Shining a light on an invisible population – children with disabilities – isn’t just part of my job at Voices for Healthy Kids; it’s also personal. While my teenage daughter is in the gifted program at school, my son is DisABLEed. Having two very different children is what inspires me in my work to support policies that improve the lives of all children whether they are more like my son or like my daughter.

For a family with a special needs child, social isolation is not new. My husband and I struggle to create bonds with neighborhood parents because we spend so much time in and out of offices with doctors, therapists, teachers and administrators advocating for educational and medical supports that are crucial for helping our son reach his full potential. It’s also hard to connect because we live in such different daily worlds.  While many of my neighbors are watching their kids play soccer, I’m on 24/7 watch with my 15-year-old son anticipating seizures, calming meltdowns and helping him with activities of daily living such as putting on socks and shoes.  

While mothering a son with different abilities has its many challenges, up until a couple of months ago we had a system in place. The pandemic put a halt to our system as we pivoted to a new reality of parenting, homeschooling and still advocating for health equity for people of all abilities during a global crisis. If you are not familiar with autism, schedules and systems are critical for children on the spectrum. It is jarring on any given day to step out of routines and can turn your world upside down.

While mothering a son with different abilities has its many challenges, up until a couple of months ago we had a system in place. The pandemic put a halt to our system as we pivoted to a new reality of parenting, homeschooling and still advocating for health equity for people of all abilities during a global crisis.  

Keeping a routine when the outside world is in chaos helps us maintain the normalcy my son needs to thrive. We are working to survive this new normal by waking up, getting dressed and having breakfast at the same time and in the same order each day. We also go on morning and late afternoon walks and eat nutritious meals together. The physical activity and healthy food help my son get mentally focused for his learning day.

Internet access allows not just my husband and I to work our day jobs, it also means my daughter gets the schooling she needs and that son can stay connected to his learning community where he takes virtual lesson in occupational, speech and music therapy.

As difficult as our lives are now – after all, we’ve gone from having 12 hours of daily expert assistance to help my son thrive and learn, to just four hours – I realize how much more difficult it would be if we didn’t have safe sidewalks for our strolls, healthy meals to fuel our bodies and internet access to retain some semblance of life pre-COVID-19.

These are trying times, yet I remain thankful. I am thankful I have a job that provides flexible work schedules, sick leave and paid time off so I can juggle the needs of my family. I am thankful I live in a community that is walkable with access to nature trails. I am thankful my school district is able to prioritize the health and wellness for our kids and is delivering meals every day that schools are closed.

But not all communities have these same things readily available. The work I do enables me to support crucial policy change that enables not just my children, but allchildren to live healthy lives. Voices for Healthy Kids strives to make every day healthier for every child, regardless of ability. We want all children in all communities to have access to affordable healthy foods and beverages, safe places to play and get active, and the tools they need to learn. Our ultimate goal is to improve or create equitable policies that will make the places kids live, learn and play healthier.

Voices for Healthy Kids has helped communities make strides towards more equitable societies, but the passionate mother and advocate in me wants to do so much more. More for kids like my gifted daughter. More for kids like my son. More for kids and communities that don’t have the same access and privileges we do.

Humans are amazing – we have the ability to adapt and to thrive in difficult situations. In writing this blog, I am reminded that raising a child with special needs can be incredibly challenging. I am also reminded that everyone has challenges and opportunities to learn, grow and thrive during this new normal. I encourage each of us to think about how our friends, families and colleagues are adapting and to have grace knowing we are all in this struggle together.

And, in closing, I have one more request: If you know a special needs mom, reach out and let her know she is amazing! We are all juggling a few extra balls. A little recognition goes a long way.  

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Marla Hollander is the National Partnership Manager for Voices for Healthy Kids. She guides a team approach to collaboration and partnership connecting over one-hundred national organizations to advance policy and mission-aligned efforts. Read more about Marla here.