Friday, November 02, 2012

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, where she beautifully describes life with Fragile X.

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.

No comments:


#youmightbeanautismparentif 2012 in review 9/11 memories ABA therapy Acceptance acronyms advocacy affection aggression AJ Aliza Aliza the playwright All I really need to know... Alphabitty Moments American Girl Ann Coulter antibullying anxiety anxiety in parents of children with special needs apple orchard apps for autism AppSmitten Arbaclofen Arbitrary Thoughts ARC autism autism brushing autism portrayed in TV shows Autism Shines awareness backyard band baseball bath toys beds behavior problems being tall Birthday Boys biting blog change blog hop blogging books bottles brushing bubbles Burnsville Fire Muster bus Cabin Fever in Minnesota candy Carly Fleischmann Carly's Voice cats cats and dogs chewys Chicago childcare for special needs children childhood Children's Museum chocolate Christmas Church circumin clinical trials Clonidine CNN Hero of 2011 coffee communication comparisons computer Conference cost of special education Courage Center Curcumin daddy dance dance competition dance moms Dental surgery dentist developmental milestones diagnosis diapers Diego Disability Day dogs Dolphin Tale Doomsday Preparation Dora Doritos drug trials DVD player early intervention earrings Easter ECSE Parent Retreat electronic gadgets electronics Everything I need to know... Evil Overlord fall falling asleep at school families family fashion fear Featured Feel Good Friday field trip fireworks first day of school Flash Gordon Food Chronicles food issues in Fragile X and autistic children forms forts Fragile Face of God Fragile X Fragile X advocate Fragile X and autism Fragile X Awareness Day Fragile X carriers Fragile X in the news Fragile X presentation Fragile X statistics Fragile X Writers friends fundraiser for Fragile X funniest Funny Gabrielle Giffords Galveston games getting carsick Girls' Night Out Giving Spirit glasses global warming going home Good Morning Great Quotes guest blogs guest post haircuts Halloween hearing test Heaven is for Real hippotherapy holidays Holland Holly home life homework hotel hugging human behavior hyperactivity IEP Meeting IEPs in the news inclusion inspiration integration iPad iPad apps iPad apps for autism IQ testing Jack Jablonski January First Joke journal entry kids with Fragile X and animals Kindergarten Kindle kisses language study learning to talk leaves lemonade stand Lily Little Einsteins losing teeth Mad Gab makeup mall Mall of America marcia braden McDonalds media sensationalization medications Melatonin Miami MIND Institute Minnesota Bloggers Conference minocycline Miracle League monkeys mosquito bites Mother's Day movies MVMOM Used Clothing and Equipment Sale nail trimming names naughtiness neighbors nicknames nightmares normal off topic one thing leads to another online dating Operation Beautiful oral sensory orphan drug act other bloggers Our Wedding outside overstimulation panic attacks parade parental stress Parenthood park Partners in Policymaking penicillin people with disabilities pets pharmacy fun photography Photoshop picnic Pictures pinching pink shirt Pinterest playing outside playing with toys poem politics poop potty training Presents protecting autistic children rash reading to kids research Retreat riding a bike Robin Williams Roger Ebert routine RSS feed RUSH University San Diego Sandy Hook Elementary Santa schedules school school bus school notes school pictures screaming self image self-checkouts sensory Seroquel siblings with developmental delays sick kids sippy cups sleep smile snow pictures Snowstorm social situations speaking of the unspeakable special education special education evaluation special needs kids special needs parents Special Needs Ryan Gosling Special Olympics spelling spoon feeding spring break staying positive stimming Strep STX209 Stylish Blog Award suicide summer Sunday School Sundays sunshine survival mode swimming talking talking to kindergarteners Target teacher's aides Teeth brushing Tegretol Temple Grandin Ten Commandments textbook case of Fragile X thankful thanksgiving that window/mirror thing The Autism Store The R Word the rapid passage of time The Right Things to say to parents of special needs children The Santa Experience the Shedd Aquarium The Twin Thing The Wiggles therapeutic horseback riding therapy This is Autism topless trampoline traveling with special needs children TV twins with special needs Twitter typical Fragile X characteristics typical kids typing vacation Vacation Bible School video games videos volunteering Waisman Center water play way-back-Wednesday What I've Learned What's your song? when a special needs parent dies Wiggles Wii games Winner Winner Chicken Dinner winter wonder Wonder Pets Wordful Wednesday Wordless Wednesday Words of Wisdom World Autism Awareness Day YMCA You Tube Zack Zoloft zoo animals

Fragile X Blogs