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Saturday, February 2, 2013

How autism has made me a worse mother

Somewhere in Internet Land, I read recently a post that talked about how having a child with autism had turned someone into a Supermother.  That set me off on a big thinking marathon.  My first reaction was born of growing up in a time and place where you just didn't say things like that.  Even if you had a thought somewhere in the back of your mind that you might be somehow slightly super, you pushed that away---that kind of self-promotion was just plain wrong!  Then I thought about myself, and thought even if I didn't have that aversion to self-promotion, I would in no way say that autism has made me a super-mother.  I took it a little further, and realized that autism has made me a worse mother than I otherwise would be.  I'm not saying that looking for backwards praise in any way.  I know some people might think just by getting through the days with a low functioning child with autism makes you a better parent.  But I would disagree, and here's some reasons why...

First of all, I'm tired all the time.  Being tired, without any other factors, makes me less effective as a parent, both to Janey and to my boys.  I don't think anyone operates better when they are tired.  I am too tired often to do the kind of things I want to do with my kids---to be creative in helping Janey learn, to work with the boys on projects or homework, to take them interesting places, to volunteer at their schools or to fix them wonderful lunches, or, on the worst days, even to just sit and listen to them.  When I have a moment, I want to sleep, or to do something mindless to relax.  

Then there is the time factor.  So much of the time I have is taken up with the types of parenting tasks that are necessary, but not fun or nurturing---changing pull-ups, cleaning up spills, washing wet clothes, just plain watching Janey to make sure she doesn't run off or put something she shouldn't in her mouth or otherwise hurt herself or others.  Every minute I spend doing that kind of thing takes away a minute I could be reading to her, or discussing ideas with the boys, or watching a movie with them, or just doing the kind of family activities we never do any more.

I'm also not a great mother in terms of even those menial tasks.  I'm not a good housekeeper, because when I have time to be, I'm exhausted, or I choose to steal those moments for something else.  I don't have the mental energy to think up great meals.  I don't always keep up with the laundry like I should.  More times than I would ever want, the boys are left rummaging in the dryer for socks or uniform shirts.  I am in no way a model housewife.

The big issue, though, is that I don't think autism plays to my strengths.  I always think of that inspirational fable about God handing out special needs kids, and picking a very special family to give kids with disabilities to.  If that story was true, I would think there was a mistake made.  I know I have a lot of parenting strengths.  When the boys were little, I don't think there were many kids that were read to more, or talked to more.  I have a huge store of patience for questions and long discussions.  If they ever wanted to talk to me about something that was bothering them, or excited them, I was there for that.  I delighted in their personalities.  I loved watching them grow up, and I still do.  But I wasn't a baby person.  Those early years were tough for me.  I was in a hurry for them to grow bigger, to engage with me mentally.  With Janey, the early years are hugely extended.  I am in some ways still raising a toddler.  I'm stuck being the mother of a child in an early stage.  I love Janey more than life itself.  I have accepted who she is, and I will be the best mother I can to her always.  But I can't lie to myself.  I wish, I wish so very much, we were reading through the Little House books together, or talking for hours about dolls she might want or the social interactions of second grade or even that we were fighting about what clothes she could wear.  I am good at those things.  I love those things.  

And so, autism has not made me a Supermother.  Autism isn't magical.  Life isn't like a kids' book, where if something tough happens, there is always a silver lining.  You don't get automatic compensatory powers in life.  Autism is just autism.  I will always do the best I can, but I won't pretend that it's easy, or that I'm better for it.


Sakurafleur said...

Suzanne - I feel exactly the same way. I am exhausted all the time. If I have any spare moments, I tend to just rest. My house is an absolute bomb site. I know that you automatically feel guilt as a parent for not doing as much as you can, but I feel really, really guilty all of the time for not being a supermum for Olivia. She needs so much and I feel like I don't deliver. I do what I can, but it's not enough. Same goes for the rest of the family - I am not the best wife I can be, or the best step mum. I'm not the best 'me' either. I'm just half-arsed me. I hate feeling like this.

Sorry for the rant, but you just put into words what I have felt for a long time.

mknecht24 said...

