A parent’s multiple sclerosis can be a heavy burden on children

Petula Dvorak
Columnist March 24, 2011

I hope Ava never becomes Alice.

Alice is a 19-year-old woman who blogs anonymously about changing her mother’s diapers. She lies to people about why she has no life and posts heartbreaking confessions about ignoring her mom’s screams of pain, then going back to her living-room bed to take care of her.

Petula is a columnist for The Washington Post's local team who writes about homeless shelters, gun control, high heels, high school choirs, the politics of parenting, jails, abortion clinics, mayors, modern families, strip clubs and gas prices, among other things. View Archive

One minute she hates her mom and wishes her dead; the next, her heart aches for the crying, tormented, immobile shadow of a person her mother has become. Every minute of the day she despises the disease — multiple sclerosis — that has done this to both of them.

Ava Henderson is a bouncy 9-year-old from Montgomery County who asks for a trip “to the brain guy” (“Neurologist, Ava,” her mother interjects) for some answers.

As far as the Hendersons are concerned, their entire family has multiple sclerosis, a disease that causes the immune system to attack the nervous system.

“It affects everyone in the family, not just me,” said Doug Henderson, a stay-at-home dad who got his MS diagnosis 22 years ago, right after he left the Marine Corps.

Everything the Hendersons do as a family, from school outings to the way their Cabin John house is configured to accommodate Dad’s scooter, is affected by the erratic and debilitating illness.

They belong to the full-disclosure school of thinking.

“We tell Ava anything she wants to know. We explain it very carefully, as best we can. Doug will look at charts of the brain with her so she can learn about it,” said her mother, Janine Henderson. “But we also have to remember that she’s 9.”

And there comes the delicate balance.

When a parent has a crippling illness, the roles can flip, often early. And the child becomes a caregiver, like Alice, and then the disease claims another victim.

The few studies done on the way kids react to having parents with MS show high rates of depression, anxiety and fear. They are more likely to have problems in school and in social situations.

Knowing all that, some folks try another approach: avoidance.

John Irons, a Bethesda doctor, didn’t tell his three kids about his MS when they were young, decades ago. He knew the devastating timeline for the disease and kept it to himself.

He couldn’t prevent them from seeing that he was having trouble walking and often fell. But he thought they hadn’t noticed the black circle of paper behind one lens of his sunglasses, to help him cope with the double vision that affects many diagnosed with MS.

Then he visited one of his son’s classrooms on open house night, and he saw the portrait the little boy had drawn of him. It had a pirate-style eye patch.

That, he said, was a clue that it was time to tell them.

There are courses of drugs that help tame the symptoms of the illness. But there is no user manual for how to help a family cope.

Liza Levenson is taking a shot at it.

The teacher at Bannockburn Elementary School in Bethesda remembers what it was like growing up with the disease in her family. Her dad couldn’t always go upstairs to kiss her good night. He was the one parent who couldn’t stand up for the ovations after school plays and couldn’t walk on unsteady ground because it hurt him too much.

His MS was diagnosed just eight years ago, but in the years before his symptoms had a name, it was the unspoken problem they all had to cope with.

As a teacher, Levenson came across other children who had parents with MS and who reminded her of herself at that age. She said they were “battling feelings of isolation, embarrassment and anxiety, and the overwhelming sense that no one else understands.”

Her idea was to create a support network just for these kids. When she told her dad about the idea, he hesitated.

“That would mean everyone would know I have MS,” her dad, David Levenson, told me.

Exactly. That part is so hard.

At first, he told her not to use his name and to find a picture of a stranger and say that’s him.

“I didn’t want to have anything to do with it,” he said.

But Dad eventually agreed with his daughter’s full-disclosure approach. Within five months, she created a group called DreamMakerS.

They have counseling sessions for kids, mother-daughter manicures, modified yoga, pizza parties and other outings. Most important, they talk.

The Hendersons work with Levenson. Ava has started talking to other kids like herself. Her father is helping other parents.

“I’m talking to a woman from Tampa right now who hasn’t told her kids, and she’s really trying to hide it,” he said. “I keep telling her, ‘Kids know. They know what’s going on.’ ”

Ava doesn’t flinch anymore when her dad falls. She’s stopped putting plastic bandages all over herself, finally understanding she won’t catch MS from her dad. And she’s ready to help her 4-year-old brother with that brain chart — when he’s ready.

No, I don’t think Ava will become Alice.

E-mail me at dvorakp@washpost.com or Levenson at info@msdreammakers.org.

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