We have a lot on our parenting plate. To the outside eye, the challenges are not immediately apparent. That’s because we’re dealing with invisible disabilities. When talking about my child’s behavior that is symptomatic of one of the diagnosed conditions, I have had well-intentioned folks tell me:
“Oh, he is just young! He’ll grow out of it!” Or
“ALL kids do that!” Or
“My kid does that, too, and he’s not on the spectrum!” (to that one, more than once, I’ve thought to myself, “You might want to check into that further, possibly?”)
Others minimizing my child’s disability–or ignoring it– is something I’ve experienced many times. I don’t believe any of these other parents meant any harm or ill-will towards me or my children. But after these encounters, I was certainly left with a sense of disconnection. There is a common lack of understanding on the part of a parent of children without disabilities. How do we overcome it?
Well, we certainly need support! Reaching out to other parents who are having similar challenges and experiences helps tremendously. It can validate that you’re not alone in this journey. You can learn so much from other parents of kids with disabilities.
As for those other parents who don’t get it, at least the fact that we had a conversation with them may have planted a seed. Next time they encounter a parent and child with a hidden disorder, perhaps it will give them pause because they have talked to another parent experiencing the same.
I refuse to hide. If one of my kids is having a rough day due to one of their conditions, I am forthright with other parents, out of earshot of my child. I tell them why noise is so hard for my child with autism. I tell them why we don’t watch certain movies or play certain video games. I explain why we don’t read certain books that seem perfectly okay for their kids.
And I don’t accept the chastising that some try to give me. “You’re not letting them grow up, mama!” they may say; or “He needs to toughen up!” Depending on my own mood that day, I can be funny. I may say, “Oh, I know! Going to put a brick on their heads so they will just stay little, and I can do 15 loads of laundry every day for the rest of my life!”
But sometimes, I am not. I say, “That may be how it seems to you, but the well-degreed doctor who diagnosed my child would disagree.” This stops most people right there.
Living with disabilities is a challenge for the child. And for the parent who has every investment in their well-being and happiness. When I recognize you, fellow mom, I will give you the smile and nod. You are not alone!
Learn more about connecting with other parents of children with disabilities.
From the moment Camila was born, I knew she would change my world. But it was not until third grade when she made the comment “I don’t want to live anymore” that I realized things were not right.