“He stopped eating the things he ate before. He would scream if I was out of his sight. He wouldn’t play with his toys the right way…The playground became like a nightmare to him. He refused to go near one.”

Amy Romstadt recently recalled her son’s disturbing behavior between the ages 18 months to four. She took him to physicians and specialists. The eventual diagnosis hung like a death sentence to a normal life—Derek had Pervasive Development Disorder Not Otherwise Specified, a high-functioning form of autism similar to Asperger’s Syndrome.

Autism is one of the fastest growing neurological disorders in the United States. Autistics obsess with the self, have an inability to communicate, a short attention span and can’t interact socially. One in 91 children have some degree of autism, according to Patty Cunningham, a licensed pediatric occupational therapist with the Clinic-Home Intensive Program (CHIP) administered by Mercy Children’s Hospital. The cause is unknown. There is no cure.

Autistics require a high degree of parental and sibling interaction with social service and educational systems as well as personal patience. When Derek was two to three years old, for example, Amy couldn’t convince him it was safe to leave her lap, and when she left him alone for a few minutes he would breakdown. When she took him out in public, the noise and unfamiliar surroundings caused Derek uncontrollable anxiety. He would clench up, shake, scream hysterically and throw himself on the ground.

Amy’s fears were not confined to just how she would deal with Derek day in and day out, she feared for the future. Would he ever be able to live on his own? Would he be able to work? Would the attention he required keep Amy from being a full-time parent to her other children?

This was not the family life she and her husband Jack envisioned. He is a civil engineer; she was a medical assistant until becoming a stay-at-home mom. The two live in Northwood with an older son, Jack, 12, and nine-month-old twins.

“I had to tell myself it wasn’t about me, it was about Derek. I had to get over how I felt and focus on him and get him what he needed. I put hundreds of thousands of miles on my vehicle. I have a lot of time and work and effort invested in Derek and I’m one of the lucky people who can say it paid off.”

Paid off in a big way, but the journey wasn’t pleasant nor cheap, nor is it over.

One of Amy’s first tasks was to consult therapist Patty Cunningham. She taught Amy two strategies that made family life bearable--treat Derek as a visual learner and satisfy his craving for routine. Amy started to use the Picture Exchange Communication System (PECS), a series of picture cards showing scenes of personal hygiene, meals, play times and reading time. The visual cues made communication possible. But, if Amy put one of the cues out of sequence Derek would “spazz out.”

“If you altered his routine, he could not recover,” she said. “I had to learn how to approach Derek in a way that he would understand me, to see the world the way he does, to understand it the way he does. He sees everything in a flash of pictures.”

Cunningham recalls those first few sessions when Derek was two to three years old. She remembers having “great difficulty” separating Derek from his mother. He was fearful of anything new, hypersensitive to noise, touch and movement and could not interact with her. She slowly introduced Derek to toys and textures while he sat on his mother’s lap. Gradually, she added her touch and later moved Derek to her lap, then to the floor and, finally, Derek became comfortable enough with his surroundings, his mother could leave the room. That took six to nine months.

Cunningham worked with the family for two and half years and when Derek turned five, she recommended him for the CHIP program, an intensive early-intervention program employing a pediatric speech-language pathologist, a pediatric occupational therapist, an education specialist, a behavior consultant and their assistants. The year program consists of four six-hour days each week. It is not cheap. The cost is $30,000. The Ohio Autism Scholarship program paid for $20,000.

Derek was deemed a good candidate because he was improving dramatically. For instance, Derek taught himself to read and write. Amy recalls Derek’s grandmother giving him a birthday card at age three. Derek read it word for word, despite not being taught how to read. Cunningham calls this condition hyperlexia, an unusual ability to understand phonetics.

The child that entered the CHIP program and underwent 1,500 hours of therapy was not the same one that left, Amy says.

“The program saved him,” Amy told me as tears formed in her eyes. She paused to collect herself before adding, “It gave him back to us. It was like living with a stranger at times. The whole house had to move and function around his needs in order to keep his environment stable. When he started the program, he immediately started changing. It was just unbelievable. He went from no verbal skills to spouting sentences.  

“It’s weird. The things you teach normal children like how to read and write came naturally to Derek. The things you don’t teach normal children like how to make friends and how to understand the world around him are the things we had to teach him.”

Cunningham agrees with Amy’s assessment. “He went from a child who was very scared of this world and had limited ability to interact with people other than his immediate family to a child who was able to establish relationships with all the adults in the clinic and with all of his peers and interact with confidence.”

Today, Derek is enrolled in the Northwood schools. He plays soccer and tee-ball, an amazing feat when you consider at one time Derek couldn’t tolerate noise, touch or leaving his feet.

Patty Cunningham has worked with autistics for 26 years. Derek is not “cured.” The condition is neurological. It will be a challenge for him to adjust to environmental changes as he moves through the school system. However, he serves as a beacon of hope for the increasing number of families faced with the ordeal of trying to connect their autistic child to the world most of us know. Of the 21 kids CHIP has served since 2008, six have moved on to a typical preschool. Cunningham remains positive about Derek’s future. “I have high expectations for him. He’s an amazing little guy. And, his family is amazing. You make suggestions to them and they do it.”

 
For more information on the CHIP program call 419-865-3314. Comment to This e-mail address is being protected from spambots. You need JavaScript enabled to view it
 

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