fragile x

The Highs & Lows of Parenting a Child with Fragile X Syndrome

Father tying shoe laces of his son traveling in train.

I am a typical parent with an atypical son, which means that I have extraordinary parenting experiences that I deal with in an ordinary way.

I remember one morning in rabbinical school I had been up all night with our then baby because, little did we know at the time, he had enlarged adenoids and sleep apnea—common traits in children with Fragile X, a genetic condition. Many of my classmates had children of their own who were much quicker to sleep through the night and were on a relatively typical developmental trajectory. I felt completely isolated and alone in my struggle as they functioned on their eight hours of sleep.

Eventually, our professor walked in late looking disheveled and tired. He had a large coffee in his hand and his voice was raspy and soft. He said, “I apologize for my being late. I was up all night working with my daughter on her college essay.” We all smiled and were merciful about his tardiness but I think I smiled for a different reason. I imagine, although I don’t know, that most of my peers smiled because they were dreaming of the day when they would help their children apply for college. I smiled because I thought to myself, “Well, at least I won’t have to stay up all night helping with college essays.”

When my wife and I first started to research Fragile X we learned that most kids with FXS don’t go to a normal college. A lot of adults with FXS don’t earn a driver’s license. Few get married. And while we are hopeful that the research and the science will advance enough over the years to provide some treatment options, we have a shared sadness that our eldest may never have those typical coming-of-age experiences, or at least not typically.

That’s at the core of our unique reality as parents with a child with special needs. We have, and will continue to have, challenges just like every parent, but the challenges are, and will be, different than most. We also have, and will continue to have, great happiness in his successes, but the successes are, and will be, different than most.

For instance, my son’s low muscle tone causes poor articulation, which means that he talks a lot but it is very difficult to understand his words. He knows what he wants and he can express his needs, but most people can’t understand what he says. So when we’re in a social situation with other parents and children, my wife or I have to make sure that we are in earshot of him so that we can interpret his words for everyone else.

This is a challenge for us when we are with other people but, on the flip side, he is extraordinarily gregarious. This makes him really fun to be with in social settings. So while he is harder to understand than most typically developing children his age, he is also more adaptable and less shy.

We may not share the same milestones or moments as our fellow parents, or at least not on the same timeline, but we share the highs and lows that come with the title of “parent.” We learned a long time ago that there is no use in comparing our challenges or successes to our fellow parents because we are just like everyone else: different.


Read More:

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Quiz: Which Celebrity Jewish Mother Are You?


ruderman-grant

Rabbi Ravid Tilles

Rabbi Ravid Tilles is the associate rabbi at the Merrick Jewish Centre in Merrick, Long Island. Rabbi Tilles received ordination from the Jewish Theological Seminary in 2013 where he also received a certificate in Pastoral Care and Counseling. Originally from Silver Spring Maryland, he is married to Yaffa and has two sons.

The opinions expressed here are the personal views of the author. Comments are moderated, so use your inside voices, keep your hands to yourself, and no, we're not interested in herbal supplements.

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