Nearly one in six kids in the US — including about 14% of Lexington Public School students — have some sort of disability, the legal term for a wide variety of conditions, including common diagnoses like dyslexia and ADHD, as well as those that can require more support, like autism spectrum disorder, cerebral palsy and Down syndrome. The town is required by state and federal law to provide free and appropriate education and services to all residents between the ages of 3 and 22.
This is the story of one family that moved to Lexington with their son Zach, who was then a second grader with complex needs but no clear diagnosis. He is now turning 32. In Part 1, his parents share their experiences navigating the labyrinthine intersecting medical, legal and educational safety net that exists for young people up to the age of 22. In Part 2, we’ll learn about what happens when he ages out of that system. (Zach himself did not wish to be interviewed, but he agreed to let his parents tell his story). Every journey is different; his story is not meant to be representative, just one family’s experience.
Trigger warning: “Having had kids in LPS for 14 years,” one mother warned me, “I know that special education conversations in Lexington can become heated quickly. Parents, students, educators, and administrators all have strong feelings.”
Like many parents who moved to Lexington for the schools, Leah Baigell had done her research.
A graduate of New York’s renowned Bank Street Graduate School of Education, she and her husband Henry Kon — then a PhD student in information technology at MIT — were in their early 30s and living in Somerville with their son Max when their second was born in May of 1992. “They ran the APGAR twice and said Zach was fine,” Leah remembers, “Henry thought he looked adorable but he looked odd to me. The pediatrician thought I was a nervous mother but, at every check-up, I persisted. At 10 months, he referred Zach for an EI assessment.”
“EI” or Early Intervention was the first acronym Leah learned in the jargon of the special needs universe, a vast federal, state and local medical-legal system for children with disabilities. EI is a program for infants and toddlers up to three years old who have developmental delays or are at risk of one. The assessment the Kons received found that Zach had decreased muscle tone and global developmental delays. It mandated that Zach receive regular speech, occupational and physical therapy, followed, at age two and half, by an EI preschool. Costs were covered by the state.
“He received in-home therapies from age one to three, then spent half a year in EI preschool, then regular pre-K,” Leah recalls. “He was very small, cute, cuddly and docile, and everyone including his teachers loved him,” she recalls. “We did too, but he was a challenge. He didn’t sleep much at night, because (we later learned) his body over-produces melatonin during the day and under-produces it at night. He was quietly and happily destructive at night — in the mornings it sometimes looked like a tornado had gone through while everyone was asleep.”
Zach’s older brother Max attended the small, private Eliot Pearson School at Tufts, which mixed neurodivergent and neurotypical kids from pre-K to second grade, and Zach joined him there when he was five. In first grade, Zach was cooperative and very sociable, a goofball who was curious about people and remembered them, who was interested in decoding words, but stumped by numbers and directions. He was physically and academically delayed, but his behavior at school was acceptable. At home, however, his parents say it was out of control. Zach had sudden tantrums in which he ripped pages out of books, threw things, cut up his clothing, spit, hit and kicked so much that his mother had bruises all over her arms and legs. Her doctors would sometimes ask, “Is there something you want to tell me?” and Leah would explain that she had a special needs son “and this is what happens.”
Their extended family lived too far away to babysit and the Kons did not feel comfortable hiring babysitters, but found a welcoming community at Eliot Pearson — Max had playdates, Zach played with the younger siblings, the parents socialized with other parents.
Since Eliot Pearson ended after second grade, they began looking for a good elementary school for Max. Lexington was the only town that offered Leah an in-person interview. Max started fourth grade at Harrington in September of 1998, and Zach was placed in a second grade classroom there in 2000. Then, as now, federal law required public schools to provide special education to all children ages 3 to 22 in the “least restrictive environment” (LRE) possible and to provide an Individualized Education Program (IEP) to each child. The IEP addresses a broad range of disabilities, roughly categorized as autism, communication impairment, developmental delay, emotional impairment, health impairment, intellectual, neurological, physical, or sensory impairment, and specific learning disability (SLD). SLD, an umbrella term for learning disabilities in specific areas like reading, writing, speaking, or math is the most common.
When Zach entered Harrington’s second grade, he fit no one category. “He presented as a smart kid and then you’d ask him a question and you don’t understand why he doesn’t put two and two together,” says Henry. “He was warm and cuddly and then he’d have an aggressive outburst.” At seven, he was still small for his age, loved decoding words but had trouble following a narrative. He had a concise memory for facts and people — “someone had a dog who had surgery and he’d remember it two years later.” He liked to tell jokes but had trouble sitting still — a teacher sometimes took him out of class to skip up and down the halls, opening and closing lockers. He was also developmentally behind grade level. His doctors settled on a diagnosis of Tourette’s Plus because he had characteristic tics — involuntary body movements, sounds and, later, inappropriate language. At the end of that year, he was transferred to Bowman.
