April 1, 2013

Special Lies.

Posted in Uncategorized tagged , , , , , , at 1:23 pm by openendedcomment

You ask how old they are, because that is what people do.  I say 16, 13, 12 and 10.

“Oh cool!  You have a driver!”

And now I say that no, I don’t.  He has special needs and he doesn’t drive.  You are silent, or quickly tell me about someone else’s child who is now “fine.”  Which isn’t the same thing.  At all.

Or I lie and avoid it.

I have learned to lie.

You ask what’s “Wrong” with him

And I tell you he has Aspergers Syndrome (because it’s the one people have heard of) and you say “Oh! I know about that! So he has social issues but he’s really smart.”

I lie.

It’s not that simple.

He also has severe learning disabilities, ADHD, anxiety disorders, developmental delays and sometimes, he hears voices. But that’s too much and too personal for casual conversation so I say “sort of”

I lie.

When you meet my family and say “So, a big sister and three little brothers”  I quietly correct you that he is the eldest.  And you say “Oh, I just assumed…”

I say “it’s OK.  Honest mistake.”

I lie.

It isn’t OK, he’s going to cry himself asleep tonight or destroy something of hers.  Maybe both.  Because he doesn’t know how to take it and even though it isn’t her fault, he’s going to blame her for being “normal”

Or take it out on his brother, who has lost trophies and awards and friends.  Because he is afflicted by normalcy, too.

You try to do the “right” thing and tell me how lucky we are to have such a special and great kid and how our other children are being taught so much by him being a part of our family.

I lie.

When most of it is right and mostly I agree, that we are lucky, his parents,  I lie that they are lucky.  They aren’t.  They’re lucky to have him and they love him and wouldn’t ever want to be without him, but they aren’t lucky that we are always fighting the next battle which means spending more money and losing more time.  This means they aren’t getting to go skiing or be in hockey over the summer, or have friends over when he’s having a hard time, or go on the vacation we wish we could take or attend a camp, the money and the time goes to get and give him the help he needs.  Something that sounds and when written seems trivial but to kids this is a big deal. It isn’t even kind of fair to them.  It isn’t lucky for them when we’re so stressed we barely speak for days on end because we don’t know how to get to a place where there can be calm and peace in our home when chaos lives here each day with no warning as to when it will come roaring back…in some new awful way.  Lucky would be to have him and also have a break.  Or at least a warning when the “other guy” is on his way.  No such luck.

When you say that you don’t know how I “do it all”

And I tell you “It’s nothing”

I lie.

I don’t “do it all” I do what I can and what I can control, mainly because there is so damn much I have no control over.

When you say “Well, maybe you just need to….”

And I smile and agree or act like I’m paying attention

I lie.

You saw one weekend or one day or one hour of “good” and you have no idea what the other side is like.  He is Jekyll and Hyde and you’ve met but one.  So no, your advice doesn’t really mean anything to me.

When you say “but he seems normal enough, it can’t be that bad.”

I lie.

I spare us both, and I lie.

And yes, there are things that would and could be so very much worse and I remain blessed to have him and all of them each day…but there are times

Times when knowing I and we are blessed and that I should treasure each moment and endeavor to teach them all about unconditional love and acceptance, times when knowing it and feeling it don’t always agree…times when he and sometimes they ask me why this is the way it is and when he will be “better” and what more I can do to help him, when I don’t know that there is more to do that I am capable of…and still have the strength hold the rest together.

Months and days and hours of hurt and pain that a parent who can’t make it all go away feels and still has to explain…

When all I can do is lie.