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Emma, the fighter

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Spalding thrives with help of structured environment

By John Overby

When Emma Spalding wakes up in the morning, her first thought is seeing if she can get ready fast enough to watch cartoons (Scooby Doo is her favorite).

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The deal is, if she gets ready before her dad, Joey, she can watch her shows until he’s ready to take her to school.

She gets dressed first, brushes her teeth and then brushes her hair—in that order, specifically.

Then, before she leaves in the morning, she is typically thinking about what she gets to do when she gets home after school, which often includes playing Mario or Disney Infinity.

But when her plans get changed or when she has to do an activity she doesn’t necessarily enjoy, she can have struggles.

“If anything throws that routine off, it upsets her,” her mother, Donna Spalding, said. “Doing all those other steps makes no sense to her.”
You see, Emma has autism.

And sticking to a structured lifestyle is just one of the many intricacies Emma is forced to deal with on a daily basis.

Emma’s parents knew from a very early age that she had autism, or at least a disorder of some kind. When she was 6 months old, Donna, noticed developmental delays in her daughter. By the time Emma was 3, her faint inklings had become strong suspicions.

The only thing that was missing was an official diagnosis, which she wouldn’t receive until the age of 5.

“I think up until that point, we knew there was something,” Donna said.

Emma, who is now 10, had been in therapy since she was 6 months old, but it didn’t seem to be progressing like the doctors told her parents it would.

Donna started doing research herself, despite warnings not to.

“Everybody tells you to stay off the Internet because it’ll scare you to death, but it was my best friend,” Donna said. “As I researched her symptoms, autism was the only thing that ever made since to me.”

While knowing in her heart that Emma was most likely autistic, that did her no good when Emma was enrolled in school. Without an official diagnosis, it was difficult for teachers to give her the help she needed.

For Donna, being undiagnosed while attending preschool and kindergarten was “not as big of a deal.”

“The key was getting her an IEP (Individualized Educational Program),” Donna said. “I knew that, without them being able to focus on her needs, she wouldn’t be able to progress like she could with an IEP.”

Luckily for Emma’s parents, Emma was soon officially diagnosed with autism spectrum disorder and, more recently, developmental disability.

Soon after the diagnosis became official, Donna discovered the newly formed Washington Autism Group of Support, a local group focused on increasing autism awareness around the area.

“Talking with the other parents has been a great source of information, therapies and treatments for us,” Donna said. “I’ve gotten a lot of ideas from them that have been helpful for Emma.”
Joining this group also showed Donna that an old adage about autism is true: If you know one child with autism, you know one child with autism.

“I can honestly say that my child is not like any of the other children in the group,” Donna said. “They’re all so different; they all have their own needs.”

One major difference that Donna says from Emma is that she’s “an extremely happy child who smiles all the time.”

“That’s not necessarily typical of an autistic child,” Donna said.

Recently, Emma has had to overcome even more adversity.

While autism is becoming increasingly more prevalent (one in 68 births is the most common estimate), Emma was only in the past year diagnosed with a rare auto-immune disease called juvenile dermatomyofitis (JDM), a condition that only occurs in about 3 in 1 million children.

Basically, it is a disease that is triggered by the sun and affects both her muscles and skin. If she is exposed to the sun for more than a few minutes, she will start to become weak—unable to even pick herself off of the ground—and break out with a rash.

There is currently no cure for JDM, but if she is able to go two years symptom-free, she will be considered in remission.

As someone who loves to fish and swim, the change has been difficult for Emma, to say the least, according to her mother.

“The last year has been extremely difficult,” Donna said. “I’m trying to help her to understand that not only she has autism but she has an illness. For 10 years, she had been able to do things that she can’t do now.”

But change has always been an unpleasant inconvenience for Emma.

With each new obstacle, though, — small (if the clothes are still in the dryer when she’s ready to get dressed) or large (dealing with her JDM) — Donna believes her daughter will continue learning how to adapt in her own way.

“My family, parts of our lives are pretty unstructured, and she struggles with that,” Donna said. “It can be a challenge, but she’s usually pretty good if we have a change of plans and we tell her why we can’t do what she’s expecting. There’s always a learning process, but she has been dealing with this her whole life. This is nothing new.”

To celebrate Autism Awareness Month, the Washington Autism Group of Support will be hosting their fifth annual 5k walk and fair this Saturday from 11 a.m. to 3 p.m. at River of Life Community Church in Springfield.