Life on a Roller Coaster

For the mothers of children with autism, leaning on each other is the only way to weather the emotional ups and downs

By Heidi Hookman Brodsky 

In 1997, when Karen Beveridge of Kensington first learned that her son, Westin, had autism, she asked the neurologist what that meant for Westin’s life. “The doctor said, ‘It means he will never have a friend, he will never play a team sport, he will never go to the school your daughter goes to, your daughter will have to support him when you die. There is nothing you can do. Good luck,’” Beveridge recalls.

Beveridge could barely fathom what she was told. She stared at young Westin playing behind the Venetian blinds in the doctor’s office. “I just remember seeing this movie in science with these teenagers sitting in a corner rocking back and forth and banging their heads on the wall, and I thought (gasp) that’s autism. And, yes, that’s a very extreme form of autism, but that’s not autism per se…That day, I was devastated. And for two weeks, I was devastated. Then, I realized, how dare this doctor tell someone who’s been on this planet 700 days the things he’s not going to do in life…He is going to do these things,” she says.

Beveridge began the hard work to help Westin, now 12, and to teach him “everything…because a child with autism is not in our world,” she says. “They are not going to learn anything by observing and osmosis…and I mean anything.” She looked to find skilled people to work with Westin on his issues ranging from an inability to talk and communicate—he had no language at all—impaired motor skills, interacting with others, and his inability to know when he had eaten enough food to be satiated.

Beveridge says she never sat around in those early years with Westin feeling sorry for herself. She knew she needed to act and find ways to help her son and others like him. At a seminar at the University of Maryland, when Westin was 3, Beveridge first learned about the Cure Autism Now (CAN) organization. Soon after, she was asked to organize the local chapter of CAN, of which she is now president.

There are 15 women who belong to this small local chapter of CAN, and all but three live in Montgomery County. They meet once a month to pursue their shared goal: to find a cure for autism, which now plagues one in 166 children. Most of their meetings, follow-up phone calls and daily e-mails involve fundraising matters concerning the annual “Walk Now” for CAN or other major events to raise money for their cause. Last year the group raised over $1 million.

But, it is the emotional safety net the group provides that is most valuable to members. “After we cover all of our business, we always spend a good hour to cry or ask questions or share our experiences…it is one of the few times [we]…can feel normal and talk because there aren’t a lot of people who can really understand autism,” says Shelly Galli, a resident of Northwest Washington.

Adds Beveridge: “Your child has really bad months when you say, ‘I can’t do this anymore’…and then a friend from CAN calls and says…‘Come on, we can do this.’”

In denial

At a recent CAN meeting, 10 women sit in a semicircle in the Bethesda living room of Shari Berger. Berger and Susan Pereles of Potomac are the only two members who do not have children with autism. Pereles, one of the strongest fundraisers in the group, has a nephew with autism. Berger chose to join because she is a childhood friend of one of the members: Eva Scheer, mother of Cade, 5 1/2.

It was at around 18 months that Cade was first diagnosed with PDD (Pervasive Developmental Disorder) which, says Scheer, is doctor speak for autism. Scheer, a Bethesda resident, remembers when she first suspected Cade was different from her older child, Ben.

“Even at 4 or 5 months old, there was a motherly instinct…I’m not feeling this connection I felt with my first…Come 12 months, I would say to my husband, ‘Do you think Cade’s OK?’ and he’d say, ‘He’s fine, everyone does things at different rates.’ I wanted to believe that so badly.”

But the comfort in denial couldn’t last long. Scheer went online and did research before she and her husband, Mark, took Cade to the doctor who ultimately confirmed what she most feared: that Cade did fall within what is known as the “spectrum” for autism.

The first question that came to mind for Scheer that day in the doctor’s office was whether she could meet some adults who had autism. She held out hope that somewhere, there was someone who could show her the face of her son’s future. The doctor met her question with silence. And then, the severity of Cade’s situation really began to sink in. Scheer says she realized in that moment, “You never meet an adult who says, ‘Oh hi, I used to have autism, but now I’m doing great. I’m the president of this corporation. I can drive and I have a family.’ That’s what devastated me. I have never in my life met an adult with autism. I mean, where are they? I realized they must all be institutionalized. And, all my hopes and dreams for that child were shattered.”

