I think that it DOES suck sometimes. And it's okay to say so.

I had someone tell me on a Facebook forum that I'm not accepting of my child's disability because I really hate the Holland poem. 

When I said that having a child with a disability is not always just like going to some equally nice, if less exciting, place.  That sometimes it's more like going to a war zone.  I didn't want to be a bad person who said "Fuck YOU to hell and back.  Well, not back." because I knew the moderators have had enough on their hands.  But I really wanted to. 

I love my kid.  And I don't mind autism up to a point.  But when it hurts my kid.  When we are so isolated by his disability.  When there is no one to help us.  When I beat myself up over and over because I steal a little time for myself at the expense of my husband because no one else is there to do it.  Yeah, it does suck sometimes. 

And it's not my kid's fault.  I know he doesn't like being how he is at his worst.  It can't feel good by any stretch of the imagination when his control is lost.  It can't feel good when people choose for him when he can't make his thoughts known.  It can't feel good to be underestimated.

But I can resent the disability.  Whether you want to call it autism, or autism compounded by co-morbidities.  They suck as a unit, each making the other more complicated. 

I want him happy, able to get what he needs and wants.  I want him safe from his SIB and his impetuous non-fear of danger.  I want to know he has some control over his present and future, like others do.  Like his brothers with verbal autism do.  I want him to be able to say "no" to things and people that would hurt him.  Or that he just doesn't like.  I want him to use his real thoughts to choose for his present and his future. 

And I want the freedom to acknowledge that sometimes it does suck to live with complicated autism.  Both for the person with autism, and for the people around them.  Just like people are free to say "It sucks to be a teenager."  or "It sucks to have to work around my LD." or "It sucks that I feel like I have to cut myself."  It's hard to watch your child work so hard, feel so out of control, hurt himself.  It's hard to let go of dreams for your own life, even though you would (and do) do that as a parent.  Even though you would give your life for your child. 

There is still the little id in your head begging for play, and for intimacy with your partner.  Begging for a quiet place to regenerate. 

But there is the super-ego always telling you how much more you should be doing to help this so-needy child.   And what a total shit you are.

Comments

  1. I totally agree with you. I don't bother listening to the ones who feel that they should judge me. They don't know me, therefore it is a waste of time and energy getting hett up over their comments! :)

    ReplyDelete
  2. Yes! It's not always tulips and windmills.

    ReplyDelete

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