When Janet Grillo’s son, Matt, was 11, she had to make a “grueling, heartbreaking, but necessary” decision. A year earlier, the autistic boy had started puberty. “Matt’s anxiety hit a fever pitch and took the form of aggression and outbursts,” she says. In school, he attacked students; at home, he hit his mother and broke things on a regular basis.
Matt, who is mildly to moderately autistic with severe mood lability, was moved to increasingly restrictive school settings. At one point, he lost a placement and was home for 10 months, during which time his mother worked to create an intensive educational intervention program using resources supplied by their home state of California. But he continued to regress.
At the time, her son was in a special day program for kids with extreme behavioral problems, where he was “white knuckling it at school” only to come home and “just fall apart.” Despairing, Grillo realized that what her son needed was a different school environment, one that provided consistency and structure round the clock, seven days a week.
A need for consistency
In day programs, her son would spend five hours at school with his classmates; then everyone would go home to very different environments, where they were given very different kinds of interventions, if any. “Anything that might have been accomplished in those school hours had been undone by the other 19 to 20 hours off-campus,” Grillo says. “Whereas, with a 24-7 residential therapeutic program, everybody is getting the same message uniformly, consistently, all at the same time, so the whole group starts to progress more evenly. That’s the real merit of what they can offer, what you as a parent just can’t.”
With the help of an educational consultant, Grillo found a spot for Matt at The Glenholme School, a therapeutic residential school in Connecticut with a regimented positive behavior support program. Seven years later, she’s certain she made the right choice. The school “saved his life…and mine.”
‘An amazing opportunity’
While Grillo viewed a residential treatment program as a last resort, Amy Goehner never thought of it that way. Instead, she saw the Boston Higashi School in Randolph, Mass., as “an amazing opportunity” for her autistic son, Nate, to learn life skills that she hadn’t been able to teach him, right down to tying his own shoes. After years of attending day schools followed up by occupational, physical, and speech therapy, she felt that her then-10-year-old “had maxed out.”
Higashi, which aims to prepare students for lifelong inclusion in the community, does not allow the use of medication to manage behavior. Instead, the school’s philosophy is centered on the idea that through rigorous exercise, including twice-a-day jogs, the students will be on a natural cycle where they have an increased appetite, eat healthier, and sleep better, countering the sleep problems common to so many children and teens on the spectrum.
When an opening came up suddenly at the school, which offers both day and residential programs, everyone who had ever worked with Nate endorsed the idea, Goehner says. She flew up often from New York City to visit. Once she saw how happy Nate was and how quickly he was learning life skills, she knew she’d made the right decision.
Choosing a residential school
If you’ve made the decision to explore residential options for your child, the next step is finding the right placement.
As demonstrated by Glenholme and Higashi, residential settings are as different as the students who attend them. Jeff Brain, dean of admissions Allynwood Academy, says it’s helpful to see the levels of care on a spectrum, from more restrictive and intensive treatment to less restrictive with support services. When choosing a school it’s important to figure out how much structure your child needs and what kind of services and accommodations would be the most helpful.
How restrictive a setting a child needs is a isn’t an easy thing, acknowledges Gary Mayerson, a Manhattan civil rights attorney concentrating in autism.”Given that federal law calls for children to be placed in the least restrictive environment, it may come down to a judgment call. If we’re seeing self-injury or aggression to staff or to other children and we can’t seem to rectify that even with a very efficient program at home, then we’re looking at residential.” But the goal of any quality program, he says, should be to educate the child and return him to a public school placement, in his community, along with behavioral supports and accommodations.
Such placements aren’t inexpensive. Under the federal Individuals With Disabilities Education Act, states must pay for an appropriate education in whatever setting is needed, including residential, so some of these schools for special needs are approved and funded. Those that aren’t tend to be expensive. The Family School charges $7,800 a month for tuition, room and board, counseling, and extracurriculars, which Brain says is typical among therapeutic boarding schools. There is no insurance reimbursement, since it isn’t a treatment facility. But the cost for autistic kids who might need 24-hour, 1:1 behavioral care, Mayerson says, can run as high as $400,000 a year, though schools he deals with more typically cost $200,000 to $250,000.
Understanding your options
The National Association of Therapeutic Schools and Programs, the largest the professional organization for residential schools, offers a search engine on its website to help parents narrow the field of schools down to those that meet their needs based on criteria like type of program, age range, and gender. Cliff Brownstein, executive director, suggests that parents target several programs. “We suggest that they also look at Questions to Ask,” he says. “Read through it and think about it carefully. Then call those five or 10 programs and start asking questions.” They also suggest contacting the Independent Educational Consultants Association, which includes professionals who specialize in placements for at-risk kids.
Related: Choosing a Residential School
Brain advises families evaluating a school to expect full access and answers to all their questions. Janet Gates, whose 18-year-old son, David, started at Family last December, says Brain was true to his word when she toured his school with her sister. In fact, two students served as guides, without any staff around. “You can ask anything you want to ask,” she says. “I stopped and asked random kids random questions and no one was saying, ‘Please get me out of here, can I stow away in your trunk?’ They must be very comfortable, I thought to myself. It was very reassuring.”
Bernie Wolf, director of admissions at Pennsylvania’s Camphill Special School, which serves cognitively impaired autistic children and teens through its day, residential and transition programs, says that while the school doesn’t want surprise visits, “we encourage families to join at lunchtime in one of our homes or come and observe or even help in a class.” It’s to everyone’s benefit, he says. “We want them to see the quality of the environment.”
Doing What Parents Can’t
Shortly after Janet Grillo enrolled her son at Glenholme she ran into and old friend who asked about Matt.
“I was telling her the story, and she looked at me ashen-faced and said in a barely constrained tone, ‘You sent him away?’ It was like a dagger through my heart. And I thought, I didn’t abandon him, I am giving him a chance at having a life.I felt it was really important to share the news that you’re not institutionalizing your child if you’re sending him to a genuinely bona fide, accredited therapeutic residential school. There are wonderful placements out there. We need more of them.”
And it’s not just parents that have positive things to say about residential programs. When she was 16 Alison Gordon was suffering from depression and drug and alcohol abuse and constantly in trouble at school and at home. At a loss for what to do, her parents sent her to the Family School.
Alison says being at Family helped her in a variety of ways, from positive peer pressure to the fact that people there understood what she was going through to a comforting form of spirituality, based on the 12-step program.
Now in college, Alison looks warmly on her time at the school. At Family, she learned that she needed the structure the school’s controlled environment provided: three meals a day, the same bedtime and wakeup time, and the knowledge that if she was having an adverse reaction to a medication, she could separate it from the pot she had been smoking daily at home.
“No, I didn’t go to prom, I didn’t have a regular graduation, and I can’t go to frat parties,” she says. “But what I’ve gained far outweighs what I’ve lost.
“My parents always had sense of guilt that they couldn’t help me,” she notes, “but I wouldn’t let them help me. I was so deluded. I think my parents are fantastic parents; I wasn’t coming from a broken home. But I needed an extra kick.
“I don’t know other parents’ situation,” she adds. “But if I had a kid who had the struggles I have, I wouldn’t give up on them till I’d tried everything.”