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Tuesday, January 21, 2014

Love for NT Parents


One of each...
This post isn't probably going to be spectacularly popular in the autism parenting community.  I want to give a little love to the parents of neurotypical kids, pejoratively..."normies".  And to do that, I want to first talk about being a parent of my own NT daughter for a minute.  Specifically, I want to talk about Emma, my 11 year-old NT daughter, and Lily's big sister.

Sometimes Emma struggles.  When she doesn't make the talent show.  When a friend says something cruel.  When she worries about a test.  When she can't land a side aerial.  When she wishes she was in the honors program.  When she wishes she wasn't one of the smallest kids in class.  When she wishes she didn't have such a hard time trying new foods.  When she can't decide between softball (because she thinks it will break her father's heart if she quits) or dance (because that's what she really prefers).

What I want autism parents to understand is...it doesn't hurt my heart any less than it does when Lily struggles.  When her horizontal pencil strokes are weak.  When she has an accident at school.  When she doesn't eat.  When she can't participate in something her typically developing peers are doing.

They're both my kids.  I don't ever think, God it hurts my heart that Emma is sad about not making the talent show, but at least she's not autistic! 

Observing Facebook, Twitter, and the blogging community I see daily (on my lunch break, of course) where autism parents rail about NT parents' problems.  My close friends in the autism community do it.  Every day.  I see it in the form of:

  • A rant about an NT parent friend/acquaintance bragging about son/daughter's honor roll/soccer team/dance performance, etc.
  • A rant about an NT parent friend/acquaintance complaining about son/daughter's struggles with (insert sport/school activity/etc).
  • A rant about how offended we were that NT parent friend/acquaintance asked stupid/insensitive (but well-meaning) question about our children.
  • A rant about how hurt we were that NT parent friend/acquaintance won't bother to even educate him/herself by asking us questions about our children.
NT parents are damned if they do and damned if they don't in the autism parenting community.  If they ask questions out of ignorance they're excoriated for their insensitivity.  If they fail to ask questions then they're derided for not caring.  If they brag about their kids, they make us feel bad.  If they complain about their kids they lack perspective.

And what I think every time I read one of those posts is, if I didn't have an autistic child I would be doing each and every one of these things.  I am "educated" about autism solely by virtue of having an autistic child.  I wouldn't know the first fucking thing about autism if it wasn't for Lily.  I would ask the questions..."does she make eye contact?"  I would say, "Is she really good at math?"  I might argue, "But she seems happy and smiles!"  I would complain that Emma didn't start at pitcher.  I would brag that her team won the championship.  I would shy away from asking questions that I feared would come across as insensitive.

I get it.  I do.  There is a definite difference between wondering whether your child will make honor roll or wondering whether your child will ever learn to read.  That's perspective.  But NT parents love their kids no less than we love ours.  I know this because I'm the parent of one of each.  And I will be damned if I'm going to censor someone from bragging about how awesome their kid is doing, or how heart breaking it is to see him/her struggle, even if that struggle seems trivial to me, or the success unapproachable relative to my autistic child.  They love their kids like we love our kids.  Their lives should not be framed around my daughter's neurology.

I think what bothers me the most is that sometimes the same people arguing that NT parents need to become educated about autism are the same people who get butt-hurt when given an opportunity to provide that education.

I can either answer the question, "Is she really good at math?" with "No, autism doesn't mean she's a fucking human computer, asshole," or, "Actually, they say about 70% of kids on the spectrum struggle with cognitive/intellectual disabilities.  We're not sure where she falls, but she struggles to communicate on our terms so it's hard to be sure what's going on in her brain."  Those sorts of things are difficult to come up with off the cuff when they seem insensitive and the easiest response is just to lash out instead.  And I'm not saying my life or Lily's should become someone else's teaching moment.  I'm just saying, the same perspective that we supposedly gain by virtue of having an autistic child, we somehow selectively forget when given the opportunity to apply it to our NT parent friends. 

I try to talk very candidly to friends about Lily's successes and struggles.  I don't know if it makes them uncomfortable that I'm excited about something like "asked me a question appropriately."  Maybe they're on more comfortable footing when I share Emma's successes and struggles because they get the frame of reference.  Regardless, I also try to celebrate their kids' successes with them...and lament their struggles.  They love their kids no less. 

I'll probably realize I'm wrong at some point, but I feel like I've reached a really good place with Lily.  I feel like I accept her completely.  But before I got where I am with Lily today I wondered how to accept autism.  Before I wondered how to accept autism I wondered how best to spread awareness.  Before I wondered how to spread awareness I wondered what had caused it.  Before I wondered what caused it I wondered whether I shouldn't have vaccinated.  Before I wondered about vaccines I wondered about cures.  Before I wondered about cures I didn't have an autistic child.  Each new thing I 'learned' either built upon the last, or completely razed it to the ground and rebuilt it from scratch.  I was totally adrift and I needed to understand.  Needed to because my daughter was autistic.  No other reason.

