Thursday, May 31, 2012

That's What I Wish.

Brian was lying on the couch watching Disney Jr. as I lay there rubbing his back and giving him deep compressions and ear pops.  Yes I was doing all of those things at once, takes years of practice of calming a boy after sensory overload.

We were in the middle of a cook-out at a house that we had never been to before.  The hostess was kind enough and knowledgeable enough (being an ed tech with children with special needs for years) to offer us free reign of her home, "whatever you need for him to be comfortable."

I wasn't happy with sitting in the middle of the livingroom as the party continued on outside.  I felt a tiny bit ridiculous as it was a new group of people that I was trying to make a connection with and instead I felt like we were ostracizing ourselves once again.  Autism is a funny thing in that it makes the whole family become secluded, not just the individual that needs the quiet and routine to feel at peace.

I honestly was feeling sorry for myself.  I felt like I shouldn't have come, I had made it known that this was going to be a difficult situation.  I was upset because on top of the sensory overload Brian was experiencing he also needed to have a bowel movement and that was making him more cranky. I couldn't leave him alone in the house, like I would've been able to do with most other 8-year-olds, because I was worried he was going to roam into the bathroom and have the said bowel movement and then clean himself on the walls, towels, and whatever else he could get his hands on. Because that's the reality of where he is still at with bowel movements.  Generally he won't have a bowel movement anywhere but home but I wasn't going to rely on that.

Then Corbin walked in and plopped himself in front of the television.

 I looked at him and said, "Corbin, please go outside and play.  We're at a cook-out, you do not need to sit in front of the television."

"But Brian is!!"

"Brian is having a hard time and he needs this to just chill for a little bit.  We'll be back out in a minute."

"It's not fair!  I wish I had autism!," he muttered under his breath as he stomped his feet back out towards the door.

It's not fair.  None of it is fair.  We've had this argument time and time and time again and my heart doesn't stop breaking for both of them, and for myself time and time again.  Again and again I feel like I'm failing my children because I can't always see autism as a blessing like I see other parents doing.  Again and again I find myself wishing it away.  And again and again I feel like I'm leaving Corbin behind to figure things out for himself as I struggle to make the world an easier place for Brian.

Does this get easier?  I just feel like I continue on through this cycle of acceptance and grieving over and over again, never really finding myself at the place that I am okay that this is my life.  Go ahead and criticize me because of some stupid idea you have that if I don't fully accept autism that means I don't love my child.  Any one who knows me and my boys would never question how much I love them.  My love for them does not stop me from just wanting and wishing that we could have a life where we could go to a cook-out and I could sit back, have a drink, make new friends and laugh, and watch my boys running and playing with the other children.  Just one afternoon with my whole family and not have to worry and be on my guard and have to watch my child every second of the get-together.  That's what I wish.




13 comments:

Lcarr2 said...

Once again, you are describing all the emotions I have felt before and probably will continue to feel. Thanks for being so honest and just know you're not alone. You are a great mom filled with love for your boys! Wishing you strength and courage during the hard times.

Lana Rush said...

Oh Heather, do I totally "get" this post. I long for the exact same things you do. And I wish autism away almost every single day, sometimes more than once.  You are not a lesser mom. You are honest. What mother doesn't wish she could change things for her kids, make things better in some way?

You know what I wish? I wish you could write this post without having to worry about being made to feel like there's something wrong with wishing autism away. 

Hang in there, girl and know that you will never hear criticism from me. xoxo

Cherisa Spatig said...

I have the same wish! And yes there has been Many MANY times my daughter has said " I wish I had Autism like Tanner". And I have been the one @ a party sitting there "calming" my son!! I so understand your thoughts for this post !!!!

Lizbethcole29 said...

All right lady, we've all been where you are and anyone who tells you different is a liar.  Oh honey, you don't love your child any less.  I know you don't.  What makes it hard is that you have other kids and family and life pulling you in all different directions and you have the one who needs you the most right then.  I know this.  And then the guilt sets in because you're "choosing" him over the other kids.  Am I close???  

Know you have friends out here who get it.  Get what you are going through, and like about as much as you do.  Hugs and love, thats all I have and I hope it helps... 

Jen Troester said...

I go back and forth, too, depending on how good or bad our days are. I am trying to look at the good days more, and concentrate on those, just for my own sanity, bc I have come close to the edge. I get "not fair's" from Ben, and he is only 5. I feel like crap, that I am  ruining him for life in some way. That as hard as I try, he will still end up hating or resenting me one day. We just have to keep on keeping on, I guess...

MarkS said...

Your point about isolation is really true. Thanks for sharing your story and feelings.

Heather said...

Thanks Lindsay!  I really appreciate your words, it's nice to not feel alone!

Heather said...

Thanks Lana, when I write like this, with no filters, I start to think I need to write an apology and then I argue with myself that I don't...so I totally wish what you wish for me as well.    

Thanks for your great words!  As always!!

Heather said...

Thanks for commenting!  It's always so nice to NOT feel so isolated!

Heather said...

You are so close!!  You hit the nail on the head.  I'm so glad to have this amazing support circle online!  Thank you so much for posting!

Heather said...

Aren't we all our own worst critics?  We're so damn hard on ourselves!! I think you are doing great Jen and honestly I usually think I am too...I just get these moments where I start to question things :/

Heather said...

Thank you for reading and commenting!

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Regards, Jennifer