Many of us have heard of autism but few really know what it is. According to www.autismspeaks.org, “Autism spectrum disorder and Autism are both terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors.” Autism most commonly emerges between ages two and three and about 1 in 68 children is diagnosed with autism.

April is Autism Awareness Month

Several years ago, the Autism Society launched a nationwide effort to promote autism awareness and April became Autism Awareness Month. Autism Awareness Month represents an opportunity to promote autism awareness, acceptance and recognition of the disorder.

Jordan’s Story

Lori Coffman helped me understand the joys and challenges of raising a child with autism, her son Jordan Wohl having been diagnosed with it at a very young age. Coffman, a Wynot, Nebraska native, has three children. The older two in their thirties live close, her son near Chicago and her daughter in Sioux Falls.

Jordan, the youngest at age 18, also in Sioux Falls, lives at LifeScape, a facility that serves the needs of adults and children with disabilities. The non-profit organization was created in 2014 when Children’s Care Hospital and Schools merged with South Dakota Achieve. Jordan has lived here since the age of eight, an extremely difficult decision for Lori but has turned out to be the right decision for everyone.

“He struggled an awful lot over the years but he’s come a long way,” she explained of his time at LifeScape. “He really needs that structure. Structure is really important.”

The Diagnosis

Coffman explained how Jordan was developmentally delayed from a young age. He walked and talked much later than most children do and looking back, she remembers how he would rock back and forth in his high chair when he was nine months old. He didn’t sleep well, most often falling asleep in the evenings for a couple of hours to wake up at midnight and would be awake for the rest of the night. This was exhausting for Coffman as she was also working full-time outside the home.

Another symptom Jordan displayed was lack of interest in toys that most little boys his age would play with, such as trucks and blocks. He wanted to play with shoes, and he had an obsession for umbrellas. Coffman and her husband Jeff soon decided to take Jordan to a doctor to find the underlying reason for his behavior.

“We started with a pediatrician, then went to a pediatric neurologist, then pediatric psychiatry, but the pediatric neurologist was actually the first one that made the diagnosis of autism,” she explained. Jordan was diagnosed before the age of four with high-functioning autism. She explained how she doesn’t think there are any two forms of autism that are identical as there are a vast range of symptoms. You can have autism and be a genius and you can have autism and be severely retarded or could be anywhere in between.

Challenges

Finding daycare was a challenge, especially after Jordan’s primary provider moved out of town when he turned four and he had become attached to her. It was then that Jordan started going to Early Childhood Development at Stewart Elementary School and his behavior problems started to surface.

Jordan started to display aggressive behavior throughout his early years of school. When his behavior became more aggressive, his pediatric psychiatrist in Sioux Falls brought up the possibility that the LifeScape facility might be beneficial for him. When Jordan’s step-dad, Jeff, passed away, Jordan’s behavior became more challenging and regular habits such as going to the bathroom became more difficult. Developmentally he started going backwards; Coffman and the school system agreed to Jordan trying LifeScape. He was sent for a 30 to 90-day trial of the facility and has been there since.

“It’s hard. You know, you take your 8-year old there, drop them off and drive away. It was hard. Very hard,” she explained. For two weeks after she dropped him off she could not have contact with him, no phone calls or visitations. She could call and ask staff how he was doing, but could not talk with him directly. They wanted to get him to adapt to the new environment. As a fellow mother, I can’t imagine the heartbreak that she felt.

Coffman would pick him up nearly every weekend and every holiday to come home. Because routine is crucial for Jordan, she would consistently pick him up on Saturday and take him back on Sunday.

Now he is trying a new behavior program and is in a points system where he needs to earn his privileges to come home.

Looking Forward

LifeScape allows Jordan to attend school up to age 21 and Coffman would like to see him continue with school until then. He has been working in the on-site store, learning about customer service while he helps wait on people. Jordan has been taking part in the facility’s sorting and wrapping program, helping to hone in on his skills, along with the laundry, cooking and shopping programs.

Coffman is hoping that Jordan may be able to advance to a supervised facility with other roommates or to an Adult Services facility. Because Jordan requires Professional Crisis Management(PMC) restraint when he has crisis behavior, where he needs trained personnel to help restrain him for safety, facilities that offer this are limited. Jordan is working hard on adjusting his behavior to remove this necessity.

Jordan still faces challenges, though it has become much better for him throughout the years. Coffman explained, “We have a hard time with a quiet voice. It’s hard. We’ll be at a restaurant and people are looking, like, why is that kid so loud?” Her comment brought to my own awareness that out and about, remember to withhold judgment about others. It’s like seeing someone parking in a handicap spot when they look fine, but truly they have a handicap that we can’t see. Don’t be judgmental. I think everyone can be reminded of that.

Awareness

Coffman explained that, prior to this interview, she was recently invited to do a radiothon on autism. She will also be attending a legislative social in Pierre, South Dakota to discuss the importance of LifeScape and places like it and was excited for the opportunity.“Be aware. It’s everywhere,” she explains that autism is more common that we realize. “The bottom line is keep it simple. Don’t treat them differently than you would anybody else. They are people, just as you are. Awareness is huge, because there is so much about it that no one knows. Keep it simple, be kind and become aware.”

Coffman continued, “I remember reading something when Jordan was first diagnosed…. It was ’10 things your autistic child wants you to do.’ The one that stuck in my head was ‘I have autism. I am not autistic.’” She explained how Jordan knows he has autism. He doesn’t know what it is, but he knows that things are harder for him.

In working with an autistic child, Lori recommended to keep it simple. “If you say something like ‘It’s a piece of cake,’ then you better have dessert. They are very black and white.”

“Jordan’s doctor explained it to me that he understands the things that he wants and the rest of it doesn’t make sense to them,” she continued. “And I have learned through the years that he is exactly right.”

Bringing Happiness

Jordan tends to bring joy wherever he goes. He has become very close with his older siblings and loves to Skype with them. One year for Christmas, he received a Santa suit that he badly wanted. He now looks forward to dressing as Santa every year during the Christmas season to visit others and spread holiday cheer.

“He has brought me more joy, he has made me laugh with some of the things that he says,” Coffman laughs. I could see the pride for her son on her face as she showed me a picture of them at the Great Wolf Lodge in Kansas City for Jordan’s eighteenth birthday celebration.

Coffman’s hopes for Jordan? She gets asked this every year for Jordan’s Individualized Education Program (IEP) meeting. “My answer is always the same. I want Jordan to be happy. I just want him happy.”

She smiled as she said it and I could hear in her voice that she truly wants nothing more than his happiness. A goal no different than most parents want for their child. And from what she’s done for Jordan, it appears that she’s put him on the right path and done a phenomenal job in achieving the same happiness for her son that he brings to the lives of others.