Supermom is a modern myth made up by some mom who thought she was extra special. :) I think we are at a disadvantage these days. TV tells us what moms "should" be. I always wondered why Claire Huxtable was never cleaning the toilet. I think we moms are doing the best we can in our own situations. Look at motherhood in the 1600s or those women would be hauled in by the authorities. So yes, my house is a mess, quality family time is nonexistent, and I am TIRED. Supermom can go jump in a lake (or I'll push her!) ;)

1 out of 64 said...
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1 out of 64 said...

I feel exactly the same way. In fact there isn't a more accurate way to describe the way I feel as exhausted all the time or my house as an absolute bombsite.

My whole life I looked forward to being a parent. When I got pregnant with our first my husband and I agreed that it would make the most sense for our family for him to be a full time stay at home parent & I would work. After my first (and second) were born I had terrible postpartum depression and FMS flare ups. For the whole time I've been a parent aside from my maternity leaves I've had to work 60-80+ hour work weeks to make ends meet. When I was on maternity leave I was so exhausted physically, mentally & emotionally that I could barely help with the kids. It's all I could do to lay in bed and nurse.

After my first was diagnosed it seemed that my whole world came down. I didn't know what I did wrong or how to deal with it. I never pegged myself for a "conventional" mother but I was amazed at the way I felt when I would see a mom with her little girls in ballet outfits coming out of a restaurant. The silliest things would send me into tears (and still do). Then the worst part about it is I would feel guilt for my emotions. So now I've got guilt on top of grief & in some sort of awful way, jealousy. I've felt tremendously overwhelmed with the fact that I'm doing a terrible job being a wife, a mother and employee. Now every day I worry that my second child has special needs too. I feel like I don't even know what "typical" is anymore since I don't have a typical child to compare him too. I get upset when people talk about their children talking back when 75% of the time, I don't know if Willow knows I'm in the room even if I'm 6 inches in front of her face talking to her. I feel tremendous guilt for being a working mom of a special needs kid, and I've had people be nasty about it.

After my daughter was diagnosed my sister told me that God gave her to me and my husband because he knew we would be good parents to her. I know that my sister was just well meaning however it made me so angry (not at her). I've not been a religious person for many years. Over the past 5 or more I've leaned heavier into atheism even though I still have sentimental ties to spiritualism etc. Even with my non-theistic beliefs I can say I truly thought that "everything happens for a reason" up until my daughter's diagnosis. That went down the toilet for me after she was diagnosed. I cannot, will not accept that some things happen for a good reason. And the question I ask some people who choose to impose their religious beliefs on me (please note, I have no problem with religious people, I just don't like people pushing them down my throat or making me feel bad for not being religious)is, "if there is a God, why are there so many children dying of starvation around the world?". No one has been able to comfortably answer this for me.

So now these days I'm like that sterotypical working dad who travels & puts clothes on the kids that don't match and has no idea what I'm doing. I worry all the time and I can barely move off the coach when I'm not working or changing or feeding someone. Basically, I'm a hot mess :)

It's amazing how I always looked forward to being a good mom and now I just feel like a total, utter failure. I love my kids & husband more than anything but I would love to get my hands on a copy of some instructions for how to do this.

I most definitely am ranting and my comments are so uselessly long, but I wanted you to know that I can relate. Thanks for letting me vent too :)

1 out of 64 said...

P.S. the weighted blanket sucks, we are sending it back :)

Suzanne said...

Wow. It is so---I can't say good, because I don't want it to sound like I'm glad other people feel like I do---it's so comforting to read what all of you said. It is AMAZING. It's amazing that you all get it, that you aren't saying the empty words I hear so often---that it is all happening for a reason, that guilt is a useless emotion, that you are sure in the long run it will make everyone involved a better stronger person---all those things that I have concluded just plain aren't true. Boy, do I know that feeling of upset (and sometimes more like fury) when people complain about their kids talking back, or about how tough it is to haul them to all their playdates or ballet lesson or on, and boy do I know the guilt feeling. And you are so right, Michelle---I think we are living in the opposite of the Golden Age for mothers, and especially autism mothers. We are supposed to be perfect, and I think also somehow magical, able to "cure" our kids with the power of our love. Hah. The weighed blanket is a great example---you bought it because like me, you'd do most anything for a chance at better sleep and a happier kid, but like so many bills of goods we are sold, it doesn't work. THANK YOU, GUYS (Gals!), for GETTING IT!