Lives of the Mind

Story & Photos by Kate Flock

Amanda is a junior in high school, just back from a trip to Spain. Plants are budding in the warm spring weather, and she's looking forward to the prom and a long summer before her senior year.

She wakes, and outside her window the trees are barren and dark, and the clouds are heavy with an imminent snow.

“You’ve been in an accident,” someone tells her.

Nine months had passed since that trip to Spain, and three since the car accident which left her in the hospital with a traumatic brain injury.

Amanda, now 25, wasn’t the only one, either. That same year, there were a half-million other kids who suffered a traumatic brain injury in car crash. And statistics show another half million from other causes, such as physical abuse, the primary cause in infants; falls for toddlers; and bicycle or car accidents for grade-schoolers. Brain injuries usually happen after school, on weekends, and in the warm summer months. They especially happen to boys.

For 30,000 kids, the result is a permanent disability.

Some of those kids, including Amanda, have been fortunate enough to find the Ivy Street School in Brookline. The school is one of a few in the country that specialize in teaching students with traumatic and acquired brain injuries. ABI’s can be caused by stroke, anoxia, insulin shock, lead poisoning or crack cocaine exposure. Over its 10-year history, the school has grown to also include kids with neurologically based difficulties, such as epilepsy and Asperger’s syndrome.

The School

Ivy Street School is nestled behind Amory Park. Originally a mansion, it’s barely noticeable among the other stately homes which border a quaint common. It’s a small, mainly residential school, with about 25 students at any given time.

“The students and their families were sort of stuck between definitions of who the students were in the world. So the [State] Department [of Education] started to look around for people who would be willing to try and form a school for these kids,” said the school's Director, Ron Allen, who came to ISS not long after it was founded. “The vast majority of our kids have come from school systems and settings where they are stigmatized. They struggle with things and are made fun of a lot. They are kids, so they goof on each other, in other ways, but [at ISS] nobody hears that they’re retarded or stupid.”

In the classroom, things seem pretty loose. If a student wants to get on the computer or is having a bad day and wants to be alone, he can do so. But soon it becomes evident that there is an extremely well-thought-out structure to the school.

Robert and Marjorie, whose son John attends ISS, compare it to his previous school in New Jersey. “The polices are 100 percent opposite. Jersey was very touchy. Here they don’t put that stuff in, they don’t feel sorry for you. You gotta do what you gotta do.” says Robert.

“The first time Johnny came in,” says Marjorie, he went to Ilene Lieberman, a director at ISS, and said “Can I have a hug?’ and she said ‘Oh no, no, no, we don’t do that here.’ He looked like he’d been slapped right in the face. But he’s come so far [away] from that kid glove type of atmosphere. He needed structure and that’s what he found here.”

Literally every hour is scheduled for each student. Each night, they write the next day’s schedule in their day timers. Every 45-minute period of their day is assessed with them, and the kids receive a certain number of points, depending on how they’ve met their goals. The points add up to different levels, and each level affords a certain amount of privileges.

The kids are held to high expectations, but they are also given validation and respect. If a student doesn’t feel well, their complaint is taken with complete seriousness. Negative vocabulary is not used. Questions such as "is that appropriate behavior ?", rather than statements like “don’t do that” are used.

“It’s like mirrors we put up for them. Just all these mirrors, it’s not about bad or good,” said Jana Dublin, the school's clinical coordinator.

Anthony

Anthony, 18, has a quiet seriousness about him. He gets to go home every day because his family is nearby. One of the best athletes at the school, he looks like any ordinary teenager. In fact, at the Special Olympics, the kids from Ivy Street are often questioned as to why they’re allowed to compete.

Anthony was diagnosed with a seizure disorder when he was only 8 months old. Before he came to the school, he had never had a good night’s sleep because that’s when his seizures would happen.

“He came in with a bit of a chip on his shoulder,” recalls Jana , “partly because of how he presented himself at his previous school setting. He did not want to let go of the popularity he had achieved there. Also because of the social environment of his own particular neighborhood. We’ll never know for sure how, but he came in here with an incredibly tough veneer, and over the 2 1/2 years, it’s been extraordinary to watch how he’s gradually become the nicest, most accommodating, thoughtful [person].

“Once he sort of figured out that this was an accepting, caring, supportive community, that nobody would make fun of him, that he didn't have to brandish knives, or claim to have killed x number of people, or who knows. Those things didn’t count around here. He didn't need any of that. He demonstrated his prowess on the basketball court.”

William

William went to Ivy Street for six years and lived at the “cottage”, a nearby two-family home where some of the more independent students live. He has a strong and resilient personality.

“People with brain injuries are not stupid, they’re not like crazy or anything. They just need a little bit of extra help.”

William is free-spoken and he often goes on a sort of stream of consciousness.

“When I was 4, I was upstairs playing, and I was like ‘I wonder if I can fly, like Superman?’ So I jumped out the window, out of three floors, and I was like ‘Man, I ain’t Superman !’ and I didn’t cry or nothing. I got up and was mad ‘cause I couldn’t fly.”

“When I was 15, I hit a guard rail at 120 mph. Without a seat belt on. I stole my mother’s car and went to my girlfriend’s. I went to her house, took her out, took her out for a ride in Boston. And I was on that highway right up there…I think 495…"

After the accident, he was in a coma for nine months. As a result of his injuries, he has ataxia, which causes uncontrollable muscle spasms in his hands.

“I can’t be in the Marines, I can’t be in the Army, I can’t be in the Air Force. I was gonna be in the Marines, just like my dad, because I look up to my dad. He’s an important person to me. I respect him.

