Sunday, January 13, 2013

Battling Infantilization. with no success. at all.


I haven't been on my facebook page much the past few days because I've been struggling with some things. Thinking my way through. ...or more accurately, thinking myself in circles. doubting myself. a lot.

I read a post not too long ago, had to be a few days, maybe a week, I don't know. If you follow me anywhere you know I suck at remembering anything related to time. So, I read this post. It was about infantilizing autistics which was written by an autistic woman. and immediately, I started worrying. (shocker, right?) I'm all, oh my goodness! I'M DOING THAT!!!! I say my son is a 12 month old inside a 10 year old body! Don't I? I think I do. Oh, man. oh, this isn't good. I must fix this. but first, I have to find out exactly what the hell she's talking about and how I'm doing it wrong. So, I message her. and she says recognizing younger interests is not infantilizing. assuming *only* younger interests is. So, fine. I can fix this. Dora's cool. Blue's Clues is cool. Keep the Sesame Street. but we're trading some other shows for Sponge Bob and Fairly Odd Parents. Now, at one point in time, Fairly Odd Parents was ok but as soon as I decided he had to at least try to have older interests... I tell you what, for a non-verbal kid, the boy sure knows how to get his point across. I'm not doing that again. uh-uh. So, fine. But we're cutting this infantilizing crap out. I'm putting my foot down. Somewhere there has to be something older that he's going to like.

Then I'm looking at his life. and CRAP. I'm totally treating the kid like a baby!

  • I already tried forcing the potty training issue- not gonna happen. at least, not until he's ready.
  • We're already working on feeding himself with a spoon. sometimes. ok, allowing the option more than "working on". but you know. what purpose does eating with a spoon serve, anyway? to be socially acceptable? F*ck social acceptance!
  • and we already got the whole drinking out of a glass. so yeah, that totally tops a spoon. so, whatever. oh, yeah. I need to google spoons. Spoon Theory.
  • anyway, and he needs that stroller, man! He's really getting too big to be carried. and he insists on not walking far no matter how much my back ends up hurting from lugging his big butt around.

So that's all got to stay. But somewhere something has to change. He is 10 years old. I need to see him as 10 years old. I need to treat him like a 10 year old.


So, I'm cleaning his room and I'm putting his toys away and this is what I see...
There is not one single "age appropriate" toy there and I am ready to cry. Yes, I see the irony in that and I'll get to it. Just give me a minute because I'm still fretting over infantilizing my boy. Ok, so, I'm back online. any time I see that word, you can bet your bottom I'm clicking on the link because I want to know how to fix this. it has to be fixed. infantilizing anyone because of their disability is taking away their right to be a full person. it's dehumanizing them and cannot be tolerated. So, I see a link and I click on it. and way down at the bottom, I see a comment... "developmental delay or developmental disability do not mean developmental stagnation"

and... OH, LORD!!!! I stagnated my baby! (which is not infantilization. You're never too old to be your mama's baby. I have come to the conclusion that if that is good enough for my other boys, it's good enough for him so he can suck it up and deal with it, "big boy" or not.) Protesting the sentencing to a special school in kindergarten because of the impact it could have on his future education, the school said to me in defense of their decision, "you have to consider the possibility that he may never go beyond where he's at." and I believed them. and I went with it. after some good mourning, ya know, but still, I accepted that. and I get to the point that I'm cool with it most days and then this. What the hell am I doing to this child!? I have to ask now, am I shortchanging him by accepting who he is and not pushing for more? I decided against outside therapy because I want him to be a child. I want him to live his life, not work his life away. Was that the wrong decision? Did I not believe in him? Is it my fault that he has made no significant progress what-so-ever in his entire school career?

I go running to my friend, crying my problems to her as usual. and she explains both infantilization and stagnation. He's not stagnated. Not in the least little bit. He makes progress every day. It may be slow progress, but it's still progress. Slow moving water is not stagnant water. and "infantilizing is about treating someone as a child regardless of their maturity...and recognizing that he enjoys the same things a younger kid would is being respectful to who is and not ignoring his maturity."

and this brings us right back to Christmas. Remember why the words "age appropriate" piss me off? No worries, I'll remind you...
"It has recently come to my attention that my oversensitivity to those words may be because there's not a thing age appropriate about this child- even less so as the years go by, and being told that his interests or his needs or his behaviors don't meet those specifications is being told that he is not the same as everyone else. He's not typical. He is different. He is abnormal. Even for a child that is autistic. That I should be doing everything I can to make him more age appropriate. More typical. More normal. Because he's not good enough as he is. I should be ashamed that I am not working hard enough to potty train him, make him eat with a fork, make him walk nice, make him use his words, make him play with toys that a 10 year old plays with- don't give him what he wants because what he wants isn't right."
and remember what I had to say about that?

