I casually sip my tea while lying on the couch in this great new wrap my mom got me for Christmas. I’m reading a book I love and contentedly snacking on leftover holiday cookies in my quiet house. Justin, my 16-year-old with severe autism, is upstairs on the computer driving around Monmouth County on the Hertz-Rent-a-Car site, and Zach, my 12-year-old on the mild end of the spectrum, is on his Chromebook working on an assignment for school. It’s 10 days into the holiday vacation, and all is well at Chez McCafferty.
Five years ago I never thought I would be able to write this paragraph.
It used to be I would look at these long breaks with the kids with a modicum of dread. There’s not much to do in the week between Christmas and New Year’s Eve in Jersey, and often our days together were just filled with struggle. Justin had to be watched constantly; someone needed to be near him at all times for his safety, or in case he had an accident, or for what he might destroy in the house. Zach was more independent but still young, and we needed to know where he was as well. Sometimes Justin would have a meltdown if we ran out of places to take him. To be perfectly honest, the holidays were simply stressful, and the kids were often unhappy no matter what we tried to plan for them.
Thinking back to that period reminds me of dark days. The kids had difficulties sleeping through the night, so we were all exhausted despite melatonin and weighted blankets. Eating was a struggle, as both kids were really picky eaters and getting any protein into them was often a fight. Potty training Justin took many months and two attempts. Sometimes aggression from our eldest reared its ugly head. At one point we watched in horror as our typically developing youngest son was literally rendered speechless as his autism symptoms emerged. My husband and I were constantly on call, ever vigilant, waiting for the next disaster to befall us.
And then slowly, over the years, with therapy, love, their innate desire for happiness, and probably most importantly, maturity, things got better.
I made a vow some years ago never to promise any parent that things would improve with their autistic child. No one can predict the future like that, and I will not give false hope.
But I will say this.
We have been an autism family for 16 years now, with two kids on the spectrum. I now know dozens of families from interactions with parents from the kids’ schools, parent support groups, workshops, and POAC (Parents of Autistic Children) events. All of our kids have struggled. All of us have struggled.
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Autism is not an easy path.
But the truth is, as I’ve followed these families, some of them for over a decade, a theme has emerged for many of them. That theme is that things are calmer at school and at home. In general, these children and soon-to-be-adults I know have made significant progress and are happier in their lives and relationships with others.
Many of these families are once again experiencing joy.
Maybe you are reading this and your child has just been diagnosed, and you feel lost. Perhaps you have perused this article after yet another disastrous holiday outing with your child and are left hollowed out and exhausted. Perhaps you found this piece and are gearing up for yet another fight with your child’s school, and wondering how you will summon the energy to do this until he/she is 21.
Maybe you don’t know how you can stand one more moment watching him/her suffer.
I can’t stress enough in this marathon of autism how important it is to maintain hope. Grasping on to even one small moment in past years has enabled me to summon the strength to be the mom they need me to be, and to find joy in my life too, which is equally important. Today, for anyone reading this who is deep in the trenches, please know this, please cling to this, and please embrace this.
It may get better.
For the sake of your children, and yourselves, hold onto that hope.
This article was featured in Issue 113 – Transitioning to Adulthood