The Bane and the Beauty of Social Media When Your Child Has Special Needs

We’ve all been there. You’re having a really difficult day so you go to Facebook or Instagram for a quick mental escape. At first it’s fun to scroll through and see what everyone is up to, but then it hits you.

Everyone looks so happy. Everyone is doing something you aren’t able to. Everyone looks carefree while you are trying to figure out how to get poop handprints off a wall. You’re trying to figure out how to make a nutritious meal out of Kraft Macaroni and Cheese and ramen. You look to the pile of laundry that is so old you need to add more laundry before you can even begin.

Here’s the thing: the pictures of the happy people are often illusions. They are often the one spot in a difficult day. The poster, special needs parent or not,  may be having just as challenging of a day as you but that one picture gives them hope to get through the rest of the day, so they post it.

When your child has special needs, Facebook envy is even more compelling. As I write this, there are gardeners loudly spreading mulch with various machines throughout the community in which we live. About every 180 seconds Caleb comes to me and says, “Man go home. I don’t like man.”

We have worked with his developmental pediatrician and his therapist to figure out why this bothers Caleb so. I think it’s a combination of fear (because the men wear masks), sound which hurts Caleb due to Hyperacusis, and disruption of his routine. Nothing helps and today will be a very long, very difficult day.

A few moments ago, Caleb left his room to come and tell me again how much he doesn’t like the man. I stopped typing, went to hug him and he pushed me away and began hitting himself in the forehead with both hands. Trained for years on how to handle this, I kept my face neutral and asked if I could do joint compressions on him, which he allowed. They calmed him for a moment but then he screamed, “Man go home!” and hit himself again before returning to his room.

This week a dear friend’s son, who is exactly my Caleb’s age, graduated from boot camp with the Marine Corps. My heart swells with pride for him and his family, remembering the little boy with chubby hands who ran through my house giggling in glee. I study this young man’s official Marine photo and marvel at all he has gone through in three months to earn this incredible honor. When my mind pipes up with “Caleb is still completely floored when he hears a lawnmower” I shush it and focus instead on the glowing family surrounding their amazing son.

I’ve written before how Caleb should be a sophomore in college now. It’s easy to forget this until I see pictures of his peers and all they are doing. I know I would have different worries if he was away and I remind myself of that often.

On one of the many special needs support groups I follow on Facebook, a mom wrote of going to a carnival with her family. Her four year-old daughter is on the autism spectrum and it was nothing short of a miracle that the family made it through the day without tantrums or meltdowns. The mom wrote of the victory of this moment. My immediate thought was that they probably passed families who looked at them with envy, wondering how they were able to have such well-behaved children.

We can’t know everything from looking at a picture. We can’t really know anything. We can’t know that perhaps the couple having the expensive meal is drowning in debt. We can’t know that the happy-looking family on vacation is dealing with untold stress that they keep to themselves. We can’t know, so what good does it do to think beyond the picture?

Moses, Caleb’s favorite Bible dude, had it right when he brought God’s Commandments down from Mount Sinai. All of the Commandments are sound, but “You shall not covet anything of your neighbors” is particularly applicable today.

Parents of children with special needs are often so broken from years of diagnoses, doctor visits, sad school reports, exclusion from social events and even more dire diagnoses that we are living below the surface. I had a physical therapist tell me that even my breathing is affected—it’s shallow because I am in a constant state of fight or flight. Like today, do I fight Caleb’s intense fear of the noises outside and try to help him through it, or do we take flight and escape the sounds, only to be 100% committed to do that every time there is work in our neighborhood?

It is so, so hard, believe me, I know, to stand our ground and try to work through difficulties. It’s exhausting and it draws upon resources that are already depleted. If looking at photos on Facebook or any other site pulls you down, maybe a sabbatical is needed. I have several friends who have tried this and felt great relief. We didn’t used to know so much about our friends. Perhaps when we are already feeling excluded and challenged by our lives, it’s best not to see what everyone else is presenting as their life.

On the other hand, I find great comfort in the support groups on Facebook. We share stories, offer comfort or solutions and just commiserate. Like I hope this blog does for anyone reading it, these groups remind us that even though we face inordinate challenges on a daily basis, we are not alone. We are never alone.

When your child has special needs, at whatever level along the endless spectrum of abilities, it’s natural to compare your life to others. My incredibly wise grandmother used to say: “If you’re going to be jealous of anything in anyone’s life, you have to be jealous of everything in their life.”

Her words echo in my head constantly and leave me able to say, with full sincerity: “If Caleb had to be born with all of these challenges, I am so grateful and privileged to be his mom.”

It is my hope that in peeking behind everything you may see on social media, you are able to say that too.