The other day a friend asked me what the hardest thing in my life is when it came to raising my daughter. Questions like these make me incredibly happy. My daughter, Lexi, is a bit on the unique side in that she has multiple diagnoses. She has both Down syndrome and West syndrome, paired with a severe cognitive impairment and autism.
Over the years, I’ve decided to make it my life’s mission to set straight as many misconceptions as possible about my daughter. Thoughtless statements made from those misconceptions are brought on by ignorance. Ignorance isn’t to be faulted, it’s to be corrected.
I want to go on the record briefly in saying that I do not, by any means, think that I’m speaking for all special needs parents. Not everyone wants to be an open book about the most difficult times in their life, nor should they feel obligated to. This is just me. This is how I cope. I can’t change the incredibly difficult things about raising a child with such severe special needs. I can, however, spread understanding.
So, what is one of the most difficult things about being the parent of a child like Lexi? As I’m sure you’ve already gathered, my answer was taking her to public places. Every parent out there with a special needs child understands this, though we all may have different reasons for why it is so. Reasons such as these:
- My child looks different than other children
- My child looks the same as other children, yet acts differently, and people don’t understand why
- I’m tired of the stares
- I’m tired of the criticism and advice from other parents who think they know better, but don’t
- I’m tired of being embarrassed by my child’s behavior
- I’m tired of feeling guilty for being embarrassed, because it’s not my child’s fault
- I’m tired of having to watch my child’s every move, every single second, of every single day
- I’m tired of being jealous of other families
- I’m tired of feeling guilty for being jealous
- I’m tired of how exhausting it is
- I’m tired of being exhausted
- I’m tired of… (Fill in the blank. This could go on forever)
Every single one of these reasons is legitimate. Every single one of these reasons is something that I’ve felt at some point in my daughter’s life. However, with the exception of the exhaustion, most of these reasons actually don’t concern me too much anymore. What random people think about me or my child doesn’t really matter. It hasn’t always been this way. It took me a long time to get over that particular neurosis. What others think used to be an enormous concern of mine. After my daughter came into my life, however, I finally got to the point where I realized that continuing to think this way with a child like Lexi would eventually give me an ulcer. That sounded particularly unpleasant, so I stopped. Not easily and not overnight, but eventually. Let me tell you, life is much easier now.
The motivation to write on this subject was the look of surprise on my friend’s face when I told them my actual reason for finding it difficult to take my daughter to public places. The reason is this: I may not care what people are thinking, but I do care about other people. I don’t care if they’re thinking something bad about me or my child. I don’t care if they’re criticizing us, outwardly or not. It is a fact, however, that my presence with Lexi in most public places will affect those around us in some way, and sometimes that way is negative. That, I do care about.
My daughter is extremely loud and extremely messy. She has no respect for personal space. She thinks that pulling the hair of a complete stranger is a great way to say hello. She feels that licking someone and then slapping them upside the face is an expression of love. She expects anyone she meets to sing “Wheels On the Bus” when asked, and gets extremely agitated when things don’t go her way. These are the legitimate reasons for my concern.
I am hyperaware of how Lexi’s presence may affect those around us. The other families around us in a restaurant didn’t bargain for the girl at the next table who won’t stop making loud noises or throwing tortilla chips on the floor. The woman in the chair next to us at the salon didn’t bargain for the little girl next to her, who is crying non-stop because she can’t stand to have her hair touched. The other families at the park didn’t bargain for a little girl who has no concept of how to connect with other kids, and ends up knocking smaller children to the ground in a simple attempt to play.
Here’s where correcting the ignorance comes in. Most special needs parents have heard some form of this question over the years: “Why would you bring your child to a place like this? Don’t you think about how it affects other people?” Well, here’s our answer: “Yes. We do think about it. Every. Single. Day.”
I never stop thinking. I never stop strategizing. I never stop worrying. Every time we go out to eat; get a haircut; or play at a park, an overload of concerns for those around us flood my brain. Every special needs parent out there has experienced this to some degree. It permeates every single thing in our lives that involve public interaction. The problem is that it can’t be our only concern.
Our special kids NEED to learn how to act in social situations. How else are they going to learn, if not by doing? There is only so much good that therapy and schooling can do if children like ours are never allowed to try out their newly learned behaviors in the necessary environment. So, we take them in public, holding our breath and trying our damnedest to simply focus on our kiddos and not start in on our own particular cycle of worry. I’m here to tell you, it’s dilly of a pickle!
If everyone out there had even an inkling of the sheer volume of worries that run daily treks through the brains of special needs parents, I’m sure there would be much fewer statements like the aforementioned. The life of a family with a special needs child is a deep sea of worries and cares, some of which even they can only begin to fathom.
The honest truth is that there really isn’t a simple solution to this problem. Every child is different. Every parent is different. Our hopes, desires, abilities and difficulties are different. I’d never presume to tell every parent of a special needs child to just get over their fears and face public scrutiny, whether you’re ready for it or not. What I will say is this: Whatever you do, do it with confidence. Your child deserves every experience, public or not, that they desire. If someone questions your child’s rights, inform them. Stand up for those rights. Cure the ignorance.
Finally, and most importantly, know that you’re not alone. There are literally thousands of families around the world who understand exactly what you’re going through. Be strong. Be courageous. And if all else fails, just be like my Lexi and just lick the mean people on the face. Stops them every time.
Emily Davidson is married and the mother of three children, residing in Kalamazoo, MI. She is a classically trained pianist by trade. Her oldest child, Alexis, has multiple diagnoses which include Down syndrome, West syndrome, and autism.
This article was featured in Issue 44 – Strategies for Daily Life with Autism