• Autism: Oh, how I hate thee…let me count the ways…

    Posted on April 19, 2012 by in Autism, Uncategorized

     

    I don’t like using the word “hate”. I really don’t. My children will tell you that I’ve always enforced not using it. Hate is such a powerful emotion that can bring about horrible reactions.  Feeling so negatively towards something/someone keeps you chained to them/it.  Oddly enough, as autism is a daily part of my life, I’m most definitely chained so I may as well make my peace about my emotional attachment.

    Now I’m well aware that there are plenty who won’t agree with my position. I don’t really care…seriously, I don’t. This isn’t about me bringing you over to my side of the understanding table. If you’re into embracing autism as a gift then please don’t continue reading this post because you most likely won’t get where I’m coming from. If you’re all about celebrating autism as the thing that makes your child “special”, please spare yourself from my tirade. You’ll only end up frustrated and well, who wants frustration in their life?

    For those who say that hating autism means you don’t love your child, I say this:  ^G…T…F…O…H…W…T…BS!! (Figure it out!)

    When I say, “Cancer sucks!” no one tells me I hate myself for not embracing my cancer. If I dare say how much I HATE the ill-effects that come with having this craptastic disease, there isn’t one person out there telling me I’m an evil human being for feeling that way. No one dares suggest that by hating my cancer I hate myself! Let’s face it, that’s a ridiculous response, isn’t it? Of course it is. Yet, tell someone you hate autism and suddenly you hate the person who has autism. Y’all are killing me with that shit!

    I’ve heard the, “You can’t equate cancer to autism because cancer is a disease and autism is a disorder. Cancer kills and autism doesn’t…Cancer is an intrusion of the body, autism is the person…” comments. Hmm…Do you read the news? Are you involved in any autism community groups? If so, you’ve seen children with autism who have wandered to their death. You’ve read the God-awful stories of parents killing their children because they can’t deal. Autism can kill and it does! Read this story about a boy with autism, the system that failed him and his subsequent suicide and tell me you can find something to embrace within such tragedy:  Death of Gareth Oates

    You think autism isn’t an intrusion on the body? Just like malignant cancer, autism is NOT a natural occurrence within the body.  Have you spoken to a parent who has recovered their child from autism? Want to tell them you can’t separate the sickness of autism from the child? Go ahead and try it…I dare ya!

    • If you don’t know anyone whose marriage has fallen apart because of autism…Good for you!
    • If you haven’t had to damn near sell a lung to pay for what seems like endless therapies…Can I borrow some money?
    • If you still have the same friends you did BEFORE autism and they COMPLETELY understand your child and your life…Will you see if they’re interested in making a new friend?
    • If you’ve never had your ass kicked during a meltdown…Can you give a sista some tips? Seriously, maybe I need to take up Tae-bo again!
    • If your child has never told you they wished they were ‘normal’ and you’ve cried because a part of you wishes they didn’t have to struggle with autism…Consider yourself a better parent than me!
    • If you’ve never wondered what it would be like to enjoy a day out in public without your child being stared at or feeling like you’re about to go ape-shit on some dumbass for trying to tell you how to parent your kid…Can we trade kids this weekend. My Costco trip is gonna be a BITCH! 
    • If you’ve never been in an IEP meeting with a group of people who don’t appear to have the sense God gave a gnat…Hooray for people who know what they’re doing! (For the record, Jabrien has had an excellent team for the past few years – thankyageezus!)
    • If you haven’t ever experienced days when your child doesn’t sleep – so of course, YOU don’t sleep…Do you have any room at your house cause I’m exhausted!
    • If your idea of embracing autism is smiling while you clean feces off the wall, out of the carpet and off the mattress…See bullet point 5 ^^^^ – Oh and I want whatever ‘happy pills’ you’re taking!
    • If you’ve never yelled at your child for something you KNOW you shouldn’t have and felt like shit afterwards while STILL questioning WHY they just don’t get it…Ahh hell, see comment above^
    • If your child loves making friends and doesn’t exhibit social awkwardness to the point of alienation…No snarky remark; I’d LOVE for Jabrien to know what that feels like!
    • If your child is capable of being around the noises of others without having a violent outburst, screaming or stimming uncontrollably…Damn, I envy you and I don’t envy just anybody!
    • If you’ve never seen your child have a sensory reaction to clothing, to food, to a color or a shape…I’d like to live in your world for a minute…or two!
    • If you haven’t had the pleasure of fighting the medical profession, the insurance companies and/or the school district to get your child what they DESERVE…Chile, you don’t know what you’re missing!
    • If you’ve never had the opportunity to educate a ‘well-meaning’ friend or family member…Your family and friends must be autism-educated folk. Are they available for hire? 
    • If you’ve never looked at those closest to you and known, sadly, that if something happened to you, there might not be any one who would understand how to deal with your child…Will your friends/family take in Jabrien because if King and I go at the same time, my son is shit outta luck!
    • Oh great, I just got in from talking to Jabrien’s bus driver. If you’ve never had to deal with the bus being 15 minutes late because your child is having a tirade because of a detour…CLEARLY your kid does better with changes in routine than mine does.

    I love my son beyond words. My despising, hating and being frustrated with what autism does to him doesn’t diminish my love one bit!

    I struggled with whether or not putting my feelings out into the ether was a good idea. I’ve been wanting to write this post for the better part of two weeks but I allowed other things to get in the way.  A part of me was worried about how it would be received by those who actually know me. Clarity set in when I reminded myself of one of my favorite sayings:   “Own your feelings!”  

