Brain Trust

I’m back from my three weeks on the road, beginning in New London, CT., where Ryan was attending Mitchell College. As you know from my previous post, he was having problems managing his life. I flew out and he looked terrible – disheveled, irritable, unfocused. It turns out, he was forgetting to take his meds and he wasn’t sleeping well. He also was taking pain medication that a local doctor prescribed for pain in his knee and back.

He stayed at the Radisson with me, and after two days of taking all his meds three times a day and getting sleep, he was back to himself. Still, when we returned to the dean of students after the Columbus Day weekend, Ryan and I decided he should withdraw from school.

It was sad to pack up all the Bed, Bath & Beyond towels and sheets, the shower caddy and desk lamp, the notebooks and desk organizer. But I’ve been through enough now to know this is just one more step in Ryan’s journey. And although it seems like a step back, in many ways it isn’t.

His month at college gave us important information about Ryan’s gaps. He was only 16 when he had his brain injury, so after acute rehab he came home instead of going on to the next level of rehab. He never learned how to manage his life, how to regulate his emotions, how to compensate for his poor short-term memory.

So we are talking with the Centre for Neuro Skills in Bakersfield to see if Ryan is a good fit for their residential program. An evaluator will be meeting with Ryan on Tuesday. Then we’ll go down and tour the place in the next couple weeks.

After Ryan flew home, I went on to Florida for book events. And I did another one last night in Redwood City, where the audience was mostly parents who have children with learning disabilities. The very best part of reading and speaking about my book is meeting all the other people who have walked similar paths.

The journey can feel so isolating some times, as if you’re the only one who can’t figure out your child, as if you’re the only one who feels utterly exhausted and defeated half the time, as if you’re the only one who wonders what happened to the life you thought you’d have.

But there are a lot of us out there – parents with challenging children, parents with injured children.

I hope you’ll share your story and best advice with me on this blog.

I’m on a USAir plane on my way to Philadelphia then Providence. From there I’ll drive to New London, CT, where my 19-year-old son, Ryan, is in his fourth week at Mitchell College. I was supposed to fly out next week for parents’ weekend. But the dean of students called yesterday. She put me on speakerphone. In her office were four other college staffers: the admissions director, the head of student housing, Ryan’s counselor and one of his academic specialists.

Ryan was behaving erratically, they said. He had blown up in anger several times, warranting an appearance in front of the school judicial board. He looked disheveled. He wasn’t taking care of himself. He seems to have befriended some homeless men in New London, which worried school officials. Several times, frustrated and overwhelmed by the demands of school, he talked about quitting school. But he was attending classes and showing up every week to see his specialists. And he was charming and cooperative, always Ryan’s saving graces.

Still, his behavior worried everyone. They weren’t sure if he could stay in the dorm.

“You should come out now,” the dean said.

My husband, Barry, and I were disappointed but not surprised. We knew Ryan’s brain injury would make it difficult for him to manage his own life. But he had exceeded all expectations during the month-long summer session for freshmen in July. He had done so well, in fact—bonding with an amazing group of friends, going to class, doing laundry, controlling his emotions—that I abandoned my plans to rent an apartment in New London for the fall semester. Instead, I filled my schedule with readings and interviews to promote my book, The Water Giver, which is about Ryan’s brain injury. I was feeling good about Ryan’s progress. He sounded great on the phone almost every time we talked with him.

The thing about a brain injury is it can sit so quietly you sometimes forget it’s there. Then it suddenly leaps out from behind a door and knocks you down. You never know where and when it will show itself or in what disguise. Will it be a rage that scares someone enough to call the police? Will it be a dangerous impulse to hold onto the bumper of a car and skateboard behind it? Will it be a boiling frustration that culminates in a bowl of pasta being hurled across the dinner table?

Barry and I are pretty sure Ryan’s problems at school are likely the result of not taking all his medication. He has to take pills three times a day for seizure, mood and extreme distractibility. Because of his short-term memory deficits as a result of the accident, and his increased impulsivity, he forgets. If he forgets enough doses in a row, he is irritable, even more impulsive and can’t sleep.

So here I am flying back to see him and get him back on track. I spent yesterday afternoon canceling a TV appearance, a brunch, a book party, a dinner and a reception for the Northern California Booksellers Association. I really don’t mind, if the truth be told. I miss him and can’t wait to see him. I can’t imagine what it’s like inside his head, how frustrating it must be to want something as badly as he wants to attend college and to have your own brain constantly sabotage him.

After reading a story in the LA Times on Monday, I wrote a letter to the editor that now seems prescient of the call I would receive from Ryan’s school the following day.

Editor:

As the mother of a brain-injured son, I very much appreciated the article Oct. 5 by Melissa Healy (“War injury leads to advances at home’’). As she pointed out, brain injury among the civilian population is a silent epidemic, with more than 5 million people coping with long-term disabilities from head injuries. As diagnoses and acute care become more sophisticated and effective, thanks to medical advances by the military, fewer patients die. What has drawn less attention so far is the lack of therapies and treatment for those dealing with the fallout of their injuries. Like many brain-injured people, my 19-year-old son, who fell off a skateboard without a helmet, grapples with anger, impulsivity and cognitive processing. But once his acute rehabilitation was finished, we were pretty much on our own to figure out how to help him move forward with his life in a safe and productive way. I hope the funding streams going to the military for brain-injury research yield answers for the rest of us—and soon.

Amen.