The Island Autism Group (IAG) was formed when two moms of little boys with autism, Kate DeVane and Marcy Bettencourt, decided over many cups of coffee at the Plane View restaurant that they wanted to find a way to provide services and goods for the autistic students in Island schools, services that went above and beyond what the school system could offer.
That was more than 10 years ago; the IAG is now a licensed 501(c)(3) nonprofit. Teachers, parents, doctors, and therapists can fill out a request on the IAG’s website, islandautism.org, for everything from iPads to drumming sessions to camp scholarships and communication software and more. The board of directors of the IAG considers each request for funding at its monthly meetings, fulfilling appeals for assistance for students and adults with autism.
A core group of a half-dozen or so parents logs hundreds of volunteer hours annually, helping the IAG fundraise and increase awareness in the community. Now they hope to raise enough money to expand the IAG’s support for Islanders with autism. A few of the volunteers — IAG president Kate DeVane and board members Kevin McGrath and Kim Leaird — shared their personal stories with The Times.
Kim and her boys
Families and community are all touched by those living with autism. Parents, of course, have plenty of anxiety-ridden moments. They have to think about the impact any small change in their child’s environment or routine might bring. They stand by, knowing their child will have to navigate noise levels, lighting issues, food options, communication, toileting, personal hygiene, social interactions, and a host of other challenges each time they walk out the door.
Kim Leaird is a single mom living in West Tisbury with twin sons, Sam and John. Her boys will be 13 in August, typically a tough age for those with autism, with the physiology of puberty and all that means for a child already saddled with communication, behavioral, and body-awareness problems.
The twins were born early, John with a congenital heart defect, when the family lived in Maryland. He had open-heart surgery at 3 months old, then he developed an antibiotic-resistant staph infection in his surgery scar, and needed an IV in his chest for more than a month. This left John unable to meet his physical milestones, so the county’s early-intervention program came to their house.
“At a year old he was not speaking, not babbling; he had no words,” Kim said. When he was 18 months old, his pediatrician suggested they see a developmental pediatrician, and eventually John was diagnosed at the Kennedy Krieger Institute at Johns Hopkins Children’s Center.
Early intervention helped John gain placement in an autism-specific classroom, where it became evident that he needed more intensive therapy, Kim explained. An applied-behavior analysis (ABA) specialist came to their house 16 hours a week, and John continued occupational and physical therapies as well. ABA is an often-used program that addresses adverse behaviors typically exhibited by those with autism.
The family moved from Montgomery County, Md., to Martha’s Vineyard when the boys were in the middle of third grade.
The important difference between John’s programming in Maryland and on Martha’s Vineyard is in the classroom makeup, his mother said. John had four or five classmates in a self-contained classroom with two para-educators to help with individual needs in Maryland. On the Island, John is part of the Bridge program at the Edgartown School. There, he has a classroom as a home base, with several different 1:1 educational support professionals who help him throughout his day, which includes attending regular classes with typical peers whenever possible. He participates in art and gym classes, goes to science labs when appropriate, and has participated in class plays.
Kate, Hap, and Mark and Maggie
In contrast, Kate DeVane’s son Mark, who is nonverbal, attends the residential Higashi School near Boston; his level of support couldn’t be met by the Island’s public school system. Mark has a twin sister, Maggie, who has cerebral palsy. They were also preemies, and required early intervention. The twins will be 13 in November.
“We all thought Mark was going to get sprung from the early intervention program; we thought he was all done,” Kate said. “By then he was walking and moving around,
and we were focused on Maggie. A woman came over from the Cape to sign off on his early intervention, but he wasn’t talking and was walking around the coffee table in circles, and she said, ‘You need to take him to be looked at, he has autism.’”
Kate and her husband Hap Bernard took Mark to Yale University, where he was diagnosed with pervasive developmental disorder (PDD) with global delays, a diagnosis that includes a broad spectrum of autistic markers. Both Maggie and Mark were then placed in the Project Headway program, the Island’s public school preschool program for children with and without disabilities.
“When I found out Mark had autism, I remember being brokenhearted, but at that time he was just a quiet little boy,” Kate said. “He smiled; he was an incredibly cute, typical-looking little boy.”
Then, when Mark was around 5 and still nonverbal, his behavior began to change.
“When he was about 5, it was like he was getting assaulted from all sides, with conflict between his interior and exterior self,” Kate remembered. Around this time, when Kate was holding him on her lap, Mark bit her on the cheek for no reason, breaking the skin. “I’m not someone who gets completely freaked out, and I thought, We’ll get through this, and he’ll be exactly like everybody else; this is just something I have to push him through.”
Cynthia, Kevin, and Connor
For Kevin and Cynthia McGrath, their early years parenting their son Connor, who is diagnosed as PDD-NOS (pervasive developmental disorder — not otherwise specified), were not exactly what they had imagined. Connor was a fussy baby early on, Kevin explained. “He had a great set of pipes on him at an early age,” Kevin laughed. “When we first brought him home, he was fussing and upset, we’d put him in a vibrating seat and that calmed him down.” Then when Connor got older, he’d get upset if they were riding in a car, so for a while, they couldn’t drive anyplace with him. Eventually that shifted, and riding in the car became soothing for him.
“It wasn’t what we expected, what people told us it would be like,” Kevin said.
Eventually, they enrolled Connor in a private preschool in Maynard, where they were living at the time. They thought it would be a typical experience, and Cynthia could once again focus on her work as a jewelry artisan while Connor was at preschool.
