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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.

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Tonight, my two youngest kids are off spending the night with their friends.  They were SUPER excited and it was so nice that they got to go off and have fun.  Then I got to thinking about it… Sawyer NEVER gets invited to go anywhere.  Not that he cares, not that he wants to go anywhere, not that he has any friends or cares either way, but I care and it made me sad.  Mostly I don’t dwell on his future or his limitations but sometimes it hits me hard and my avoidance of the subject becomes a full on pity party.

That’s where I am right now.  Want to come?  No?  Then stop reading right now.  Don’t say you weren’t warned.

Unless there is a miracle of some kind, we will never have an empty nest.  When we retire we will still be full-time caregivers.  When we die he will be alone.  These facts are bleak and they are why I mostly don’t choose to think about it.  I get through this day by day.  Thinking years in advance just serves to freak me out.

My son is in a small, sheltered class at his school.  It is the class for the VERY disabled kids.  Every year we buy him a yearbook which he never looks through or has anyone sign.  I have put them aside for him just in case someday he might want them.  Now, logically, I KNOW he will never want them.  It’s just not going to happen.  But every year I continue to buy him a yearbook just like the other kids just in case he someday does.  Why yes, I AM in denial.  Thanks for noticing.

Anyway,  this year when I looked through the yearbook his picture wasn’t with his class.  I couldn’t believe it.  He’s never been left out before and my mind immediately went to all sorts of crazy conspiracy theory places wondering if it was an actual oversight, or if  he’d been purposely left out for some reason.  Finally, I remembered to mention it to his teacher.  She told me that he wasn’t left out, but instead of putting him on the page with his acutal class, for some reason, his picture was put in his actual grade, along with all of the other middle schoolers.

This has never happened before.

I went home, opened the yearbook to his grade, looked him up and… started to cry.  He took a good school picture this year.  We had it retaken and his teacher made the photographer take his picture something like 72 times (literally) until she got one where he didn’t look stoned or retarded or crazy or manic.  The photographer actually had to delete all the pictures because he filled his camera and keep shooting until he got  a good one.  No one has ever taken the time to do this before and I was soooo appreciative!  For once, Sawyer looks handsome and neurotypical in his  school picture, and seeing his sweet little handsome face in the yearbook  surrounded by all of his peers who I don’t even KNOW even though he’s been going to this school since he was in preschool, was kind of overwhelming.  Yes, technically I know what grade he’s in.  But he’s never been mainstreamed.  His peers are complete strangers to me.  I’m sure those kids looked through their yearbook and went, “Who is THAT?”  Or worse, “Isn’t that that really weird kid from the disabled room?”

Sometimes really unexpected things can hit you hard.  When we first found out Sawyer was disabled, I was really resentful of other boys his age.  Not girls, just boys.  I kept thinking that their mom’s were pregnant at the same time I was and how come they got the “normal” kids?  I wanted one too!  As he grew older, that completely went away.  …Or so I thought.  But seeing him on that yearbook page surrounded by all the “normal” kids his age brought all those feelings to the forefront again.  These are feelings I thought I’d dealt with years ago.  Feelings I thought were done with.  Over.  And now I realize that they aren’t gone, not by a long shot.

Apparently, burying feelings and DEALING with them until you are over them are two very different things.  Looks like I’ll need to spend some more time doing the latter.

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