Sunday, January 22, 2012

Changing your child for the world?

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On Autism Daddy's blog yesterday was an interesting post that has created some hub-bub in our autism community. It very much reminded me of a post last year from a blogger who said if a pill to cure autism was invented, she would use it to cure her child. I wrote a post responding to that concept here. Autism Daddy's post is of a similar thread, but different fabric: He rages against the quote "I'd change the world for my child, but not my child for the world."

To be fair, our experiences with autism are different. I cannot imagine with much accuracy what its like to have child with severe autism. My son is high-functioning and (very) verbal... well verbose would be a better descriptor. haha. Trying to put myself in another autism parent's shoes is hard and I know trying to fill those shoes with my own feet of experience would be impossible.

What I can say with a fair amount of accuracy is that we've all had those moments. We have all wondered what life would be like with a neuro-typical child. We all have moments when the grass is much greener on the other side of the parenting fence. That simply is human nature.

Yet, here we all are in our difficult parenting circumstances with our kids (and maybe even ourselves) on the spectrum. He we are dealing with problems we never, ever imagined, that parents of neuro-typical kids grow out of after age four if they ever experience them and basically doing the best we can with what we have. He we are trying to raise children with autism. When that pregnancy test came back positive, I never envisioned this life. (Keep this bold statement, and all others, in your head for future reference)

I have this friend... well, sorta friend. I knew her before she was mother. Being a mother was really what she longed to be above all else. She had her child's entire future mapped out, including his personality, his likes, dislikes, his interests, his friends, his favorite color and so on. She divide up traits from her partner and self, along with all her family members applying them to her future child. In her head she envisioned who her child was going to be. She romanticized her unborn child when she pregnant, which we all do to a degree, but she was extreme.

I absolutely could not relate to her thinking at all. I knew that children are not who we want them to be, but who they are. Maya Angelou said once (and Oprah repeated it constantly) "When people show you who they are believe them". That was a lesson I learned a long time ago. When I became a parent, I lived those words. I did not want my son growing up thinking he cannot fulfill my dream for him. My dream for him is simply to be happy and to be fulfilled. How he chooses to do that is up to him.

I'm going to skip debate portion of response. Read my old post and you'll see that my feelings differ from Daddy Autism and the supporting reasons why. I don't feel the need to restate those things. What I intend is to leave you, my dear readers, with some fat to chew on. It's not my goal to change ideas, but rather offer another perspective...  by deconstructing Daddy Autism's words, delving into them and answering (most of) his questions.

Your kid sleeps less than 2 hours a night because of his autism. You wouldn't want to change that?!  

Yes, I would and I do. Sleep is an issue for autistic kids and it sucks royally as a parent because it means you don't get to sleep. The truth is is that a child with autism may not require as much sleep as other children, but both parent and child will survive it, cope with it and hopefully find a way to make sleep work. I write this on a day my son woke up before 3 am. Dude, I'm tired, but I've got a plan. 

Your kid doesn't talk because of his autism. You wouldn't want to change that?!

Chances are your child does talk, you just don't speak their language. Self-expression is an integral part of humanity, one which you cannot separate from a being unless they are brain dead. Does your child communicate like your neighbor's kid? No. Does your child have to work one million times harder to be understood? Yes. Does that devalue their self-expression? Absolutely not. If anything, it makes it carry a million times the weight of a nuero-typical person.

Would a parent give anything to make that self expression easier? Of course, but that doesn't necessarily mean changing the language. After all, I may not be able to speak Russian, but that doesn't mean it's a language that doesn't count. Growing up in a diverse community where English was a second language for most family friends, I noticed that many people assume not communicating in English means a person is not intelligent or less of a person. I've seen it with adults speaking to children with Selective Mutism. Last night, to take the point further, I watched The Kings Speech. King George VI was perceived as less than because he stuttered. And its been a stereo-type fought against in the autism community. Our society defines the inability to carry on a fluid conversation as inhuman, but if anyone knows it is not the truth, it should be us parents. As much as we teach recognizing non-verbal communication and it's importance to our children, we should be able to see and practice it ourselves.

Your kid bangs his head against the window because of the big A.  You wouldn't want to change that?!  

Do I want my son to hit himself when he's upset? Nope. Do I want a child to bang their head against the wall? Not at all. Do I want to change it? Yes. That is a work in progress. In most cases its a reaction to frustration (like not being understood when trying to communicate to another human being) or sensory overload. Sometimes it can just be a routine, since they develop so easily. But there are other coping skills to teach, just like you'd have to teach a neuro-typical child who chews their fingernails or sucks their thumb when under stress a more acceptable, healthy coping skill.

Your kid smears his feces against the walls.  You wouldn't want to change that?!  

Hey! It's art! I know, I know... but since this is "Pooping Red Guy" and poop is often the topic of conversation in my house. My son doesn't do that-- well, once when he was an infant he woke up early and used his mother's sleeping body as his canvas-- but my husband has talked about it in general when he did therapy at the elementary school. It's a theraputic issue. Yes, work on changing that. I'd definitely change that. Working on changing it until... (as Dr. Phil says. Meaning until it changes.) 

Your kid recites the same phrase from Dora The Explorer all day long.  You wouldn't want to change that?!

This one made me chuckle just a bit, not because I'm making light of the issue, but because we live in a home where repeated phrases from our favorite shows abound. It's not always the same phrase, but one from a mental library of about twenty. The same phrase can stick for weeks. We are an aspie household (and thanks to brain damage, its more apparent now). It's something we do when traditional language doesn't fit a situation. 

