Family, school support strong for Pine Grove youngster's disorder
Every chair had a plate and cup placed in front of it.
It is one of Zachary Werkheiser's chores to set the table at his Pine Grove home, so he had no problem doing it for a special treat during the school day. The chocolate cake had just arrived and he was ready for it. However, he didn't want to eat alone and that's where the struggle begins.
Zachary, 6, a kindergartner at Pine Grove Area Elementary School, suffers from childhood apraxia. It is a speech disorder that makes it difficult for children to pronounce syllables and words.
A seemingly simple question such as "Do you a want piece of cake?" can be difficult for Zachary. Stuttering and missed words are common features of the disorder.
Despite the struggle, the vibrant, charming boy makes his way around to everyone in the room asking if they will join him for cake. Sometimes he needed to be slowed down or asked to sound out words, but he eventually got the question out and the answers he wanted.
Apraxia is a newer disorder in terms of diagnosis. Commonly lumped with mental disorders, it affects the muscles, not the brain.
"The problem is that there is no pathway to connect the brain to those muscles. And they can't produce the sound. The thought is here. The sound and what they want to say is here. The intelligence is there," Kelley Werkheiser, Zachary's mother, said. "There is no motor planning. It's a motor planning disorder."
"He can say 'Hi.' He just can't formulate long sentences," his father, Mark Werkheiser, added.
The words that Zachary wants to say are ready to go but his mouth can't keep up, which leads to another problem.
"His brain is working faster then his mouth and so therefore it becomes an anxiety issue," Kelley Werkheiser said.
Because of the symptoms, apraxia is often associated with autism or Asperger syndrome. However, that categorization is not accurate.
"There is a neurological piece there because it has to do with the communication pathway to the muscles. It's not an intellectual disability," Kendy Hinkel, Pine Grove Area School District superintendent, said.
The difficulty in diagnosing the disorder is the length of time it takes a child to show symptoms. A baby with apraxia may only make a sucking motion because it is a natural movement. The coos and goos are absent, but parents might think the baby is just slow to develop.
"You don't know until they try to verbalize," Kelley Werkheiser said.
In Zachary's case, it took 18 months to a couple years to realize something wasn't right. Even though the disorder is now pinpointed, a shadow of unknown continues to follow Zachary.
Kelley Werkheiser said they didn't know how to categorize him in school until three or four months into the year.
"There is not enough information, unfortunately, because apraxics have not been diagnosed enough," she said.
However, the word is starting to get out.
Kelley Werkheiser said doctors are starting to recognize the disorder as its own entity. Currently, statistics show 1 in 1,000 children have apraxia.
"We apraxia people are trying to get the word out and making doctors aware of it," Kelley Werkheiser said.
On May 14, Zachary and his family, which includes siblings Angela, 10, Jacob, 8, and Samuel, 3, will recognize Apraxia Awareness Day. According to the Childhood Apraxia of Speech Association of North America, the special day is used to promote the needs and challenges of the children affected by the disorder. The event hopes to shed light on the misunderstood disorder and raise the public's knowledge.
"Its like any other emerging disorder, we get better and better at identifying it both from a medical identification side and from the social identification side," Hinkel said.
Zachary worked on his cake. He scooped up the icing and broke pieces off the wedge. But the thicker the piece of cake became, the tougher it was for Zachary to cut through it with a fork.
Kelley Werkheiser said apraxia can affect motor skills in the fingers. For example, writing can be a struggle for an apraxic.
Writing and verbalizing are two key components of a child's school day, but despite these difficulties, Kelley Werkheiser and Hinkel said Zachary is beginning to flourish.
Kelley Werkheiser said Zachary is currently in the top 10 percentile in the kindergarten class.
"The intelligence is there. He just can't get it out (verbally)," Werkheiser said.
Studies are half of a child's school life. The other half is the social aspect.
This is where his parents and Hinkel see Zachary's greatest attributes. He is fully equipped with an infectious charm that Hinkel said she believes will get him through his school years. She said there are students in his class who will slow him down to help him talk and even relay his message when a substitute is in the classroom.
"He has friends. He is part of the group," Hinkel said.
The school has also stepped up efforts to help Zachary communicate on his own in the classroom. Hinkel said one technique is a little chart on his desk that he can use to express happiness or sadness. Hinkel said he moves the marker into the red mostly when he is frustrated or doesn't understand. That's when the teacher will work with him one-on-one to figure out the problem.
Kelley Werkheiser said the secret to success is the teacher. This year, his teacher is Susan Halcovich.
"She has done wonders for him," Werkheiser said.
Hinkel has also played an important role in Zachary's development at Pine Grove.
She took over as superintendent on Nov. 1, 2013, and immediately met with Zachary.
"I got involved pretty quickly and I understood what we needed to do," Hinkel, who was a former special education teacher, said.
Zachary does have therapy sessions during the school day that focus on pushing him verbally.
"From a school perspective, we want to make sure that he integrates well and he is socially OK in his setting and then there are all these therapies we do to improve his communication skills," Hinkel said.
The Werkheisers couldn't be happier with the work Zachary is getting from the team at Pine Grove.
"They could have easily said, 'Well we are not equipped or don't understand it. We don't have enough knowledge about it or history about it' and just give a run-of-the-mill therapy, but they haven't done that," Mark Werkheiser said.
"They have curtailed their programs to meet his needs," Kelley Werkheiser added.
There is a lot of trial and error, but Hinkel said Zachary has shown great improvement since she first met him in the fall.
His parents have seen it, too.
"I'm speechless about the support they give me. I couldn't do it alone. We can't do it alone," Kelley Werkheiser said.