    Being the researcher that I am, I searched the blogosphere to see if there were others who felt the same way I did. I came across a blog that said you couldn’t expect acceptance for autism if you hate it? Interesting notion. Especially considering that we live in a world where people are fond of saying things like:  “I may not like it, but I accept itI don’t believe in it but I respect your right to [insert unacceptable social, aka against the bible, reference here]…“  Social acceptance and tolerance are not mutually inclusive with liking/loving someone.

    • I can love an alcoholic but HATE their addiction.
    • I can love a liar but not accept them in my life.
    • I can accept that you’re a stripper but despise your profession.
    • I can respect a particular role you play but not want to be your friend.

    I don’t have to love autism to advocate that my son be respected. I don’t have to see autism as a gift in order to justify me giving your ass crap about being rude to my child. I refuse to act like autism hasn’t brought challenges to my life and doing what I can to rid my life of those challenges doesn’t make me a bad parent.

    If my son’s gut issues cause him pain, shouldn’t I be treating those issues? If his eating habits cause bowel obstruction, wouldn’t you expect me to change his eating habits? If he can’t be left alone for fear of throwing himself into a wall or eating styrofoam, shouldn’t I be trying to find a way to help him???  I bet you’re saying YES to all of those, right? Damn right you are! So tell me then, WHY does attempting to change those things mean I hate HIM or am trying to change who he is?

    People say that if you change those things that come with autism then you change who the child is. In the sense of those examples above, I hope they’re right because I don’t want my son to suffer with chronic constipation. I HATE that he gets so upset that he can’t help but throw himself into a wall. I get frustrated when he feels compelled to eat things no human being has any business eating. I wanna scream when his meltdowns are so bad that all you can do is stand back and watch him lose it…sometimes for longer than you care to admit.  I cry for the pain he’s in that he can’t express. I pray for a day when it doesn’t take an act of Congress to be able to leave the house.

    None of that means I won’t continue to fight for all the rights that he deserves! Maybe I just don’t want to have to fight such an uphill battle. Maybe I’d like for Jabrien’s chances to be a bit better.

    I respect your right to feel how you feel about autism. Our journey isn’t the same and so I don’t expect our opinions to mirror one another. The world is so ‘embracing’ of those who speak of autism in glowing terms. For those of us who don’t share that ‘autism-is-a-wonderful-blessing’ outlook, it can be a lonely existence. I’m not saying that life with autism is the worst thing in the world; it’s not. I certainly won’t deny that there are challenges but there are also great rewards in little things. Yes, I’ve learned things that were it not for raising Jabrien, I might not have learned. Some will argue autism taught the lesson… You say tomato and I say toe-mahto!

    And I also say…

    I HATE AUTISM!

     


    This guy right here, him I LOVE!!!

     

     


19 comments
salmacrump
salmacrump like.author.displayName 1 Like

A fellow blogger sent me a link to your blog. I also have a son with Autism. However i found that the only way I could move on was to accept it. Doesn't mean that I love it but for me it meant accepting the reality of the situation we were facing in a "kiss my ass" otherwise referred to as "we're going to do everything in our power to beat this" kinda way. So I OWNED IT! But like you said you say toe-mahto and I say tu-mah-tah. That's our dailect - LOL :)

 

AWESOME POST!

 

momtuition

Trae
Trae moderator like.author.displayName 1 Like

 @salmacrump Thank you! So many think that "accepting" your child has autism means you have to "LOVE" it. My son has autism, I don't love it...and I accept that. LOL - Thanks for sharing! :-)

myrafrancis
myrafrancis like.author.displayName 1 Like

Very honest.  I totally appreciated this post!!!

Trae
Trae moderator

 @myrafrancis Thank you and I appreciate you taking the time to read it. :-)

MeredithMull
MeredithMull like.author.displayName 1 Like

Great post...you are right on the money with this one! 

lellabean
lellabean like.author.displayName 1 Like

thank u for writing this! Im sure theres more parents out there that feel this way then not!! Those who arent seeing what you are really saying, Im sure have felt some of these things a time or two, but may be afraid if they admit it that it makes them a bad person. The truth is we are just like every other parent, we want the world for our children too! and they did get cheated, we got cheated. Every single day I wonder if my son will ever get married, have kids? All I want for him is to know what it is like to be in love. I have cried myself to sleep more nights then I can count with worry for my child. When people dont live this life or understand any of it say something to me about my child, the first thing I ask is if they have a filing cabnet full of reports on their child.

Trae
Trae moderator

 @lellabean I wonder those same things too! Thank you for posting!!

SandraWells
SandraWells like.author.displayName 1 Like

Are you sure you don't have my son at your house?

I couldn't have said it better myself!    Amen!

Trae
Trae moderator like.author.displayName 1 Like

 @SandraWells Guess that means I can't use your place as a getaway!?!? :-)

SandraWells
SandraWells like.author.displayName 1 Like

 @Trae Ummm no you wouldn't be "getting away" from it all here, have you heard the phrase from the frying pan and into the fire?   LOL

 

Traespective
Traespective

Thank you...now leave a comment on the blog! LOL

boosmomma
boosmomma like.author.displayName 1 Like

Thank you for sharing this....so much I have been trying to say...and you said it the best xoxoxox

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