Like Beveridge, Scheer decided that she needed to act quickly for the sake of her son. She spent days and nights researching autism and educating herself about the therapies that help children like Cade. At home, she set up learning centers with multiple private therapists and teachers to work with Cade on how to communicate and to learn. In private moments, Scheer admits, her emotional pain was often excruciating. “I cried so much behind the wheel of my car…I was so worried about him…Is he not going to be able to love someone and have them love him back?”

At first, Scheer was too raw to join CAN. She felt that holding out on joining that group was clutching onto the last hope that somehow her child might be the one that was misdiagnosed. Ultimately, however, Scheer came upon a quote that changed her course. She says, “It said ‘Action is worry’s worst enemy.’ And I was worried and so I took action…Part of being in CAN is taking action.” 

At a recent meeting, Arielle Dorros of Chevy Chase holds up a flyer that the group is considering as their publicity piece for “Walk Now.” It is a photograph of her daughter, 7-year-old Sarah, and the caption reads: “Every 21 Minutes Another Child is Kidnapped…By Autism.” Beveridge doesn’t like the word “Kidnapped” in the piece. She comments, “I don’t like the word ‘autistic’ either. Westin isn’t ‘autistic.’ He has autism. You aren’t ‘cancerous.’ You have cancer.” The group nods. But in the end, they all decide to use the flyer. Dorros explains, “A lot of parents describe the experience [of autism] as their child [being] kidnapped at 18 months.”

‘Pushed onto a roller coaster’

“I watch, as if from behind a wall of glass, other children living life—playing ‘princess’ and ‘cowboys,’ reasoning with their parents to stay up later, shouting out their favorite games…and I feel kicked in the chest because my son does not, may not, ever do these things. When their children have tantrums my friends laugh them off—they’re not worried that their child may still be throwing screaming tantrums when he’s 18. Even the sincerest friend cannot understand my desperation and grief.”

— Excerpt from an essay written by Whitney Ellenby of Bethesda, mother of 5-year-old Zack

Ellenby voices her anguish over Zack’s apparent lack of improvement to the other mothers, “I don’t mean to be negative, and I just say honestly what I feel…I’m in this group and I believe in it, but do I really believe in it?”

Hearing Ellenby’s despair, Galli jumps in with a story of encouragement about her daughter, Camille. “Listen to me. I did not think my daughter progressed at all from 3 to 5, maybe 6. Now, she’s almost 8. Language, spontaneous language, retrieval—not a ton—it’s coming…She walked out of the closet today wearing my high-heeled shoes!” Galli smiles. “This is not the kid that I had two years ago…I mean this is symbolic play! It’s happening and it happens. That’s all I can tell you.”

Ellenby describes being a mother to Zack as like being “pushed onto a roller coaster” without being able to get off. Though she says she wants and needs to believe in a cure, she isn’t as certain as her fellow members. She has tried some of the therapies the other mothers have tried, including a listening therapy with headphones and Applied Behavioral Analysis, an intensive therapy program. Each family chooses from a variety of therapies ranging from nutritional, speech, occupational, vision and/or floor-time therapy. All of this costs between $40,000 and $60,000 per year. But so far, Ellenby hasn’t seen much progress. What is perhaps most frustrating for Ellenby is the belief that if she can find the correct therapy, or “key,” as she calls it, she may be able to reach her son.

“Zack is such a bright child…it’s like the autism is sitting on top of his intelligence…I have not found the key to unlock it for him…I believe he can be pulled into our world and function joyfully in this world despite autism…but I don’t necessarily believe he will be cured,” she says.

‘Mask of normalcy’

Mimi Kirstein’s 8-year-old son, Richard, is an adorable, slightly chubby, beautiful brown-haired boy who loves to play with his older brother’s friends and most of all, loves video games. Most who see him with his family sitting in their floor seats at the Georgetown Hoyas basketball games probably assume he is like any other “typical” child.

