Putting the puzzle pieces together; A family’s journey with autism

By : 
Jordan Gerard

All kids are a puzzle, requiring the right piece to fit, help them out and keep growing into the full picture. What's more troubling is putting together puzzle pieces of autism.

The Myrah family of Spring Grove, including mom Karen, kids Anthony, Emily, Cavin, Clara, Ian and Aaron have pulled together to help Cavin, who was diagnosed with autism.

He was born a healthy baby boy and then a decline in abilities was noticed at about 18 months of age, Karen Myrah explained. 

At the urging of Teresa Hegge, Myrah scheduled an appointment with Gundersen Lutheran Healthcare Center in La Crosse, Wisconsin and anxiously waited for six months (as that was the waiting period) for the diagnosis.

In 2013 when Cavin was 10 years old, he met the criteria for Severe-Profound Developmental Cognitive Disability (DCD), which is defined as " a condition that results in intellectual functioning significantly below average and is associated with concurrent deficits in adaptive behavior that require special education and related services," according to the Minnesota Department of Education.

He also has a speech and language impairment, but he's overall healthy and happy.

Today, he's a healthy young man at the age of 16 who enjoys music, learning skills and spending time with classmates at the Chileda Institute, where he is a full time resident.

Raising Cavin

After the diagnosis, Houston County caseworker Diane Schulze helped Cavin and what he would need for future education. Later, Haleigh Johnson took over his case. 

Hiawatha Valley Education District also helped through that process. Public Health Nurse Mary Zaffke was also key to helping Cavin and his family.

He attended a special preschool in Spring Grove, then moved onto Caledonia Area Elementary for a few years, then Partners in Excellence in La Crosse and now Chileda.

It's hard for him to communicate with people, but he can read people's actions and intents like an expert, Myrah said.

One of the first challenges was praising good behaviors and ignoring negative behaviors. Cavin loves attention and gets it any way he can, she explained.

His first doctor saw him bang his head and watched. Meanwhile, Myrah immediately grabbed him off the floor and told him he couldn't do that because he'd hurt himself. To Cavin, he succeeded in getting attention.

The doctor explained to Myrah how his face lit up, like a kid on Christmas morning. As long as it wasn't an emergency, the behavior needed to be ignored, the doctor said.

Positive behavior had to be praised immediately. The method used to teach Cavin perhaps confused bystanders, as they couldn't understand the lack of punishment or even acknowledgement. "The best thing to do was redirect his attention," Myrah said. 

While growing up, Myrah and her family often had to guess at what he needed.

When he was younger, Cavin would point to his leg and say, "Ow, ow, ow." 

It wasn't because he had hurt his leg; it was because he was the same age as his older brother, Anthony, who had growing pains.The solution was calcium and a little pain medication.

If he wet the bed, it meant he needed to see the chiropractor. Thus, the finding of puzzle pieces began. A puzzle piece is the symbol for autism, which fits Cavin very well, Myrah said.

"Raising Cavin was a challenge but very rewarding," she added. "It opens your eyes and makes you stop to appreciate all the little things."

Stereotypes from bystanders

In public, the stereotype of autism would rear its head, sometimes a good experience and sometimes bad.

Myrah said Cavin likes to test acoustics by hollering, which occasionally sets people off. A Wal-Mart employee told them to "keep it down or get out." An elderly lady gathered the audacity to tell Myrah off.

"People don't understand because he looks normal," Myrah said. "There have been good experiences as well."

Cavin isn't very patient, she said. While waiting in line to check out, Myrah keeps him distracted to be patient. Occasionally a person recognizes the behavior because a relative has autism and allows Myrah to go ahead of them in line.

Church services could also be a struggle, but the congregation understood. The family attends St. Olaf's Church in Canton. Father Schmitz noticed how Myrah struggled to keep Cavin quiet and the embarrassment Myrah had.

With a kind word, he told her not to worry and just keep bringing him to church.

They would sit in the front and Cavin would copy the gestures of the priest during the service. 

Fellow parish members made sure to greet Cavin. Some would let Cavin check out their wristwatch while waiting in line for communion. 

Chileda Institute and hope

Cavin was generally happy and enjoyed being outside swinging, driving with his family and watching movies, until puberty came along in July 2017 and added the stress of growing up. 

He reacted through aggression toward his family members, and giving Myrah two back-to-back black eyes.

When safety became an issue for the family, that was the deciding point for Cavin to become a resident at Chileda, a living and learning center in La Crosse that helps children with cognitive and behavioral challenges.

In order for Cavin to live at Chileda, Myrah would have to sign him over to foster care.

"As a loving mother, that was the hardest thing I've had to do," she noted.

He was officially a resident on March 1, 2018. Since then, he's lost weight and has returned to his previous behavior before puberty disrupted everything. He was also familiar with Chileda, as he attended the center as a day student since July 21, 2016.

Cavin gets to spend time with his family every weekend for a day. His siblings are no longer leary of being around him, Myrah said.

"Instead, there is joy on their faces and they give Cavin hugs," she said.

Chileda has worked with him to prepare him with life skills and job skills.

They've also helped him learn basic school levels, like numbers, letters, matching numbers and more. He likes books, and can match most letters. He's also working on identifying letter sounds. Cavin is able to spell his first and last name verbally, and he can write his first name accurately most of the time.

He receives help with speech for 30 minutes a day, and is learning more phrases to use.

Perhaps one of his more favorite activities at Chileda is music therapy where he is able to imitate rhythm.

He also attends adapted physical education classes and enjoys walks on the treadmill or in the community and shooting basketballs. He also learns life skills and enjoys leisure time with art. Cavin's activity of his own choosing is puzzles or coloring.

When learning life skills, Cavin often helps with chores such as emptying garbage cans, delivering supplies from the front desk, cleaning up the classroom, wiping surfaces and assisting staff. These help him practice daily living skills.

Though he still struggles with behavioral episodes at Chileda when he's frustrated with a task, perseverating on going home or transitioning to a new task, he continues to work on improving those behaviors.

A friend for support

Cavin mostly responds to staff and teachers at Chileda, but discovered the value of a friend there, too.

Myrah says she got an early Christmas present this year. After dropping Cavin off at Chileda, she was about to back out of her parking spot when she spotted another boy greeting Cavin with a smile and a hug.

"It is a huge blessing that Cavin, with his limited verbal skills, was able to make a friend," she said. "I never thought it was possible."

While learning at Chileda, Cavin and his friend look at books or sensory buckets together, walk laps and talk about interests.

Where help is located

Before he attended the Chileda Institute, Cavin had help from several other agencies, including Home and Community Options in Winona, Special Olympics and ABLE and Camp Winnebago, which has since closed.

Currently Chileda is fundraising for a $90,000 renovation at their facility for a family visitation area. To donate and learn more about Chileda, go to www.chileda.org.