wherever we go.

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