By Kristina Tober
I admit it. I am not a “Super Autism Mom.”
I’m always amazed when I meet or read about parents who champion new schools or lobby for change to improve the lives of youth and adults with autism. Without parents like these, my son wouldn’t have the opportunities and services he does.
I can say that I’m “Super” when it comes to loving my son with autism, and my older two boys. I also love my husband and cherish our marriage. I would also say that I can be super fierce when it comes to fighting health insurance companies, advocating for services and sticking up for Luke in the face of ignorance.
I remember meeting a family early on in our autism journey whose son was the same age as Luke. Both boys were receiving intensive intervention services, but their son “got better” while ours stayed on his own trajectory. I chastised myself, wondering if I had just spent more time working with him and adding more therapy, if Luke too would have improved at the same rate. (It’s still unclear why some kids “grow out” of autism) I even had a therapist tell me that my two older boys needed to understand (at ages 4 and 5) that Luke needed all my attention. (We stopped seeing her shortly thereafter; my other sons needed me just like Luke did, and I wasn’t willing to lose out on the joys of parenting them.)
Being a “Super-parent” to a child with autism requires the ultimate in juggling and multi-tasking. It requires sacrifices, compromises and the ability to let go of a lot of guilt. I don’t pretend to have all the answers when it comes to parenting a child with autism, or parenting typical kids for that matter. I can only share some tricks to sanity that I learned along the way:
• Get over perfection, in anything and everything.
• Find good caregivers, respite services, and camp programs like Ascendigo. It’s ok if you let a sitter pick up your child after therapy sometimes, particularly if it allows you to attend a sporting event or even do homework with your other children. Feedback from one session isn’t going to change your life, and if it’s that important, it should be talked about when everyone can focus – not when you’re chasing your child out the door. And what’s better than sending your child to a camp where you know the staff can willingly and skillfully handle any behavior while making sure your child builds confidence and learns how to waterski!
• Keep in mind that your son/daughter, despite the autism, is still a kid. They need downtime like every other child. They want to watch a video (granted it might be the same 330-second segment over and over). They become teenagers with hormonal mood swings who don’t want to be stuck at home with you. And eventually, like every other child, they want to move on to whatever level of independence they can achieve. Letting go is not giving up.
• Remember that you are entitled to have your own passions and hobbies. You need to exercise, eat right and get enough sleep so you can continue to be there for your child for the long haul. More so than parents of typical children and even those with developmental disabilities, parents of a child with ASD have an increased risk for acute and chronic stress, and the resultant physical and psychological conditions.
• Encourage your “typical” children to explore their feelings about having a sibling with a disability. If they are frustrated or embarrassed, allow them to express it. Giving them a voice opens the door for communication about the situation and helps them build empathy. It also helps prevent resentment from building.
• Similarly, treat all your kids the same. One time, our middle son kicked a ball in the kitchen and broke a plate. Two weeks later, Luke did the same thing and got celebrated by Dad. Thankfully Sam spoke up about it and we were able to rectify the situation and be fairer going forward.
• Hang out with people who love and support you, and are able to help you find humor in the toughest situations. There is no better litmus test for character and friendship than how an individual reacts to your child.
Every parent, whether of a child with autism or not, requires superhuman skills much of the time. Our kids just make it a bigger adventure.