We have three children, Vivi who is 14 and in 9th grade, Will who is 11 and in 5th grade and Mimi who is 9 and in 4th grade. I could tell you lots of things about our family. We take in shelter dogs, love to make up song lyrics, and are a house that has constant drop-in hours for friends and family. But what most defines us is that our son has autism. For eight years, autism has defined every aspect of our lives, from the food we buy, to the trips we do or don’t take, to the very structure of our days.
We don’t mourn the son we wish we had. We celebrate the one we got, quirks and all. The journey to meeting Will 'where he’s at,' and not where we wish he was, hasn’t been easy. We have spent countless hours and tens of thousands of dollars on doctor appointments, therapist visits, and working on plans... just to make new plans. His autism impacts us all. My girls are neuro-typical. They have their own challenges, but compared to Will, they breeze through life easily. We don’t take that for granted. Because of Will’s struggles, we appreciate the simple beauty in just getting through the day without a major malfunction.
Just because my daughters don’t have autism doesn’t mean they aren’t impacted by it. When they have friends over, they have to explain why Will is the way he is and why he deserves understanding and compassion. That’s not an easy discussion to have with your friends when you are still a kid yourself.
I’ve learned the hard way that I can’t bring Will to birthday parties unless we have two adults. And a reward for "expected behavior". And a car for a quick get-away. Being away from home brings many unknowns – maybe sensory overload for Will and acting out because he can’t tell us he needs a break. My girls will never say it, but I know it’s embarrassing when he melts down in front of their friends. We have to divide and conquer to figure out who will be the one to potentially exit stage left during a party.
Beyond parties, the girls pay a price for his autism. We are stretched thin driving him to after-school appointments, which means no after school activities for the girls. I’d like to convince myself they are so young it doesn’t matter, but it does. My oldest wanted to be in gymnastics. I finally enrolled her and she was terrible. She was in third grade and was grouped with the kindergarten students. She was humiliated and I felt like I failed her.
I know long term it doesn’t matter that she can’t do a cartwheel, and that my girls will be better, more compassionate people for having Will as a brother. When he isn’t overwhelmed, he is sweet and so much fun. Thankfully, those moments are frequent. They are proud he is their brother and, if anyone even thinks of talking poorly of him, they are the first to stand-up and defend him.
One day at school, Will has having a hard day. I was far from school, in a meeting, when his teacher called. Feeling helpless to calm him down from far away, I suggested to his teacher that she get Vivi and bring her into his class for a little while. Immediately, I felt guilty because she was nine at the time and a 9-year-old shouldn’t have the responsibility of calming down her brother during the school day. Luckily, Vivi had recess and was happy to trade playground time for time with Will in his class. It worked. Will stopped crying and was visibly calmer as soon as he saw Vivi’s face. Will’s biggest blessing is not me or his very devoted father, it’s his sisters. He may never be able to repay what they’re giving him, but in his own way he will try.
Like so many kids with autism, Will is loyal and intensely loving. It’s not fair. It’s not fair that Will has autism. It’s not fair that his sisters get less attention, fewer resources, and more responsibility. Dwelling on what’s fair does no one any good. Instead, we focus on what we can change instead of what we cannot change.
I can’t change the fact that Will has autism – or that his autism impacts us all – nor would I want to. For better or worse, autism defines our family and gives us all a greater purpose.
Michelle Hirschfield is marketing and public relations professional in the Chicago area. As an OOTKS Contributor, Michelle shares her life experiences juggling a career, family and child with autism.