Mary Kay Betz knows all too well of the stares, the shaking heads and the insults that can occur when a parent and a child with autism are in public.
Such instances moved the Montgomery mom to tears more than once.
"When Riley was 2½, I took him to get his hair cut. When we sat down, he started to scream and wiggle away from me. An older woman next to me said very loudly, 'That is why I cut my kid's hair at home.'
"I started to cry and said my son was just diagnosed with autism and if I could, I would cut it at home, but I needed help. She shot me a mean look and said that I should get my kid help with his behavior.''
Five and a half years later, Betz's tears have dried and she is a warrior fighting for and helping other parents and children cope with a diagnosis, as she and husband, John, helped their son.
"When Riley was diagnosed, I was told he would never talk and would be institutionalized when he was older. I could not accept that,'' Betz says. "We spent everything we had in time and money to get our son back." Now Riley, 8, is in a typical classroom with typical children. "You wouldn't know he has autism.''
Betz has served five years as an Illinois representative for Louisiana-based Unlocking Autism, a national organization where she is marketing and research director. She joined the Lombard-based Autism Society of Illinois nearly two years ago as its information and referral coordinator.
Betz is spurred by the unpleasant memories, such as the time when Riley, then 3, became antsy in a store and began ripping price tags off clothing.
"A security guard came up to me and said that what I was letting my child do was illegal. He said if we didn't leave, he was going to call the cops," she says. "As the guard was talking to me, Riley went into a full-blown meltdown; he was on the floor screaming. I had to pick him up with him hitting me the whole time.''
But Betz says the good memories outweigh the bad.
"These events are burned in my mind, like they happened just yesterday. I keep them with me so I never take for granted the progress my son has made.''
Parents' quiet struggles
Shannon Garrison, a licensed clinical professional and nationally certified counselor with Community Counseling Centers of Chicago, has, for eight years, been helping parents such as Shelly Friede, whose son has Attention Deficit Hyperactivity Disorder.
Garrison, who has seen parents struggle to understand what might be wrong with their child, says sometimes a problem may not be easily diagnosed.
"At times, these kids can be negatively perceived by others and be labeled as 'the problem child' or that they are lazy."
Friede, of Chicago, says her son, Orion, 10, was diagnosed with ADHD at 6.
Although Orion has come a long way thanks to counseling, medication, an Individual Educational Plan and therapy, Friede, a single mom, says the pain of being judged as a bad parent remains.
"I was ridiculed for supposedly not paying attention to my kid. I was told to quit working, when I could not afford to, and that he didn't need meds.''
She remembers having to use a restraining hold she learned in an early intervention program when Orion acted out in public.
"Even though I was not hurting him, people thought I was being abusive. It was very humiliating. I went through an incredible amount of guilt-people tried to make me feel that way. I ended up second-guessing myself.''
These days, with Orion more than 4 feet tall, about 120 pounds and "built like a football player,'' Friede is glad she doesn't need to restrain her son. "His behavior has improved 100 percent. He is very intelligent. But he still needs strict structure and help.''
Kris Lonsway's son Jeremy, diagnosed on the autism spectrum at 3, remembers a time when he would have meltdowns and people would stare. "I felt like a bad parent," the Countryside mom says.
Jeremy didn't make strong eye contact, didn't play peek-a-boo and had meltdowns at play groups, she says. "By 18 months, he couldn't say five words, so we decided to start the (diagnostic) process. Back then, the pediatrician didn't know the signs. He and some of our friends would say, 'Oh, he's fine,' or 'my kid does that, too.' "
When they finally received a diagnosis, she says they got Jeremy as much therapy as they could, took him off dairy products, put him on a gluten-free diet with vitamins and nutrient therapy and treated him biomedically.
"We've seen a tremendous improvement. He is in mainstream kindergarten and is academically above average.''
How to cope with challenging behavior
• Be healthy yourself. That can be as simple as mom getting a haircut or having a date night with dad.
• Provide a structured, consistent and positive home environment.
• Parents should be the givers of all good things; meaning they should have control over what a child gets and doesn't get.
• Stay strong and set clear rules; children with disabilities need them.
• Learn what different behaviors mean and how to handle them effectively.
• Make sure the child, when possible, is part of the decision-making process.
Source: Autism Society of Illinois
Bill Bero is a freelance writer and dad living in Northwest Indiana.