Maybe I’m naive, but I believe that most people are generally well-meaning. I also think that we too quickly claim others are ignorant, but meaning that they’re at fault, because they don’t understand our path. We cannot all experience each other’s challenges on a daily basis, and in some way this safeguards us from being overwhelmed with all the pain in the world.
I remember once when a mom of a child who had spent a year fighting cancer told me a few of the details of what they had been through. I felt embarrassed by how little I knew about something that had turned her entire family upside down. I apologized for my ignorance and she quickly answered “I don’t think it would be healthy for us to know so much about all of the tragedy in the world. It is draining to carry those burdens.” Of course she had friends and family to support and walk with them through the darkest hours, but I understood what she meant. People are suffering all over the world, and I don’t suggest that we turn a blind eye, but we also can’t be at every bedside. Not when we have our own children to raise, families to care for, and yes…life to live.
I have a son with autism. He turned three last December and although he was an early talker, he now has very little language. He cannot use the few words he has to communicate his needs/wants or answer any questions. Most times I can pick up on his non-verbal communication. I think that despite our challenges he is a well-adjusted happy boy and our lives are very similar to anyone raising three and five-year-old boys. Sometimes all of the symptoms converge, and my life feels anything but ordinary. It is on those days that I feel very sensitive, and it’s easy for me to lash out at the world for being “ignorant” and not knowing all of the details of my life.
When someone asks my son how old he is at the playground, and he stares blankly as I answer them…only to have them say to him, “What’s the matter? Cat got your tongue?” I feel downright angry. When people ask, “What, is he shy or something?” I sometimes answer…”or something.” When the woman at the grocery store comments, “Wow! He’s tall for his age.” when she doesn’t know how old he is, I feel like pulling out the statistics on just how many children his age are actually non-verbal, and thank her for pouring lemon juice in the gaping hole in my heart you evil, malicious BITCH!
The bottom line is that it’s not the “How’s the weather?” comments that pop up at random social meetings that hurt me. It’s my son’s struggles, and how it affects his and our lives. It’s not you, it’s me!
The dictionary definition of ignorant is “lacking knowledge or information as to a particular subject or fact.” Somehow we’ve become extremely intolerant of people not knowing everything about everything.
I have had people be rude due to their ignorance a few times, but it is rare. Mostly people are curious, and isn’t that the most natural of human conditions. Sometimes I feel that this area of my life is like a giant bruise on my arm and when someone bumps into me there I scream “OUCH! DIDN’T YOU SEE ME STANDING HERE? WHAT THE HELL IS WRONG WITH YOU!?!?!” As they try to politely apologize. It hurts. It’s not you, it’s me.
When someone doesn’t understand the nature of the disorder, they tend to try to encourage me with comments like:
“Einstein didn’t talk until he was four.”
“Oh, he’ll come around.”
“Some kids take longer to talk than others. Don’t push him, he’ll get there.”
“If he could do it once, he can do it again.”
“Of course he won’t ask for it if you’re just gonna give it to him anyways.”
“He chose this struggle because it’s part of his destiny.”
“He’ll talk when he has something to say.”
That last one burns me up the most, but in the end, I’m not mad at you, or the fact that you haven’t taken a course in “how to talk to a Mom who grieves her son’s lost verbal abilities“. I’m mad my son struggles to talk, and unless your response to that is “I’m sorry, that sucks!” I’m probably gonna be annoyed, but again, it’s not you, it’s me. Even if you do say “I’m sorry, that sucks” I might still get pissed, and reply “Well I’m sorry your kid has an ugly face, that sucks too!.” Ok, maybe I won’t say it…I’ll just think it.
Most days we blend in, and I have a good attitude. Most days I’m so proud of my son’s accomplishments and all the goodness in the world that I have found through his challenges. Most days, I’m rejoicing over a word said, not discouraged over what’s unsaid. Some days I cry. Some days I don’t think it’s fair. Some days I’m so mad that my face hurts from trying not to burst into the Hulk over some mindless statement that threatens my sanity. It’s not you, it’s me.
I spend a lot of my life pretending it’s not harder to have a special needs child, or trying to believe that God has equipped me with some unnatural ability to handle it emotionally and physically. Maybe it isn’t harder, maybe I am equipped with more patience, less need for sleep, more endurance, less need to get away, more grace, less intolerance. I don’t really know what everyone else is going through. In fact I’m so consumed with being educated about the circumstances that affect my family that I find I’m quite ignorant of what else is going on in the world.
In the end, it’s not pity or understanding that I want. It’s not the perfectly phrased comment at the playground. I want my son to be well. I want to handle his challenges flawlessly and without frustration. I want it to be easier. I want to be a better mother. I want to slide down rainbows and play in open fields of daffodils.
The bottom line is, you don’t have to learn how to talk to me. Sometimes I’m grateful for the ignorant statement that let’s me come home and blow my lid, because finally I have an acceptable reason to feel hurt. So if it’s the lady at the bouncy house who gets to be the “bad guy” for yelling “YOU NEED TO BE A BETTER LISTENER” to my son who can’t understand her, and I get to completely lose it, then so be it. Really, it’s not you, it’s me!