Three years ago my agency, Educating Communities for Parenting, was given the opportunity to work with parents of children who are visually impaired or blind. While I have years of experience helping parents manage the challenges of raising kids, working with families of special needs children was new territory for me.
It only took one workshop to see their uniqueness. Some are stay-at-home, most hold full-time jobs. They live in diverse households, including those where grandparents, adoptive, or foster parents are the full-time caregivers. Several were special needs kids themselves.
They're all very different, but have one thing in common – the love for their children. They have a determination to do everything possible to ensure their kids can succeed in life.
It's not easy. As a matter of fact, it's a Herculean task. On top of simply caring for their children, too often they need to fight for things most parents take for granted, like the right to an appropriate education.
They also manage daily schedules that would stump an efficiency expert. Along with typical parenting chores, they fit in doctor appointments, therapy sessions, and enrichment programs. And of course, they can't forget about the needs of other family members, let alone their own.
Bet you're thinking they're a miserable bunch. You'd be very wrong! They are passionate, fierce, energized, and full of grace and humor. When leading my groups, I often find our rolls reversed. They're the teachers and I'm the student. What they need most from me and each other is support, resources, and having a chance to talk about their fears and joys.
I think it's important you get to know some of these parents and learn what they can teach you, too.
Donna Dowling is the single mother of 17 year-old John Michael. She shared that, "One of the biggest challenges is getting the education he needs." Dowling and other parents have expressed too often school districts make promises and fail to follow through. They may have good intentions, but are working with limited funding and insufficiently trained staff. While they're legally bound to provide services, many times they're inadequate. The child suffers and the parent must continually fight the system.
Terry Zaccagni is the mother of 14-year-old Gianna. She and husband Vic, "don't want Gianna to think because she's blind she can't be successful." Their fear is that, "life and the world can be cruel."
Often times people ask them, how do you do it? "Really, it isn't any different than caring for a sighted child. Kids will be kids," Zaccagni said. "We don't treat her different just because she's blind and always tell her she can be whatever she wants to be and to always be a leader, not a follower."
Maria Ceferatti is the mother of 16-year-old Simon. He was a micro preemie (born before 26 weeks gestation) and spent his early years, "catching up." She describes milestones such as "sitting on his own, rolling over and walking were like Olympic feats."
When it comes to things others say, Ceferatti says that she's "heard it all. Many people approach Simon and ask if he's heard about the latest eye surgery or gene therapy and reassure him that science will catch up. One woman even stopped Simon at a crowded event so she could touch his eyes and pray over him to gain his vision."
"People have good intentions, but their exposure to children or adults with disabilities is limited. Their ignorance can be more of a challenge than the disability itself. To shatter misconceptions that have been engrained for decades can be daunting."
Ceferatti is right. It will take time, but it's important that we begin to educate more people – for families of children with special needs and for all of us.
Here's what you can do:
For more ways to help: