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.


Autism-Daddy said...

I'll maybe post a longer comment later but for now I just wanted to say that the phrase my whole thing was based around was the expression "I wouldn't change him for the world" specially when it's used after something untypical...
As in "my kid just smeared feces on the wall but I wouldn't change him for the world"

It had nothing to with the concept of changing the world for my kid vs changing my kid for the world...

Just a point of clarification. :-)

Anonymous said...

EXACTLY !! you said what i tried to say on his blog last night which he promptly deleted. think ill have to make a blog just to counter with a different opinion LOL. Kristen

Anonymous said...

I just have one sentence to you said, your child is not severe! Case closed

Unknown said...

Just because we don't like the autism and may admit to it online with other parents who understand our feelings because they are right there too, does not mean our children have ANY clue how we feel about it. When I started hearing AD talk about hating the autism, I was a little upset, kinda shocked that he would say such a thing because Alex's autism is part of Alex. How do you seperate that? But the post you are talking about cleared it up for me, helped me understand what he was saying. I love Alex, but I don't like him painting me with poop and snot. I love Alex but I don't like freaking out because someone left the door open. I love Alex but I don't like that feeling in the pit of my stomache when I look up and cannot see him hiding behind a family member followed by my scream- ohmyGod!! WHERE IS ALEX!? I love him and there are parts of his autism I do like- his rocking is adorable. but there are some that I hate.

Alex does not know, my husband does not know, my other children do not know that I hate autism. I hate autism are three words I would NEVER speak out loud. I'm glad AD gave us a chance to admit it in "secret".

Anonymous said...

I think both you and Autism Daddy make some very good points, but as a parent of a nonverbal 10 year old, I think you really overstepped your bounds when you wrote, "Chances are your child does talk, you just don't speak their language," You were absolutely right at the beginning of your post. There are many things about having a severely autistic child that you haven't a clue about, and one of them is how hard parents of nonverbal kids do try to speak their language, and how frustrating it is to the child himself not to be able to communicate in a language that others can understand. (What good would it do a person to speak Russian if no one else did?)

I have one child who is just on the borderline of being autistic, and I think his differences give him a wonderful perspective. I'd like the world to be easier for him, but I think his differences are as much a gift as a disability. I have another child who is nonverbal, self injurious, and aggressive, I would love to know who he is without his autism. If I could cure him, I'd do it in a second,

Elizabeth Hewatt said...

I think it would be interesting if our children with autism could weigh in on this subject. I think much like us parents, they would have many different opinions. As far as my daughter goes, I am 100% sure she would leave the painful, limited world that she resides, if she could. Of course she is one of the severe children who struggles constantly. I also just did a blog post on this matter. While I side more with Autism Daddy, that does not mean I can't see many blessings that have resulted from our experience or that I walk around unhappy all the time. She had 2 years without autism, and 10 years with it. And she was much happier and suffered less without it. I think any parent would want to alleviate their child's suffering if they could.

Anonymous said...

As a parent who has 3 children on the spectrum I wish every day there ws no such thing as autism. I am being selfish, but it is so hard to watch them be shunned by school mates and it is even harder to come to grips with the fact that 2 out of 3 will never be able to live out on their own. We keep calm and carry on but I wish every day things were different.

ImaWestie said...

So many of the issues we would willingly change, can only be changed by addressing those that we have no direct reason to change.

Randi said...

I am sorry,but you must not understand what it is like to have a 10 year old who is functioning on the level of an 18 month old. Not only does my nephew not have any verbal ability, he has so much trouble learning any new skill. PECS is too hard for him to master. So, I ask you, how can you say that my sister is not taking the time to learn his language? He truly does not have any at all. It is heartbreaking every day. There is no similarity whatsoever to a high or even a mid functioning child. I can totally understand that you would never change your child, but please walk in others shoes before you judge them.

Anonymous said...

