(originally written & published on January 21, 2012)
I just had to write a followup to my CONTROVERSIAL post about how I would want to “change” my son and get rid of his autism if I could.
This brought up alot of debate about why I would want to change the way his brain works. That this would be selfish of me. And why my writing is always so negative and when am I just going to accept my sons diagnosis and move forward.
First off let me remind you that Kyle has severe non-verbal autism. He’s 8 yet his receptive and expressive language test at around 18 months and they have for years! So that’s the autism I’m dealing with.
And while we are going thru a really good stretch right now behaviorally we’ve been thru the ringer in the 6 years since the diagnosis which I detailed in this blog post. So this is where I’m coming from.
Ok, so for those who’ve said getting rid of his autism is changing his personality and the way his brain works. To those folks I say, “I honestly don’t know how his brain works. There are so many debilitating stims and habits that get in the way. So maybe you’re right, maybe behind all the stims and add/ ADHD behaviors theres a beautiful unique autistic mind. So if you want to talk semantics maybe i don’t want to get rid of / cure / change my sons autism, maybe I want to get rid of the tons of things that get in the way of him making any significant progress. But in my sons situation that’s everything, the stims and behaviors and autism are all intertwined.
And for those who thing my writing is always negative and that I should just accept his diagnosis and move on… Maybe you haven’t been reading this page or my FB page too much.
This whole page was built on the idea that it’s ok to complain about the crappy hand we’ve been dealt. I could never find a place where people admit that it sucks and that it’s hard and that it’s ok to admit that you need help. So i created the Autism Daddy FB page and blog.
Nothing bad happened in my sons life this week that made me right that blog post. Our lives have been like the movie “Groundhog Day” where we’ve been kinda living the same day over and over for about 3 years now.
I wrote yesterday’s post during my lunch break at work when I read another comment on my FB wall saying “I wouldn’t change my kid for the world.”. That phrase always irked me and I quickly wrote a blog post about it.
And of course I accept my son’s diagnosis. I’ve accepted it from the beginning. And I love him with every fiber of my being. But I am so scared of his future. So forgive me if I want to change his autism to make him at least self sufficient enough to care for himself when we are gone. Forgive me if that is selfish of me.
Also you should know that alot of the things I’m writing about lately are not necessarily things that are on my mind now, but maybe things I’ve dealt with years ago, but now that I have this platform with 3000+ readers if I can help someone with something I’m going to do it… from something as simple as getting a handicap placard for their ASD kid, to not feeling guilty about needing antidepressants, to yesterday’s post that it’s ok to admit that you’re mad as hell at the Big A.
I feel like nobody else is talking about this so I will. So that’s why my blog might sound more negative than others. But negativity is not my life and if you follow my FB page and my blog you’ll get the balance you are looking for. We are a happy family of 3 whose lives revolve around our son and his happiness.
But one thing I have to say is that while I think it’s ok for us ASD parents to INTERNALLY debate whether we would want to rid our kids of their autism we shouldn’t so easily say that to the outside world.
I say this for 2 reasons…
1) I think us ASD parents should stop acting so damn strong. I don’t want pity as much as the next guy, but there’s no shame in saying you are overwhelmed and need help.
2) if you want to fight the insurance companies and the government for more autism coverage and better diagnosis than you can’t be telling the world how great things are. We need to be a unified front both LF & HF telling our horror stories to the world so they ll get it.
I’ll leave you with something I wrote in a previous blog post that kinda fits into this line of thinking…
“…lately when autism is on the news it’s a feel good story about a high functioning kid doing something great and profound. And I think that spins autism in too positive a light. It makes people think that autism is not that bad. They’re just a little quirky like the Asperger’s rocker on American idol. I think America needs to see the dark side of autism more often, like my son, the nonverbal, non-potty-trained 8 year old who bangs his head, won’t eat, has crazy stomach/ bowel movements and severe ADD & ADHD on top of his severe autism.
I like to read the feel good stories too…but the feel good stories are all you hear/ read/ see about autism in the mainstream media. And I honestly think when we are fundraising or trying to get more government $$ for autism if all people know are the feel good stories, “why give them research $$, they’re just quirky kids….” the kid that scored 15 points in the basketball game, the aspergers guy on amazing race, etc…”
That’s all I got for today. The end. Controversy over…
🙂
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I think there is probably a "glitter and rainbow" blog about autism out there somewhere that the unicorns can go and read if they think your blog is too negative.
Lol, Sam! Love it!
Amen.
This comment made my day! :)
Mine too!!
I couldn't have said it better myself.
LOL That was great =)
LOL Best reply ever!!!
Great reply!!!
I totally get what you are saying, and I think your voice is important for the parents of kids like yours to hear. It is easy to be shiny happy positive when you can see a glimmer of light at the end of the tunnel, but parents like you, who are in the deep dark trenches of autism, need to know that there is someone else out there who is not having a shiny happy autism experience, and it is ok to be upset. Thanks for being that person in the dark with them. I am sure it helps.
yes. :) it honestly does :)
it does!!
I don't agree with what you are saying AT ALL, just because you would "sell your soul to the devil" to get rid of your son's autism doesn't mean it would guarantee him a life without worry. I am deep in the trenches of Autism, but unlike you, I would NOT change my son for the world. He has taught me SO MUCH about tolerance and acceptance. Maybe you still need to learn your life's lesson Grasshopper.
