Raising Pinocchio

Tales on raising a child with autism and the kismet of living in semi-rural suburbia.

Monday, March 07, 2011

Evil Thoughts ...

Well, here's something I wouldn't normally share with other people ... I am so bitter about the fact that I have so much on my plate and other people seem to have just about nothing.  IT'S NOT FAIR!!! I want to shout from the rooftop.  Why do I have to have a child with special needs??  Why do I have to have the one with severe disabilities ... the one who can barely speak at the age of 8 ... the one who screams and shrieks and makes weird grunting noises ... the one who has no interest in anything that would be even remotely social other than kissing girls in his classroom.

People often tell me how strong I am ... friends and family who see the me who is struggling not to complain every living minute of the day.  And yet those same friends and family members rarely ask how my son is doing ... and when they do, they don't really want to hear the truth.  Or they are saddened or ashamed or scared to ask further.  It's a relief when someone honestly says, "Wow.  That sucks."  Because it does -- autism sucks.

I'm tired of fighting for every support and service my son needs.  I'm tired of seeing him do so well one day and so poorly the next 30 days.  I'm tired of forcibly squelching any and every hope I have that, just maybe, we can beat this thing and carry on the semblance of a normal life.  I'm tired of hearing him run around the house at 3am because he cannot sleep.  I'm tired of seeing him jump up and down in front of the TV, watching a preschooler's program, flapping his hands.  I'm tired of having to cut his food for him every day.  I'm tired of having to wipe his butt and tie his shoes and wash his hair and cook his special diet and interpret his words for every other person who meets him.  I'm tired of being so tired and feeling so defeated.

I don't ask for anything for myself ... I just want to be able to plan an outing for our entire family and feel confident that it won't end abruptly in screams, cries, and anguish for all.  I'd love to book a trip to DisneyWorld or to the Poconos or to, hell, even the local Friendly's Restaurant and know we'll all enjoy ourselves.  I want to be able to get a family dog and not worry that my 8 yr old will hurt it or kill it accidentally.  I want to pray and know my prayers are heard.

So - there it is: my self-pitying rant for the day. 


Blogger Kim said...

I know I'm like a month late in replying to this, but while I know you know you're not alone, but sometime a word from a single individual that says YES, I am right there with you, in each and every way. The only way I get through sometimes is to throw myself a pity party. Sometimes that party involves tequila shooters. If I tell another mother of an autistic child, they look at me like I'm speaking a dialect of English they're not familiar with.
You rant away. I do it a lot, I just hadn't thought to write it down.

1:33 AM  

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