Any Lengths
Most parents would go to any lengths for their kids. For the parent of a child with special needs, those lengths can be extraordinary.
For more than a decade, Matthew and Yara Goldstein have had to fight to ensure that their special needs child, Rafa, receives the free and appropriate public education guaranteed to all children, regardless of his disability.
This July, Matthew Goldstein is running the Vermont 100 to raise awareness and money to help families like his— parents with children that don’t fit into traditional schools due to their unique needs and learning styles.
At age three, Rafa was placed in a public preschool program for children with special needs where he got the support that he needed and did well. But when the year-long program ended, Yara and Matthew struggled to find another school that could meet their child’s unique educational needs.
“Traditional schools are not designed to meet the needs of the students unless they fit into a perfect box,” Yara says. “Most kids are outliers.” Whether a child is able to succeed in a traditional school setting, she continues, “just depends on how far outside of the box they are. And Rafa is very far outside the box.”
In addition to being a parent, Yara works as a licensed social worker and clinical therapist, counseling countless families like her own. Even special education schools on the NY State Approved list, she says, are not appropriate placements for kids like Rafa. “They're not equipped to deal with kids that are really, really bright, yet can't do traditional academics, and also have receptive and expressive language delays,” Yara says.
Thankfully, Matthew says, “We have more support here [at OSS] than we’ve ever had anywhere. And that’s amazing.”
Like many parents of children with special needs, Yara and Matthew were initially unaware of their rights, including the option to request a private evaluation and the district’s obligation to pay for it. As the family toured potential programs and interviewed staff, Yara raised general concerns about the professional qualifications of staff members responsible for managing the behaviors of vulnerable students like her son.
Rafa's struggles in school were due to a lack of understanding and inadequate resources, leading to feelings of frustration and helplessness.
“When there was a delay in his reading, the schools blamed his behaviors,” Yara recalls. “[They said] ‘he can't read because of his ADHD, he can't read because he doesn't behave. He can't read because he can't focus.’”
“We told the schools, ‘listen, we think he's on the spectrum. His brain works differently.’ They said, ‘No, no, he doesn't behave. He needs stricter rules at home. He needs more discipline.’”
Rafa is autistic, and has dyslexia, but wasn’t diagnosed with either until the Goldstein’s paid out of pocket for a private evaluation conducted at the end of Rafa’s seventh grade year. At one public ‘therapeutic’ program, he was physically and emotionally abused, leading them to homeschool for two years while the district searched for a less restrictive placement.
It was a horrible time in their lives, Matthew recalls. “Neither of us are teachers. We both had jobs.” Rafa needed constant attention, and suffered from the lack of socialization. “My stress level went through the roof.”
Their lives changed for the better, Matthew and Yara say, when they finally found a school that looked past their son's diagnoses and saw his potential.
Otto Specht School is a private Waldorf school in Chestnut Ridge, NY, specifically designed to meet the needs of students with developmental delays, social and sensory sensitivities, and learning challenges.
“We view behavior as communication and it is our job to figure out what the student is communicating,” says Otto Specht director Chela Crane. “Students like Rafa come to us traumatized from previous school experiences.” The school’s emphasis on the outdoors and experiential learning help students enter into the school environment despite often very high levels of school anxiety. “experiencing a response to behaviors that is not the punitive response they are accustomed to, welcoming them back day after day, believing in the best part of them even after seeing the worst, slowly builds trust and allows for transformation to take place.”
“It takes a collaborative effort,” says Yara. “The parent and the school need to work together to help get a kid from where they are, to where they need to be. Otto Specht is incredible at listening to us. They don't just assume that they're the authority. We work together.”
At Otto Specht, Rafa’s accommodations have included a one on one paraprofessional, and Speech Therapy, and the curriculum tailored to fit his learning needs. The program is nature-based, and artistic activities, handwork and animal care are part of the curriculum. All children, but particularly kids with Rafa’s profile and life experiences, need a safe and supportive environment. Rafa thrives at a school that focuses on his potential, rather than unwanted behavior or meeting arbitrary requirements.
When a local school district fails to provide a special needs child with an appropriate public placement, a parent has the option to pay out of pocket for a private program and seek the school district for reimbursement. Even in cases as clear as Rafa’s, the process is stressful and costly. For most, it involves hiring lawyers and it can take years of litigation and still more years to be reimbursed. Matthew is raising one hundred thousand dollars to contribute to a fund that will provide full or partial tuition deferrals for qualifying families who are awaiting reimbursement.
Matthew started running and eventually completed his first marathon in 2008. Running long distances helps relieve his stress, he says, and provides a break from the hardships of parenting.
When he ran his second ultra marathon in 2019, Matthew learned the importance of having a crew to provide support and aid along the way.
The first time he ran the Vermont 100, one year earlier Matthew had a crew of friends and family to support him. The second time, Matthew says, “I didn’t want to impose.”
“I got sick,” Matthew recalls. “I started throwing up, and that probably went on for around 12 hours.”
67 miles into the race, he decided to drop out.
The July 19-21st event will be Matthew’s third attempt at completing the 100 mile run, which is held annually in West Windsor, Vermont. This time, Mathew says he’s got his crew lined up, including a pacer.
“Towards the end of an Ultra race, it's recommended that one has a pacer— someone that comes in when it starts getting dark,” Mathew explains.
A pacer is an ultra marathon runner’s most pivotal support person, and so it’s fitting that OSS Director Chela Crane has agreed to fill this role. An avid runner herself, Crane is meeting Matthew at mile 80 and running alongside him for the last twenty miles to the finish line.
Ordinary people can do extraordinary things if they push themselves, and so long as they have support and guidance. “You think running 100 miles is impossible,” Matthew says. “Then you do it, and you realize it's not impossible.”
Similarly, the challenge of raising a child with special needs can sometimes feel insurmountable. Thankfully, Matthew says, “We have more support here [at OSS] than we’ve ever had anywhere. And that’s amazing.”