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Schuyler's Monster

Michael May

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Schuyler Will Be Heard
(Robert Rummel-Hudson)
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Just because eight-year-old Schuyler Rummel-Hudson can't speak doesn't mean she doesn't have something to say. That's clear immediately, just from the way she's dressed on this rainy Saturday: bright bottle-red hair, pink camouflage headscarf, flower-print tee shirt pulled over a long-sleeved black shirt. She's got attitude to spare. And as soon as I walk in the door, she grabs my microphone and starts chattering away.

Schuyler has polymicrogyria. It's a rare genetic brain disorder that makes it impossible for her to form hard consonants. So she sounds about the same as she did when she was two years old. And the disorder also affects her motor coordination, making writing and sign language difficult. She uses an electronic device to form sentences.

But communication is still a constant struggle. She starts playing with her collection of toy mermaids, monsters and dinosaurs and then turns to her parents Robert and Julie Rummel-Hudson. For several minutes, her parents think Schuyler is trying to say "I am green." Finally she types it out on her speech device. "I am queen."

"I think of all the things she's tried to tell us over the years that are lost," says Robert. "But right now it's a little like having a foreign exchange student in the house. One who speaks a little English but not enough to get the big things across."

When Schuyler was born, Robert started blogging about his newborn daughter. At that time, everything appeared normal. "So for a long time I was writing about Schuyler as a baby," he says, "and it was this typical befuddled dad type of writing: I don't know what I'm doing, but let's figure this out."

Robert wrote about changing diapers, losing sleep: new dad stuff. But when Schuyler was one-and-a-half, it become obvious that she wasn't developing the ability to speak.

"As Schuyler's issues became more apparent," Robert says, "there became an urgency to my writing."

Robert changed the blog's name from "Citizen Rob" to "Schuyler's Monster." And more and more people started following Robert and Julie's quest to find out was wrong with their daughter. Doctors spent weeks testing Schuyler's hearing. It was fine. Then a team of doctors at Yale diagnosed Schuyler with autism. But that didn't seem to fit either. Robert says the stress and confusion started to weigh on his relationship with his wife.

"I think we were both so caught up in our fear that we almost resented each other for that," says Robert. "We wanted someone who would sympathize and give us answers. Instead we had another person in the house that was just as grumpy as we were and just as scared as we were. I don't think we coped at all, now that I look back on it."

He asks Schuyler to go into the next room to play. And then Robert starts to tell me about just how bad it got. He and Julie started to pull away from each other. They both started having affairs. And as a father, he felt like he was failing his daughter. He wanted to fix her.

"And there was a period where I considered suicide," he says. "It made perfect sense at the time. This idea that Schuyler would be better off with the memory of a father who could turn into whatever she wanted from him. As opposed to the reality of me -- this lost, cheating, sad father that was no help at all to her."

Schuyler had everything to do with pulling Robert back from the brink. It all came to a head when his wife Julie got fed up.

"She actually moved out, for about a week," says Robert. "But when she left, she left Schuyler with me."

Julie chimes in. "I needed to get myself together," she says. "I'm crying at work. I'm crying in the car. I said to myself, 'You need to step away. Regroup.' It was a moment of clarity."

And Robert was forced to take care of himself, and Schuyler. "It was one of the best weeks of my life," says Robert. "Not because Julie wasn't there, but because I was able to reconnect to this purpose. No matter how bad things got, there was Schuyler. And Schuyler needed to be fed, and Schuyler needed to be taken care of. And I realized, you know, I can do this."

Julie was thinking the same thing. "And I came back and realized that it could be so much worse," she says. "And I said, 'OK, we're going to deal with it. We're going to work through it for Schuyler, because she needs both of us.'"

Robert decided to share these painful moments on his blog in hopes of making people in similar situations feel less alone. And Robert got something back, something even more tangible. Insurance wouldn't cover the cost of Schuyler's speech device. So Robert added a fundraising page on his site. In just over a month, they raised $10,000 to pay for it.

Now communication has gotten easier. Not just with Schuyler, but between Robert and his wife.

"One of the standard pieces of relationship advice is that you shouldn't stay together just for the kids," he says. "I'm not sure that's true, at least not initially. We have this partnership with Schuyler at the core, and it's become really strong."

And with that, Robert and Julie head into Schuyler's room to play with her monster. It's purple and stuffed with cotton.

  • Music Bridge:
    Artist: Hauschka
    CD: Room to Expand (Fat Cat)


  • Comment | Refresh

  • By Venkatesh Ramesh

    From Plano, TX, 10/14/2014

    She is in my class! She is really nice, and does well in class. Very touching!

    By Chaya Kostelicki

    From Kent, WA, 02/29/2008

    That's incredible. I was worried when my daughter said her first word at six weeks, her second at eight months, then nothing until she was 16 months old. I took her to an audiologist, her hearing was fine, she started speaking the next day. I can't relate, but I wish I could.

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