Through the Lexington elementary district-wide special education programs, students are assigned to all six elementary schools based on their needs. Although many students fit more than one category, Harrington’s program focuses on students with significant developmental delays or intellectual/neurological impairments; Bowman, students who have at least average cognitive abilities but significant language‐based learning disabilities; Hastings and Fiske, kids with autism spectrum disorders; Bridge and Estabrook, students who may or may not have learning difficulties but demonstrate disabilities that interfere with self‐regulation. At Bowman, from age 8 to 11, Zach was partly mainstreamed, partly taught in classes of 4-6 students with two teachers and an aide.
By that time, Leah had decided to forget about a career. She knew of other families with special needs kids who hired live-in help and her husband encouraged her to continue working outside their home, “but there was no way to do that,” she says. “On school days, I was often asked to sit in the hall or be no more than 20 minutes away from school,” she explains. “At night, we had to split sleeping shifts. Once Zach somehow got the car keys and we found him sitting in the car in the middle of the night. He was six.”
While her husband Henry and older son Max followed somewhat regular schedules, Leah lived her life in short, intense bursts. Before becoming a mother, she danced, swam, ran, cycled, roller-bladed, worked out after her job. Now, she managed to go to the gym only early in the mornings while Henry stayed home with Zach, or she went right after taking Zach to school, flip-phone in hand. She was always on call.
Through his years at Bowman, it became increasingly clear that Zach had a significant, if confusing, mix of special needs. He found transitions difficult and would kick and scream when he had to get in and out of cars. “Middle school was looming. He was not at his grade level, but we didn’t want to put a ceiling on what he was capable of doing until we had a diagnosis,” recalls Leah. She and Henry thought he still might grow out of it and go to college. “You’d ask him what’s 100 minus 20,” recalls Henry, “and he’d say ‘You know I don’t do math.’ And then you’d wonder if he couldn’t do it or wouldn’t do it. Could he? Was it ability or being oppositional?”
The Lexington special ed coordinator said Zach had to go to Clarke Middle School “and see it fail, so that we could legally justify sending him out of district,” his parents say. Within a few days at Clarke, it became clear that Zach couldn’t manage the new environment. LPS recognized that they could not provide “a free and appropriate education” for Zach, nor could they keep him or those around him safe from his behavioral outbursts. Leah and the special needs coordinator visited day schools outside the district. In the winter of 2003, he entered The Gifford School, a special needs day school in Weston with smaller classes, excellent teachers, and developmentally similar kids.
In its Primer on Financial Aspects of Special Education, the Massachusetts Department of Elementary and Secondary Education (DESE) details its financial and technical assistance to districts to ensure that special education services can be provided in various settings, including out of district private day or residential programs. In general, special education costs are the responsibility of the district where the student resides or, if the student is living in a residential program, where their parents reside. “We were lucky,” Leah says. “The district assumed full responsibility.” Zach spent the next four years at Gifford.
During the months leading up to his 13th birthday, Zach enthusiastically prepared for his bar mitzvah, a process that involves study in both English and Hebrew. He was interested in Judaism and the Holocaust. The Rabbi was flexible around the stringent preparations and Zach had the coming-of-age ceremony at Temple Isaiah, with some accommodations. But at the Gifford School, his behavior grew more erratic. He would be a model student and then throw a chair in frustration, or punch a window and be surprised that it cracked. His medications did not control his impulsivity and Zach often needed to be restrained. Because the Kons still didn’t have a diagnosis, they didn’t know that his various behaviors — not sleeping at night, his tics, destroying some of his prized possessions as well as hurting himself — were all symptoms of one syndrome.
After four years, around Zach’s 15th birthday, the Gifford School told the Kons that they could no longer manage Zach and suggested that they bring him to a psychiatric unit of a hospital. “This was a huge turning point,” says Leah. “You’re told that your child can’t live under your roof and you can’t be the parents you thought you’d be. But it was like living with Dr. Jekyll and Mr. Hyde. He’d be great to be with for a while and then turn into a nightmare. There was not always a clear antecedent to his behavior, or a way to predict what would set him off or for how long. Nothing we did helped regulate him. We were always waiting for the other shoe to drop.”
While Zach cycled in and out of the ER, remaining in the Cambridge Health Alliance hospital for three months straight, the Kons looked at a dozen residential schools for children with multiple special needs. Several were rumored to be abusive of their charges and the Kons avoided them. Finally they settled on what they thought was the best option that would take him: the Devereux School in Worcester –- about an hour’s drive from their home in Lexington.
Leah remembered thinking, “Is this the right thing to be doing? Should we be sending him away? All these conflicting feelings. They had a policy that for the first 30 days they didn’t want the kids coming home, but I went out there a lot, probably twice a week, and because all his doctors were in Boston we’d take him. It wasn’t easy because every time we saw him he’d want to come home.” Another long-time mother of an adult special needs child told me, “You cannot overemphasize how everyone — teachers, relatives and friends — second-guesses every decision you make, whether they say it out loud or not. And the differences of opinion you have with your spouse. There’s the constant worry of being wrong and being judged for how you respond to your child, and unending stress on the couple and the marriage.”
