Autism…You Fickle Motherfucker!

3/7/2013

Some days I want to be a part of the world that celebrates all things autism. The neurodiversity crowd, the group that tells me that Kate is a perfect version of Kate, can draw me in on a good day. A day when she is happy being flappy is a day I can get on board with autism and accept it as a part of Kate. When Kate was initially diagnosed I was drawn to these websites and blogs because I was searching for someone to tell me that it was ok; that she would be ok. They told me that autism made Kate 'different, not less", "a Mac in a world of PC's", and so on (there are a million of these feel good sayings.) Some days I hold onto these thoughts and then there are other days.

The other days are a little different. Instead of celebrating Kate's autism as a genuine and authentic part of my girl, I hate that fucker with everything I have. When she is mid meltdown, I dream of pulling it out of her and setting it on fire. Too harsh? Too bad. When Kate struggles to connect, communicate, navigate, or even just 'be' with us I am angry. Really angry. Angry in the way only a parent can be when someone is messing with their child. Do you know this anger? I am sorry if you do. Do you know that old Mel Gibson movie, "Ransom"? Do you remember the part in the trailer when the kidnapper calls him and he screams into the phone, "Give Me Back My Son!" Yeah that.

Today, I am sending a big fuck you to autism. Maybe tomorrow we'll have coffee, but I sincerely doubt it.

10 Comments

Amanda

3/7/2013 01:26:07 am

Hang in there - you are doing an amazing job.

Shanell

3/7/2013 08:52:05 am

Thanks Amanda. I am guessing this is either Kate's super cool 'Amanda therapist' orher super cool friend E's mom. Either way, thank you :)

Melissa

3/7/2013 01:41:55 am

I concur- Autism can go fuck itself. You guys ARE amazing; Kate and Grace are amazing. I can totally see you guys setting Autism a flame!!

3/7/2013 08:53:20 am

I would love to throw you in a ring with autism someday. When Kate gets her dog (I am praying she'll be accepted into the program) I assume you'll be here to help us figure it all out :)

Rich B

3/7/2013 03:51:05 am

We've all been there....Take a big deep breath, walk away, sleep on it...and other useless bits of advice. Sometimes it just beats us, other days we're managing it. You know all this...Just take each moment on the chin and do your very best.. writing all this after my lad had a great day at nursery and we are all relaxing and my wife & I having a glass of wine......in 2 hrs, 12 hrs, 24 hrs I might be writing about a day like you've had. That's how it is, we just have to keep learning, improvising, adapting,........

3/7/2013 08:54:43 am

Rich, things are already looking up. The wine is poured, the kids are in bed and I am feeling a little less angry. Thank you for putting it in perspective, because I needed that.

Sophie's trains link

3/7/2013 09:10:51 am

I can relate. Although Sophie is so thoroughly, completely autistic I don't often think about "pulling it out" of her. I'm not sure what would be left... I do think "if she wasn't autistic" , but then I guess she wouldn't be Sophie.
I guess what I'm saying in a rambling way is I get those feelings too, but usually I just get sad, not mad. Maybe I should try get angry instead!
I'm sorry you had a rough day.

3/7/2013 09:21:49 am

Sophie's mom, I get what you are saying. I think that sometimes too. If I remove the autism I wouldn't know her. She is what she is and she is amazing no matter what but I guess I fantasize about what she would be without autism. But then I feel guilty because I feel like I am wishing her to be different or "better" which is the cruel part of this whole thing. I want the autism gone, but I want my Kate, the Kate I love right now. What a mess of emotions this is.

Patricia

4/18/2013 11:28:03 am

I have just read all your "letters" and the last post ,which would normally make me laugh or at least smile,now has me wiping tears from my eyes. Next to my amazing daughter who deals with these things on a daily basis,I think you are great!
I agree it is, for us,about perspective.....and some days are indeed better than others.
The Nana

4/19/2013 09:38:34 am

Patricia,
Thank you. I know how my own mother feels about our Kate so I can understand what Paige means to you. Paige is a lucky girl. Thanks for understand that sometimes it isn't about persevering and fighting but sometimes it is about being angry. And that is ok.

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I talk about Autism, a lot

Autism…You Fickle Motherfucker!

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