For my son particularly, his repetitive feature is knocking. If you watch The Big Bang Theory, you know Sheldon always knocks three times on Penny's door. My son does it on his desk. Three times, always the same rhythm. I know this means he's excited or anxious. It's self-expression for him and it helps me understand him better.

No, I don't want to change that. It's part of who we are. It's part of the way we communicate with each other. The more we recognize what we are expressing to each other the more enriching our family dynamic becomes.

Current Phrase: Mongolians, you tear down my city wall for last time! (but soon it may be Swiper, no swiping!)

Your kid is so stuck to his routine that any teeny tiny diversion and he has a meltdown.

That I do want to change because transitions and diversions are a part of life. There are a ton of strategies for dealing with this. Since I know that many, many kids with autism grow up to manage transitions in their own way, I have faith with the proper guidance (aka parenting), mine will, too.

Your kid will only eat chicken mcnuggets from McDonald's, nothing else will do.  You wouldn't want to change that?!  

Of course I would try. Yet, if Temple Grandin can survive on green J-ello and yogurt... eating chicken nuggets forever doesn't seem like end of the world. 

Now admitting that you HATE your kid's autism doesn't mean you don't LOVE your kid.  I LOVE my son.  But I HATE the disorder that he's been stricken with that will make him dependent on mom & dad for the rest of our lives and beyond.  

Warning: This part got up my nose and is a little more ranty than I wanted. 

I grew up hearing that my family hated that I was fat but loved me. You know what message I took away from that? That *I* was not good enough. That they hated who *I* was. As much as you separate your child from your child's offending condition, chances are your child does not. As a child that was just different, I'll be the first to tell you that my childhood mind did not understand that separation like my adult mind does now. How we approach our children's problem matters. What we say about it matters. How we express the negative bits matter-- regardless of the method of expression. When a kid gets the message that they are inherently flawed it changes who they are. Autistic children are not flawed as much as they work under a different set of mental parameters than neuro-typical people. They have different issues-- We ALL have issues.

I'll say it again: We all have issues. We all have things to overcome. We are all a work in progress and will be until the day we die. Sending the message to your kid that you wished they weren't born the way they were is just not cool. And since we are product of our experiences and flaws (which is an over-simplification, but I won't wax philosophical here cause this post is long enough) you could not erase your child's autism and keep their personality. It is by working with and through our defects and issues that we become the best person we can be and make a difference in the world around us. Autism does not exclude you from the human experience nor the human condition.

Do parents of kids with cancer or diabetes say that?  No, of course not those are life threatening diseases.  Do parents of blind or deaf kids say that?  I'd be curious.  Do kids with down syndrome or cerebral palsy say that?  I don't know, but I doubt it.  

In every movie, show, documentary or other forms of art about children with chronic illness there is always a moment where the child blame his or herself for their parents unhappiness with the condition. The message is *I* came into this world and ruined my parents life. They do not say *cancer* caused my parents divorce. They do not say *diabetes* made my mom cry today. They do not say my dad hates *my disability*. I'll give you a moment to digest that paragraph.

Get it? Good.

But dude, really? Cancers that children get are more often than not FATAL. (As a mom whose buried children, I'll remind you that sucks royally to hold your dead child in your arms and quickly turns another other living child problem into a blessing.) Autism is not fatal. I was taken aback by that statement. Just wow. I'm gonna give a parent of a dying child a little more leeway to be angry than a parent whose child has autism. Why? Because there's more time to deal with autism.

My niece with Cerebral Palsy went to Oxford last year as a Rhodes Scholar. She wasn't supposed to be able to speak. She wasn't supposed to be so intelligent. Her mom (who has cancer, by the way) and her dad decided to focus on her strengths and help her cope with her weaknesses. They had those its-so-not-fair-moments, too. I've had those moments. BUT, and a big but... they don't get projected and they are fleeting because... LIFE. Because he's alive. Because life is too short to grab onto the negatives with both hands. 

I don't say that I wish my child was different because I know he is a sum of his parts. (I do say I wish I could help ease his suffering during his symptomatic moments. My husband said that out-loud today and we say it directly to our boy all the time.) I don't want to devalue him. I don't want him to ever think he is not the absolute most precious thing to me in this world. He is the best thing I've ever made and being his mother is the best gift life has given me. Seeing the world through his eyes, without molding the world for him in my vision, is the most profound experience... there are no more words to finish that thought... it just is.

Changing the world for your child means all of the above in this post. It means accepting your child for they show you they are, it means recognizing the joy and fulfillment they get from lining up toys in a neat row. It means helping them rise to their challenges so they can be the best of who they are. It means parenting not the way you wanted to parent but parenting the way your child needs you to. It means understanding the world is wearing blinders or stuck in its own rigidity because the impact your child has on it and the value they add to it is goes unnoticed.

That's not just autism, but all children would actually apply to the above, huh?

Daddy Autism: Your child was put on this Earth to help you learn these lessons. You were put on this Earth to help your child grow wide in a narrow world.

If you take nothing away from this post, please absorb this list based on the bold-ed points:
  •  We cannot be in control of our all our circumstances all the time. Life throws curveballs to which we can only react. We do get to control how we react to our circumstances. 
  • We cannot dictate or decide what will make others happy and fulfilled. We can only recognize a fulfilled and happy person.
  • Through self-expression we are validated by those around us. Verbal communication is only a portion of the self-expression picture. In our culture it is the focal point, but that does not mean we are viewing the picture correctly.
  • It is our flaws that make us beautiful.