I can speak from two perspectives. I am an adult with a disability for which there is no cure and I am parent of two children with high functioning Autism. As an adult with a disability, I can state with absolute certainty that if there were a "magic pill" to cure me, I would take it. I would have wanted my parents to. I wanted a normal childhood and friends like every other child. I want that for my children and it breaks my heart into a million pieces to see my son struggling to make connections and being ostrasiized by the neurotypical kids. I would "cure" him in a second if I could and I'm willing to bet that he may wish that one day too. (as I did) So do I love my kids?? You bet!! It is because I love them that I wish I could take away the Autism that makes their lives challenging and results in playground taunts. I remember clearly how hurtful those were. If, on some level, all parents didn't want a cure we wouldn't enroll our kids in ABA therapy, hippotherapy, speech therapy, and try biomedical treatments. We all want our kids to have a happy life; wanting it to be an Autism free life does not make you a bad person or a bad parent.

Anonymous said...

Hi I am a mother of a 4 year old severely autistic child from a third world country.Chances are that my son will be my only child considering the fact that I am sub fertile..And do I want to "ex-change" my child for a NT ?? NEVER..!! Do I want his autism to go away...ABSOLUTELY...I wouldn't even mind him advancing in to Aspergers state in that case..At least then I will know what he is thinking...Washing the poop smears off of walls everyday, staying up with him the whole night and going to work on the following morning on most days of the week,spoon feeding him...those things do not bother me much, i can adjust,and i can even continue to do those till the day i die.. but each passing day not knowing why he is banging his head,why he is rolling on the floor crying,not knowing what is going on in his little mind,not being able to hear him call me "momma"(after waiting for 10 long years just to hear that) not knowing how he is going to survive when i am no more MAKES me want to CURE him of his autism...How would that change his personality.....I am sure if he was given the chance he will show that his personality is not that of an angry easily irritated little kid banging his head for no reason isolated in his own world looking only at the spinning objects around him, playing with his saliva and poop, not even knowing who his parents are ...i would want That personality to change..because sometime back i knew a happy and smiling boy who hugged his parents and almost talked before his autism made him regress...that's his real personality the one he was destined to have if it was not for his autism and i would want THAT personality back..!!
I believe in a cure because I believe anything genetic cannot create an epidemic of this magnitude !!! any irreversible initial neurological insult cannot bring out a different personality whenever they are suffering from high fevers..!!And no one yet has proved what the cause really is So i believe there is something environmental/something changeble which is causing this...I will never accept that THIS is how he is going to be for the rest of his life ..but that doesn't mean i will not continue to do whatever it takes to keep him happy...
I am in no positions to comment about those who say i wouldn't change his autism for he world...I would even agree if you are a parent of a high functioning child...If your child is severely autistic and you still wouldn't change him for the world and you really mean it then i really honor you...and wish i had your strength....because at this end 'what doesn't kill you does not make you stronger it kills you slowly each day"
And i will never stop dreaming for a cure...(i would if it was Down's syndrome I m dealing with; but not when it is autism ,or CP or even cancer ) that hope keeps me going

Anonymous said...

I'm kind of wondering, do you not have any fb fans? Or do you think just maybe noone agrees with your self-righteous opinions? I lost a child as well. She was four years old. And now I have a 13 year old non verbal, in his own world, totally dependent, self injurious child who I love more than life itself. Why would I jot want him tongo to school, have friends, play sports, have conversations, fsll in love...all the things we experience in life? Why would I not want that for him? Why would I want him bottled up in this world he cannot function in or understand? Wanting to keep him that way would be wrong. Wanting your child to grow as an individual and experience lifeisvwhat every good, loving parent wants or her child. Wake up. How judgmental and closed minded can you get?

Quiet Contemplation said...

Love this post. I think losing a child changes how a parent views the world in ways that others can't understand. If I could have heard the word autism in the delivery room rather than anencephaly I would've been just fine with that. I don't wish to diminish other people's pain and struggles, but I know things could be worse, at least in my eyes.

karensomethingorother said...

I will pop back and read this post, as well as Autism Daddy's post when next I get a free moment!
I just wanted to say I just read your guest post on Jillsmo's blog and thought it was fabulous. It articulated so well what we go through. I left a comment there, but in case you miss it, I want to say thanks for posting over here!