By Jami Ingledue
If you met my kid on the street, you would think she is perfectly normal. Charming and witty, in fact. What you don’t know is that she has spent her young life struggling with disabilities and illnesses that you can’t see.
Many children who suffer from depression, generalized anxiety disorder (which is not the same as teen angst), ADHD, executive function impairment, ODD, dyslexia, sensory issues, and/or are on the autism spectrum can “pass” for normal, their symptoms attributed to bad behavior or (everyone’s favorite) bad parenting.
But it’s not that simple. Here are some things parents of “neuro-divergent” kids want you to know.
1. The problem is NOT that we or our children just aren’t trying hard enough.
The truth is they are struggling against overwhelming difficulties, and it’s exhausting. So many of them are exhausted from holding it together at school every day. Many are good at compensating and work very hard at being “normal.” But when they get home, it all goes to hell. And they fall apart spectacularly.
2. We’ve tried everything.
Please don’t tell us we should “just try this” or that our child “should be doing that.” Don’t you think we’ve tried every solution under the sun? Don’t you think we worry every minute of every day that our child is not where they need to be and wonder how in the hell they will make it in this world? We have. We’ve considered every fix imaginable. We are never, ever without worry and for many of us it could continue for their whole lives.
Also, we are so often not believed or trusted, by teachers, doctors, school administrators, mother-in-laws. We have to fight for every single accommodation, every doctor referral, insurance coverage, everything.
3. We’ve agonized over the decision to medicate.
No parent just casually makes the decision to put their kids on medication, especially stimulants that are controlled substances. We don’t do this so we have an “easy fix.” As if going to the pharmacy every month, shelling out the money, and getting your kid to swallow a pill every day is easy. We’ve talked with doctors and teachers, we’ve had them tested, we’ve filled out a million forms, we’ve lost sleep at night wondering if we’ve made the right decision.
4. Natural consequences do not work like they do for “normal” kids.
A kid on the autism spectrum will NOT necessarily eat if he gets hungry enough. A child with anxiety will NOT necessarily learn from her mistake of forgetting her homework. Instead, she will most likely give in to all of her anxieties and insecurities and just give up completely, berating herself for being such a failure.
It might look like we’re coddling our kids. It might look like we’re indulgent helicopter parents. But it is just not that simple. We can’t always just let our kids have free play and learn to resolve their own conflicts, because they don’t react and learn like “normal” kids do.
5. A top-down, authoritative approach does not work for these kids.
Attempts at this kind of parenting will likely lead to increased anxiety or a complete shutdown or a spectacular meltdown. Boundaries and limitations are extremely important, but expecting them to change their behavior just because we put them in time-out or ground them is completely misunderstanding the problem.
6. There are hours upon hours upon hours of unseen coaching going on behind the scenes that you don’t see.
So much work goes into trying to train their brains to be able to handle their condition and get on in the world. In our case it was hours of cognitive behavioral therapy to learn to deal with anxiety and not shut down. Hours of talking her through anxiety attacks and depressive episodes.
7. If we are late or miss an event, it’s not because we are unorganized or we don’t respect you.
It’s probably because there was a screaming fit or an anxiety attack and we couldn’t get our kid to leave their room or take a shower or put their shoes on. And I am 30 minutes late because it took that long to talk my kid through a panic attack, and then I had to take five minutes to cry in the car and pull myself together. And we can’t always attend events because it’s just so HARD, and we’re already so tired. We’re not ignoring you.
8. It’s never-ending.
We can’t just hire any babysitter, drop our kids off at camp, sign them up for group sports, let them have the freedom of a normal teenager. Every decision is fraught in some way. It’s relentless, and we’re always just waiting for it all to fall apart again.
9. We feel alone.
It’s hard to talk to other parents honestly about our kids and their achievements. Your kid made the honor roll? Great. Mine didn’t kill herself. Yay! Not exactly good for conversation.
10. Our kids are often excluded and have trouble making and keeping friends.
And it breaks our hearts. Over and over again.
So please, when the judgmental voice in your head (I have it too) starts telling you that parents these days can’t handle their kids—pause. Let there be a kinder voice that reminds you that we can’t know what is going on in other people’s lives, and we are all doing the best we can. We are carrying a heavy weight, and we need help with the lifting, not the additional burden of judgment.
Previously published as ‘What I Want Parents of Normal Kids to Know’ in The Wild Word magazine.