Fragile X Writers Series: It Will Get Better



Stephanie is a dear friend of mine and I'm honored to start this series with her story. She wrote this a few weeks ago after an experience her family had at church.  She and Everett are parents to a sweet little boy named Timothy, who is now seven years old and has Fragile X Syndrome and autism. Stephanie just started to blog at http://myfragilexlife.blogspot.com, where she beautifully describes life with Fragile X.
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It’s supposed to get easier. That is what we are told. That is what we tell people.

When your child screams non-stop for no reason. When they throw up constantly. When your child completely melts down for no apparent reason and there is no way to calm them… and every trick you try seems to make it worse. When you can’t eat at a restaurant with your child due to the level of noise and confusion.

“Hang on.” we say, “It will get better. Fraggles (children with Fragile X if you prefer) are like fine wine. They get better with age.” And it does get better. Slowly.. painfully slowly… you solve the puzzle that is your child. You figure out what triggers cause them to meltdown. You realize that the sound of a lawnmower is something that is intolerable, like a huge screaming beast that is intent on eating everyone in sight. Sometimes even the sight of this monster causes terror. Initially you don’t understand why, but eventually a pattern emerges. A pattern that has to do with sound… both loud as well as unexpected. And chaos… not only with sound but visually as well.



And when an expert describes it as:

“Lacking the ability to habituate to things.. so that every sound or disruption is a new one, causing the same startle reflex.”

“When walking into a room all of the details – the fiber of the carpet, the picture on the wall all have equal importance.. and that is overwhelming.”

“They hear things ten times louder than we do”

You begin to have an understanding. It seems to fit. It fits so well that you cling to it. And then begin to understand why a child might dislike the sound of a furnace turning on during a cold winter.

And so you work very hard change their environment, the very world that we live in. You help them to anticipate things that occur somewhat randomly. And they grow up. And fewer things cause issues... either due to intensive therapy or simply the strengthening of connections in the brain that help them to habituate better. And it gets better. Restaurants are an option... and lawn mowers are just... lawn mowers.
And sometimes it isn’t better at all.

This morning we attended the baptism of my second niece. My in-laws attend a lovely huge, old cathedral. It oozes of peace and tradition. It is lovely. The first niece’s baptism, two years ago, our entire family attended. The Kiddo sat on the floor in the pew and watched Baby Einstein the entire service. The service was quiet, low key… muted tones of an organ and sweet singing of the choir. It was lovely. At the end of the ceremony we took a family photo. He had no shoes on but they managed to get one with him looking at the camera. We considered the day a success.

I had high hopes for this morning. Which might have been the issue.

He put on church clothes – black shoes, black pants with a blue long sleeve shirt. Which was a victory in itself. Grandma came with her Jeep to make the ride to church fun. We got there early so we could get a decent parking space. We sat in the car for a bit allowing him to “drive” and play rocket ship in the driver’s seat. He chattered on.

We ventured inside… sat in a quiet church with the Kiddo between us. Nestled within our presence. Watching his silent movie on his iPad. And I was hopeful.

And then the four-piece brass ensemble started. French horn tones pierced the room.

“Let’s go home.” He said. I slowly gather my purse and his bags… trying to see if he would acclimate. He stands up, the movie forgotten. He says, “Let’s go home… I feel sick” He holds his stomach and starts to cry. We left.

We sit in the hallway, hiding near the stairs in the corner where people greet us… someone’s cell phone blares… the back door snaps open with a crack, startling him and I….

He decides to take matters into his own hands and heads for the door. I follow. He watches to make sure I am following but determinedly forages toward the door. Through a maze of twists and turns to the entry way. The sun was shining brightly. A perfect day. We sat in the entry way... which, when the horns were playing, was quiet. But then the service began in earnest. The building had been outfitted with speakers since the last time we were there, ensuring that every corner of the building is saturated with the sounds of the service. The welcoming words echoed off the marble and glass.

“I’m scared. It’s too loud for me. We have to go home.”

Two years ago this interchange would have never happened. Two years ago I wondered if he would ever speak in full sentences. Two years ago things were different. And I revel in his words. In his self awareness. In his ability to self advocate: The environment is making him afraid. He realizes why and he offers a solution. What parent would dare to hope for anything more?

And yet it breaks my heart.

We went back to the hallway. I promised rewards of movies and snack. “Let’s go home” was his response.
The baptism begins. Feeling desperate not to miss the big moment, during the blessing we quietly enter the sanctuary... I whisper promises of seeing Dad and have bacon and bread. The strongest weapons in my arsenal.

We walk in... everyone’s head is bent in prayer. All is quiet. All is holy. Lovely.. Peaceful. We walk in the side door. We get to my husband. “Go home… go home….” the Kiddo says. People look up… wondering about the disruption. I open his snack container with a loud pop. It doesn’t even register. “GO HOME! GO HOME!” he pleads. At this level his cries are heard around the church. I think back to my wedding when that one small child cried during the ceremony. Some would say, “ruining it all.” My husband looks up with a look that encourages us to leave while nodding in dismay and understanding.

We go home.

On the way out I say, “Mommy’s sad.”

“But why?” he says? Actually concerned.

“Because we have to leave and it’s your cousin’s special day.”

“Go home.. go home…” he replies.

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