A Slow Fade

I want to talk about disappearing.

Yes, there is the obvious disappearance of posts from my blog — but I’m talking about the slow fade of my joie de vivre. Over the last two years, since the boys were diagnosed, I’ve been beating a slow retreat from me: from who I used to be, or thought I was, and from the things that made me happy: reading a book, having lunch with a friend. Writing. I’ve put myself at the bottom of my list. Internet, I’ve let myself go. Yes, I’ve put on the obvious physical weight that no longer comes off as easily as it once did, but I’m also carrying around the weight of you, Autism. It is convenient, I know, to pin this crappy feeling on our daily struggles with you, and perhaps it is a little unfair. But Autism? You’ve been kicking my butt lately and I feel like kicking you back.

If I were not trying desperately to figure out why John is yelling “Ready, Set, Run?!” over and over as I also try to clean the poo-strewn walls with Clorox wipes…again…I would really sit down for a moment and try to recapture a time when I felt hopeful. And happy. I know all of this may sound maudlin and a little over-the-top. I mean, there are numerous happy moments too. Really, there are. It’s just that where I’m sitting right now is shrouded in fog so that it’s hard to make them out.

The sleepless nights continue. Winter break was too long, too unstructured. John must must must be potty-trained soon. This is a stage I am quickly tiring of and it scares me. What if he is never potty trained, god help us. Could we still be changing diapers when he’s five?

Even as I sit here, all pissed at you and rightly so!, I feel guilty. Guilty! How can I blame my unhappiness all on you, Autism? I guess I should take some responsibility for letting you take center stage. I’ve done that I suppose. You did not make me eat that bowl of ice cream tonight. You did not cancel my lunch today.

A couple of things have happened recently: first, I found Facebook, or Facebook found me. I don’t know, but the assault of people I have not seen or heard from for 25+ years is really making me feel old and a little dizzy. Second, while out shopping with my younger sister a saleswoman asked if I was The Mother. Can you imagine? Well, the fact is that I am 18 years older, and I am a mother — not hers — but still.

So I feel like picking a fight with you, Autism. I know you are not really my nemesis, but you’re not my friend either. And you’ve done plenty lately to make me a bit irate. I promise, though, to start ignoring you when you jump on the furniture and draw poopy pictures on the walls. I vow to make you do the slow fade. Instead I will draw John near and wait breathlessly until he says his new favorite word: Hug.

And I will move myself up a little higher on my list. A new year, an old resolution.

13 Comments

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  • Hi Kal, I have felt just like this many times. We can not let Autism kick our ass anymore though. It’s hard, I know, but we must focus on the positive.

    I am going to send you an email because I am also on Facebook and would love you to be my “friend”.

  • My least favorite part so far of being a parent of a kid with autism is how long it took for him to get potty trained. I completely and absolutely remember wondering if our son was ever going to be potty trained. It seemed hopeless when he was about 4 1/2. Now that he is nearly 6 I can’t imagine him having an accident. I just reread back through my archive to see if he was really that old when he learned because it seems like he has had it under control for so long.

    And then it took another forever to get night time trained. But once it happened, it was over.

    It will happen for you guys, too.

  • I am new to all of this… autism & blogging, but I wanted to introduce myself. I also have twins who are both autistic & I feel some days autism is winning. Thank goodness I know it will not throw the last punch.

  • You’re not alone. I imagine this was a tough post to write, but life with kids, life with twins, life with autism is hard. Take any one of those things and trying to keep your own self whole is hard. Put them together and it’s even harder.

    You’ll get on top again, and it’ll get easier. And then it will get harder. But then it will get easier. And eventually you’ll come out on top. Hang in there.

  • You are way ahead of us (although it might be a dead heat in the poop on the walls area…I have recently cleaned poop off of earlobes, which was pretty weird)
    I think you are so smart to move yourself up on the list.
    Isn’t there a gypsy expression, “Some days you eat the bear, some days the bear eats you”? That sums it up for me right now.

    I’ll be thinking of you.

  • Love this. Love it.
    I, too, have a tendency to blame it all on the autism. It’s my go-to excuse for bad behavior (my own).

    I feel a particular connection to you, though, over the poopy pictures on the wall… and my kid IS almost 5! But! She is toilet-trained. There is hope! =)

  • Oh dearie me, the weariness. I know it all too well. The exhaustion, the sleepless nights of babyhood that last for 8 plus years and counting, the fatigue that makes your bones ache and your brain numb. The stamina to keep going even though it seems like Mount Everest. The inability to focus, the doubt about your ability to drive safely, the ‘stay at home’ because I might inadventantly kill someone as I slump on the steering wheel, the laundry, the filth, the cleaning……it does get better……..believe me.
    Very best wishes

  • i KNOW this feeling! and i know it passes and yours too, will pass. i don’t mean this in a pat smiley face way. i mean it DEEPLY! listen, fluffy was in diapers until well into close to his 5th birthday but now he is out of them! and he’s almost 8 and going to the bathroom quite independently! it WILL happen. and your joie de vivre? it’s there, in wait, i promise you.

  • I am very late in reading this post, but I wanted to post anyway just to say how beautiful your words are and how right all the other commenters are – it will get better. You will find yourself again and you will be stronger and wiser than you ever knew.

  • I realized I hadn’t commented on this post, so I’m just coming back to say that I hope you’ve succeeded in putting yourself higher on your list, at least some of the time. I know what you mean about sometimes wanting to blame everything on autism, and I hate it when I feel like autism is kicking my ass.

    But when Secondo comes to me and says “hug,” it does make things a little better.

  • Your post made me cry… both for you and myself as I am just beginning the autism journey with one of my 4 year old twin boys and it is something that distracts me with such deep fear and depression that I can’t even see straight, much less see a life past this stage. I am not alone… thank you for putting into words so rightly what the heart of a mother of autistic children feels like…

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