My Child’s Disability Is Invisible, And It Makes Me Feel Unseen, Too

Parenting any child in the age of social media, Pinterest crafts, participation trophies, and birthday parties whose price tag could make the queen blush is, at best, a complete disaster.

We are battling mom shaming, body shaming, cyber bullying, and the online knowledge of every creeper in our neighborhood on top of all the ones we worry about but can’t identify.

We worry about food allergies and non-organic produce, putting our kids in too many activities and allowing our kids too much screen time.

This isn’t about comparing one parents’ struggles to another because we are all in the trenches together, my friend. This is about a realization that some of us are hiding our parenting battles out of shame, embarrassment, or utter hopelessness.

Some of us are covering bruises and scars, war wounds and heart hurts from even our closest friends and family because–though we are sincerely doing our very best–we are convinced we are failing our extreme children because of their struggles that are wildly beyond our control.

With decades of experience working with children and adults with special needs, I can tell you that parents of folks with cerebral paulsey, spinabifida, downs syndrome, and other more physically prominent disabilities are freaking heroes and they should be hailed in the streets and given all of the praise, encouragement, and help we can muster.

However, when you are raising a child with a behavior diagnosis, you must continue at parenting level expert all while balancing the mask you wear when in public, at church, the grocery store, or even family functions so people will just nod and smile instead of passing the judgement that feels so heavy their hearts just cannot bear it any longer, all because, “well, he LOOKS normal”.

We know that Karens who judge are either afraid or uneducated, but we don’t have the energy to deal with either.

Because we have been up all night comforting our child’s night terrors and when they finally wake up for the day, usually before the sun, they are wild and feral as if they were shot out of a cannon. They usually begin with a series of poor choices–which we say because we never want our kids to think they themselves are ‘bad’.

By lunchtime our extreme kiddos have likely scratched themselves, punched doors, hurt their sibling, thrown toys, been in and out of time outs and time ins, spit on us, pinched us, made threats to our safety, and a myriad of other behaviors.

This type of onslaught of aggressive outbursts will continue on through picky eating at meals, lying about baths, and fighting over bedtime.

Friends, We. Are. Tired. This is the type of tired that coffee can’t cure and an entire box of wine couldn’t soothe.

We spend every second that we aren’t restraining our child to keep them and those around them safe with our noses buried in medical journals, articles, and websites researching our child’s diagnosis, medications, therapists, and scouring the internet and books for new behavior strategies we haven’t tried yet.

Date nights and Netflix with our husband are replaced with arguing over discipline or brainstorming new med routines or therapy approaches and trying to keep things smoothed over because we just can’t fight about it one more time.

We beat ourselves up over losing our cool and yelling because we were so far past worn out that we could no longer keep calm and grasp for intelligible words to talk our child through their meltdown and sometimes it feels like they only hear us when we scream.

We find ourselves crying into bathroom towels slunk in the corner of the cold tile floor next to the tub or into our cold coffee in our car on the way to work where we dread the calls from school or the next appointment for fear that this will be the final straw that causes our boss to fire us.

And don’t get us started on the energy it takes to wage war against IEPs, school systems, insurance companies, and pharmacies because we just can’t anymore.

We don’t even remember what it was like to have friends or girls nights out or vacations because we plan everything around med times and meltdowns, and breaking into the oval office would be easier than finding kid coverage we trust.

We are sad to miss out on another event, family party, or gathering because our extreme child lost it on the way there or went zero to 100 while getting ready.

We simultaneously worry that our boy won’t be invited to birthday parties or no one will show up at his, all while having to go to such an event makes us sweat at the thought of sugar-fueled foods with dyes and loud noises, unstructured chaos, and parents who don’t know our situation.

We are sure it isn’t long before people we love will just stop inviting us altogether because they are tired of us having to bail last minute.

And, for all of these things, we feel paralyzingly guilty.

For what we do and what we don’t do. For what worked and what didn’t. For what could’ve happened or what we wish would’ve.

The cycle never stops. We never truly rest. Our worry seems endless and our tribe is few. And we aren’t even mad about it because, honesty, it’s exhausting giving our story over and over to people who don’t get it–who can’t. We aren’t mad. We wouldn’t wish this life on other parents or the struggles on other kids.

We wish desperately that we could rescue our child from their struggles, but we can’t. So, we have choices to make.

We choose to keep going.

We choose to see the good in our extreme child.

We choose to go to the event because we want to go, not because behavior warranted it.

We choose to keep trying new tactics even when nothing else has worked.

We choose not to give up on our kid because we know who they really are and it is so much more than a diagnosis.

We are the ones they are talking about when people say, “they might be fighting a battle you know nothing about”.

It’s true. We are likely fighting many and none of them are visible, but they are very, very real. Even when we feel unseen, we are here, slumped over and weary, but We. Are. Here.

And there are lots of us, friends. We aren’t alone.

Keep reaching out. Keep proudly advocating for your extreme child. Keep fighting for equity.

And when you’ve yelled, when you’re uninvited, when you’re crying into your pillow, when you are feeling unseen, remember that anyone could’ve parenting your child, but YOU were chosen. You. No one else.

So even when it feels like a nightmare and you are sure you’re messing everything up, you are MORE than enough. You are EXACTLY when your extreme child needs.