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I know there are those in the autism community who think if I say “autism sucks” that it implies that somehow I think my son sucks too.
It simply isn’t true.
I love Will will every fiber of my being,
every ounce of my soul,
and anyone who says they don’t believe me is just plain old trying not to see it.
I am 100% certain that it is clear…
Will is my heart.
But,
that said,
it doesn’t mean that I love autism.
Sure, autism can be fascinating and Will views the world in the most amazing way,
a way I would never dream,
examining details that I swear I wouldn’t notice even if someone paid me to look.
But, every once in a while, I just wish he could simply talk to me.
Simply.
Not by pulling my arm.
Not by repeating words to his favorite songs.
Not by reciting entire episodes of The Backyardigans.
But just by simply saying,” I need this.”
It’s frustrating.
For Will.
For me.
For everyone in the house.
Will’s wants and desires are the same wants and desires of a typical almost 6-year-old but his ability to communicate those to us is not anywhere even close, but rather like an 18 month old toddler.
So Will cries.
A lot.
Not temper tantrums,
but crying out of frustration
and all I can do is join in and cry too.
And pray that some day soon we will get there and autism won’t suck so much.
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hugs
Thanks Tracey. It was a ROUGH day today for Will. SO bad that he’s asleep already (6PM) from crying so much. His poor eyes were swollen and his throat was sore
Breaks my heart so much.
I’m so sorry.
Sending hugs and love your way.
(((hugs))) That is a hard place to be. Have you thought about introducing sign language to help him out? Both my kids were signing by 8 months, and it *really* relieved the tantrums when X was 2-3 years old and had the vocab of a 15 month old. He could tell me what he wanted/needed, which eased things tremendously. It doesn’t eliminate everything, but I found it helped for us.
Sadly, we’ve been using sign with Will since he was 3 months old and he doesn’t use it.
Bummer. Have you tried PECS cards?
Yes. We use PECS. Sort of. He uses it at school and on his iPad but he doesn’t really get it yet.
Got it. ((hugs)) I so was hoping something would be of more help.
I’m on the prayers at least.
Ohhh… There’s an app for that!
http://itunes.apple.com/us/app/grace-picture-exchange-for/id360574688?mt=8 (this one is the one that insists the person take their wants/needs to a verbal person to help)
http://www.gadgetsdna.com/10-revolutionary-ipad-apps-to-help-autistic-children/
http://blog.friendshipcircle.org/2011/02/02/the-special-needs-ipad-app-series/
http://a4cwsn.com/
http://bridgingapps.org/
http://heartyspin.com/autism-apps/picture-aac-app/
Ugh, I can’t even imagine. You know, I can say I get frustrated just being a parent some days. But I would imagine there’s quite a bit hanging over your head if you say you get frustrated with autism itself since you’re a mom of a child with it. I’m sure some will see it as a reflection of how you feel towards Will. If they do, then clearly they don’t see your heart or read any of your posts! <3
Huge hug my friend
So sorry Debi,
It does suck when you want to help your child and you don’t know what they need.
Everyone who knows you also knows how much you love your kids and it is perfectly OK to say that autism sucks. It in no way means that you don’t love Will.
Prayers for you and for Will. How is school going for him?
Brian seems to like it at Pine Grove, we have his IEP meeting scheduled for Oct 24, I will know how things stand then.
Holly