Support Groups

Willie's Story

"We grew up in West Roxbury, four of us kids. Willie was the smartest, and everybody liked him. At Roxbury Latin they called him Wee Willie Walker or W3. He got a full scholarship to Amherst College and was a Greek and Latin scholar. I would call him with my Latin homework and he’d translate it over the phone. He was that smart.

He came home for Thanksgiving vacation his freshman year and was driving around with friends, sitting in the back seat, when they had a fender bender. Willie hit his head. It was 1973 and passengers in the back seat weren’t required to wear seat belts. They sent Willie to the hospital and he had a massive cerebral hemorrhage. If my mother hadn’t been there with him he would’ve died. The stroke left him blind, paralyzed on the left side, and without any short term memory.

They brought him home and he stayed there with my mother for thirty years until she died in 2002. He was the center of attention. My mother took him everywhere. She took him to classes at Harvard extension, but without short term memory he couldn’t learn anything.

When my mother died, my uncle stayed with Willie in the house until it became too much for him and we put Willie in a nursing home. They kept him clean and fed, and put him to bed, but they left him alone and he didn’t have anything to do. There was no one for him to talk with and he began to decline terribly. Mass Rehab sent someone over to talk with him every week, and finally they told us they could place him in a community residence as part of the Rolland consent decree.

When he moved into the house on Summer Street his life improved dramatically. The house manager worked with us to reduce his medication and Willie began to emerge from his shell. He’s very funny. The nursing home overmedicated him to make it easy for them.

At MAB Willie has a real life. He loves going to his day program and living with the guys at Summer Street. There’s always a lot going on, and it gives him something to talk about. We come over every Saturday and bring lunch for the guys. That’s a big treat. Willie loves French toast and fried chicken. He has his favorite TV shows. Lawrence Welk is his favorite, though he admits it’s kind of corny. He loves the staff who work with him.

Willie’s the kid who went from being number one in his class, tops on the sports field, and the most popular guy socially, to being just so limited and needy. All the things he thrived on were suddenly gone. It can happen to any of us."

Based on an interview with Willie’s sisters, Annie and Joanie. Willie, in his 50s, lives in Hyde Park.

Brendan's Story

"When Brendan was born he was beautiful but he had a big head. The doctors did a lot of testing but concluded that we must have a lot of big heads in our family. By the time he was eighteen months old he was behind on all his developmental milestones and it was clear that he was delayed. He was so sweet and loveable but he wasn’t progressing according to the normal timetable. We got him involved in early intervention and the doctors recommended a wait and see approach, so I was surprised when he was ready to enter kindergarten and they recommended a totally separate special needs classroom.

Right from the beginning school was a nightmare for Brendan. The other kids teased and made fun of him, even in a special needs classroom. He didn’t have any friends. They called him names. It made me so furious. I felt helpless. There was nothing I could do to protect him.

When Brendan came to the Ivy Street School was the first time he really felt safe. No one made fun of him. He didn’t have to feel ashamed. Everyone accepted him for who he was, and he progressed. I’ll never forget the day he called me as he was walking to Trader Joe’s by himself for the first time. I was so proud of him, and so happy for that independence.

As an adult he’s really blossomed. He has a job washing dishes at Matilda’s, a coffee shop in Watertown. They love him there. He works there five days a week and volunteers walking dogs at the MSPCA. He met a girl at the MSPCA who he likes, but was too nervous to talk to for a long time. He recently broke the ice with a conversation about Harry Potter. He blushes when he talks about her. He lives in a group home in Brookline with four other guys his age. He knew a couple of them from Ivy Street. In a few years we hope he’ll be able to move towards having more independence. He spends a lot of his free time reading. He loves Stephen King, the scarier the better. He loves walking to the Chinese restaurant near his house and grabbing dinner. He loves watching movies with the family and going tubing in the summer.

I love that he has a real life like everyone else. It’s so important that he’s been treated with respect and given choices about the life he wants for himself. He’s a contributing member of society and has relationships with people that make him happy. That’s all I want: for him to be happy.

At Ivy Street Brendan did a stand-up comedy routine in the talent show. He was amazing, so comfortable in his own skin. I asked him how he learned to do it. He said “Sometimes I study other comedians. Maybe I’m just gifted.”

Based on an interview with Brendan and his mother, Toni. Brendan lives with four other guys in their twenties in Brookline.

Beth's Story

"Beth was born on the way to the hospital, a hundred yards from the entrance. I read that music helps you get in rhythm for child birth, so I sang “Yankee Doodle Dandy.” Bob didn’t know the words, so he sang “Be Not Afraid I Go Before You.” In retrospect, these words have been the spirit that has guided Beth’s life.

It was worrisome when Beth wasn’t developing according to the normal growth charts: turning over, standing up, talking. At 18 months we started early intervention, travelling 45 minutes each way. I had planned to go to grad school. When Beth was born, she became my grad school.

She went to Groton public schools through fifth grade, always in a mainstream classroom, because we thought that being with normal children would provide constructive models for Beth. Each year was different, depending on the particular teacher. Her second grade teacher was wonderful; she planted gardens with Beth and had tremendous patience. We looked at school as being a place for Beth to develop socially and feel like she was a part of things.

Beth can’t be described by a single diagnosis. A lot of her issues are language based, and while her ability to communicate developed slowly and sporadically, her ability to make herself understood depends greatly on how comfortable she feels in the environment. Now is never where Beth is. She’s always in the past or future. A lot of the pain she felt at school she couldn’t talk about until years later.

Sixth grade was a disaster. The teacher, who sat way over on the other side of the room, couldn’t understand Beth whatsoever. Everything was so complicated: different colored folders for each subject. I spent hours in the classroom trying to help Beth get organized. It was clear that she would never be able to succeed and go on to middle school where they had to change rooms for different classes and the cafeteria was noisy and confusing. We advocated for Beth to leave the public school setting. She did a year at the Lab school, then six years at Cotting as a day student. She spent a lot of time on the bus.

