Keeping perspective: social media and special needs parenting

By Natalie Roberts-Mazzeo, Writer, speaker and founder of Miracle Mama

Modern technology is an absolute blessing for parents who are raising a child with a disability, diagnosis or additional needs. It allows for advancements in medical and therapeutic treatments, not to mention adaptive and communication equipment.

Then there’s the world wide web enabling special needs parents to connect with families all over the globe. Think about the parents whose child receives a rare diagnosis, so rare that there are only five other children in the world living with it. Imagine the feeling when they can connect, share and learn from one another via the internet.

We really are lucky to be living in these times, fifty plus years ago things would be very different. I often think about what it must have been like for parents raising children with additional needs well before our time and the huge isolation they must have faced.

I’d like to take this moment with the freedom I have as a parent living in the modern world, to remember all the special needs families who have come before us, who had very little access to supports. Imagine having to navigate this journey without access to the web, without modern medical interventions and therapies, or even the social mindset of ensuring inclusion and diversity are an integral part of our community.

This leads me to social media – the modern-day communication tool that allows us to reach out and connect 24/7.

Not long after my daughter was diagnosed, I spent months googling and researching, then I decided to take a look at social media. Maybe I would find the answers there? Maybe a parent would have a child with the same condition and maybe, just maybe there would be a cure? It was the portal to incredible therapy opportunities and a place to connect with incredible people living similar journeys. I recall typing the word ‘polymicrogyria’ into Facebook, a word that initially terrified me. I was surprised to find a Facebook group in America with incredible parents who were all suddenly thrown together because of one word that changed their lives forever.

That’s the thing about a child diagnosis, or any diagnosis for that matter. It doesn’t discriminate based on tradition, race or orientation. As a result, what often occurs is that parents are now united through their child’s condition, despite their background. It’s a powerful part of our journey. I remember the support that flooded through the screen from parents, literally all over the world. They reminded me about the potential of my daughter; that despite her diagnosis, and despite the fact that it felt like everything was being ripped away from her, she would change my life.

So then begins a whole new journey through social media.

There are thousands of Facebook support groups that can act as incredible educational tools, with topics ranging from equipment, medications, therapies, feeding and more. Yet it can also feel like an absolute vortex of information overload and we can find hours have passed and the one thing we jumped online to search for, was the last thing we found, as we mindlessly scroll and scroll until past midnight.

I’m a massive advocate for social media and the web, it enabled me to set up an online business to further support special needs mums, not to mention discover therapies and communities I would have otherwise have never connected with.

Yet I have also been caught up in the scrolling paradigm without realising just how much time has passed. The times where I’ve wanted to enquire about communication tools and PODD books, only to end up looking at a glamorous Instagram profile of a mum and her daughter with cerebral palsy with matching outfits!

Then there’s the comparison-itis – we all get it at some point. We have to remind ourselves that, even in the special needs world, the highlight reels may not always show the full picture.

Trust that you and your family are totally rocking it, and no matter what is going on in the social media world, you’ve got this!

Our children hold so much potential – sometimes it’s not the therapies, not the communication tools nor the adaptive equipment that can bring that out.

Sometimes, it’s simply in the presence of a supportive and loving environment, in the spaces of just being together, embracing life together and being 100% present in the moment with your child.

Sometimes we spend so much time looking outside of ourselves, outside of our orbit that we don’t see that the answers are literally right in front of us, with our children, living in our own way, through this special needs journey.

Absolutely owning what works for us, and honouring that it may not work for another family. The diversity of our childrens’ diagnosis are just as vast as the way we show up in them, as a parent, carer or educator.

So yes, go ahead, by all means post your photos, celebrate and educate, share and scroll until your heart’s content, but make sure you come away feeling energised, inspired and most of all happy to live the life that is beautifully and perfectly yours.