So there they were on a beautiful evening last August, having dinner at the Grand Hotel on Mackinac Island, all four of them. Dad and Mom — Brad Conkey and Cheryl Matthews — and their two sons, Brendan, 9, and Liam, 11, looking handsome in their suits.
All sat quietly talking and smiling, calmly ordering their meals. It was completely and utterly normal, which is why Matthews started to cry.
“To think that we’re having the normal experience, when a lot of parents of children with special needs cannot leave the house, cannot take their kids anywhere. And just the feeling being relaxed, of sitting there and realizing nothing’s going to happen. And Brendan was intent on making sure his tie was smooth. His fancy suit. And after we had ordered, we’re just sitting there, and I’m thinking, ‘We’re having a very normal moment with our family,’ and there were these tears.”
Life in public is never easy or automatic or enjoyable when you have a child with autism. Conkey and Matthews knew this well long before their nice dinner out. They also knew, down to their DNA, the limits of Brendan, who has autism. They knew what caused meltdowns. They knew how quickly they could occur. They knew how to redirect Brendan’s attention, like, right now.
What they didn’t know was whether Brendan would benefit from seven years of therapy and intervention and be able to have moments — call them miracles — like nice restaurant dinners.
That’s what parenting an autistic child is all about: knowing and not knowing. In that regard, it’s a lot like parenting any child. All of the worrying, decisions, monitoring, guessing, hoping — it’s all the same stuff — only with children with autism, everything is exaggerated. Hugely exaggerated. Call it parenting on steroids.
None of this is what you expect when you give birth. It took until Mother’s Day, 2004, before they figured it out. That day was described in the February 2005 issue of Hour Detroit. The article, it turned out, played a role in the lives of this family. It described Matthews’ growing uneasiness about Brendan, then just 2. He hadn’t talked — at all — yet. He was strangely remote at times. His eye contact was unsteady. What tipped it all was when his great-aunt, a preschool teacher, voiced concern to Matthews on the same day Matthews noticed Brendan’s total oblivion toward a lively wrestling match between Liam and his cousins. It was as if Brendan, just a few feet away, were in another room.
That night, Matthews searched the Internet and realized with the first website that Brendan had autism. She cried the rest of the night.
After the big step of facing that reality came figuring out what to do. Conkey and Matthews, an Oakland County Circuit Court judge, soon learned that no one agrees on much of anything related to autism. To begin with, despite studies saying otherwise, many people, including Conkey, believe vaccines, which until a few years ago contained tiny amounts of a mercury-based preservative called Thimerosal, causes autism. You cannot talk them out of this conviction.
But that, at least, is beyond parents’ control. Treatment is another story entirely, and it’s a bewildering morass of choices. Treatments range from very expensive, one-on-one therapy to use of hyperbaric chambers — no kidding. That’s why Matthews and Conkey never have forgotten a woman who called after reading the 2005 article; she had an older son with autism. She wanted to help, she said.
“She told us what doctors to go to and what she thought worked,” says Conkey, a commercial real-estate appraiser. “We had no idea. She had been through all this, and she had done an unbelievable amount of research before she did anything with her son. And she basically laid it all in our laps. So we hit the ground running.”
They tried everything. They put Brendan on a gluten-free diet, because if kids are allergic to gluten without knowing it, Conkey learned, they can become like zombies. That didn’t seem to be the answer for Brendan. Next, they eliminated milk from his diet because it can act as a mild opiate. Brendan seemed to have more energy, more edge. Next, they tried mega-vitamin doses and B-12 shots. Nothing.
One treatment the woman who called said worked for her son was hyperbaric oxygen therapy, which is the medical use of oxygen at a level higher than atmospheric pressure. Hyperbaric chambers can deliver 100-percent oxygen to patients. It’s normally used for such things as decompression sickness and carbon-monoxide poisoning, but some have begun trying it with disorders such as autism and cerebral palsy. This and most other autism treatments Matthews and Conkey have tried are neither rejected nor proved to work. Some seem to be effective for some children, some are not.
The chamber is expensive, but cost is less an issue than what works. “If we were sure it worked, you’d see one in this house,” Matthews says.
Next came chelation, a series of treatments using certain chemicals that are supposed to remove metals from the bloodstream, thus removing the effects of autism. Again, it’s not a proven cure, but some say it works. For Brendan, it did not. “You’ll find all these people who do all these alternative treatments,” Conkey says. “It’s all so tied in with your emotions.”
Meanwhile, undeniably effective was the intensive Applied Behavioral Analysis (ABA) at the Early Intervention Center in Birmingham. There, Brendan spent eight hours a day in rigorous one-on-one therapy. This kind of early intervention everyone agrees is effective — vital, in fact. It paid real dividends. “When Brendan started there,” Conkey recalls, “all he could say was, ‘More.’ ”
The catch? It cost $6,600 a month. After a few months, insurance ceased to pay. There were lawsuits and whatnot, but the fact remained that Brendan’s daily intensive dose was done.
