149th VCC “lights it up blue” in Afghanistan for Autism Awareness and one of their own

Story and photos by Spc. John Rader, 149th VCC Unit Public Affairs Historian Representative

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Soldiers of the 149th Vertical Construction Company gather for a group photo in support of Sgt. Gary Forsyth at FOB Sharana, Afghanistan. Forsyth’s daughter, Norah, was diagnosed with autism when she was 18 months old. (Kentucky National Guard photo by Spc. John Rader)

FORWARD OPERATING BASE SHARANA, Afghanistan — Deployed Soldiers of the 149th Vertical Construction Company got together to raise awareness for autism by hanging blue lights outside of their living quarters in Afghanistan.  The Guardsmen of Kentucky will now join over 60 countries worldwide with the Autism Speaks “Light it up Blue” campaign for Autism Awareness.

The Engineers of the 149th used what little resources they had when it came to making blue lights to hang. Using only a box of blue signal lights, several empty water bottles, and a can of blue spray paint, the engineers were able to fashion enough blue lights together to show their support.

“It makes me feel good to show support and to raise awareness for a disorder that has personally impacted a good friend and fellow Soldier,” said Spc. Shawn Illig.

While autism has been a buzz word for a number of  years, efforts to promote autism awareness have helped families of children on the spectrum receive the proper care, resources, and services they need, which Sgt. Gary Forsyth of the 149th VCC, and parent of a child with autism has found out first hand.

On March 26th 2010, Forsyth and wife Gena gave birth to their first child, a baby girl named Norah Rose.

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Sgt Gary Forsyth with the 149th Vertical Construction Co. hangs blue lights outside of his living quarters in Afghanistan to show support for daughter Norah, and for the “Light it up Blue” campaign raising awareness for autism. (Kentucky National Guard photo by Spc. John Rader)

“It wasn’t until about 18 months later we discovered Norah wasn’t to par with her communication skills as most children her age. At first we assumed it was a delay in speech or a development delay,” said Forsyth

At an 18 month checkup with the pediatrician, the Forsyth’s addressed their concerns about Norah’s speech development because she had few words, which she would use sparingly. Norah also had a tendency to mouth or eat nonfood items. The doctor suggested a program through Kentucky that helped with childhood development disorders called First Steps.

“We got her in the program and she started speech therapy once a week, occupational therapy every other week, and developmental intervention once a month,” said Gena Forsyth. “There were other things that Norah did, that I was blinded to as her mother, because she didn’t do those things with me, such as not making eye contact, not wanting to be near people, not playing with kids her age and she had severe meltdowns that, at the time, seemed to be for no reason.”

Finally after being on a waiting list for six months, Gena and Gary had an appointment for an intensive level arena evaluation for Norah on Dec. 11, 2012 at New Perceptions, with a developmental pediatrician from Children’s Hospital. There, a team of therapists spent time consulting with the Forsyth’s about their concerns and then took turns playing and observing Norah.

“It was a day that I will never forget,” said Gena. “After just a few hours, we received the diagnosis that Norah was on the autism spectrum. It was a hard thing to hear, even though deep down, it wasn’t a huge shock. Personally, I spent the next couple of days in a fragile state, but then like a switch, I was over being upset and was ready to tackle this head on.”

Afterwards, Gena and Gary added extra therapies to Norah’s schedule and worked a lot more with her at home using the new tools and resources that were taught to them. They were determined to get Norah everything she needed.  Through working with Norah more and seeking all the therapies available to them, they had begun to isolate what types of areas Norah needed to be worked on with.

“Norah is considered to be nonverbal and that’s the issue we attempted to face first,” said Gary. “Through therapy Norah is beginning to overcome her nonverbal inhibitions by randomly adding words to her vocabulary and formulating sentences. She even told her therapist that she wanted the TV on, which didn’t happen a year ago. We also learned that Norah has pica, which is a disorder that causes her to eat or chew on nonfood items such as books, paper, toys, and even the walls sometimes. We have learned how to redirect the pica through tools and training.

In addition, another challenge Norah faces is handling her sensory processing disorder. It’s a disorder that refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses.

“In a sense, it was out of her control to have a meltdown over what we consider to be nothing. After finding out things that bother her, we attempted to prevent them (to the best of our ability) from happening.  Norah is brilliant and it’s amazing to watch her mind work. At the age of 2, she was putting 54 piece puzzles together, without hesitation,” said Gena. “She’s a lot like her father from an engineer’s aspect; she builds things with blocks and they’re very symmetrical and level.”

Gary and Gena put together a directory of references and contacts that they used to find out all the resources available to them through the state and the Kentucky National Guard for other families with children on the spectrum.

“We put this directory together because we spent a lot of time feeling lost,” Gary said. “We were not sure what resources where available to us. I feel it’s a starting guide for the beginning stages for parents who have a child with autism. I passed it on through my chain of command at the unit, in hopes it will assist someone else in the future.”

Autism-Awareness-Month-460x250“I’ve already passed it on to another Soldier I met in Afghanistan, and I feel blessed to know my all my friends and fellow Soldiers in the unit are there for each other no matter what arises in our lives.”

For more information on autism, click here.

And for information on Team Norah Rose, click here.

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