Ivy Street was the next step, where she could learn to live more independently in the community. It forced her to develop other aspects of herself so she could move on to having a full life as an adult. When she graduated, the Department of Developmental Services said she was too high functioning to be eligible for residential support. She couldn’t come back to Groton because there’s nothing for her here: no peers, no jobs, no transportation, there aren’t even sidewalks where she could safely walk to the store.

DDS reconsidered, and Beth now lives with two other women in Newton, with staff available overnight if needed. Special Olympics have always been important to her, feeling the joy of being part of the team. She works at the Jewish Community Center as an attendant, folding towels in the women’s locker room, and volunteers at the Watertown Public Library. She feels good about her jobs, the particular skills that she’s mastered. She’s active in the Asperger’s Association and goes to their monthly pizza and games night. She just went on a trip to one of the Harbor Islands with them.

Beth has a pretty full life now. We’re in our 60s and our goal is to be able to fade back and feel secure that Beth has a good life."

Based on an interview with Beth’s parents, Nancy and Bob. Beth, 26, lives in Newton.

Tim's Story

"Before Tim was born we knew something was wrong. They did an alpha/beta protein test when I was pregnant and said there was a big chance he’d be disabled. I chose to have Tim.

Timmy was a funny looking kid right from the get-go. His eyes couldn’t focus and he couldn’t hold his head up. He was floppy. The doctor gave him a CT scan when he was six weeks old but the results were inconclusive. I put the phone down and cried and paced. A pediatric neurologist did an ultrasound of his brain and diagnosed agenesis of the corpus callosum.

Tim started early intervention at four months, took his first steps when he was 2 ½ and didn’t start talking until he was 3 ½. When he was nine they put him into an integrated classroom and that was the worst. The teacher was determined to teach Timmy to read and write and he reacted with terrible behaviors: spitting, hitting, punching, kicking, yelling. You name it, he did it.

He started at private school as a day student but after a few months I became totally frazzled. My ex husband was long gone, and I was trying to take care of Tim and his brother by myself. Tim was totally out of control; he broke his brother’s tooth with a hammer, and put a magnet up his nose. The behavior specialist said that Tim having both agenesis of the corpus callosum and Sotos Syndrome was like having my house hit by two bolts of lightning at the same time.

Tim became a residential student at Ivy Street School when he was almost 15. When he started he had to be restrained five to ten times a day, but after a couple of years everything changed. The structure and consistency were perfect for Tim. There were no ifs, ands, or buts. If you were on consequences for bad behavior you couldn’t go out. It was a while before Tim could go out. About four years. But finally he got it.

Tim got a job walking dogs at the MSPCA. He loves dogs, and it made him feel good about himself. He works stocking shelves at Trader Joe’s. He’s doing good there. He talks too much to his co-workers, but he’ll do anything that they ask him to. He needs constant repetition and reminders about how to act, but he’s learning.

Tim likes to be independent. I can remember at Ivy Street when they wanted him to go to a corner store by himself. I was having heart failure over this. We worked out a plan where he would do it many times with a staff member and then do it with a staff member shadowing him, and then they got him a watch and told him to be back by a certain time. I was amazed.

Tim has been my best teacher. He has taught me patience over and over again. He has taught me perseverance. He has taught me that the glass is more than half full; it’s all the way full. Tim has a great, great heart. He’s taught me to look at the bright side."

Based on interviews with Tim and his mother, Jane. Tim, 25, lives in Brookline.

Willie's Story

"We grew up in West Roxbury, four of us kids. Willie was the smartest, and everybody liked him. At Roxbury Latin they called him Wee Willie Walker or W3. He got a full scholarship to Amherst College and was a Greek and Latin scholar. I would call him with my Latin homework and he’d translate it over the phone. He was that smart.

He came home for Thanksgiving vacation his freshman year and was driving around with friends, sitting in the back seat, when they had a fender bender. Willie hit his head. It was 1973 and passengers in the back seat weren’t required to wear seat belts. They sent Willie to the hospital and he had a massive cerebral hemorrhage. If my mother hadn’t been there with him he would’ve died. The stroke left him blind, paralyzed on the left side, and without any short term memory.

They brought him home and he stayed there with my mother for thirty years until she died in 2002. He was the center of attention. My mother took him everywhere. She took him to classes at Harvard extension, but without short term memory he couldn’t learn anything.

When my mother died, my uncle stayed with Willie in the house until it became too much for him and we put Willie in a nursing home. They kept him clean and fed, and put him to bed, but they left him alone and he didn’t have anything to do. There was no one for him to talk with and he began to decline terribly. Mass Rehab sent someone over to talk with him every week, and finally they told us they could place him in a community residence as part of the Rolland consent decree.

When he moved into the house on Summer Street his life improved dramatically. The house manager worked with us to reduce his medication and Willie began to emerge from his shell. He’s very funny. The nursing home overmedicated him to make it easy for them.

At MAB Willie has a real life. He loves going to his day program and living with the guys at Summer Street. There’s always a lot going on, and it gives him something to talk about. We come over every Saturday and bring lunch for the guys. That’s a big treat. Willie loves French toast and fried chicken. He has his favorite TV shows. Lawrence Welk is his favorite, though he admits it’s kind of corny. He loves the staff who work with him.

Willie’s the kid who went from being number one in his class, tops on the sports field, and the most popular guy socially, to being just so limited and needy. All the things he thrived on were suddenly gone. It can happen to any of us."

Based on an interview with Willie’s sisters, Annie and Joanie. Willie, 56, lives in Hyde Park.

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