For Rania Markham, a social work intern at CHP whose son Zachary (center) was diagnosed with autism at 18 months, and her family—which also includes a husband, a grown son, and a seven-year-old daughter—their path has unfolded largely out of necessity: to find a place for Zachary, and by extension all of them, in the world. Photo courtesy of Rania Markham.
“I remember thinking, ‘No, you’re crazy; not us. My son, he’s just taking his time,’” Markham, a social work intern at CHP, told The Edge of her immediate disbelief. Prior to Zachary’s diagnosis, at 18 months, he was receiving Massachusetts Early Intervention services (EI), a program for infants and toddlers (birth to 3 years old) who have, or are at risk of, developmental delays; once he aged out of that program, the path forward for Zachary and his family was unclear.
“Nobody really told us what to do,” said Markham, who was studying for her B.A. in psychology when she had a realization: “If I’m here and I don’t know what to do—with education and access to the resources, [despite not knowing] where they exist—maybe others are struggling too?” Having been with CHP for several years by that time, Markham changed gears: She set her sights on studying for an M.A. in social work to explore how she might help others—which, in hindsight, was the first step toward creating the robust community of support for children with special needs that exists at CHP Family Services today.
“We started running small events,” Markham said, citing a special needs hike (at a locale deemed stroller-, wagon-, and wheelchair-friendly) to which a dozen people showed up; the next get together, at a playground designed to be friendly for children with special needs, 40 individuals attended.
“It’s that parent connection [caregivers] are craving,” said Markham, who, despite counting herself among this group, hadn’t seen the need until it existed. As to the biggest boon? The shared understanding that comes from connecting with other families who are facing similar struggles. “We are different … [and] we can’t do typical things sometimes, and as human beings that can hurt,” said Markham, underscoring the critical importance of not only creating community but also a space for parents and caregivers to talk openly about what those feeling are like—and to remove the accompanying guilt.
In the ensuing years, Markham has developed a whole new set of CHP resources for special needs families. As to what fuels her? A dogged determination to connect families like hers with valuable resources, largely designed to help navigate “the system,” and to reduce the ensuing isolation. To date, she has been instrumental in organizing myriad offerings including:
- Weekly online special needs support group (on Wednesdays from 9 to 10 a.m.);
- Monthly in-person playgroups and special events for special needs children and their caregivers;
- Twice-yearly online workshops, “IEP 101,” which trains parents to navigate public schools’ educational programming for children with disabilities;
- Ongoing “special needs fund” at CHP for families who may be experiencing a financial crisis or challenge—especially when their child’s care requires traveling to Boston Children’s Hospital which can be a financial burden.
“Rania is starting to get some real traction, and I am in awe of what she’s doing,” said Ellen Lahr, Senior Director of Communications/Marketing at CHP, who went on to call Markham “something of a rock star in developing new support programs for families of children with special needs—as she approaches [the topic] as a parent who knows the skinny on this stuff.”
For children with autism, challenges can run the gamut; especially for those navigating the transition to public school, and the creation of an IEP, Markham is paying it forward by sharing the long-ago advice from the doctor at Shriners: “If you think you might need [a service], just put it in the plan; you don’t have to utilize all the supports,” she shares.
For Markham and her family—which also includes a husband, a grown son, and a seven-year-old daughter—their path has unfolded largely out of necessity: to find a place for Zachary, and by extension all of them, in the world. Thankfully, their aspirations not only in walking out but also sharing their experience have come with resounding residual benefits for so many in the community.
“It’s been an amazing journey, and [Zachary] has taught me so much,” said Markham who, once her degree is complete, will join the CHP Family Services team full time. Of all the lessons she’s learned to date, it’s the reminder to live in the moment she most cherishes. When she thinks ahead to the future, and all the “what ifs” that await Zachary, she takes pause.
“I have to pull myself back a lot of times and just say, ‘You know what, he’s happy,’” While it’s true Zachary doesn’t get to go to baseball practice or play soccer, he enjoys music and art therapy. “It’s such a balance,” Markham reminds others and, by extension, herself—thankful for the myriad invaluable connections she’s made through CHP.
“It’s empowering to watch other parents take the reins and say, ‘You’re right; I need to step up my game and advocate for my child.’”