"I'm not doing this. I'm not going to feel guilty. This is his life. He is who he is and he is perfect. Who gives a crap what he wants? what he likes? "Nobody puts Baby in a corner." This is my son. I make the decisions for him. and if I want to give him what he wants, well, then, I'm damned well going to give him what he wants. It doesn't need to be age appropriate, it needs to be Alex appropriate. He sets his own bar. He beats his own drum. Anyone who can't see the beauty in the rhythm he taps out... well, that's their problem. There's not a thing wrong with him, not a blessed thing that I need to change. Alex is Alex and I like him just so."
In my effort to fight infantilization, I started fighting him. Who he is. I started telling him that he wasn't good enough. I won't do it. I'm walking away from a battle that does not need to be fought.

Alex is Alex and I like him just so.

Infantilization continued here

25 comments:

  1. It is good that you are thinking about these issues and they are difficult and complex issues, so it's good that you realize it's hard and you're struggling with it.

    You've taken the first step in not infantilizing Alex -- you stopped referring to him as a baby in a child's body and you won't be referring to him later as a child in an adult's body. That's important. He is what he is -- a ten-year-old autistic and anyone who knows autism knows that all this *really* says is that he's an autistic who has been on this planet for ten years.

    He will change, he will grow, but it's impossible to predict who he will be ten years from now other than Alex, ten years older. But you've already made a major victory because you will be referring to him as a 20-year-old autistic man, not a child in the body of a 20-year-old. It's not "the body of a ten-year-old" right now, it's Alex's body. Separating him from his body -- even if only in words and thoughts -- plays into that whole "trapped inside autism" and "autism stole my child" way of thinking that doesn't respect the child and really, I think, just makes things harder for everybody, parents included.

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  2. (continued)

    Let Alex play with and watch the things he likes. I loved his toy closet! All those bright colors? Yes! And some of those toys will be his life-long friends. Let me tell you: I'm 45 years old and I can't sleep without Mr. Panda. I have a Fisher Price Roly-Poly Chime ball with duckies and horsies in it. I have floating ducks and frogs and cows and stuff in my bath. I have DVDs of "Spirit: Stallion of the Cimarron," "Beauty and the Beast," "Fantasia," Brother Bear," "The Aristocats," "Finding Nemo," and so on.

    My life would be very stressful without brightly colored things, simple cartoons, picture books. I snuggle up in my hammock with a Maurice Sendak book and everything is okay.

    What makes this not infantilization is that no one looks at these things (usually. I do sometimes get some nasty judgment) and says that I must be a child in an adult's body because of it. Now in my case, they have other things to look at -- I went to graduate school, I wrote a book, I solder electronics. But I'm 45 years old, not 10! I wasn't born this way and I didn't become this way overnight and along the way, I caught a LOT of flack for not being age appropriate. I remember an aunt practically forcing makeup onto my face as a teenager because "it's time you stopped playing with toys and started acting like a young lady."

    I think the key is to let Alex be a child -- whatever kind of child he wants to be -- an d don't try to label him according to what he likes and don't assume that he will grow out of his current interests (and don't assume he won't) and don't assume he won't add other interests over time (and don't assume he will.)

    Just like you say, let Alex be Alex because that's a perfectly wonderful person to be! But give him opportunities to move to other interests *if he wants to.* Alex has his own timetable and he will choose if he wants to get interested in bugs or electronics or knitting or whatever. And he will let you know. If he get intereted in something else, you know this! He will REALLY let you know.

    And be prepared for sexual urges in another several years. And be prepared that they might not look like you expected. And be prepared to tailor sex education to his needs, his interests. There's a really great passage in R.R. Grinker's "Unstrange Minds" about an autistic teen in India and the way his mother had to be creative in how she taught him about sex. But it made a huge difference in his life to know! And that's part of infantilization, too -- if your son is still playing with Fisher-Price toys *and* showing signs of sexual frustration, it doesn't do anyone any good to think of him as a child. At that point, he's a sexually mature adult who likes colorful toys and that's a pretty complex thing to be in this world and that's a challenge you have to be ready to face when it comes.