Before I had an autistic child everything I knew about autism came from "Rainman".  Everything.  Just like your friends.  You don't like the questions they ask?  Help them ask the right ones.   You can't celebrate your friends' kids victories and support them during their losses?  Then the problem isn't your friends' insensitivity or lack of perspective.  The problem just might be YOU.

28 comments:

  1. :) love it. All parents have struggles it's just different. No one struggle is worse than the other.

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  2. So true. This is a really good reminder, Jim. Thanks. I agree that I would be the one asking supposedly "insensitive" questions if I didn't have a kid with autism. I know this because I have said really stupid things with regards to adoption to my sister who adopted her two wonderful kids, who I love as much as my other nieces and nephews. I had no idea that the way I phrased the question was insensitive until she pointed it out to me and then I was appalled.

    Not too long ago, a friend's kid made a remark about Danny's autism that I knew came from his parents. They had tried to explain why my son was different and the words they used kind of hurt me. They weren't intentionally hurtful, just misguided. When I really looked at it less emotionally, I realized that I could have very well said the same thing years ago before I knew anything about autism. At first, I wanted to get angry, but then I remembered the times that this mom has had all three of my kids over and how she always, always treats Danny the same as the other kids. Then, I remembered the BBQ where Danny was very close to melting down and super hungry, but I knew he wouldn't eat until he calmed down, but his hunger made that difficult. This mom quickly came to my rescue, asking if she could put in a movie for Danny in the basement. She promised she would keep all the other kids out until he was ready to be around other kids again. Obviously, this woman cares about my kids and never meant to hurt me. This experience really reminded me that instead of getting angry, I should look at people's intentions, give them the benefit of the doubt, and then be willing to educate them. I have had some amazing experiences because of that.

    Still, there are days I get really snarky (at least in my head) and frankly, jealous. It's good to be read posts like this to put it back in perspective. Thanks, Jim.

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    1. i still do it...but when i see others do it, I really notice it. I try not to.

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  3. There are two themes running through this post. One is about people playing pissing games. It happens a lot when people hear about a struggle, they MUST jump in and say, "*my* struggle is worse than yours! :ppppp"
    I'm not sure where this comes from or why, but it helps when people can get to a place where they don't feel the need to compete about parenting or just life. I live my life, with my own successes and failures and you live yours. You talking about your life doesn't invalidate my experiences and my experiences don't invalidate yours. A lot of people get hung up on right vs wrong, but it's not always so black and white.

    The other theme here is people believing they have a RIGHT to be an a-hole simply because they've suffered or been a victim, or feel themselves more intelligent. Sure, it's your right to express yourself however you want, sarcasticly or rudely or aggressively, go wild! But the other person also has a right to not listen to it or accept being crapped on. So it all depends on your goals. If your goal in the conversation is to educate, most people respond well to a firm but kind approach (taking someone to task for making an ignorant statement *can* be done tactfully). If your goal is just to rant, accept that it might not be so well received. I know I don't always want to play teacher/educator and some days may be better than others. Sometimes the way I'm approached can be a trigger. But it doesn't always have to descend into a full out fight.

    I don't have an NT kid, but I have no doubt I would love them because they are my kid and irrespective of their brain functioning. Nice post :)

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  4. Thanks for this! :-) I'm positive I've managed to ask insensitive questions, though I try not to. I really appreciate that you (and other parents, of NT children or otherwise) generally attempt to read through to my good intent. As Patty commented, this isn't just limited to NT parents asking about autism or experiences with it. I have a frouple with a son who has some cognitive and physical delays (though is not "officially" on "the spectrum"). I am interested and honestly care about his progress and well-being, and I always look for ways to ask and NOT accidentally be insensitive about it. But I'm sure I make mistakes.

    One of the things I love about your blog is that you help to give me insight, and that insight helps me make fewer mistakes of the insensitive kind, I hope.

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    1. I think if we're friends I try to give the benefit of the doubt. i'd rather answer a "stupid" question for a friend than have that friend live on in ignorance.

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  5. I have 3 kids. One is on the spectrum. I'm probably on the spectrum. It runs in the family... my nephew, my aunt, my grandfather, a couple cousins... My youngest appears on the spectrum, like the meltdowns, but she's not. I don't know if it's a learned behavior or if it's something else, but anyway... In my experience, the only issue I've had with NT parents are the same issues all parents have with non-parents. I get it with NT parents, nonparents, parents of one kid who gets a lot of help... basically those strangers you meet in public who give you the evil eye because you dared bring your children with you, because your autistic kid dared to act autistic...

