Lucky.

WHY does it seem  that almost all the disabled kids and adults that I run across in my daily life are dressed badly and carelessly?  They often have unbrushed hair and teeth and bowl haircuts.  They sometimes have bad teeth and body odors.  Their clothes are stained and ill-fitting.  They just look like no one cares about them.  This has always bothered me (and I’ve noticed it for a long time).   If someone is mentally handicapped or disabled, or old, they must rely on their family members for help in doing a lot of different things.  And this includes making sure that they leave the house clean and presentable, even if you have to pick out their clothes and bathe and dress them yourselves.  In this society, the mentally handicapped and people with disabilities and the elderly and the mentally ill are already at a tremendous disadvantage.  They are already behind the 8 ball, so to speak.  Dressing them like you rummaged through a dumpster behind the Good Will and just took whatever you could find, in whatever sizes you could find, seems abusive to me.  And this is prevalent.  You must have noticed it too, but I’ve never seen it discussed before.  Why does this happen?

Sawyer is always dressed nice.  He always has on clean clothes.  His teeth are brushed twice a day.  He always has a flattering hair cut and we make sure that his clothes are in style (and this includes his shoes).  His clothes are neither too big or too small for him.  He gets new clothes whenever the other kids do.  We put deodorant on him.  He showers daily.  In other words, Sawyer is loved, and you can tell this by the way that he is dressed.  Now, nothing he owns is super expensive, because he is so destructive.  In fact, he mostly wears white T-shirts because they are the cheapest and he rips his shirts daily, sometimes multiple times a day. And yet, he always looks nice.  I cannot tell you how many times people have commented on how nice he looks.  They always seem surprised and I know why.  It’s unusual.  And this is something I will never understand.

I don’t want to get all holier than thou, but this is a subject that really bugs me.  Even if all of these people love their kids and family members with all of their hearts, by dressing them like homeless people, it comes off as uncaring.  Today, I had an epiphany.  I have shared before that many MANY doctors think that we are pretty much saints.  Many of them will tell us this to our faces.  They tell us all the time that Sawyer is so LUCKY to have us as parents.  This has always made me super uncomfortable because we are anything but perfect parents and Sawyer has driven me to despairing tears, almost daily, for over a decade.  I KNOW I’m not a saint and I couldn’t ever really figure out why we kept hearing this.  I suspected that it was because Sawyer is extremely disabled and we refuse to institutionalize him.  But today, I realized that there is probably more to the story.  I think the reason doctors are so impressed with us just might be because of the way that Sawyer is dressed.  If he is acting “normal” (which is a crap shoot at best), you couldn’t tell that he’s disabled.  He doesn’t stand out in any way, and this is our entire focus.  To not draw unwanted attention by the way he looks (he draws enough by his behavior).

This is the reason for our imminent sainthood.  It has to be.  We are doing something right by Sawyer!  This feeling doesn’t happen often and I want to savor it.  For the most part, I think I’ve failed him miserably, so this realization has been a lovely gift.