(originally written & published on January 20, 2012)
“I wouldn’t change him for the world.”
Not a day goes by where somebody doesn’t write that phrase on my Autism Daddy Facebook Page. They basically write something horrible or bizarre or annoying that their ASD kid just did, something that most typical kids would never do, and then after telling you this bizarre/ horrible/ annoying thing they’ll say, “but I wouldn’t change him for the world.”
To that I politely, and with all due respect say BULLS&*T!! You can’t be serious!
I kinda covered this topic in a previous blog post called “The Autism Daddy Manifesto” but that was more about religion and my other 2 least favorite phrase “Autism is a gift from God” and “God only gives you what you can handle.”
But today’s blog post isn’t focusing on religion. Today’s blog post is focusing on that little 7 word phrase…
“I wouldn’t change him for the world.”
Come on, really?! Your kid sleeps less than 2 hours a night because of his autism. You wouldn’t want to change that?! Your kid doesn’t talk because of his autism. You wouldn’t want to change that?! Your kid bangs his head against the window because of the big A. You wouldn’t want to change that?! Your kid smears his feces against the walls. You wouldn’t want to change that?! Your kid recites the same phrase from Dora The Explorer all day long. You wouldn’t want to change that?!
I could maybe see parents of some of the higher functioning kids saying that phrase. But even then, for our higher functioning friends, your kid has a hard time making friends and is the recipient of bullying due to his aspergers. You wouldn’t want to change that?! Your kid is so stuck to his routine that any teeny tiny diversion and he has a meltdown. Your kid will only eat chicken mcnuggets from McDonald’s, nothing else will do. You wouldn’t want to change that?!
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.
I would change him in a heartbeat! I would sell my soul to the devil to get rid of his autism. I want him to have the exact personality he has now minus the autism.
So why do so many autism parents throw this phrase around?
“I wouldn’t change him for the world.”
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.
So why are all the autism parents throwing that phrase around? Why do we feel like we have to be ok with it.
“I wouldn’t change him for the world.”
Then why are you raising money for autism organizations? Then why did you try the GFCF diet? Why did you try neurofeedback or vitamin supplements? Why are you fighting for more ABA therapy?
You know why? Because you want to change him. You want him to progress. You want him to be more typical.
It’s ok to admit it. I swear. Try saying it out loud. “I’m as mad as hell and I’m not gonna take it anymore! I hate my kid’s autism and I want to change him!”
There doesn’t that feel better?
🙂
added 12/26/12
you can tell by some of the comments below that some people took my “i wouldn’t change him for the world” literally, and replied with things like “i want to change the world for him”, etc, etc…
that’s not what i was going for… i just meant the phrase “i wouldn’t change him for the world” to be synonymous with those parents that say, “i wouldn’t change a thing about him”… yeah, that’s it… i wish i could change the title of this blog post to
To The Parents That Say “I Wouldn’t Change A Thing About My Kid”, I Say Bulls–t!!
I wrote a follow up post the very next day further explaining my stance you can find that by clicking HERE.
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In response to your questioning if parents of kids with Down syndrome say it, it would be - oh, yes - all the time. But, lots of us do the same things - try the latest drug or therapy ...
yese autism is hard yese bt its par t ov who im an what im -aceptence needed an inklusion fr us that hav tu live wth autism
Finally!!! You are saying what we are all thinking!!!! Autism sucks!! And I would change it if I could!! Keep the blogs coming!!!
Cheers Alana
i have a autistic daughter who is 9 and although i love her she is one of the most annoying people i have ever met..ive heard people say that they wouldnt change them for the world and it makes me feel like slapping them!i find dealing with autistic people very hard as i am generally not a patient person and find there ways very irritating, it is like they go out of their way to be annoying and going on and on about the same annoying things !i know this might seem like a rant but sometimes i just need to get things off my chest and at least im being honest unlike a lot of people who have kids with autism.would i change it if i could 100% for them and the people who have to deal with them .
YES!!!! What Anon said above!! ^^
~KR
surely the 'kyle' you no and indeed love is that 'kyle' because he has autism... if there was a magic pill to cure autism in your heart of hearts would you really give it to him...'kyle' 'the king' is just that because he has autism.. its who he is.. there might be parts of it you dont like and parts of it you find tiresome and aggrevating and wish he was just a normal child.. but he isnt... he is more unique, strong, amazing and wonderful than most a typical people will reach in life time... and how wonderful is that.. to be in built with such amazing qualities.. my son has autism... and would i change that... no... because to have such a strong.. amazing unique person in my life is the most wonderful gift...
I'm with A.D on this one, I would sell my soul, my granny, the dog and the choc chips to the devil if it meant my son and my family were free from Autism.
To say that Autism somewhat defines a child and their 'self' is wrong and ill judged, I know 100% beyond a doubt that my son without Autism would still be the wonderfully, gorgeous, strong and cheeky person but he would be even more so as 'neurotypical'....the Autism is inhibiting him from reaching his full potential and I'd do ANYTHING for that to stop.
I agree with AD as well. Autism is not my daughter... yes she is a wonderful person and without the autism holding her back I can only imagine how great she would be. I look into her eyes all the time and I know there is a person locked in there and would love to be free. The symptoms of autism are awful to say the least and the impact on the family is equally as bad. So to all those parents that thinks autism is a gift...it's not. It is a curse and a hindrance on the ones we would give our lives to protect. I would give anything to take that gift and return it!
