My Journal - Week 83 (28Mar11)

So, He's NOT "Special"???

The reality of other peoples non-acceptance regarding our son....

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.

The situation:  

A long while back a family member told us, (regarding having a child with Down syndrome) "I could never do what you do.  I give you credit because if it were me, well I couldn't do it."  Initially, I said nothing about the comment but chose to use that person's comment to help others to understand that I was not superhero because often times "choice" can be irrelevant for most people who have a child with Down syndrome - AND in our case despite there being a "choice" for us.  We wanted our son.  It made me realize that while the person who made the comment had no ill intentions, the fact remained - it could be taken offensively by some.  Since I knew that the comment was not meant to be mean or harmful to us directly, the only comment I had in response to this person was - the exact same as what I chose to put in my blog and advise others:  Anyone can say they couldn't do what we did/do, but the truth of the matter is if you are/were ever faced with the exact same situation, what you feel that your choice might be now, may not be the same if it ever occurred.  I myself am living proof of 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.

The story continues....

For over a year and a half of Hunter's existence, we have had the pleasure to visit and keep company of this same person - who (for clarification) is someone we actually enjoy being with and sharing a many debate and philosophies.  And until recently, we had never questioned this persons reluctance to hold, interact or even speak to our son.  Initially it seemed that maybe (and despite having adult children (who are currently our age) of their own) this person was just not a "baby" person.  We were sadly shocked to discover, this wasn't the case.  We experienced first hand, this very same person - carrying, laughing, cuddling, holding, and playing with a baby who is actually 3 months younger than Hunter in such a wonderful "grand-parently" manner, that it may have caused us to stare in disbelief.  Now, some might think, maybe it's because Hunter isn't this person's grandchild - and they would be right.  Some might further think, perhaps there wasn't the same opportunity for Hunter to have been treated the same way, but that would be incorrect.  My husband (and I give him great credit for this) tried very diligently to get this person to be involved and at least interact with Hunter, short of putting Hunter in this person's lap and walking away.  Some might think we were just being over sensitive about the whole thing, but we have had a long chance to ponder it since it occurred.  In that moment, where my husband was trying to get his son some attention from this person, and in that next moment where Hunter sat on the floor looking up at this person holding another baby, playing, laughing and having a great time - broke our hearts.  It's very hard not to be "sensitive" about it, but we still said nothing at that moment, unsure of exactly what was taking place.

And then there's more....

While the "ignorance" (- and ironically what else could be better used to describe "ignoring" a baby) occurred before the 'third time explanation' of, "I couldn't do what you do, caring for a child with special needs"... which is the reason why nothing was said at the moment of our child being "ignored", and also why I feel that the explanation was given to us, perhaps as an explanation for what took place.... My husband went on to amaze me further - My husband, (who for all accounts and purposes was probably more confused at this persons behaviour than I was simply because I do more supporting and advocating on a regular basis) said very matter-of-factually, "There is nothing 'special' that I do for Hunter that I haven't done for my other three children!"  He went on further to say, "I don't do anything special or different with Hunter than my other three, I treat him exactly the same way as all of my other children".  At this point, one would think - any person hearing this might pause and really think, but the answer my husband received was, "I still couldn't do 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.