How To Overcome The “Shame” Of Having A Child With A Disability
This is our story of how we overcame the stigma and shame that came with parenting a child with a disability.
We’ve all been there. You’re in public minding your business only to find people staring at you. You start wondering what the heck they’re staring at and start checking for possible reasons. Maybe there’s food on my face. Do I have toilet paper on my shoe or on the back of my pants? Is my zipper open? That can be a little unnerving and depending on the reason, very embarrassing.
I used to feel this way when out with my son in public. While I was never ashamed of his diagnosis I was ashamed of the behaviors it came with. My youngest was diagnosed with moderate to severe autism and has stims and behaviors that cause people to stare sometimes. I used to feel like burying my head in the ground because I was sometimes ashamed and embarrassed whenever he had a meltdown. I am a massive introvert who hates attention, so whenever there was “bad” attention I got flustered and was more focused on getting outta there than giving him the response he needed at the time. This didn’t happen all the time but when it did, I hated it. I remember being on the floor of a food court in the mall with him screaming his head off because he wanted to ride the elevator. We usually try to accommodate his requests but I was in a rush after his dental appointment that day and needed to head home. He wasn’t having it and while trying to get him to the car he flopped and we both hit the ground. I could see everyone looking at us and feel them judging me. When I finally got him to the car I bawled my eyes out. I felt so lonely, angry and ashamed.
I remember telling the story to a friend and how it made me feel and the question she asked changed me. She said “Why do you care what they think? I know you are a great mom. You’ll never see those people again. You’re doing your best”. We are often our own worst critics. We don’t give ourselves the credit or grace we give to others which diminishes the way we view our efforts. Those people I was so concerned about judging me didn’t know the lengths I had gone to to get my son the help he needs. They hadn’t seen me and my husband’s exhaustion when we had to deliver therapy ourselves after working our full-time jobs. They didn’t see the sleepless nights we had when he couldn’t sleep. They didn’t know that we were practically in debt because therapy was costing us an arm and a leg. Why did I care what they think? That’s when I decided the only way to let go of that shame was to embrace and accept my child for all that he is and ever will be. I had to let go of society’s perceptions of him and love him just as he was.
Your child’s diagnosis may never change. Do you want to spend your days wallowing in self-pity and shame like I was or will you live every day being the best mother or father your child can have? Embracing our life as it is was the best thing I did. I now sit with him and rub his back when he needs it. We drive to Ikea to let him ride the elevator or fill up the bathtub and let him “swim” and relax if we can’t go to the pool because he loves water. I give him the time he needs to find the words he’s searching for to make his request. We take the long way to the parking lot because he wants to take a different path and we sit on the floor and stim together if that’s what he needs to help him regulate. We take him on bus and train rides because that’s his idea of fun. As long as we’re able to do what he needs we’re doing it. People can stare all they want, but if you’re not offering help, then leave us alone.
Stop measuring your child based on society’s standards. Stop hiding their diagnosis from friends and family and keep them cooped up in the house, not letting them experience the joys of life in their own way. Stop fearing being judged and step out boldly. Doing this will also allow you to let go of other baggage that comes with shame like guilt, anger, and blame. You didn’t cause your child’s disability, beating yourself up about it won’t help either of you. You’ll find those thoughts creeping in, especially when you’re alone but you have to catch yourself and release them before they consume you. Just know that when you’ve tried your absolute best, you’ve done enough.
We are raising extraordinary children in an ordinary world!