by Kimberlee Rutan McCafferty
A note from Marcia..
This guest post is by Kimberlee Rutan McCafferty, mother to two sons on the autism spectrum and an Autism Family Partner at the Children’s Hospital of Philadelphia (CHOP). Kim is also the author of a blog at autismmommytherapist.wordpress.com. Kim’s book Raising Autism: Surviving the Early Years is on sale on Amazon here.
Now Here’s Kim…
I saw you in the parking lot this morning. To be honest, I noticed you and your son while we were both checking out at the pharmacy, and given that I believe your boy, like mine, is on the spectrum, you were probably picking up medication like I was (I’m on a first name basis with all the pharmacists). I saw how you struggled to keep your possibly five-year-old son from running away, watched as compassion chased frustration across your face. When my boy let out a loud “eeee” I saw your head snap over and look at us. Our eyes met briefly- I offered you a smile, you returned it with gratitude.
Sometimes, when I’m having a tough moment with Justin, my severely autistic non-verbal boy, seeing someone else from our “tribe” can make all the difference.
I left a little bit after you, and saw you across the parking lot working to get your kid in the car, full-on meltdown in progress. I wished I could help you, but couldn’t risk my boy wandering away, so I stowed son and meds in the car and left. When I glanced behind me I saw you get into your seat, hopefully crisis averted.
I want you to know I was once you.
We’re in a much better place now. And because you’re one of my tribe, I’m going to tell you our secret to getting there.
Not too many years ago I’d take Justin out, my body on full alert, never knowing how he’d respond to our errand or outing. Sometimes the event went beautifully- sometimes I was struggling to even get him out of the car. I kept at these trips though, believing that getting him acclimated to the car, to waiting, to sometimes having to make a change in plans would pay off down the road, offset the bruises and bite marks that often bore witness to my grand plan to get him out in the world. Some days I wondered whether or not it was worth it.
Back then, around the kindergarten/first grade years, everything seemed hard. Potty training took over a year and two separate attempts. Eating anything other than a carb was hit or miss. Crying and meltdowns were a staple of our existence.
Sleep was an elusive dream. I really, really missed it.
As stubborn as my boy can be his mother is even more so, and we perservered. I continued to take him out, and over time, he’d come to me with sneakers in hand begging to go somewhere. Using meds and different techniques we learned how to soothe our boy to sleep, for which I am eternally grateful. A couple of years ago I even got my kid to like lettuce and broccoli (my crowning achievement, it will go on my tombstone).
Eventually, his primary emotion was happiness.
We still struggle. Justin has an ancillary diagnosis of OCD, and while medication defuses it, the disorder is a bigger challenge for us than his autism. When enmeshed in the throes of it he is almost manic, impossible to divert, unhappy. Fortunately medication has alleviated some of the symptoms, and when he’s free of its shackles, he is joyful, engaged with his family, at peace.
We try to help him be in that place as much as possible.
About eleven years into our autism journey our boy seemed to relax, and we found ourselves not having to watch his every move, follow him room to room, always wonder with a little panic in our hearts where Justin was. It took a long time to get to this place. We prefer to dwell here.
And I know, although your boy may be only five, it may seemed you’ve already lived a lifetime with him.
I never promise anyone things will get better. But as I watch you speed away I wish I’d had the opportunity to tell you that the landscape of my life, the ease with which we generally get through the day, is nothing I could have predicted would happen all those years ago when I struggled multiple times daily with my boy.
I promised I’d tell you our secret, so here it is.
First, get help when you can, from your child’s school, or from an ABA therapist if appropriate. Tackle one issue at a time, be open to trying different approaches, you never know what will work. Take care of yourself, take a break from your child when you can.
Admit defeat at times, and go on to tackle something new.
And the secret? The reason my non-verbal severely autistic son loves his life, and my mildly autistic son is shedding his 504 and running for class president? It’s this- don’t miss it.
The secret, my struggling friend in the parking lot, is a tenacious grip on hope that things will get better. It’s being relentless in chasing after happiness, peace, and a safe world for your child and family.
The secret is never giving up.