Still, the dividends wrought by the ABA and Brendan’s weekly speech-therapy appointments at William Beaumont Hospital in Royal Oak developed his speaking and behavior little by little, until a little became a lot. Instruction in his special Autism Spectrum Disorders classroom in Birmingham also is improving his skills and overall development. The classroom has the newest technology and teachers who know autistic children well. These teachers and other experts say Brendan has “classic autism.” This means he is at neither the highest functioning level, called Asperger’s syndrome — barely noticeable to those unfamiliar with autism — nor is he at the lower functioning level, characterized by rocking, repetitive shouting, and severely remote behavior.
Today, life with Brendan has its regular challenges, especially when the routine is interrupted. But Conkey and Matthews have learned how to talk Brendan through his crises, so Brendan is far less likely to melt down and put his head through the wall, as he once did.
An example came on a recent day at the family’s Oakland County home. One of Brendan’s friends, an older boy who volunteers to visit every week, was late coming over. Then he called. Conkey took the call, and then shouted toward the family room, “Hey Brendan! Come here!” His tones were purposefully excited.
“What!” Brendan shouted back.
“Ryan just called, Bren.”
“Know what happened?”
“Come here,” Conkey said, and Brendan came into the kitchen.
What happened?” Brendan asked.
“You see how windy it is outside? A telephone pole came down and crashed on Ryan’s car! But he’s OK! It crushed the car; the telephone pole landed right on it! So he can’t come tonight, but that’s OK, right? It’s OK.”
Brendan bought it and calmly went back to his Wii. “You gotta make a story, and he’s all right,” Conkey says. This is just one example of what never could have taken place before Brendan’s therapies and his parents’ learning curve.
What’s more, Brendan is plenty smart. He reads well, does lessons, and can initiate conversation. His obsessive-compulsive disorder means he fixates on certain topics and phrases. He loves “knock-knock” jokes, for example, but he actually laughs at them — atypical of autistic kids and a joy to his parents. He knows everything about every U.S. president. (“Brendan, what president hated broccoli?” “George Bush [the first].”) He’s the most popular kid in his class and loves school; his parents already are teaching him about the middle school, high school, and even college he’ll be attending.
Brendan plays Wii and watches movies with Liam. Heswims and goes to Zap Zone to play games. The family enjoyed a Disney World vacation. During regular, long stays on Mackinac Island, Brendan rides his bike — by himself — around the neighborhood, waving to neighbors and storeowners, who all know him well. That was something Conkey pushed Brendan to do, while Matthews hung back, worried. This, too, is typical parenting. Dad pushes the kids to walk out on the limb. Mom stands down at the trunk warning the limb might break.
But best of all, today, Brendan is affectionate. As Matthews and Conkey sat at their kitchen table the day Brendan’s friend cancelled, Brendan came up to Matthews, hugged her and said he loved her. Most autistic children usually shun physical contact, even from parents, Matthews says.
“People remark on how affectionate he is, and I always say, ‘I didn’t give him a choice, because I mauled him.’ I kept kissing him, no matter what. He wiped off those kisses for a whole year. But I wasn’t gonna give up.”
I wasn’t gonna give up. Nothing better sums up the life of parents of autistic children.
Tapping Into Hope
On a recent day, Brendan Conkey, stood with his teacher in his public elementary school in Birmingham, illustrating how he performs many of his lessons. What he uses for these lessons is a far cry from mundane worksheets or old-fashioned chalkboards. It looks more like what young folks would call a “ginormous” iPad, and Brendan, who is 9 and has autism, loves it.
The freestanding device is a new piece of equipment in his school’s Autism Spectrum Disorders (ASD) classroom, and it commands immediate attention. That’s because it has a 42-inch interactive screen, sits on its own station, and is bright purple. Its actual name is the Touch Accessible Platform Interactive Technology, or “TAP™it.” It’s specially designed for use in teaching students with special needs, and it’s a fantastic new teaching tool for students with autism, says ASD teacher Liz Priebe.
On the screen is a math graphic, showing three squares, one with 100 blue bars, another with 10, and the third with just one. “Brendan is learning place value,” Priebe says. Brendan uses his fingers to circle or write down the correct answers. A moment earlier, he did the daily weather report — an equally colorful and interactive page, where he dragged symbols around the page.
“Kids with autism are visual and experiential learners,” Priebe says, “and they’re so engaged with this; it meets their learning style. They learn better by doing than listening to somebody talk. On this, we can do all kinds of cool things that otherwise we would be trying to explain.”
Combined with the actual iPads students use at their desks, teaching autistic children has gotten a lot more fun, for both teachers and students. “We used paper or Velcro, with lots of folder activities,” Priebe says. “But some of our kids’ fine motor ability is really affected. For them, paper and pencil don’t work out well.”
At first glance, the TAP™it, in fact, looks like and operates like a giant iPad. But it’s specially designed for children with disabilities ranging from traumatic brain injury and Down syndrome to autism and muscular dystrophy. The glass is shatter resistant and the station will not tip, even if students lean against it. The screen adjusts in height and angle. Most important is that teachers can load programs onto the TAP™it, or call up websites at will.
Visual learning tools like the iPad and TAP™it have in some ways revolutionized education for autistic pupils. “I haven’t seen anything that has impacted my instruction like this has,” says Priebe, a 20-year veteran who’s also the mother of a 32-year-old autistic son. “We‘re conveying a lot more than we used to and in an easier and more compelling way. It’s taking us beyond pure repetition and into kind of manipulating information.”