My Journal - Week 83 (28Mar11)
To my dismay, we are currently having to deal with a somewhat well anticipated reaction, or stereotypical perception of our son being "Special" or having Down syndrome. It's not shocking to me at all that we have to face this, but what is shocking is with whom the stereotype/reaction is from. The people who I never thought to worry about educating were our family but having said that, it's usually one's own family who will cause the most amount of grief when it comes down to it. Family are the ones who generally don't hold anything back, some having less tact than the general public, and the fact that it's family mean that feelings come into play and somewhere, somehow, someone's may get hurt. We tend to expect a lot from our families but it stands to reason why. General acquaintances we can walk away from if we don't like their behaviours, and the general public we can ignore, but family - well not so much. Sometimes for the sake of family, we do the opposite of expecting comprehension or understanding. Sometimes, in order to keep the peace, we pass the buck (so to speak), holding our tongues so that we don't step on toes or hurt feelings by pipping up or correcting inappropriate/unacceptable behaviour that we know "if it were anyone else"..., we'd have at them. I decided (long ago), if I am to be true to me, (and more importantly) true to my son, I wont remain quiet with the people who should mean the most to us. It would be very hypocritical otherwise, and I am just not okay with that.
Now, the point could have ended there, but this person has since mentioned that same comment to us on two further occasions, making it three times in total. Keeping in mind, our son is now over a year and a half old. Each time I have continued to make the same reply as always, saying most importantly, 'one can say what they "think" they would do, but being in the position itself is completely different'. Sadly my story has now, two points. The person went so far as to explain to my husband and I, their personal reasoning and how they could validate knowing that they couldn't raise a child with a special need. This person had used their own personal situation (as an explanation to us) - about having a premature infant and fearing having that child with a serious developmental delay (instead all the while using the words 'mentally retarded') and telling the doctor that they needed to know if that child would or would not be delayed. Only to further explain that if that child was delayed or "retarded", they could not do it.
The position that I was in, hearing this story, had put me into conflict (and not just for the use of the "R" word). I know not every person feels they can handle raising a child with needs, in fact I would be foolish to assume or think people would "want or choose" to raise a child with special needs (generally). But, it has never been my intention to make a person feel that they should, or even judge a person who feels they can't. Educating people is something I do, but only where it's welcomed unless they are being knowingly offensive in which case I don't put up with it. More over and specifically it seemed that this person needed to validate their position (on raising a child with special needs) by saying, it's better to personally admit that one can't do something than to pretend or lie. But they are not in our position and I see no purpose of telling me, a person who doesn't even remotely feel the way that they do. Frankly (and without being oppositely and equally offensive) the way I see it, we had never asked this person if they would raise a child with a special need or ever wondered if they would, so for us as a family (myself, John and Hunter) hearing someone's position about it once - is (at most) interesting but several times after the fact... questionable! In other words, we were left to wonder, what exactly is the motive? After many hours of pondering, we came to realize that for this person, it was all about being uncomfortable and this was their way of justifying it.
Some have said, you don't need people like that in your life. More have said, Hunter doesn't need that. AND ultimately, they are right BUT the truth of the matter is, I need NOT to ignore or forget about people with this type of sentiment/stereotype. It's all the more reason why I struggle so hard to advocate. But there is a line and a limit. At this point, some may argue that Hunter is so young, he probably wont recall this specific situation - but my husband and I will. We have worked so hard to ensure that everything that we do for our son is all about equality, love and no limits. We push for inclusiveness, tolerances and understanding. If we ourselves see that Hunter is typical, and work so hard at it - it makes absolutely no sense for anyone to praise us for doing it, and then make a mockery of that praise by undermining everything it stands for. And, should it be that Hunter is less than typical, or has more delays as he matures - then I simply say to those who would rather not feel "burdened" by baring any of that weight; we don't feel that anyone need to pretend or go out of their way to be there. It would definitely bother us more, if we have to pretend that someone is comfortable, when clearly they are not.
But, in this story, we are obviously troubled and saddened that this is occurring. This person has been such a positive impact on and in our lives and realistically, we would definitely mourn the loss of togetherness at the expense of someone not willing to be, "educated" or "comfortable" about and with our son. But, our son needs us more than we need to put up with hypocrisy or excuses. So as always, we hope that people can change.