I wouldn't change your kids for the world, I'd change the world for your kids.
Part of it anyway - http://www.cannabisforautism.wordpress.com
Safe legal access to the gentle medicine.
I am an adult and the person who gave me my yoga teacher training certificate was also an adult and a perceptive one. That certificate was handed to me on condition that I used cannabis i.e. on condition that I change myself to be right for the job of teaching yoga.
Autism is a clinical term. 'Clinical' means 'problem that makes life worse'. If it doesn't make life worse, it's not clinical, it's individual.
We all want to reduce the clinically significant symptoms, keep our individuality, and have the choice.
I one wrote something about one of my kid's ADD way back in September of 2008. It's relevant. Here it is:
I think about things like if I could have my oldest child cured. The nature of his condition is in the function of his brain and the reality is that his brain shapes his mind: it shapes his soul. To cure his brain is to change him. Do I have that right? I know it's my responsibility. His meds have several non-trivial side effects that could change his life for the worse. Whenever it becomes possible to take him off those meds, without having a negative impact on his quality of life, it must be done. I think that to make the life of my oldest boy as good as it can possibly be I may one day have to make the decision that makes him a different person that he is now.
I couldn't agree with you more.
Well done! i hate my son's autism, i love him dearly and beyond words but the autism is tough on him, on me, on my husband, on our "normal" daughter and on our family dynamic!! We relish in some of the "cuteness" that autism brings, but we acknowledge its just cute bc it is behaviour that is more appropriate for a younger child. i would take away my son's autism in a second if i could!! Thank you.
well heres my comment....sure id love to change behaviors in my autistic children but i wouldnt take the autism away not for all the money in the world.
yep im a weirdo...first im aspie so is my husband and my 17 year old and most likely my 2 , 3 and 4 year olds.
im of the logic that if you do something to the brain that takes away an undesirable behavior you have just as good of a chance to take away something that makes them unique and special better at something then someone else is.
for example if your autistic child is a self taught mozart but he sleeps like crap and smears his poo if you try and remove those behaviors via anything that would damage or "repair" the brain (not really talking about therapys)then you stand the same chance as getting rid of those two bad behaviors as you do of getting rid of that excellent gift they have.
So no way would i change my kid work on his behaviors and try to replace them with more desirable ones but in my opinion damage his god given brain to make him normal no way!!
Honestly, I dont believe you!!
Have you never heard of venting? We all have moments with our Autistic kids that break us. Make us feel defeated, cry our eyes out etc.. Autism is hard, it is, and it is ok to admit that and to wish for those defeating moments to be different. I am NOT afraid to say I most definitely wish my Autistic 6 year old wouldn't scream at the top of his lungs any time he had to do something he didn't want to do along with hitting himself and kicking. I wish I could talk to him but there is a barrier that keeps me from being able to do that with my precious baby boy and that is Autism. Those are a couple of the things that I would do anything to change. I feel that the point of this blog isn't to state facts or conceal anything it's just good old fashioned venting about Autism and how it can completely bring you to your knees at times. If you can honestly say you never feel the way he described then you are either not being honest with yourself or are just VERY lucky with what you go through with your child with Autism and their functioning level.
Yes I needed to know I am not alone and though I feel for my son he is physically and mentally abusive and has no empathy. My whole family suffers. It would be a total lie if I said I love the fact that at any moment my son could suddenly start choking his baby brother, or hurting himself. I hate it!!!!!! He has almost killed his siblings several times and has to be watched 24 /7 so those not so annoying little corks are annoying as I'll get out cause you can never ignore him. I will not stop caring for him, but I hate the things he does
I wrote a very similar blog yesterday and completely agree with you. I am very religious and I agree with you about the religious points too.
This very subject came up on an fb support page but instead the phrase was..."I feel very blessed". I called bullshit then. I think you're right on!
My toddler has been diagnosed with PDD NOS and I am scared as hell, worried as heck and yes I hate it I hate when our service coordinator, special instructors and speech therapist refer to it as Autisim I want to choke the PDD NOS slap it against the wall and crush it beneath my feet I want my son to talk with his peers, make friends, go to regular school, get sent to the principals office for misbegaving, play sports,chase girls as a teen until he's tired, go to that kick ass after party at prom and be a sex crazed academically charmed college freshman! Yes I would change his diagnosis and all
the labeling that is welded to its horriblness. I want
to have the courage to tell my ex the truth about his son not being comfortable in the lie "he's a late bloomer" and digesting his comfort in believing it...I hate ABA! I want to stop feeling misplaced guilt for what I know cognitively it is not the fault of me or my ex husband but God tell my heart this so my head will follow suite...I love my baby Aamir Elijah Biggs and if I could I would give the rest of my life at this very moment if he could be free of his PDD.
completely & totally agree <3
Chase girls as a teen?
I want my son to have respect for himself and others. Trading bad behaviors caused by a medical condition for bad behaviors (chasing girls, promiscuity) caused by low expectations for "normal" boys seems a bit strange to me.
So.... you want to take away his mental disability in order for him to become an asshole?