Kirstein, of Potomac, knows the fact that Richard seems like other children can be a benefit at times. She says that kids with autism wear a “mask of normalcy.” It would be very difficult to pick out a child afflicted with autism from a typical child in a photograph. However, the appearance of normalcy can cause problems when “a situation goes awry,” she says. Richard might come up to someone at a restaurant and touch something on their table or yell out or scream at an inappropriate time or place. He has tickled or hugged a stranger. On vacations at the beach, he might go up to a group of children and decide to play with their toys. “His interactions with other people aren’t normal,” she explains. “You want to justify his actions—to protect him. But…do you owe an explanation to the world?”

Richard, like Westin and Cade, was diagnosed with PDD when he was around 2 1/2. Kirstein says, “‘PDD’ is a kinder way to break it [autism] to a parent.” But it would be a couple of years before Kirstein was able to tell the world that her son had autism. Like Scheer, she hoped somehow that he might recover, or that perhaps Richard was misdiagnosed. She didn’t want to label her son too soon. After a while, Kirstein says, “you try it out. You see how [‘autism’] feels coming off your tongue.” She began to talk to her family and friends about Richard’s autism. But still, Kirstein says, “It felt crappy for a couple of years.” Moreover, she couldn’t help blaming herself for Richard’s autism. “Did I fail somehow? Was all this for lack of being a caring parent?”

For Kirstein’s other children, Kylie, 10 and oldest brother, Zak, 12, Richard’s autism is just part of their life. Kylie says that she and Zak fight over which one will care for Richard in later years. Kirstein owes her older children’s maturity to the fact that there was tremendous pressure on them to be good and not have problems because she was so busy with Richard. The older two had to do a lot of things on their own while she had to focus on Richard’s needs. As a result, she tries to find time now to take special trips where she can focus on just her two older children.

But Kylie and Zak say they are not resentful. “To tell you the truth, Richard is fun,” says Zak. “He is special to me and he makes me grateful to have a working mind and body.” For Zak, the worst thing about Richard’s autism is when other kids make fun of him. There have been incidents, like one recently at a playground where children called Richard “weirdo.” Zak intervened and yelled at the kids, “Hey back off!” and then took Richard away.

A bad day in the ‘austism parent’s world’

All of the mothers share stories with one another of times when their children command unwanted attention in public. “You cannot fathom what a bad day is in the autism parent’s world,” says Beveridge. She tells of a time when Westin shrieked in the line of a grocery checkout and a woman behind her commented, “He shouldn’t do that.” Says Beveridge, “I looked at her and said, ‘Oh really, ya think? You think he shouldn’t be doing that? Well, thanks for pointing that out!’” Other times, Beveridge has had to stop her shopping altogether and take a shrieking Westin out of the store. She has sat on the curb outside of Whole Foods sobbing while holding her son. She says, “Don’t assume the child’s a bad child or the parent’s a bad parent…No one ever walked up to me and said, ‘Can I help you?’ They would just give you an evil eye…I would never get mad, I would just think, ‘Thank you, God, for giving me Westin, because what would happen if he were born to that person?’”

Not long ago, at Bethesda’s Montgomery mall, Ellenby and her son, Zack, were walking past another mother who was pushing her young son in a wheelchair. Moving wheels fascinate Zack, and he stopped to stare at the chair with his mouth open in amazement. The other mother, mistakenly assuming Zack was gawking at her disabled son, brushed past Ellenby muttering that she should instruct her son to be more respectful and aware of the disabled. Ellenby grabbed Zack and ran over to the other mother. “I told her, ‘We are more alike than you think.’” 

Ellenby explained that she knew exactly how that mother felt when she thought that someone from the “in” crowd was staring at her son. She understood how alone the woman felt and needed the other mother to know she was not by herself. For a few moments, the two mothers spoke together before they parted ways.

Writer Heidi Hookman Brodsky lives in Bethesda.