One Mother's Experience with Fragile X

I heard the news about Fragile X Syndrome with a mixture of feelings and memories.

Years ago, when my autistic son was only three, I remember thinking, "If I could just give him some of my brain cells, I would. I would do anything to change this."

But Nat's autism was not going to go away, not surgically or any other way.

Post diagnosis, I was like a ghost mom, haunting the playgrounds where my little boy used to play.

It seemed like he had been replaced by a creature. My father tried to help me by saying, "Well, he's still our Nat."

Even though Nat was no different once we had a name for it, I looked at him and saw only autism, and felt defeated.

It took me a very long time to understand that he was, in fact, still Nat. One day when he was nearly twelve, and I was at the end of my rope, it happened.

He had been fake laughing for weeks, maniacal and horribly irritating, and we could not get him to stop. But that day, I was feeling too tired to think about the recommended treatment from his school.

Instead, I started tickling and poking him playfully. Soon we were both laughing together. That was when I understood: the laughter was his way of connecting with us! There really was a boy in there, not a creature.

One of life's greatest sadnesses is not being able to set things right for a loved one, especially a child. Maybe the MIT scientists who reversed the Fragile X symptoms will one day soon lead some parents to a new experience: getting to know their child without developmental
delays.

Without struggle - at least that particular kind of struggle. I envy those parents.

But I also find that I feel relieved to know that whatever scientific discovery may or may not bring, a mere label, or collection of challenging issues and behaviors, won't change who Nat is essentially: a complex but sweet young man who loves swimming and salty food.

And laughs a little too much. No matter what, as Dad would say, "He's still our Nat."

Susan Senator
Author, "Making Peace With Autism: One Family's Story of Struggle, Discovery, and Unexpected Gifts." (Trumpeter, 2005)