It was a massive honour to be asked to guest blog for the amazing AutismAwareness.com. They do wonderful work in not only raising awareness of autism, but supporting parents through their journeys. They reach millions of people every month who discuss, learn and explore topics of interest to special needs families.
This piece first appeared as a guest post on AutismAwareness.com
Having gone to great lengths to heal myself after my own troubled childhood, I didn’t arrive at my current state of mind quickly. It’s been a gradual thing over the last few years. Ever since my third child’s birth in 2014, which coincided with my eldest daughter Polly’s challenges becoming evident, life has been a total roller coaster. It pains me to say this, but we have way more downs than ups in my little family, and it’s been like this for longer than I care to admit.
The hardest part of 8-year-old Polly’s autism is watching how she treats 3-year-old Freddy and 5-year-old Clara. It went past standard sibling rivalry long ago, and morphed into something so ugly I can’t bring myself to say the words. Polly went through a phase of using me and only me as her punching bag (verbal and physical). I could handle that. It wasn’t pleasant, but I’d rather be copping it to keep the little ones safe.
Unfortunately, after a series of setbacks, she’s back to picking on them with force. Her anger and violence often comes out of nowhere. She goes from zero to 100 in five seconds, and after she’s hurt the three of us, I’m left bewildered, picking up the pieces. The very worst part is that she knows how to behave appropriately in public or with her friends. It’s just us she chooses to treat this way.
Seeing the effect of Polly’s aggression on Clara and Freddy has been nothing short of heartbreaking. Watching them copy the behaviour is tough enough, but when Clara takes out her own frustrations on Freddy it makes me want to weep. And it’s happening a lot lately.
Usually I’m as good at masking my sadness as Polly is at masking her high-functioning autism. Lately though, I’ve been told that I look tired, and am being asked a lot if I’m okay.
Just to be explicit, I am not okay.
I’ve made myself vulnerable recently, asked for help from the only people in a position to give it, and was told that they are too busy. I’ve also enquired about autism-related services, which were free six months ago, but due to funding cuts here in the U.K., they now cost a fortune that we don’t have.
I have had a terrifying glimpse into a future that I can’t even allow myself to think we might lead long-term.
“Friends” are dropping like flies, leaving me to question whether I’ve become a toxic influence. Am I unbearable to be around? It’s making me wonder.
My body started giving up; I knew it was only a matter of time before it did. It’s well-documented that chronic stress will eventually turn into disease.
This is how it starts.
This is how the rot sets in, and the bitterness creeps into your exhausted, aching soul. When you look around and see that everyone else is thriving, but your family is scraping the bottom of the barrel, barely surviving most days. It makes you angry and resentful. I hate autism for making me feel this way. For robbing me of the ability to enjoy my children.
I tell myself over and over that I’ve been through worse. My goodness, what I’d been through by the time I was Polly’s age! I will come out winning, if it’s the very last thing I do. Right now, though, these soul-destroying dark days are killing me.
“The kids will be fine,” they say. But what do they know? Are they experts in violent, challenging, autistic children? Of course they’re not. They rarely are. Well-wishing platitudes from insincere people have no place in my life.
Rise above it.
Some days I hate autism. If I could meet autism down a dark alley—my goodness, I’d kick its butt.
Some days, when the kids are finally in bed and all that’s left is the ringing in my ears, there are no words left to say or tears to cry.
And other days? I engage my reserves and summon every bit of strength I have to rise above the screaming and shouting and hitting and kicking and throwing and name calling. I dish out the positive vibes and mama love like there is no tomorrow.
Even when the challenges seem insurmountable, I’m able to rise above them and continue smiling.
On these days I win and, in turn, my children win. And when all is said and done, that’s all that matters.