xmlns:og='http://ogp.me/ns#' Yeah. Good Times.: The Dive Bar Welcomes: Kare Bear

Saturday, September 1, 2012

The Dive Bar Welcomes: Kare Bear

This post is a little different from the usual Dive Bar post. Usually you guys write your rants and then send it to me for posting, but in this case, this was a post I read in r/autism on reddit. I wrote to the mom who wrote this and asked her if I could post this here because I wanted her to know that she is not alone. I told her that I wanted to help her find some support and if I posted this on my blog, she would get tons of people telling her exactly that. She gave me permission to post this and if you find her on reddit, she didn't use her real name, so she's anonymous there and here.

Please leave her a comment, even if you have nothing really to say, just so that she knows she's not alone. Thanks!

As I write this, I haven't showered, and I've spent the last 2 1/2 hours now in varying stages of trying to get my son to take a nap.

He doesn't nap every day now, which is fine; however, he's still wildly unpredictable in terms of whether or not his "signs of readiness" for a nap will result in 3 hours of fighting a nap to no avail, conking out almost immediately, or something in between where he puts up a good fight for a few hours and then passes out.

Of course, when he does nap, it's glorious and I get the precious hour or so to myself that every fiber of my being seems to be screaming out for, and I do my damndest to enjoy it.

Bedtimes and naptimes are, obviously, completely correlated, and it's always a tradeoff. If we do get him to nap, I can recharge in the afternoon, but he'll stay up so late that any hope of doing anything productive or of quality in the evening is pretty much gone.

But, the unpredictability of it all, combined with the stress and monotony of the rest of the daily details has pushed me--a self-described calm, composed, and difficult to rattle person--to the point where I don't think I even recognize myself anymore.

When my son started showing signs of autism a bit after age 2, it was terrifying. When his pediatrician casually told us "yep, he's probably on the autism spectrum" a few months later, my heart shattered into a thousand little pieces. I still have not recovered in the year since his declaration, despite doing all the "right things", like getting involved in Early Intervention services, getting a formal diagnosis, starting various therapies, etc..

And even though right now, I'm making the best of being an unemployed post-graduate (i.e. a Stay-At-Home-Mom, but not really by choice), I struggle with how very little of my own life is not dictated by the whims and needs of this mysterious, challenging, and yet desperately loveable little boy.

I find myself still bitterly clinging to the me that got left behind without me even knowing it. The me that could (and did) relax easily; the me that felt in control of her life; the me that believed she could be a good parent.

I don't think I'm a bad mom to my son; I'm overall proud of the attention and energy I give him. But it comes at a price, and I resent it.

It wouldn't be so damned hard if even the smallest little pleasures in life weren't also robbed from me.

I can tolerate not going to fancy restaurants, or going 10-12 hours without a "break. I can tolerate my nice things getting ruined, getting pinched and bruised and screamed at. I can tolerate a lot of the things that come with this.

But I miss being able to read the paper for 20 minutes while relaxing at a coffee shop. When I try to emulate something similar, it almost always ends with a screaming preschooler and me processing a whole host of emotions of self-loathing ("why did I even think this might be a good idea?"), embarrassment ("those other patrons probably think I'm a horrible mother"), pity for my son ("he doesn't understand what's going on...it's not his fault he's having a hard time"), regret ("I never should have come here"), resentment ("if my kid was normal things wouldn't be so damn hard"), and fear ("will I EVER get to go back to anything resembling the way things were?").

I mourn for the person I am no longer. I miss the me that never yelled, never raised her voice, never lost her temper, let alone basic composure. I miss the me that felt confident in my ability to handle lifes challenges; to figure out the solutions, and keep plodding along in a forward trajectory.

I know I can't expect my friends or family to understand how I feel...I know my husband doesn't even really get it. Not that he doesn't feel stressed in his own right, but I do get envious in a total non-rational way about how he gets to leave the house every day and escape the restrictions of caring for our son.

I feel very mixed feelings about the fact that I'm looking forward to working full time so I can justify paying half my salary to hire someone else to watch my son. Right or wrong, I think working would be easier than this.

I'm not looking for anything other than to put out my own thoughts in a space I can hope is without judgment. I spent the vast majority of my time censoring my inner monologue to my loved ones because I don't want to be ungrateful of the overall blessing that is my son. I do love him. And I do love EVERY part of him. And my life could be so much worse; I could be in a bad marriage (my husband is amazing) or in a bad spot financially (we make ends meet, which is good enough for me!), or in bad health, etc.

But still...

this is just so damn hard.