“I don’t really agree with my mother all the way. My mother won’t let me do anything. She won’t let me go for a walk to my friends house. [She’s afraid] that I’ll smoke, drink…smoke weed. You know I used to smoke weed all the time, to slow down my ataxia.”

William knows what’s happened to him. All the students do, to various extents, and some accept it more than others. “Maybe if I pray to God, my ataxia will stop. You can fix all these body parts that are broken. You can fix everything, you can fix your brain.”

“I look at this place as a miracle place. It’s a place that I can go get healed. I’ve been growing.”

Because William turned 22 this fall, he had to leave the school. He's now living in a group home with three roommates. He really wants to go back home, but couldn’t because he says his parents don’t know how to take care of him. His long-term plans are uncertain. His hopes are in constant fluctuation, by the day or even by the minute.

“I’m scared of deeply looking at myself in the mirror. I mean I look at myself in the mirror all the time, because I think I’m no.1, but I’m just scared of my life. I’m scared of what the future holds for me. I don’t wanna go on anymore. I can’t live like this. I’m not thinking about suicide. No, I can’t suicide myself because I’m not that kind of person. I’m better than that.

“I just take it each day, take it special, because I’m alive, take each day special. Each day is better than the last day, because I’m alive.”

John

“When we started off, New York was no place to take a kid his age. They wanted him in psych wards and everything else,” recalls John's father, Robert. John, now 18, was in a car accident when he was a toddler, and he's been at ISS for three years.

“We had so many bad experiences prior. So much time lost,”explains his mother Marjorie. “He was three years in another school, where he went backward. He wasn’t even diagnosed with TBI, it took nine years to get the diagnosis. We fell through every crack in the system that there was. Everybody tried to put him in a little box. First it was schizophrenia, then it was epilepsy, then it was episodic dyscontrol. Finally, we found a young woman doctor, and as soon as she met him, she said this was classic traumatic brain injury.”

They had looked at Ivy Street when he was 12, but there wasn't a space available. “I had just a mother’s instinct, and John did too, that this was the place that could help him. They had to make up for those three years and then go forward. They’ve done a wonderful job.”

Amanda

Amanda breezes into the Starbucks in Allston, just down the road from her Brighton apartment. She’s just come from lunch with her boyfriend, Glenn. It's been eight years since the accident that changed her life and two years since she graduated from ISS.

“I don’t ever remember even having my license. They had a lot of posters in my room, like my nurses wrote me, told me exactly what happened. I stayed in the hospital for another three months. I couldn’t walk. I had physical therapy, occupational, speech. I got hit on my left side of my body, but it was the right side of my brain that bounced, so it’s my left side of my body, is really what’s affected.

After all her hard work in the hospital, Amanda expected she would be going back to her high school. But that was not the case.

“My dad had to hire all these lawyers...but [the school] couldn’t accept me.” After that, her father started working with Ilene Lieberman, Director of Admissions and Outreach Services at ISS.

“I don’t even know really how hard he tried to get me back in there...I think they knew, the doctors had told them, “She has a brain injury and she’s obviously going to need to learn to do everything over again. She’s gonna need to be somewhere, go somewhere that can re-teach her that. But my school wouldn’t accept me. They just weren't able to teach someone like that. So they had to pay for me to go to Ivy Street.”

She didn't want to go. “At first I hated it. And they’ll tell you that too. Just the whole reason you’re there can make anyone hate it. But now I love it. When you look back on it, you know why they did stuff and you can understand better now that you’re out of there and healed more. You can understand why they do it this way.

“At first my friends used to come visit me at Ivy but then, it was like they were all going off to college at the end of that year anyway. And they all kind of scattered, and I got used to it. It was hard though. I mean they all put pictures up all over my room, they all came to see me in the hospital. They didn’t want to have to drag Amanda around, or worry about Amanda. It was hard, but it’s over.”

Amanda feels she wasn’t able to break through the stereotypes her old friends had, that she herself had before the accident.

“But that's their problem. It was my problem and I was feeling it for a long time, but then you just realize one day that it’s just their problem. Everything I thought, or I just perceived with someone with a brain injury, like 'those people that walk funny, they must be so weird’, and all those things you thought in high school, because none of you’re friends were like that - it’s just so not true, it’s just so not true. And if other people would take the time and introduce themselves to three weird people they see walking down the street each day, then they might make a new friend.”

Now she has new friends, like her co-workers from the Boston Ballet, where she worked for two years. She was laid off, but now she has an office job with a company near Braintree Rehab Hospital, making it easier when she has to visit her neurologist, or have Botox injections which she takes to loosen the muscles in her arms and legs.

“My plans for life are still changing. I used to want to be a political scientist. I still do sometimes.” During her last two years at Ivy Street, she worked in the state house for Brookline State Representative Ronny Sydney. She may start college soon at Bunker Hill Community College.

“My life totally changed…I was in high school, and I was in with the cool people and I went out drinking every weekend…and it’s so not like that now. You have a whole new outlook on things, you just know, you know that you really only have so much time here, and that you need to do what you need to do.”

With that, she heads out to catch the T. She’s meeting a friend to see Shakespeare on the Common.

Jana

“I just said goodbye last month to Kevin, who has been here for 10 years.” Jana is the clinical coordinator at the school. “It was the day before he was leaving and it was his goodbye party, and I went up to him, and I said ‘Can I give you a hug goodbye?’ And of course we don’t touch here, but he looked at me and said ‘Sure’. And I hugged him and I burst into tears, and all the other kids are looking at me like, ‘What’s wrong?’ And I told him, ‘You know, I’ve just known you all the years that I’ve been here, and I’m just so proud of how hard you’ve worked, and all that you’ve accomplished...’”

“We work so hard to keep all that at a distance, but we’re family, like with Amanda. You know, they’re like my own children.”