“Then we were getting phone calls from the preschool saying that they couldn’t handle him,” Kevin said. “He’d squeeze himself between furniture, and was not doing what the other kids were doing.”
Connor qualified for early intervention in the public school system, and that led to a trip to Children’s Hospital in Boston, and to his PDD-NOS diagnosis.
“We were in shock for a while,” Kevin said. “Our families found it hard to believe that was what was going on — PDD-NOS — we don’t know exactly what it is. Some parts are recognizable on the autism spectrum and some aren’t.”
The McGraths moved to Newton, where Kevin began teaching and Connor was able to get a range of services and participate in a school district that practiced full inclusion for all students. They moved to the Island in 2013 after spending summers here for years. Cynthia’s work is on the Island, where she sells her jewelry at the Island’s artisan festivals. Connor had spent every summer here, and it had become difficult to commute on weekends in the summer.
Kevin said he and Cynthia were somewhat concerned about what special education would look like on the Island, but Connor has adjusted, and is also part of the Bridge program at the Edgartown School. Next year, he’ll be a student at the high school.
Parenting a child with autism
Finding a full-time job with the flexibility a single parent of a child with autism needs can be nearly impossible. There aren’t many babysitters willing to take on the responsibility of a special-needs child, and there is no current program outside of school specifically for children with autism operating on the Island. Community Services offers family support resources and assistance through its disability services office, but not autism-specific programming.
“It’s difficult to work a full-time job,” Kim said. “And it’s hard now that John’s entering puberty; I’m just Mom, I’m not a male. We’ve had some rough times, but I’ve got family that supports me here, and I’ve got good friends, being involved in the Island Autism Group and the IPAC [Island Parents Advisory Council on Special Education].”
When John’s brother Sam takes part in school plays and other activities, Kim often has to choose between going to see Sam and trying to keep John happy. She said she wants to watch Sam, and wants John to support his brother, but John’s autism often takes over once they’re at a performance or other event.
“John has a really hard time sitting in an audience, sitting still, and waiting in lines. He needs to move constantly,” Kim said. “We went to see Elizabeth Warren, and we waited, and as soon as she took the stage, he started talking really loudly about going to the library. No amount of shushing would work, and we had to leave.
“How can I see Sam’s play in its entirety and make sure John is OK? How do I give John the opportunity to see his brother perform? There’s a lot of balancing between my two boys, and they have very different desires and interest. Autism makes doing anything as a family challenging, because I can’t be divided in two.”
Kevin said that he and Cynthia have seen a total of five movies at the theater throughout their 16-year marriage, and they’re wary of hiring caregivers they don’t know well so they could enjoy a night out.
A child with autism often engages in unwelcome or unwarranted behaviors at home as well as out in the community. Kevin talked about a specific incident, when Connor had a meltdown at the Natick Mall.
“I felt like every person was looking at us,” Kevin said. On the Island, though, he’s discovered a community that accepts Connor as he is.
“I feel like when we lived off-Island, I’d worry more about going out,” Kevin said. “Maybe I just got more tough about it with myself; you know, this is the way it is, you have to deal with it. Also, Connor’s getting better at regulating his behavior. On the Island, if you’re walking around in the off-season and he has a tantrum, half the people here already know him and it’s not a big deal. People here look out for people who are disadvantaged and different; we enjoy our individual uniqueness here.”
It’s safe to say all the families living with autism are concerned about their children’s future, about their ability to live out their adult lives on their Island home.
Island Autism Center feasibility study
The IAG has embarked on a feasibility study to determine whether or not the community could support an Island Autism Center, where children of all ages with autism could experience summer camp activities and afterschool programming, where families could find respite and a chance to enjoy camp with their children. Adults with autism could take part in social activities and vocational programming. Many kids with autism, on-Island and off, need one-on-one support to participate in programs, and Camp Jabberwocky isn’t particularly suited to persons with autism, who have trouble with lights, sounds, and close proximity to others.
“It’s not exactly a safety net, and it’s certainly not daycare,” Kate said about the idea of an Island Autism Center. “It’s providing all these guys with purpose for life. I think there’s a huge misconception that people with autism are not bright. Sometimes they’re unbelievably bright. These guys are locked inside themselves. Somebody told me once that having autism is like a radio that’s not quite tuned in, you’re getting all this static and you can’t tune in to what’s being said.”
Annual Tea and Auction
The IAG hosts fundraisers and special events throughout the year, with its annual Tea and Auction coming up Thursday, August 3, from 3 to 5 pm at the Dr. Daniel Fisher House in Edgartown. The Oak Bluffs Bluewater Classic donates funds every year, and in April the Autism Family and Friends 5K Fun Run/Walk takes place. The Martha’s Vineyard Film Festival recently hosted a film, “Dina,” in partnership with the IAG. Coming up, the IAG hosts a screening of “How to Dance in Ohio” at the Grange Hall on August 12; both films feature people with autism.
“I think if you look at where we are now, the school system has come a long way, and now the entire group of parents have come to the realization that we need to grow the IAG beyond the school,” Kate said. “This group has sort of grown as our kids have grown. Now there’s a gaping hole that we’re just starting to address, which is high school through young adulthood and beyond.”
Kate said that after all the reading and research that she’s done, she’s still hopeful. “There’s still a part of me that thinks that one day they’ll invent a pill,” Kate said. “Mark is just this amazing guy, you can totally see his personality. He’s a human being all on his own, he just can’t get out of himself to convey what’s going on.”
For more information about how to support the IAG, and to see its vision for the future, visit islandautism.org.