    How I handle it, I already described in a blog post, and it's just easier to dig out the link than paraphrase, plus I can use profanity on my blog, so beware for that...

    http://www.dribblesngrits.com/2013/06/playing-autism-card.html

    I do think this was a fabulous blog post. I struggle more raising the NT kids than I do the autistic one. I don't think either one is harder than the other. I think they are different, and for me it's easier to handle the one on the spectrum than those off just because that's where I am.

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  6. And major props to you for setting the right example. I'm not one to always handle ignorance with kindness, but I admit that kindness and understanding goes farther. It's also healthy for the soul.

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    1. well...i just WROTE the right example...and TRY to set the right example, but I'm guilty of it from time to time too. Thanks!

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  7. Great post! My son has autism and my daughter doesn't. I rant about both. My son has his issues and my daughter is just full of drama. My son crashes against his bed over and over for stimulation while my daughter is just loud. Very, very loud. But yes, they both have their moments.

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  8. Great post, really, really great. Thank you for voicing this, I am in the same situation as a parent of two boys, one NT, the other autistic. I find the NT parent bashing really tiring. I dislike the "my hardship is worse than your hardship" faux sympathy that some people engage in. Parenting IS HARD. It is also full of joy and pride and EVERY parent has the right to express their experience as real and valid.

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  9. So true. As parent to one of each too, I get you. Parenting is tough no matter what sort of child you have (and yes, they're ALL different ;)) so very few are having it easy out there, and I don't think anyone has all the right answers all of the time. Questions are a good thing, but it is true that we can all, NT or autistic parent, be having a bad day and we might not just like one phrasing of a question on one day which could actually seem caring on another. I think it's part of human nature to want to be able to help and say the right thing, but nobody really tells you what the right thing is for every occasion (imagine being autistic and not really knowing the right thing for any occasion, huh?!) so we're all likely to get it wrong sometimes. On the other hand a bit of ranting is good to get the frustration out once in a while, whether that be about NT parents or parents of autistic children :)

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    1. I rant on occasion. More often than not I hit delete before i post.

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  10. I think we are also hard on other autism parents when they don't have the same experience/perspective that we do. The most common example: someone may not believe that vaccines cause autism, why do they have to HATE the person that does? Everyone's perspective is based on their own experience. No one has a monopoly on the truth.

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    1. yeah, there are layers and layers of judgement

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  11. Great perspective! I don't have any children with autism, but my oldest son (who is now 33) had a severe cleft lip and palate, and although I am not an expert on his birth defect, I know all about what it's like to have a son born with it and all that is involved with correcting it surgically. I would never expect a parent who does not have a child with a cleft lip and palate to know much about it, though. So, even if we all have our own struggles in life, pushing expectations of knowledge of our child's struggle onto others is not the answer. We just all need to love and respect each other and try to help as much as we can.

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  12. I love this!! I also have one NT and one autistic child. Everything is relative!! Yes, I get very little sleep most nights, but does that mean that an NT parent shouldn't bemoan the fact that their child is ill and they got no sleep the night before?? NT parenting is hard too. Parenting is hard, full stop. I often think autism parents are just a bit too touchy. Understandable, of course it is, but just because our world revolves around autism doesn't mean everyone elses world should. Yes, we have a right to acceptance for our children, and one day I hope that will happen. But why should an NT parent feel they can't brag about their child's achievements in the same way we do?? Graet post, love it!!

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  13. This: "Before I wondered how to accept autism I wondered how best to spread awareness. Before I wondered how to spread awareness I wondered what had caused it. Before I wondered what caused it I wondered whether I shouldn't have vaccinated. Before I wondered about vaccines I wondered about cures. Before I wondered about cures I didn't have an autistic child. Each new thing I 'learned' either built upon the last, or completely razed it to the ground and rebuilt it from scratch. I was totally adrift and I needed to understand. Needed to because my daughter was autistic. No other reason." Thank you for this. I want to arrive here. I'll get there. :)

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  14. I often try to remind myself that unless they do have an Autistic child, why would they "get it". They shouldn't. We do have to give NT parents a break. Of course, that doesn't excuse people from being downright nasty when my kid isn't acting the way they think he should act...especially when they do find out his diagnosis.

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  15. Thanks for dropping truth bombs :)

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  16. So often we define our worries by our children's needs, both abilities and challenges, that I wonder how often we loose a moment of connectivity as a community of parents without the gentle reminder to listen as conscientiously as we speak. Most often I find my worries echoed in another's, regardless of our differences. Similarly I take great joy in celebrating others' accomplishments, much as I hope others might share my own celebrations. This is a lovely, thoughtful reminder that beside each unique child is a parent with exceptionally normally needs.

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