Wednesday, September 4, 2013

#Autism Mom Mcjudgypants

This is one of those posts. If you're a writer you know which kind I mean. Those posts where you begin, and erase, and begin again. You feel the words, but they remain elusive, just out of reach..... You know what you want to say, but can never manage to really convey it. The words you write don't do your thoughts justice, so you erase them, and stare at a blank page, and blinking cursor, until it's time to do something else. This has gone on for months with this post.

I think I have touched on the issue quite a bit about parentingkindness, and what we can gain from not being so judgmental. I talk about it quite a bit on my page, too. I know it's not a novel concept, yet I want to bring this topic up again in the context of special needs parents speaking to other special needs parents. (Sorry, I don't use person first language).

What does this interaction usually look like?-You may ask.

Well, it usually goes something like this:

Scenario One:
Usually, a topic is brought up by parent 1. Parent 1 may be asking for help, or may just have mentioned a certain topic of discussion, but either way parent 2 has heard, and has some advice to offer. They offer it, even if it's completely not useful to parent 1. If they are pushy, they will insist that it works, and ask a bunch of questions about why it won't work. Now, this is where I get flustered. Usually, I can just thank the advice giver, and be on my way, but if they are insistent, then that is much harder. I am not good with being evasive. I always respond with long detailed answers that will usually make parent 2 try to come up with reasons why their way can work despite all of those things.

With this scenario I feel kind of defensive, and almost like I am being attacked. I feel like it is obvious from what they are telling me that my child's autism is not the same as their child's.
As a matter of fact, Bean's autism is often not the same, and is miles, and miles away from other kids in terms of development, and skills. I don't want to sit there and have to go through the laundry list of things my son can't do with other parents on a regular basis. Advice given often is not applicable to a child without certain skills already in place. I always feel a mixture of sadness, and irritation when I have to explain this to another parents who just knows their way will work, if I will just try it. Sometimes, I am able to explain this to them, and they move on.  Other times....

Scenario 2:

You've gone through scenario 1 already. This person is not giving up. They want to know why you can't try _______. They know it works. If you tried.

This is where it gets hurtful. When people assume that your child is so delayed, because you don't put in the effort that they do with their child, then it gets to be nasty situation.  They just can't comprehend why your child hasn't grown like theirs. For most of them there is two reasons for it.  One is that they really don't understand the complexity of autism, and of humans.  The other (much, much more hurtful one)  is they are feeling like they aren't getting the recognition, and appreciation for what they know, and do. They feel like they put in all this time, and effort with their child, and they did so, because it was the right thing to do. They feel like all their sacrifices are worth it now that they can see how well their child is doing.  They're a bit resentful of others that they don't perceive to put in the effort. They don't want to/or can't see that sometimes you do all the right things, try as hard as anyone else, and still have kids that aren't able to do [insert skill here] yet. All the therapy in the world wouldn't have made a difference. They think Parent 1 is lazy, or just looking for sympathy. If they weren't then they'd get off their butt, and get busy.


Usually, Parent 2's emotion comes from a place of insecurity. They don't want to think about the fact that sometimes autistic kids grow skills with or without therapies, and lots of support from parents. They want the credit for these skills. Of course, teaching, and helping our kids grow is hard work, and deserving of kudos, but just because another parent is doing it differently, or getting different results doesn't mean it's wrong.

Here's the thing. We are all different, and so are our kids. Barring extremes like child abuse, and neglect there is no"right" way to raise a child. We often try to make our circumstances optimal before having kids. We try to be financially stable, have this, or be able to do that prior to them arriving. We limit TV,computer time,sugar, and video games because we hear it's bad for them. You can do all of those things so perfectly, and still not be anymore "right" than a parent that did none of those things, because there is no right, and there is no wrong way to raise little people.  They are individuals first, and foremost. They already are complete when they're born It's up to us to foster that little being they are to be a strong, confident adult. We don't have as much control over the person they are as much as most people think we do.  Our children's character is not measured by how well they listen to authority, and obey, but in how they treat others.  Parenting well has nothing to do with having a child that listens to you, and follows all the rules. Or by how much one's child can do. It's measured in how well we respond to our children as individuals. Every child needs to be parented differently, and it's up to us to meet their needs. Don't let anyone else tell you they know better than you on how to do this. If something doesn't feel right, then honor your instinct.

We can judge others, but really our thoughts about them say more about who we are than who they are. Remember that when you think to yourself/or even say out loud to another autism parent:

"Why don't you just.."
"It's easy to..."
"You should try..."
"Just do..."
"My kids know that...."
"All kids can learn...."

6 comments:

  1. Thanks. I've been through all of this with others, with regard to my son. I'm not an advice-giver, myself. I invite joint problem solving, but not all those "you should..." kinds of interactions. I think your insights about the needs that people meet when they impose their "solutions" are right on target. They don't know it, but they are meeting their own needs, not yours. They are not listening. Deep listening takes deep self-awareness and a sense of security. I think most people simply don't have much of either of those.

    On the more charitable side, however, I think the various forms of forced advice do come from a sense of caring. At least among my friends, I sense that they just don't want me to hurt. They want to solve it so I'll hurt less. And if they can't solve it, then they resort to minimizing it. I think they simply don't have the sophisticated skills that it takes to actually be helpful.

    thanks for expressing so much intricacy so carefully. I'm sure many of us can relate immediately. :)

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    1. I totally agree with you. Thanks for your thoughtful comments! I enjoyed reading them!

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  2. Agreed. I am not so often in the situation, but I have been on both sides..it can happen that I think "well, they really do that different, wonder if their child would react to what I do with mine" but there are so many reasons why and how we parent our kids the way we do, an outsider can never understand the whole picture. So I can say what I do and how I feel it works - for my child - without implying the other parent is doing something wrong.
    Unfortunately, people feel entitled to judge you. The worst thing is when they go on predicting the future! Not only telling me I am not doing the right thing because - obviously to them - its not working as well as what they do (w their totally different kid in their totally different life...) but also announcing me that my parenting 'sets up my child to...xy' or that he 'will never be able to...yx'.
    Unsolicited parenting advice is bad enough when there are no special needs to complicate and individualise things.
    But the judgement you get when you are already trying to be an especially good parent because your kid needs special, more help where others can pretty much just figure it out...that can be very counterproductive.
    I like input. I don't need assumptions and judgement.

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    Replies
    1. Yes, I like input, and like to give it, especially in terms of trying to explain to a parent what an the autistic child might need. I do that probably more often than I should, but being on the spectrum I have that ability to see from a different POV. I try not to judge, because I know that most parents are doing the best they can with their autistic child. I never want to make people feel bad, or like I somehow feel superior to them.

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