Parents at Perkins’ weekly support group meeting say it is “one of the first times they’re with people who get it.”
By BILL WINTER
The parent support group’s meeting is just getting underway when there’s a knock on the door. Everyone stops talking.
The door opens and a head peeks in. It’s Mary Sparks, a teacher from downstairs, and the first words out of her mouth are: “Everybody’s fine!”
Sparks tells one of the mothers, Michelle, that her son has a problem with his feeding tube. Michelle leaves to take care of it.
Ruth Silverstein explains what just happened. She’s the social worker who runs this weekly meeting.
“The very first thing our teachers are going to say if they come up is, ‘Everything is OK,’” she says.
“Because we all have that look on our face,” says one of the mothers.
They all laugh a knowing – and relieved – laugh. Their children are “medically complex,” and any knock on the door could mean a life-threatening emergency.
That’s the reality of this Thursday morning meeting at Perkins School for the Blind. Every parent in the room has a young child who is visually impaired with additional disabilities. Their lives are packed with medical appointments, consultations with specialists and home visits from Perkins teachers of the visually impaired.
This meeting is their one opportunity to take a deep breath and relax. To share stories, advice and confessions with the only people who really understand what they’re going through – other moms and dads in exactly the same situation.
It starts with a song.
Parents arrive at Perkins around 10 a.m. for their support group meeting and drop their kids off in a classroom. It’s bright and cheerful. There are cute animal stickers on the wall, and piles of soft cloth toys for the children to play with. Sunlight streams through the windows.
Trained volunteers, ranging from college students to retired seniors, will work with the children while the parents meet in another room. But first, everyone gathers in a circle.
A music therapist strums a guitar while everyone sings, “Hello to Jackson, hello, hello, hello!” They go around the circle, welcoming each child by name.
This musical circle time happens three times a week. There’s a Monday support meeting for families of kids who are blind. Tuesday, kids with low vision. Thursday, medically complex kids.
Perkins has been holding parent support group meetings for about 30 years. Social worker Cristina Valente has been facilitating Mondays and Tuesdays for two years. Silverstein, from the Thursday group, has been doing it for 17 years.
“Parents say to me this is really one of the first times they’re with people who get it,” Valente says. “They say, ‘I feel at home here.’”
“Parents tell us that this can be a lifeline,” says Silverstein.
The weekly meetings are hosted by Perkins’ Infant-Toddler Program, which offers home-based early intervention services to families with children who are blind, from birth to age 3.
Parents come from every background. In a typical meeting, you might see anything from colorful tattoos to fashionable silk scarves to an attentive service dog; and hear accents that originated in Boston or Texas or Latin America. The only thing all the parents have in common is a fierce love for their children.
The meeting agendas vary. Once a month there are guest speakers, like optometrists, disability advocates or fellow parents. Other times it’s open discussion.
“The parents really drive the group,” says Valente. “Ruth and I are always saying, ‘What do you want to know more about?’”
Michelle has returned from fixing her son’s feeding tube, and the Thursday meeting is back on track.
Five moms sit in a square on comfortable chairs and couches. In the center table there’s a bowl of snacks: Goldfish, chips, crackers. Coffee is brewing down the hall.
Michelle is talking about “mom guilt” – but not the casual, laugh with-your-friends kind. (These meetings are confidential, so only first names will be used.)
Michelle’s 1-year-old son Jackson has CHARGE syndrome, a complex genetic condition that causes deafblindness and other serious health complications. She noticed a bulging spot on his skull and asked his doctors to look at it. They dismissed her concerns.
“Everyone was just like, ‘No, it’s fine,’” she says.
Months passed before one specialist finally said Jackson might have a dangerous condition called craniosynostosis, where a child’s brain is growing but the skull can’t expand to accommodate it. Jackson can still get surgery, but they missed the ideal time to do so.
“It eats away at me because I knew something wasn’t right,” Michelle says.
Silverstein reassures her. “The thing I’ve learned from all the parents over the years, you do learn as time goes on to trust your instincts,” she says.
The other moms take turns talking about the challenges their children are facing.
Ranika’s son James had a tuberculosis scare. Alma’s school district wants to send her daughter to a program that’s 45 minutes away. Maria’s son Jack was aspirating – getting liquid in his lungs.
The meeting ends on a lighter note, as they share stories about the new-parent jitters they all went through, magnified by the difficulty of having a child with multiple disabilities.
“I remember when James first had hiccups,” Ranika says. “I was like, ‘This is scary! Why is my son doing this?’”
It’s moments like this that make Ranika appreciate this Thursday group – when laughter temporarily pushes back the stress that’s a constant part of their lives.
“It’s all been so helpful, because I would have had no idea how to handle even half of the things that come at you with such complex children as we have,” she says. “I love this group.”
In a bright, cheerful classroom, volunteers work with the kids while their parents meet in another room.
There’s a guest speaker at the Tuesday meeting.
It’s Teri Turgeon, director of Community Programs at Perkins. She has a daughter who’s blind, so she speaks with the voice of experience.
Today’s topic is transition – when a child turns 3 and is eligible to attend pre-school. Children age out of early intervention services and become part of the educational system.
All five mothers in the room have a child who is facing transition. Their children have low vision, so it’s less complicated than it will be for children with multiple disabilities – but it’s still a big, scary step.
Turgeon reassures them. “No one knows your child better than you do,” she says. “You have a lot to contribute to the process.”
During transition, parents must navigate a thicket of experts, options and opinions. The local school district will assess each child, and determine what special education services he or she might require and which program is most appropriate.
Sometimes, a school district may suggest a different level of services for a child than a parent thinks is appropriate.
It’s important to remember that everyone has the same goal, Turgeon says.
“Everyone is working to ensure that your child makes progress,” she says. “It’s not meant to be adversarial. If you live in a city or town you plan to stay in, you want to maintain those relationships (with your school district).”
Turgeon walks the mothers through the entire transition process and gives strategies and practical advice to help them get what’s best for their child.
The parents pepper her with questions: What if they disagree with a decision? When should their child get a mobility assessment? What if they move to another town?
Jennifer, whose son turns 3 in December, speaks for all the moms when she says, “Having a special needs child is one of those things that just slaps you in the face. You have to plan their future. It’s an unfair position to put parents in, but who else is going to do it?”
Perkins is always available, Turgeon tells her.
“If you ever need help along the way, if you need to talk to someone, you can always call us,” she says. “Don’t be afraid to reach out.”
Valente, the meeting facilitator who has shared these mom’s lives and struggles for the last two years, speaks in a gentle but resolute voice.
“You might go to the public school, you might have questions, you might still need to connect – and we’re always here,” she says.
Back in the Thursday group, the clock ticks closer to noon. Soon the parents will go downstairs to pick up their children and return to the “real world” of lessons, appointments and therapies.
Before they go, they’ll sit in the circle one more time and join volunteers to sing the gentle goodbye song: “Goodbye to everybody – goodbye, goodbye, goodbye…”
But they linger in the meeting room a moment longer, relishing the connection – the understanding – they share with the other parents. It’s something they find nowhere else in their lives.
Marvi looks at her fellow moms.
“At the end of the day, you know, we all have rare kids,” she says. “But when we come here, they’re all rare together.”
Getting the job done
Q&A: Making music at Perkins