When Leah Stinson walks across the stage to get her high school diploma Sunday at Mt. Blue High School, she’ll be wearing a backpack to help her balance as she walks and maybe her graduation gown, if her mother can get her to wear it.
She’ll sit in a rocking camp chair — the movement is soothing to her — and have games and activities to entertain her during the ceremony. She’ll walk up to the stage with the help of her education technician, Alison.
Leah is a petite 20-year-old with an always present smile and bright blue eyes. She also has Angelman syndrome, a deletion of DNA on her 15th chromosome that has resulted in stunted growth and developmental delays. Leah is physically smaller than her peers and largely nonverbal. Cognitively, she’s between 6 and 18 months old.
For students with special needs like Leah, graduation is a milestone typically reached when they age out of school services at age 20. So while many of her classmates are preparing to start first jobs, go to college and move out of their parents’ homes after graduation, Leah’s family is trying to navigate the complex world of disability services.
They need to figure out how they can replicate the care, attention and learning opportunities she was receiving through the special education program at school and keep them going now that she no longer qualifies because of her age.
“I’m a mix of emotions,” said Leah’s mother, Siiri Stinson, a few days before graduation. “This is really the last milestone that kids typically go through that Leah will go through. She’s not going to get married. She’s not going to have children or a job. She’s not going to do any of those things, so aside from a birthday, this is really the last time we would naturally have a big celebratory party.”
Funding special education can be a challenge, with costs in RSU 9 ranging up to $70,000 per student depending on the severity of the student’s needs, according to Christine Gatto-Shea, RSU 9 director of special education.
In recent years, the district has found itself battling local residents who argue their growing property tax burdens threaten their ability to stay in their homes.
Stinson would make frequent appearances at school budget meetings to advocate for her daughter and stress the importance of special education.
She said she was alarmed by the number of people who would argue special education is a waste.
“It’s easy for people to say, ‘Why can’t the parents just do it themselves?'” Stinson said. “When I sit down and talk to people about what it’s like day to day with Leah, you can see them get overwhelmed.”
Leah has spent her entire educational career, and most of her life, in Farmington-based Regional School Unit 9 schools.
Her parents recognized early on their daughter wasn’t meeting developmental milestones for children her age. They’ve tried to give her as normal a life as possible, and while there have been challenges, for the last 15 years RSU 9 has been a big part in making that possible.
When Leah was getting ready to enter kindergarten, Stinson and her husband, Jared, toured G.D. Cushing School where they live, in Wilton, knowing their daughter was in need of physical and occupational therapy but hopeful she could be in a regular classroom with kids her age.
The school told them if they wanted Leah in the classroom, it would do its best to serve her, but school officials thought she would be better off in a self-contained special education classroom in Farmington.
They went to tour the classroom, which was located in a trailer because of overcrowding and had linoleum floors and adaptive equipment, a far cry from the cheery, carpeted kindergarten room they had visited.
“I just cried and cried,” said Siiri Stinson, 41. “It was the first real mourning that she’s not going to have the experience I had because she needs something totally different, so we’ll just have to go with it.”
LEAH’S EDUCATION
W.G. Mallett School turned out to be wonderful and Leah was there for four years.
The program allowed Stinson and her family to be as involved in Leah’s education as they wanted. Stinson would visit the classroom and could see how much Leah’s teachers adored her and how well they cared for her.
They were also effective. They figured out ways to teach Leah that shocked Stinson. They discovered she knew the alphabet and could identify people by their name tags. They would ask Leah, where is so-and-so, and she could point the person out.
“There have been times when they say, ‘Hey, Leah is doing x, y, z and I was like, ‘What? How did you get her to do that?'” Stinson said.
Yet there were also times the district would approach Stinson and attempt to roll back some of Leah’s services. Maybe Leah doesn’t need a one-on-one education technician, they would tell her. Maybe she could work with a technician who oversees two or three other children at a time.
Stinson would push back — Leah was, after all, cognitively at the level of a 6- or 9-month-old by that time — but she suspected, underlying the attempts, was the district’s ongoing struggle to pay for special education services they were required by state and federal law to provide.
There are about a dozen students in Lynda Szenes’ special education classroom at Mt. Blue High School. Most of them have a “one-on-one,” a special education technician who is dedicated to helping just that student. Others are two-on-one.
The students in the classroom have varying levels of disabilities. Some of them eventually will be able to hold down jobs doing simple tasks such as stocking shelves or working in a kitchen, while others, like Leah, won’t ever join the workforce.
For most of them, school is about learning life skills — things such as how to start a load of laundry, washing hands after going to the bathroom and eating a meal without making a mess.
Szenes said Leah is a joy to have at school. It’s hard to get her to sit down and to go more than 10 minutes without trying to give one of her classmates or teachers a hug. But there’s also a lot to work on.
The school provides Leah with access to a speech therapist who has helped improve her communication, and a physical therapist, who works with Leah daily on stretching her muscles and preventing the shortening of the Achilles, a common problem with Angelman syndrome that can make walking difficult.
Because she is incontinent, someone has to take Leah to the bathroom every 30 minutes. They’ve been trying to get her into a routine of going frequently so she doesn’t have accidents.
There’s also a supervisory role in Leah’s education. Leah has no concept of danger, so she might run into the street or put her hand on a hot stove and think it’s a game or a good way to get attention, something she loves.
Because of that, someone needs to keep an eye on her constantly, another thing that will be hard to replicate at home.
And there’s the chance to interact with other people her age who are in the same developmental stages as Leah is.
Right now, Leah will be able to attend summer school through August. For many students in similar situations, what happens next is dependent on the level of advocacy and attention their parents are able to put into their futures.
Gatto-Shea said in that regard Leah is lucky.
“Siiri has many resources at her disposal,” Gatto-Shea said. “I’m not talking about financial. She has stamina. She’s very bright and she knows how to advocate. Some parents don’t have the capacity to do that for many reasons. They might be impoverished. They might be working two or three jobs so they can’t access the information or resources. You have to be proactive to get on wait lists and get case workers to advocate for you. If you don’t have the skills to navigate it, you lose out.”
SUNNY PERSONALITY
Right now, Leah’s parents have a case worker who will help them fill out the paperwork to qualify for adult disability services, something they anticipate Leah will need for her entire life. There’s no telling how long that will take. Stinson said she has been told there is at least a six-month wait for basic services, while it can be a three-year wait for at-home support and a higher level of care.
She cringes at the thought of putting her daughter into a group home. As a stay-at-home mother with six children in addition to Leah, Stinson needs the help. Her husband, Jared, works as an emergency medical technician, but there’s not enough money to pay for the services Leah needs out-of-pocket.
The things Stinson wants for her daughter’s future are simple. She wants to see her communication skills continue to improve. She wants her to have the opportunity to socialize.
“I’d like her to be able to share her personality and her smile,” Stinson said. “She’s very loving and for a lot of people in her life. She’s a very unconditionally loving, really healing relationship just because there’s no guile there. She’s just who she is and she loves you where you are. It doesn’t matter if you’re heavy or skinny or awkward. She doesn’t care.”
On Sunday, Stinson plans to decorate her daughter’s graduation cap with a bright yellow sun. In a household with so many children, color coding is the best way to differentiate their belongings. Yellow is Leah’s color.
Because her daughter can’t talk, Stinson is debating whether to put words on the hat or keep it simple with just a picture of the sun.
What will it say if she uses words? She wants to use a message that fits Leah’s bright, sunny personality.
Scatter sunshine all along your way.
Kate McCormick contributed to this report.
Rachel Ohm — 612-2368
rohm@centralmaine.com
Twitter: @rachel_ohm
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