Social Media And Special Needs Moms: Truth And Beauty

A recent New York Times’ Op-Ed reports: “Scholars have analyzed the data and social media is making us miserable.” As the mother of three ‘linked in’ boys, I find it hard to consider this breaking news. No experts or scholars are necessary to ascertain how a kid feels combing over pictures of a gathering from which he’s been excluded.

And when it comes to their fifteen-year-old sister, who has an autism spectrum disorder, everyone is doing something more ‘exciting’ than my daughter. We are still working on independent living skills, so a good day is getting our socks on - generally, not documented.

Our reality vs. other’s media posts, however, does not make me particularly sad – or “miserable.” It’s just the way it is. Moreover, while I understand the gist – I don’t find the findings completely accurate.

Social media has enabled me to correspond with a small and powerful army of moms whose children share my daughter’s diagnosis – a rare genetic condition which causes cognitive and motor impairments, behavioral challenges, sleep and seizure disorders. These moms are as indelible as the chromosomal anomaly that brings them together.

In the safe haven of a ‘closed’ on line world, these women from across the globe create a safety net for each other. They are strong. They are struggling. There are many who are falling. But for every mom who says: “Help. I’m scared. I’m confused. I’m not sure how much more I can take,” there are ten who respond: “Me too. Hang in there. This worked for us. This is really, really hard.”

If it takes a village to raise a child, it takes several to raise one with special needs. While I am lucky to have an understanding circle of friends and family, the reality that hits in the form of a three am seizure, an erratic day at school or a very uncertain future can isolate and overwhelm. Knowing someone out there is walking the same road – wherever that road may be – can make an immeasurable difference.

Through social media I have found a virtual foxhole of moms reporting live from the trenches. We take meticulous notes, study and learn from each other’s experience. Together we endure and provide cover from difficult school personnel, ill suited medications, ‘off’ days and misguided strangers.

And yes, if I had only the more festive typical posts to bounce my experience off of, I would probably feel a little more out of step. Adults, on a bad day, are just as prone as kids to second guess themselves. I understand why and how, if not approached judiciously, the double edged sword of social media can bring anyone down.

As that Op-Ed also noted: “Americans spend six times as much of their time cleaning dishes as they do golfing. But there are roughly twice as many tweets about golf as there about doing dishes.” Much is a façade. I remind myself - and my kids - to tread carefully, to keep it real and to be kind.

In light of all that is fantastical out there, I am thankful to my virtual mom village for telling it like it is – and how they wish it could be. I appreciate their detailing the small victories, the comical moments and soul crushing days – because they are mine. I salute and am inspired by the intense commitment these women show their children and each other.

Some have partners, resources and support systems in place. Many do not. The divorce rate is high among the special needs community. Marriage and parenting a child with a debilitating condition is intense and ripe for strife. Difficult behaviors, sleep deprivation, the unmanageability of it all overwhelms. So many marriages fall apart.

Things fall apart, but these moms hold it together by reaching out, asking for help and holding each other up. They lose sleep and sanity, but they refuse to lose their kids– and they refuse to leave any mom behind.

I am grateful and motivated by these women - their grit, their strength, their passion – and the platform that brings us together.

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