We have three children, Vivi who is 9 and in fourth grade, Will who is 6 and in Kindergarten, and Mimi who is 4 and in Pre-K. 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 three 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 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 “off the radar.”
Just because they 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 in the single digits.
I’ve learned the hard way that I can’t bring Will to birthday parties unless we have 2 adults and 2 cars for a quick get-away, if needed. Being away from home brings many unknowns – maybe even 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 often. They are proud he is their brother and, if anyone even thinks of talking poorly of him, they are the first to stand-up for Will 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 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 got involved in the kids’ school. I am the Campus Parent Representative (CPR) for their elementary school – a position created by our school district available at campuses from elementary to high school district wide. In this role, I set up educational programming for other parents of kids under the special education umbrella. I started a sibling support group for the kids, like Vivi and Mimi, who have a brother or a sister with special needs. This is a once-a-month group that meets over snacks and conversation. Nothing too heavy, nothing too structured. Just kids sharing as many or as few of their feelings as they wish to share. I think the real value is in seeing that they aren’t alone. The group is led by a teacher who has a brother with special needs. She’s walked the path and knows price – and the payoff – of living in the shadow of a disability.
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.
If you have a child with a disability, I am sure you know that it takes a village to help raise a kiddo with special health care needs.