Here’s what most people just can’t understand about being the parent of a child with special needs…
We are never honest with you.
Not all the way.
It’s nothing personal.
It’s not for a lack of trust in you.
It’s not because you did anything wrong.
It’s because we are certain you won’t understand.
And that’s OK.
We don’t expect you to…not fully.
See, when a parent of an extreme child says “I’m tired,” what we really mean is that we absolutely cannot anymore.
We have nothing left.
We are a brand of exhausted they don’t even have human words to adequately describe.
The idea of self-care feels hilarious to us.
Not because we mean to diminish your hair appointment or long run, we want that for you.
But because it can legitimately take DAYS for us to relax enough to begin to breathe normally, much less, actually recharge who we once were as human people before extreme parenting.
Our kids remain our greatest gift.
We love them with a ferocity many can’t fathom because we HAVE to fight for them.
For their accommodations,
For their meds,
For their appointments,
For their equity,
For their basic human rights.
And we might share that side with you, friend.
Because most parents can understand and support another mama’s desire to advocate for her kids.
But the fight at home, when everyone else is riding bikes and enjoying popsicles on the sidewalk this summer, those are the things we don’t fully share.
Because it can be ugly,
It shouldn’t be.
But it is.
Because so few really ‘get it.’
It is rare to find another human who lives every minute of every day ‘on’ because if they rest — even for a second — it could mean danger for their child or someone else.
Maybe our kid is lower functioning so they risk falling or exploring an outlet with a fork.
Maybe our kid has behaviors so they may become impulsive and things get broken.
Maybe our child is emotionally disregulated and they can cause harm to themselves or others.
Maybe our child’s anxiety gets triggered and their reaction is so loud we are in constant fear of a call from the police or DCS or our landlord.
No matter what our specifics, we NEVER fully rest.
When our kids aren’t with us, we exist in a sort of paralyzed sense of fear for when they may need us or the phone might ring or something may happen.
Friends, it is exhausting in a kind of way we don’t share because we truly don’t expect you to understand.
But even without really living it, you can be kind.
You can offer an ear (without judgment).
You can come sit with our kids so we can shower or nap.
You can send a coffee gift card or a text of support.
You can hold our hand while we cry and sit in the silence with us.
Because this life isn’t what we chose,
It’s not what we expected,
It’s not something we’d wish on anyone
Or expect others to embrace,
But we also wouldn’t trade it for anything.
Because as much as extreme parenting
Lies to us,
Convinces us we are failing,
Our kids, in all of their struggles, desperately need us.
No matter how many times our extreme children yell hurtful things, thrash and throw stuff, or insist they hate us, they don’t.
They will continue to come back to us because we are theirs.
And mamas, that is sooooo hard.
It’s so tiring.
It is endlessly maddening.
But it is ours.
And we’re in this life together.