“I don’t know how you do it?”
“I don’t think I could have handled something like that!”
These are the things said to me by people when they discover that I am a mother to a special needs person, and while I understand that they don’t mean any harm with these statements, I really just want to shake them until their brains fall out of their heads when they stand there ignorantly smiling at me and thinking that they are complimenting me, when really they are putting my son down.
“I don’t know how you do it?” Well first off, do I really have a choice? I mean, can I just wave some magical wand and suddenly have a son that’s able to communicate his innermost thoughts to me, able to walk or even run, experience friendship, be able to use a bathroom and not rely on me for putting every drop of liquid or spoonful of food into his stomach. No, it won’t ever happen and I’m fine with that. But when they say that they don’t know how I do it, they are saying that my son is a burden, they don’t see past his inability to care for himself. They don’t see his smiles, they don’t hear his infectious laughter. The don’t see how happy he is and how happy he makes me. Yes, it is a lot more work to raise my son than it would be another boy his age who didn’t have his issues, but there is more to him than just the extra work.
“I don’t think I could have handled something like that!” Because again, like you have a choice. You carry that child around inside you for 9 months, you feel him kick and spin and you dream about what his life will be like, you pick names and wonder if he’ll look more like you or your husband. Then he’s born, and sometimes you know right away something is different about that child, but in our case he came out and my life was wonderful.
I held him in my arms, I took him home and made all the kissy faces and cooing noises one makes when loving your newborn child. Then a month passes, and another and suddenly you’re realizing that this wonderful little baby that you love with all of your heart just doesn’t seem to be doing the same things his older brother and sister did when they were his age. And it’s not until he’s 13 months old that you’re told that you really shouldn’t expect him to be able to ever do any of those things that you just took for granted that he would one day accomplish.
So, at that point what do you do? You love this child, have loved this child for close to 2 years, inside and outside of the womb. So what do you do? You accept what you’ve been told and go on with your life, adjusting your dreams and goals so that they’re adapted for what he’ll realistically be able to do.
He’s not some monster that someone has to handle, he’s not something that you have to tolerate. He’s a little boy that you’ve held in your arms, and sung to sleep and loved more than you could ever imagine.
He’s not something to be ‘handled‘ and I resent you when you make it sound like he’s just horrible.
“You’re so good with him!” Because you think that I’m the kind of person who would reject or neglect my child because of a medical diagnosis? Did you always think that I was such a bitch?
I can’t make up a blue print for Talking to a Parent of Special Needs Children, because just as each child is unique and different, so to is each parent. I can say that instead of making it seem like we’re working our asses off to deal with these burdensome children, when you meet a woman on the street with a regular child you just tell her what a delight her child is. Why can’t you see the smiles and joy and comment on that.
Tell me how happy my son is, what a wonderful smile he has.
This past weekend a woman said to me ‘Wow, his teeth are good. Not messed up at all, at least he’s got that!” and I was stunned. “Do you brush his teeth?”
Of course not, I’m trying to get his teeth to rot out of his head so that way he’ll really be messed up when it comes to eating. C’mon, what kind of mother do you take me for?