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Marijke Jones
BY Marijke Jones

Why Every Parent of a Child With Special Needs Should be Humaning

I have a friend who is in the trenches of childrearing, with eight-year-old Ben who is on the autism spectrum and eleven-year-old Danny who is way, way smarter and more sensitive than his peers. (Typical question: “Do you ever wonder if this is all leading up to one person? The whole world and everyone on it, all events, all choices… is it preparing the world for one person to do something so amazing and wonderful that it will be remembered for all of human history?” Ten. Years. Old.)

My friend often uses Facebook as a place to vent about her daily life. Having raised two children who did not fit “normal parameters” in various ways, I always feel compassion. I also frequently laugh because the crazy details and are so spot on for any mom:

You know that moment you hide your razor in panic after your son shaves his eyebrows? It’s a week later and I still can’t find it.

…and…

How do you teach a 1-year-old that 4:30 am is not an appropriate time for cheese?

But one day this past summer, this one tore my heart up:

I wish I could do normal errand running with Ben without it turning bad.  I wish I could keep my cool when things go bad. I keep it together 70% of the time, because I know it is a sensory issue and his brain is freaking out. So I expect him to seek sensory input (running carts into things, walking into things, etc). I plan for it, but sometimes …..

I just want easy.

I just want normal.

I just can’t handle it and I snap.

So I am the mom that abandons the shopping cart in the shoe department and hightails it out of the store.

I am the mom that snaps, that cries, yells shut up to the profanity spewing out of her 8 year old and drives too fast to get to a park.

I am the mom that sits in her car to calm down while her boys play at an empty park without her hovering over them because sometimes mom just needs to CALM DOWN.

Because sometimes I fail and I hate failing.

Don’t Call It Failing. Call it Humaning

While I was still catching my breath from this bit of wrenching honesty, a friend of hers replied with this:

Don’t call it failing. Call it humaning. I am human at times in caregiving for my mom. I know what you mean about wanting normal. ((((HUGS))))

This little gem of kindness and insight brought tears to my eyes. I think, as parents of special needs kids, we focus primarily on what our children need. Understandable, but as caregivers/advocates/constant answer-finders/human beings dealing with unpredictable and volatile little people, what about our needs?

I have a whole list of things that helped me (or helped others and I wish I had done them more). But first, I think the most important thing I can say is this:

Sometimes, it’s just really, really hard.

Despite my strategies – some healthy, some not so much (hello, binge-eating) – the thing I needed the most is what I think every parent of a special needs child needs to hear 80 times a day: If it’s hard, if some days you just want to put your head down on the counter and sob, you’re not doing it wrong. You are not deficient, or weak, or not informed enough. Parents, in general, are prone to fears that they are screwing up, but parents of special needs kids should all win awards just for getting out of bed and into the fray again. There’s stamina and then there’s stamina, and my personal opinion is that, in that department, Navy SEALS got nothin’ on us, baby.

Not that it’s pretty. Sometimes we feel empowered, sometimes calm, sometimes fierce in the face of obstacles and bullies and ignorance. Mostly, though, we just plain get through it. We get across the finish line (whatever that may mean for us), breathing hard from years of dogged determination, with our hair askew, eyes wild, one shoe missing. We have survived the battle. We are humaning.

And battle requires a certain “whatever it takes to get through it” mindset. So forgive yourself your weird little dysfunctional-looking moments, like driving several times around your town on the way home from the grocery store. Don’t feel guilty. That just adds to the pressure cooker. Just give it to yourself, allow it to make you feel better, take a deep breath, and move on.

A few other suggestions and mental adjustments to help with humaning:

Community, Community, Community

I cannot overemphasize the importance of compassionate support. Mine was my husband, and, for a short wonderful period, the other parents in a specialized school that my son attended. My friend uses Facebook because her main parent-confidants are not local. Find a place you can gnash your teeth and make your dark jokes and get hugs, virtual or otherwise.

Exercise!!

I never got past long walks myself, but it helped. One friend got into marathons and swears it saved her life. One installed a punching bag in her garage and boasted that not only did it help her through the worst days, but she also got great guns.

Lower the bar

Seriously. If you’re a Type A perfectionist, adjust how you define “perfect.” Is everyone still alive and fed at the end of the day? You did good. Watch something completely self-indulgent on TV, let it all go, and try again tomorrow. Do not underestimate the amount of time and energy it takes to regroup.

Celebrate little victories

Every day, even if it’s tiny or silly. Make it real by telling your spouse, your friends, your child. Mean it.

Spend time away from your child/children.

Move heaven and earth for this one, whether that means an art class or a day or a weekend. If you need to trick yourself into doing this by telling yourself you’re really doing it for your children, fine.

But mostly, cultivate humor and self-kindness. It is super hard, what you’re doing, and don’t you forget it. Do your best, love the stuffing out of your child, and for heaven’s sake, don’t get down on yourself for humaning.


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Marijke Jones

Written on September 27, 2017 by:

Marijke Jones is one of the authors and editors of the recently published resource guide, Child Decoded: Unlocking Complex Issues in Your Child's Learning, Behavior or Attention. She received her BA from Cornell University and finally settled down in Colorado after living in Japan and traveling extensively. She has been a copy and developmental editor for over ten years and has also published essays, mostly about her experiences raising, homeschooling, and trying to figure out her twice exceptional son. A former therapist who specialized in trauma, she believes that monitoring children’s emotional and mental health is every bit as important as remediating their learning issues. She lives with her incredibly patient husband in Louisville, Colorado, and occasionally sees her adult children when they are in between adventures or out of money.
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