My 12-Years-Too-Late Autism Mom Epiphany
What every mom of neurodivergent kids needs to know from day 1 (but I don’t want to be the one to tell her!) 😅
I don’t regret any of the sacrifices I’ve made for my kids. But if I’d known then what I know now, I might’ve taken my foot off the accelerator just a bit.
But I had to wonder as I pulled up to the solitary asphalt sliver that leads in and out of my neighborhood, as any mom who drives kids around for 9 ½ hours a week would.
A construction-orange reader board had sprouted out of the pavement overnight with its pixelated message flashing.
Screen one: Construction Starts May 6
Screen two: Expect Delays
Over and over.
Every sunshiny morning when I drove my kids to school.
Every time I returned home.
When I had to run out to pick up another round of prescriptions.
And back again.
When I retrieved my daughter from school and turned around two hours later to nab my son.
When I drove them to therapy and when we straggled home
Expect delays.
By the 79th time I’d passed the sign, I had to wonder whether Someone other than just the Coeur d’Alene Highway District wanted me to heed this warning.
As if reminding me of the lesson I’ve been learning (and relearning) this year.
Slow down.
Pace yourself.
Relax.
This is going to be a long trip.
Just when you finally push past a milestone, your kids age up, the bar gets pushed higher, and there’s one more problem to solve.
Maybe it’s that we just ended another school year. Or maybe it’s that I’m coming to the end of myself after mothering these amazing children and all their extra for more than a dozen years.
I’ve pushed so hard for so long that now I don’t have a choice but to slow down.
I need only look at the moms I know who are a decade or more ahead of me on this journey — still running “mom’s shuttle service,” trying to figure out medications, ever anticipating appointments with specialists, and wrestling a broken system to get their kids some help — to know that this is a marathon.
One that may not end as our children grow up or even when they age into adulthood.
While parents of neurotypical children can assume that after a couple of months, their kids will sleep through the night. And after a few years, they’ll be fully potty trained. Tie their shoes. Sit still-ish at a desk. Read. Write. Drive. Graduate. Move out. (And did I mention sleep through the night?)
But we have no such guarantees.
Maybe our kids will be ok.
I hope they’ll be ok.
But chances are good they’ll need Mom in some capacity even when they’re 20 or 30 or beyond.
“The days are long but the years are short,” doesn’t apply here.
We’d be wise to expect the developmental delays inherent in our kids’ diagnoses.
Plan for them.
If we want to make it to the finish line (an ever-moving, possibly imaginary, but always hopeful destination for us special needs moms), we have to go at a rate that is sustainable now, and all along the way.
It’s advice that’s easy to give, yet so hard to follow.
But that’s exactly what I observed Kristen LaValley doing so well while reading her Substack about faith, work, and life with her neurodivergent twin toddlers.
There was the waiting for early intervention preschool.
Achieving the first IEP.
More waiting for the diagnosis assessment.
When she wrote about how both her little ones had been “dysregulated” (NeuroMom code for growling, hissing, whining, wailing, biting, throwing, climbing, flipping, shrieking, smacking, screeching, etc.) every day for weeks, I felt so much compassion.
I know what it's like to parent not one but two neurodivergent kids and their delicate nervous systems.
And when she noted that the one good day they’d had was when she did O.T. activities with them from morning ‘til night...
I felt exhausted as I remembered the year we went to the Oregon coast and I first discovered that if I just spent every waking moment (and some of the should-be-sleeping ones, too) co-regulating with one of my kiddos, AND there were no demands whatsoever on them, I could in fact reduce their tantrums. 😵
And when she shared that she’d made the impossible decision to scale back her work (work that provides needed income for her family and meaning to her heart) so she could support her girls full time, I could so relate.
I’ve walked that excruciating road of cutting away at the work and passions that make me me, to be there for them. Because that’s what you do when your kids need you.
But here’s what Kristen did so well that I’ve so rarely been able to…
She wrote about how she was putting part of her work in hibernation mode. Knowing, hoping that she could bring it back to life again, hale and healthy, once her littles are more settled. Established in their new school.
In short, she counted the cost of her sacrifice.
Yes, I’m sure it looked easier on the page than it was in real life. I know there is grief there.
But when faced with similar decisions in the last decade, I’m the one positioned with one foot planted on the dock and the other on the boat as it pulls away — until I’m more likely to fall in the water than land on either side safely.
Rather than mindfully considering whether I’m able to complete the task I’m about to undertake. Or calculating how much I am willing and able to give. I try to cling to both/and until it costs me too much.
Count the cost.
This is what every newly minted autism mom needs to be told while walking out of the psychologist’s office, diagnosis report in hand.
“Oh, Mama,” I’d hug her and say.
“If only you knew what was ahead of you.”
“Pace yourself.”
But then I’d stop myself because that’s not exactly encouraging or helpful, is it?
Who wants to hear that while your life might get different, there’s a good chance it's not going to get easier?
That the dysregulation your child exhibits now could very well look startlingly similar five or ten years down the road?
But bigger. And scarier. And somehow even louder? And with higher stakes in the world.
That you may still be getting up with them multiple times every exhausting night.
That the insurance battles would never end but drag on into one epic and unfair war.
That life would become just one huge pile of…paperwork.
Of course not.
But this kind of grim reality check can be helpful once in a while.
To give us perspective about the epic task we are trying to accomplish.
Because here’s the truth…
If we want to be there to care for our kids in the long term (and I know you do). We need to care just as well for ourselves right now.
That’s not to say that it’s always a choice or that we shouldn’t make sacrifices for our kids, but that we should be mindful when we do.
This is the ultimate endurance race.
And whatever the roadblocks, traffic jams, and hold-ups you’re experiencing right now, there are bound to be more down the road.
When I look back on our journey thus far, I probably wouldn’t change much. What would I cut? The months of daily vision therapy homework that let my son fully see and engage with the world? The frantic application to the special school that’s helping him overcome learning disabilities? Speech? OT? ABA?
Of course not.
My guess is that you’re doing everything just right for what your family needs right now, too. Managing as best you can in sometimes impossible circumstances. But let me leave you with a little advice, from one NeuroMama to another.
And I’m not about to prescribe a high-intensity self-care regimen that only causes more stress when you can’t find time to follow it.
This is coming from the woman for whom taking a 4-minute shower before running to school pick up 3 minutes late is an accomplishment, the one who’s sitting here typing to you with the crusty remains of a manicure she can’t find a second to strip off her nails.
The bar is pretty low here.
Just make small changes where you can.
Don’t skip lunch. Don’t feel lame or guilty about going to bed early. Exercise when you can. And take 10 seconds to stretch and suck in a deep breath when you can’t (you’ll feel so much better).
Spend time with God. A two-minute devotional or listening to an audio Bible still counts!
And stay connected with a friend who at least tries to understand what your life is like. Even if it’s only online.
I know it’s so hard, but try to ask for help for the things that you don’t have to be the one to do. And when you’re setting up supports and services for your child, don’t be afraid to push back a little and ask for the days, times, and locations that work best for your whole family (including you, Mama!)
Just be sure to leave a little gas left in the tank.
It looks like this is going to be a long trip.
::
On May 6, I pulled up to the bridge anticipating a long line of impatient motorists at a standstill.
I’d rushed us all out of the house.
“We have to be on time today, construction is starting on the bridge,” I called down the hall to my kids before we left.
But when we pulled up, there was that reader board flashing:
Construction starts May 9.
Expect Delays.
But then, I should have expected that.