    Great post! Sorry to ramble on so long in response, but your post triggered a long response. I hope it was a respectful and useful response. I really like how carefully you think things through and I really love how much you love Alex.

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    1. This comment. I have read your comment over and over and over again and I cry every time. Yes, it's validation but it's more than that. You have given me a beautiful gift here. You tell me that Alex is ok. He's normal. You tell me he has options. Thank you for that.

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  3. This is such a brave post. I love how we get to see your thought process, warts and all - I'm sure that it's so helpful to many parents to see others going through exactly the same things. Not just the answers, but how you came to those answers. I love how much you try to understand your kids and do the very best that you can do for them, you try so hard and probably need to go a bit easier on yourself. Thanks for bringing up this topic, it's really important and I found this whole thing very interesting.

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  4. The toughest lesson I have learned as a mom, not with just James but also with Charlotte, is that just when I think I am doing everything right, someone shows me how wrong I really am. I have learned to ignore outside commentary and let my family be happy no matter what that looks like. PEACE

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  5. Your son IS perfect. The fact that you are aware of things such as infantilization and stagnation is proof to me that you will not allow either to happen. You are doing an amazing job.

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  6. Not only am I consistently amazed by how much research and reaching out you are willing to do for your family, but I adore how you then willingly and openly share all that you learn with us!

    My favorite thing about this whole post is that the answer, in the end, came from you. After you searched and learned and cried and thought, it was your own post from not too long ago that offered the most important answer. Alex is Alex.

    You are more aware because of the research and reflection, and you have helped us be more aware too. But in the end, it's lovely to know that you already knew! That in your heart you have always known! Alex is Alex. Growing and learning and being himself surrounded by encouragement and love.

    Alex is Alex. And he is lucky to have you!!

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    1. Tsara, the things you see... I love you.

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  7. Great post! It is such a fine line we walk as parents of special needs children. It's not always clear what we should do or shouldn't do. Other people may be judgemental and have their own opinions about how we should raise our kids, but we are the ones who know them best. We are the ones who know what's best for them. Not anyone else.

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  8. Wow, wonderful read, wonderful mom. Thank you for educating me!

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  9. You know what's best for your kid! Good job, mama!

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  10. i love this post - for so many reasons...

    ~ that you looked at this question... seriously looked at it, and researched it.
    ~ that you wanted to better understand, and make sure that *this* was not something you were doing to alex.
    ~ mostly, how much you love and accept alex for who he is. you said it with your own words... you answered your own question.

    alex is alex. <3

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  11. h my gravy. I don't know HOW you have not been on my reading list, but ON you go. Thanks for your honesty. it is i teresting to try and reconcile the grownupness (not a word) with some interests. But hey, I'm 50 and I make dolls. So there. ;-)

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  12. i understand if he refuses towalk GET HIM A CUSTOM ULTR LIGHT WHELCHAIR !! like a tilite orsomething a stroller is NOT appropriate, i understand the othr stuff fine, but a stroller is verydegrading !!! for any of us ! yes im DD MR too moderatly autistic ( and proud) get that boy a wheelchair, the custom litites and quickie ridgid frames cost just as much as that !!! get him a wheelchair NOT a damn stroller !!!!

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  13. get him a custom rigid frame wheelxhair from like tilite or somethoing A STROLLER IS THE M OST degrading thing you can have him in, i understand he doesnt want to walk, fine, get him a wheelchair, 10 year old boys who dont walk, use wheelcxhairs NOT strollers !! a custom rigid frame chair cost just as much as a damn stroller

    i am against pushing '' age appropriate'' for the most part, but a person mobility should be apporpriate a stroller degrades him and tehe rest of theautistic / dd commumity brecause of the imsage is forms

    GET HIM A WHEELCHAIR !!!
    i moderatly autistic and im DD delayed too, and i play toys and stuff too, but il be damned if i ride in a stroller and even his peers ( us) cannot socialize with him if he is sitting in a stroller ) he needsd peerr friends others who are dd / autistic, because we can communicate with eacother, we have a language and our own ways and we can connect interact and communitate in many ways ;-)

    juist get him a wheelchair please

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    Replies
    1. http://www.homestylemama.com/2013/07/10-year-old-boys-who-dont-walk-use.html

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