After all this time, I've gotten it. Some of these folks meant well and actually thought they were being of some help. The rest I'm sad to say were heartless clods whose brains were on rewind while their mouths were on fast forward and could have cared less about the content of their material. But the one thing they all have in common is...they just don't get it! Even after you try your hardest to enlighten them. And they won't get it. Not until it comes knocking on their doors will they ever begin to get it!
If I had a dollar for every stupid, thoughtless, sometimes well-meaning word or phrase uttered in my direction I could single handedly lower the deficit and have some left over. Phrases such as....
"Is he like Rain Man?" (no, more like a light drizzle!)
"Ohhhhhh.....*tsk tsk* I'm so sorry!" (Sorry for what? Their lives have been fuller than most could ever imagine!)
"I thought there was something wrong with him!" (eye roll here)
"I feel so bad for _________________________!" (him, them, you..)
"They'll grow out of it, right?" (Oh yeah...sure they will...they'll grow out of their shoes faster!)
And then there are these gems.....
"If that were MY child...." (Thank God they're NOT!)
"He belongs in a cage!" (no words)
"One of my good friends has a sibling whose nephew/niece is autistic, I know just what you're talking about!" (insert face palm)
"You sure can't tell by looking at him/them!" (insert two face palms)
"What he needs is a good ass whooping!" (probably one of the surest ways for you to get yours kicked!)
""Boy, do you have YOUR hands full!" (You should see my heart!)
"I just don't know how you do it!" (Like I've done everything else...by the seat of my pants and on a wing and a prayer...as if I've had a choice?!?)
"Would you still have had them had you known they would be autistic?" (Um...yeah..would your parents still have had you had they known you would have been a thoughtless idiot?)
THIS question, posed by an elderly aunt who has since passed away, was the cherry on the cake of every stupid, thoughtless comment spoken to autism parents (special needs parents in general for that matter!) everywhere:
"What was your sin that caused your sons' autism?" (I have nothing to add to this one!
And the wheels on the bus go round and round!
Yeah, I probably can't go so far as to say I've heard them all but I've heard enough. I've heard and seen enough to know ignorance is curable; all ignorance means is a lack of information. Stupidity on the other hand is forever. My definition of stupid is when you no longer lack the information but still speak, act, and move as you were before receiving the information. It becomes a choice then.
My son Matthew spent this past week with the Special Olympics of Michigan, taking fourth place in the 75 meter snowshoe race and taking second in the 100 meter snowshoe race. He spent the past 2-3 months training, practicing running on snowshoes, learning how to take tumbles on snowshoes, doing it all with a smile on his face and a spring in his step. As a newcomer, he led the procession along with one of the coaches during the opening ceremonies. He was photographed with Wertz Warriors as well as with a reigning beauty pageant queen. My son Matthew...the boy who belonged in a cage...the boy who needed his ass whooped...the boy with something wrong with him...the boy who was this way because of whatever sin it was I did or thought about doing...my son...an Olympian!
Don't ever tell me what my son and other individuals like him are incapable of. Standing on the sidelines wrapped in layers of clothing and blankets to keep the cold out, I saw the human spirit at its best. I saw the strength of every one of these athletes, not just that of my son. I saw their heart, their joy, their perseverance, their determination, and probably the most beautiful of all to see and to hear was their laughter and their smiles. My son and his fellow athletes were there because someone believed in them and believed in them enough to push them past the comfort zones set for them. It could be heard in the cheers, the claps, the shouts of "Go! Go! Go!" from the families and coaches. In a world where these beautiful individuals are many times given up on, set aside, and given minimal expectations, Matthew and his fellow athletes were experiencing something so few in this world ever have the chance to; freedom. Freedom from limits, freedom from boundaries, just sweet, beautiful freedom. These participants were not merely people with disabilites; they were athletes breaking down barriers, tearing down walls, and just simply having fun.
Don't ever tell me what my son will never accomplish. The fourth place ribbon and silver medal hanging up on the wall at home speak to the contrary. Don't ever tell me what my son will never be because guess what, honey, you have no way of knowing. Guess what else? Neither do I! But I've seen where he's come from. From having little ability to feed, bathe, or dress himself to laying his clothes out, changing out the laundry, helping with the dishes, and making coffee. From flipping tables in his classroom during a meltdown to separating himself and chilling out with his dominoes. From biting and slapping himself, spitting on me and screaming in my face to randomly reaching over and taking my hand, leaning into me for a kiss, and actually letting me hold him. From pointing and grunting because he was not able to verbally express his needs or wants to actually saying "Pass the ___________, please," Shall I go on?
Don't ever tell me what you think you know about my son and others like him, especially when you know you have no experience with it. I am by no means an expert but when you spend the better part of 16 years eating, breathing, sleeping, spewing, and defecating all things autism, you learn more than what you had ever cared to and as a result, you have a tendency to chuckle at those who only think they do. Sorry, but your neighbor's friend who has a nephew who has a cousin with autism is not the same as personal, hands on experience. It's not a matter of being haughty or rude or believing you to be one up. When you're dealt this type of hand, that's just the way it is.
And please, for the love of all that is holy, do not EVER tell me how sorry you are or that you feel bad for him or for his brother. I wasted enough time in the early days of their diagnoses feeling bad enough for everyone. Did I mourn the loss of a seemingly normal life (for us as well as for them)? Yes, I did. Did I ask the age old question "Why me? Why us?" You bet your life I did. This business about how a child's diagnosis of any kind doesn't happen to the parents (as it was bluntly put to me) is, shall I say, a load of fertilizer. The entire family dynamic is turned upside down and suddenly parents morph into advocates, going toe to toe with school systems and the medical field to ensure their kids are getting what they need. Siblings more times than not don invisibility cloaks, taking a back seat to their brother or sister because of their needs. To say that the only one affected is the child with the disability is a lie straight from the pit of hell. Our family, our entire family was affected. It was a long, rough, lonely road for a good part of the journey. I look at my boys now and I see strength. I see joy. I see purity and innocence. I see determination and I see love. Don't feel sorry for them or for me. This is the hand I was dealt. It was not a hand I would choose. It is a hand I will play. Don't ever tell me you don't know how I do it. Who will if I don't? This is my family, my children. The only other choice is to lay down and die. Not on my watch.
Besides, the summer games are coming up in a couple of months, and Matthew will be a participant once again. More training, more practicing, more everything. No doubt he'll do it all with a smile on his face and a spring in his step. Dad and I will be right there on the sidelines with cameras at the ready. Hopefully we won't need layers of clothes and blankets this time around!
