Hungary: The Power of a Mom who Models Comprehensive Care for Students, Families and Systems

I first met Zsuzsa Matolcsi standing at the top of a subway platform next to an Egyptian-owned food cart, owned by a guy who wore a ring on every finger. It was a hot day, so while I feverishly searched for Zsuzsa, my autism connection in Hungary, I got to hear about all the girlfriends of the cart owner and I received a kind invitation to be one of them. Upon getting that extension, Zsuzsa appeared and grabbed my arm and we retreated to her car.

Zsuzsa is a force. She pairs her flawless English with PhD studies in Applied Educational Theory, where her main area of interest was how the thinking of atypical children works. She has two children, one with learning differences, and in that child’s honor, she opened Ginkó Ház, one of the only  schools in Hungary where children with severe autism can attend and learn the state-established curriculum. Unsubsidized by the government, she does all of her own fundraising while presiding over the individualized instruction of each student and caring for her team of teachers.

She took me on a tour of the building that she bought for the school and she showed me the structures that she’s implemented to create a safe place of learning for her students. We sat down at her long lunch table and we were quiet for a moment. And then her first question to me, “How are you doing? I mean – as a parent, how are you managing?”

With this being her first question to me, it was clear that she intimately understood the pressures of this unique familial experience. She told me that she loved her students and she felt the heaviness of parental responsibilities. Her position as head of school allowed her to comfort moms who show up in tears because they are just So. Very. Tired. And dads who disengage or don’t understand why their child won’t listen to them. She mentioned the couples who just want to go out on a date but there’s no one in their circle who knows how to care for their child even for two or three hours, so they never get valuable “us” time.

We sat together in appreciation that we could speak so openly about this shared journey, which is often times steeped in chaos allowing for deeply entrenched self-actualization. The moments when you feel gutted, are catalytic moments in character development since usually the choice to be resilient is a luxury we’re not afforded.

Bonding over this reality was a pivotal moment in the creation of the Global Autism Coalition, as I realized that this connection is necessary, beautiful, and absolutely without borders.

I learned other incredible standards occurring in the Hungarian education system. There is policy to support an inclusion model, however implementation is difficult. Students are either in without help in general education classrooms or they are in special education classrooms – and there is not a lot of crossover. Parents end up bouncing their child from one school to the next as they realize that school doesn’t have the proper supports in place and many families face rejection from entering a new school usually due to the lack of professionals who have the expertise to teach uniquely to that student.

This is a hurtle that schools around the world face as they try to figure out standards to help this population thrive. It also points to opportunities for governments to make and fund policies that infuse the school systems to properly educate an untapped source of brilliant ingenuity.

The social support is also emerging as the label “autism” becomes more recognized, the symptoms become more identified, and there are channels of entertainment that portray autism as a loveable difference.  Many people still believe that autism is the result of a lack of parental attention and love, so parents treat their autistic children as their own shame and failure of upbringing, and try to keep it a secret.

This underscores the importance of educating the greater population about autism and researching the roots of stigma so that it can be undercut. With 75 million people around the world diagnosed with autism, we are not alone, even when it feels that way. Our connective tissue is seeded in strength and endurance and love.

How lucky are we to be in a welcoming league of parents who understand one another at such an integral level. It is better than seeking out sisters in a Greek sorority while traveling or finding a similar faith house overseas – it is a practice in shared resiliency to find an old friend who I’d never met before paving new roads, alone.