During that time, after much family research, genetic lab work finally confirmed that Zach had Smith-Magenis Syndrome (SMS), a rare disorder caused by the deletion of critical genes, with a recognizable pattern of physical, behavioral, and developmental features. It occurs in one out of every 15,000 to 25,000 births. “It’s notable that despite having a perfect fingerprint of behavioral and physical characteristics of SMS and seeing some of the best doctors in the world all over Boston,” recalls Henry, “no one had even suggested that possibility.”
By 2007, the internet had become an indispensable resource: the Kons located an SMS association website and a Facebook group, invaluable for exchanging information with other families, and connected with a family in Westwood and two in Portsmouth, New Hampshire. “That was a second turning point,” says Leah. “After years of not knowing what was wrong, we finally had a name for it and people who understood our experience. Zach checked every one of the SMS boxes. We were beginning to understand that he would never go to college or be able to live on his own. We felt relieved and vindicated — the diagnosis confirmed that his behavior wasn’t willful and that we had done our best to support him. Neither he nor we could do anything about his chromosomes. We also had ourselves tested and were negative – 97% of SMS cases are not hereditary. This was a relief to our older son, now about to graduate high school, who was assured that he was not a carrier.”
Zach’s behavior didn’t change and there was no magic solution to his many challenges (doctors continually experimented with medications including anti-psychotics to control aggression, OCD, weight gain, sleep etc), but the Kon family now had a name that explained his many behaviors, as well as a supportive community of other families. “In 2009, we attended our first SMS conference and encountered a whole building full of Zachs. We could educate ourselves and then educate his teachers. He was not ‘delayed’ in math; he wasn’t going to learn more beyond a certain point no matter how much they pushed,” Leah says. “Once we got the diagnosis, we realized we needed to focus on the ADLs: activities for daily living — cleaning your body, showering, drying yourself, brushing your teeth, taking meds, dressing, eating independently.”
From the age of 15 to 19, Zach lived at the Devereux School with other children and teenagers who had a mix of serious intellectual, developmental and behavioral challenges. There was a regular academic program and he attended developmentally appropriate classes every day. Since everything — dorms, classrooms, vocational resources — was on campus, the problems of transportation (getting him in and out of cars, keeping him calm during rides) were no longer an issue. A new post-diagnosis co*cktail of medications including melatonin proved helpful to him, as did the school’s strict nutritional plan and busy routines, which included outside activities like fishing, theater, work in an on-site animal shelter and plenty of exercise for kids going through the hormonal changes of puberty.
“When he was in the public school system,” Leah says now, “he was one in a hundred. When he was in the residential school, he was like everybody else and with a staff trained to work with him. When you can put your kids in a place where there’s an opportunity to thrive, you take it.” The family observed the visiting hours that the school suggested. Leah began to take more time for herself, too. The first important thing she remembers doing once Zach was settled in residential school was to schedule a long-delayed foot surgery. Both Kons are avid athletes who bike and hike wherever they vacation and swim in-season and off at Walden Pond. Henry is a founder of LexSoccerPU, the pick-up soccer club that plays at Lincoln fields. They welcomed more time to themselves.
At 19, Zach seemed fairly “regulated.” At Devereux, his routine now included helping out at the school’s car wash and learning how to navigate Worcester’s public transportation system with an aide. The Kons began to wonder — now that Zach was able to do these things in Worcester, if he might be able to do them closer to home. They applied to the Guild for Human Services, then located in Waltham. There, Zach lived in a group home off-campus with ten other students under the age of 22 and several aides. He continued academic classes as well as classes in everyday living skills, to work off-campus in the company of a job coach, and to use public transportation in Waltham. His parents saw him once or twice a week, particularly at sports activities organized by Belmont S.P.O.R.T (Special Programs Organized for Recreation Time) where he learned to play flag football, basketball, volleyball, participated in weekly social activities and competitions like Special Olympics.
In 2011, Henry was now 50 and working at a local software company; their son Max was 22 and finishing college with a major in cognitive psych. With Zach finally stabilized, Leah, who had always loved to cook and bake, started a raw foods business. Until then, she had done some volunteering for Temple Isaiah and Zach’s schools, for the Bank Street College Alumni Association, WBUR and Somerville Hospital, squeezing it into her schedule even if she couldn’t always attend all the meetings. But for 20 years, she hadn’t been able to commit to a full-time job. During those years between 2011 and 2014, with Zach settled at the Guild, the Kons’ lives were calmer than they had been for years. Their marriage had survived.
Then, in May of 2014, Zach aged out of the LPS system.
For years, the Kons and their coordinators had been talking about “transition planning” and the resources that would become available to Zach once he moved from state to federal programs. They had long discussions about families that chose to keep their adult children at home as opposed to sending them to live outside the home. It was a fraught issue with a problematic history in Massachusetts and everywhere else in the U.S. For a time, it was unclear where Zach would go next.
(Part 2 coming soon)
