I’m a “lucky” special needs mom. I know this because I get told all the time. I’m lucky my child isn't blind, or deaf, or mute. I’m lucky because he has no mobility impairment. I’m SOOOO lucky that his IQ is in the normal range. “At least he looks normal” someone said. (Yes I let them live – it was a phenomenal exercise of self-control let me tell you.) I’m lucky that when he rages or has an emotional melt down he doesn't hurt himself or others. (Now) I’m lucky he doesn't curse at me. (Yet) I can’t even remember all the ways I've been told how “Lucky” I am.
You can probably tell from my tone that I have an issue with this. First of all – how is watching a beloved child struggle and suffer through a world that is largely indifferent if not downright cruel to them, lucky? Second – my son’s seeming normality is two parts heroic effort on his part, one part endless work on mine, and three parts the invisible nature of FASD. It is in no part attributable to luck.
I think all – well ok let’s say most - mothers feel some level of disengagement from the rest of the world. I think that the bond of maternal affection is so strong that it puts their child forever between them and the world to some degree. Special needs mothers are another degree removed. Not only is their child a filter on the world – the specific disabilities they cope with are an additional filter layered over the lens. With a child who’s primary disability is brain damage – damage that leaves them with a normal IQ - the very “invisibility” of the disability creates even more separation. Dealing with the constant misunderstandings and judgments of people who believe your child CAN do things and just WON’T, when you know they want to they simply cannot, leaves you too exhausted (and frankly jaded) to even try to connect.
My son has a sweetness of spirit and a loving heart that never ceases to astonish me. I don’t know any adult who could endure the things he has been through and retain the basic goodness he radiates. When people tell me how lucky I am – I don’t even try to explain any of this. I AM a lucky mom but it has nothing at all to do with the things they attribute it to. I just look at my son and smile. In the end I guess it doesn't really matter that they will never understand WHY I am so lucky. I know.