I absolutely love the blunt honesty of your posts and it makes me feel like I am on a site with people who aren't going to sugar coat everything all of the time. I love that when I read your posts I can relate, and that someone is honest enough to post what they feel. I am sure that the many people who write that they wouldn't change him for the world deep down inside they of course wish that things were different. I love my son with all of my heart, I do however wish that he didn't have Autism, Adhd, and the other learning disorders that he has. Why? Because it is hard on him, he gets incredibly frustrated at the world and at himself, he has to wear diapers..and is ashamed by it, he is years behind other children his age and he knows it. Of course I wish I could take away everything he deals with. His sensory issues, his inability to control his emotions, his stims, I would give him the magic cure tomorrow if it were made available. I think we all would want to make our children better if we could. They would still be the same child..but not imprisoned by their disorders. They have to fight the rest of their lives...and yea..its not fair. I have accepted his diagnosis..but accepting doesn't mean that it isn't okay to feel like it sucks sometimes though. Keep up the awesome posts, I love them!
Come on people...if your child had cancer would you love that?? or diabetes....would you love that???? or a traumatic brain injury....WOULD YOU LOVE THAT!?!?! Autism is no different....its a disability, and a handicap...and a strain on the lives of the children it affects. I hate autism too, and Im sure my son does, and your son too Autism Daddy. You cant please everyone, so dont even try. Shawna Tidwell
Amen Shawna. Amen.
exactly. Why would any parent want their child to struggle in life? Every time you see your child struggle your heart hurts.
Amen! Indeed!! Autism Sucks! My child is amazing. Just because I hate autism doesn't diminish my love for him one bit!
What is wrong with you? Are you seriously comparing autism to deadly diseases? My grandmother died of cancer, and you want to compare what she went through, and what my mother went through, to having a child who is healthy and has a normal life expectancy? Just because that child doesn't think or act the way you hoped, you'll compare his differences to a life threatening disease? It doesn't matter if he's an awkward kid who talks nonstop about interests or a kid who might never speak - your child is alive, and likely to stay that way. Your situation doesn't compare to someone facing the death of a loved one.
Remember that line from the "addams family", "be very afraid"? Well, that's my life too. Kicker is my son is considered HF. Doesn't mean he can organize his day. No, he usually doesn't talk in class. Neither does he have control of his stimming or actions when he is under stress. And no, our educational system is not helping him achieve all that he can be because IEP must be some foreign code for 'idiotic enabling process' that allows teachers to totally disregard this document and not accommodate any language based tasks for him. So yes, I'm "very afraid" for what the future holds for my child. Being a bagger at the local grocery for the 90 days the state pays for isn't doing much for a career option. Not am I excited about him joining the program for HS drop outs, 1st or 2nd offense drug convicts, or others paroled for crimes less than homicide to become "productive members or society". My kid will be chum to the sharks.
So go ahead, Autism Daddy. Write your thoughts and travails. Personally, I'm pleased as punch (a phrase my son will never comprehend) that you put it all out there. As for the complainers - see the unicorn suggestion above.
I have enjoyed every blog post from you. I feel that under the autism my son would still have the same personality. My son is verbal and is considered "High Functioning" I am worried most that my son will be arrested because of his "Terrorist Threasts" or acting on a hormone impulse. I totally agree that its Bull Shit when people wouldn't change it. I have accepted my sons disabilty. I also have a typical child who is involved in all the typical things little boys do, it sucks. I see what my older son is missing. Also I am a stay at home mom because of the disabilty and financially we suffer. I am not talking about nice cars or anything fancy. But we could keep our heads above water if I could work. Nope, who would watch my child after he bolts or tells someone he is going to slice them with a chainsaw.
Also when we give birth and become parents our dreams are not AUTISM!!
Keep doing what you are doing! It is a form of free therapy for alot of us realistic parents.
I mean cmon, I want my son to have friends and not have to worry about this crap. I want to worry about the typical crap!
Thank you,
Gillys mom
Amen!! I have a husband that shush's me when we are in public & I say "she's has autism". I'm tired of people looking at me, thinking I'm a bad mom. "Kids will be kids" is the most recent comment I heard. Of course, I said "Yea, & add autism on top of it". People get very uncomfortable w/ this & I say good. I'm done tiptoeing around it & I don't care what people have to say. I'm blunt with my in-laws as they come 1X/year & offer their opinion. I cut them off just as I start to hear "You should...." My point..You keep posting, writing, "complaining"...We all need an outlet & if this is yours, then keep it up. To all those who judge, what happens if you keep it bottled up. Your son may not have a father at all!!! Plus for those of us that don't live in sugar coated lands, it is refreshing to hear what most of us think in dealing with this every day, hour, minute. You just have the courage to write it...keep it up!!
Forget what others think. Pay them no mind. They aren't worth your time. Do what's, best for your child without excuses. Your child is on a different path. Follow it with them. Days and years from now will it really matter what that judgemental person thinks? Or will it matter what you've done for your child?
I think you're speaking honestly about things that others have no idea about. They aren't raising your child. My 9 year old has severe autism...would I change that? Hell ya! Those people have not walked in our shoes. I have a son that needs 100% supervision at all time to be save, doesn't sleep, has multiple pee/poop accidents daily, and can't communicate. Why would I want accept him the way he is??? I want him to sleep, use the bathroom independently, not bolt outside or get into things while I go to the bathroom or take a shower, and be able to tell me that he loves me! I think any parent would want that.
I love this blog. It is exactly how I feel. I hate when people tell me that Autism is a gift from God and that God never gives us more than we can handle. Wanna Bet? I love my son but I hate his Autism and I hate my life because of it. He is 17 and very severe. It is like having a two year old. It is easy for people to say positive things. They wouldn't feel that way if it was their own child.
Exposing everyday realities can only help awarness. Portraying autism as " a gift" only serves to have us spinning our tires.
Responding to the differences appropriately will give you even better traction.
Sharing is awareness. Your words are power to show all sides of autism. That is why we call autism a spectrum disorder. Noone is going to feel like you exactly or like i do with my son. I thank you for your blog so keep bloggin!!!!!!