a what-it's-like rant

My cousin recently asked her facebook friends who have special needs children to write her explaining what has helped/what has been difficult.  She is an author, and is writing an article on it.  This was my reply.


Ok so off the top of my head, here is what has encouraged me/annoyed the piss out of me - 

when Bailey was a baby, a friend of my MIL's sent a newspaper clipping to her about embyonic genetic selection...basically inferring that if we were to have another child, we could sort through the embyros before implantation to find out if the kid has CF, and only implant the "good" ones. I was HIGHLY offended, as what if we had done that with Bailey?! Her not be here?! Impossible. And what about those embyros?!  Not for me.

In addition, in having another child, I felt I almost had to explain that it was an unplanned pregnancy, as I felt crucified if I would have willingly had another, subjecting that baby to a possible disease knowingly. "Did you know about the CF before you had Bailey? Did you know you were carriers? Would you have had children?" Really offensive and over the line I think. I would guess many parents of special needs kids feel that their reproductive rights are no longer their own, with privacy as a luxury. It's like if you have a child with an inherited disease, suddenly it's more acceptable for your reproductive plans to pass the approval of others, like it's any of their business. 



For Taylor, she gets looks a lot. Looks of compassion sometimes - but even that can offend me depending on my mood. Like she's something to be sorry about. Looks that say "control your kid" makes me want to get in their face - and yet I'm so busy trying to regulate Taylor and desensitize her to whatever's putting her over the edge, that I couldn't address it. If I could, I'd say, "Are you perfect? Is everyone in your life perfect? Because I think we're all works in progress. What gives you the right to turn your nose down at my precious daughter, who's just trying to survive being in a loud store with a hundred different stimulations that are attacking her sensory system. You try being her for a minute - because she's my hero. She puts up with more on a given day than you would in a month. And still has joy, still has humor, has learned to show love and care to others. Or try being me, a mom who just loves her kid and is trying to do the best she can, to live through it and not just survive, but enjoy the ride. A mom who tries to be two steps of her kid at any given time, but still fails. Often. And when I give you a look like you just gave me, then you can tell me to fuck off. But until then, why don't you try kindness over judgement."

Well that's what has upset me.

As far as encouragement, any time someone praises my children, I glow inside. I soak it up. I am proud, if someone is proud of my child. Any help is appreciated. If we're at a restaurant and Tate is unraveling, an offer to take her for a walk or to the bathroom lets me take a breath. But it's complicated - if the offer is clothed in a "let me help you bc you obviously can't do it" look, I push away the help, I'll take care of her myself. But if it's given in a "let me spend time with the lovely Tatie Tot, come on sweetheart!!" kind of way, I SO appreciate and accept. Does that make sense?

I could talk about this for hours, but your eyes are probably crossed and I have to pee anyway. 

So that was my response.  Any of you with a child with special needs, thoughts?