Wednesday, February 10, 2016

Special Needs Parenting: I'm not a better mom than you


I posted the above IG photo a couple weeks ago--and understandably, the photo got a lot of attention. Lamp had painted her toe nails all by herself. You can see the entire caption here. But there was a little more to the story and I wanted to touch on that today. 


In preparation for an upcoming trip I asked the girls if they wanted to paint their nails with me. Yes! Yes! Yes! So as we're getting all the nail stuff out Lamp tells me she wants to paint her own nails. "No." I say, "Let Mom help you."

"I can do it myself mom. Emily let me do it." (Emily being a babysitter she had last year.)

I get the nail stuff down and set it on the dingy, bathroom floor. It's an old bathroom and since we're getting ready to renovate it soon, it's the safest place in the house for a nail painting party with my kids. While I'm still getting stuff out, Lamp grabs a bottle by one foot, starts untwisting the cap...I help her untwist still assuming that I'm going to be the one to actually paint her nails. I turn away for a couple seconds and when I turn back around she already has her big toe nail painted.

It's on there a little thick, but other than that it looks great. Stunned I say, "Wait? Did you just do that? By yourself?"

"Yeah mom...I told you I could do it. Emily let me do it last year and then you told her not to let me do it anymore so she didn't."

Gulp. And oh *$&%.

While I knew they had done some nail painting in the past I didn't realize that 1) Emily had let Lamp try painting her own nails and that she had succeeded, and 2) I didn't realize that apparently, I shut that crap down.

This was one of those sucky mom moments, especially as a special needs mom, to realize I completely underestimated my kid and even worse held her back from something she had already proven she could do.  Palm slap on the forehead. Not only that, but in hindsight what was I so worried about? Probably that disgusting, 60-year old, baby blue bathroom tile. Good job mom.

Moms in general are supposed to have this I believe you can fly! I believe you can touch the sky mindset all the time. And often I think this message for special needs moms gets amped up a bit. Whenever you hear stories of people with disabilities there is storyline of how against all odds--their diagnosis, the doctors, their peers, their teachers--they accomplished this great feat and in the background there is the mom who "never gave up on them." Because as we all know "special kids go to special families."

Brief pause: The last thing I want to do is write another "to the parents of typical kids" post or "dear world, this is what you're doing wrong" post. I have written a few of those posts in my time and while it's important to share our experiences and certainly to advocate for things you believe in,  I think we need to be careful in this idea of telling everyone else how to think and act about every little issue. So if you get something out of this post, great... if not that's fine too. I wrote it mostly for me. Back to our story...

Not a huge fan of that line "special kids go to special families." But I can't say I'm offended either. I get why people say it. Honestly, I think some of it has to do with our hero/victim views of disability (which need to be corrected, but aren't any one person's fault) and of course people are trying to be nice and positive. One of the reasons that line bothers me so much is that it's simply not true, and no matter how well meaning an untrue statement is, overtime it's going to do more damage than good.  According to statistics, children with disabilities experience a much higher incidence of abuse than children who don't suffer from disables. And while I don't have any hard and fast data ready for this one, children with disables are abandoned all the time, and I would assume at a much higher rate than children without disabilities. Do you remember the popular "baby hatch" in China a few years ago where people could drop off unwanted children no questions asked? Well in the first 11 days an unprecedented 106 children were dropped off in the 'baby hatch.' ALL 106 children had disabilities or medical conditions. Of course there is more nuance to this story as well...poor families who can't afford health care, etc. But c'mon, you can't ignore that data either. So yes, not a fan of that saying because in part it turns a blind eye to the real issues children with disabilities face.

But even for us families who love and cherish our children who happen to have disabilities, I don't like or want the added pressure I sometimes feel to live up to this amazing mom label that occasionally gets placed on me. I am someone who tends toward self-deprecation anyway... I guess I'm much more comfortable with an "under-promise, over-deliver" mentality when it comes to people and their perception of me. That being said, I also don't believe in the idea of sharing the negative sides of ourselves as a means of "being real." The complexity of who I am is not any one thing--and certainly not found in the extreme of my best or worst parenting moments.

So why am I sharing all this today? What is the point? If I'm not trying to 'air dirty laundry' and I'm not trying to tell you how or what to think... I guess I just want to add that nuance to the world of special needs parenting, to strip away the extremes. Because when I'm put on a pedestal for doing nothing that special or out of the ordinary, my worry is that I can just as easily be villainized when I underestimate, get angry at my daughter or unfairly punish her--because again, I do that with all my kids from time to time.

I'm not a better mom than you, I'm not a worse mom than you. Like everyone else, I'm just trying to give myself permission to be...good, bad and inbetween.

I wonder if any of my fellow special needs moms feel this? Do you feel like people automatically place a super-mom badge on you whether it's deserved or not? Do you ever feel like people watch you with a more critical eye when it comes to parenting your special needs child--like if you were to loose your temper at your child with special needs vs the one with typical needs do you feel like people would look at you with more contempt and judgement? Did this resonate with anyone else? 

5 comments:

  1. As a parent of an emotionally challenged child, things were said like that. My son was adopted, so people said how lucky he was. I didn't feel that was fair to him. Probably more than anything, we lost a lot of friends.

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    1. Debby--Yeah I've heard parents of children who are adopted talk about not liking the use of that word "lucky" in reference to their adopted children. One mom said the very fact that he was 'adopted' meant that something had happened in his life to make him very unlucky...or something to that affect. Sometimes people don't get it.

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  2. I can have a loooong convo on this subject. seriousky, let's get tea and pizza and chat.

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    1. Dangit Ruth...I'd love that. We've got to figure out a meeting place one of these days and actually make this happen. And I bet you have a lot to say about ALL of this stuff.

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  3. You've articulated very well what I have thought about over and over again. Especially being LDS, there are a lot of romanticized ideas about special needs. I had to pray and read long and hard about that after my son was diagnosed with autism. I have challenges many other moms that I know do not; but at the same time, I'm doing my best and focusing on loving my kids just like very other mom I know. They're hard feelings to explain, but I think you've done a wonderful job!

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