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Sunday, December 9, 2012

Autism, you're doing it wrong!

Or so I've been told.  A lot.  Lately.  Almost daily.  Can you tell I have some stuff to get off my chest?  Bear with me folks. This one is a rambling mess.

Since dipping my toe into the autism blogging waters boy can I just tell you how much my views on autism have changed?  Well not really.  More like my views on how folks view autism now range from "Wow that's a really interesting perspective." To the more extreme "WTF!?!?" On many occasion.

I knew opening up a door to my life to the World Wide Web that I was bound to hear some criticism. I get at.  Here's the thing.   I'm not an expert.  I'm just a mom with wifi and a smartphone.  Up till this, I kept my arse out of the autism warrior mom wars for completely selfish reasons.  I value what little sanity I have left.  I'm only trying to help one kid and one kid only.   MINE!

I get that some folks although well meaning just cannot stop themselves from telling me or another one of my fellow in the trenches with me parents how we are screwing up our kids.  I suspect if we were all just parents of neurotypical kids only, these folks would still be telling me how much therapy my kid is going to need because of me as an adult.  I know these people just exist.

Some are nothing but clueless shit stirrers.  You know it.  I know it.  They can paint that perfect picture of what they CLAIM to be doing.  Doesn't mean they are actually doing it.  Or if it is really working as well as they say.  It's really easy to put on the mask of the perfect parent hiding behind a computer screen.  I do find myself  rolling my eyes and trying like Hell to let it roll off my back.  To not take it personal.  It's really hard sometimes to not engage.  To not explain more than once why we do what we do.  I've ignored it as much as I could but yeah there are days I've had to break out the delete and block buttons.  (Not gonna lie.  Trying to figure out a way to build a real life "Ban" button.  Hurry up science!)

The Facebook page that is connected to this blog has exploded in a way I could of never of fathomed.
Even though I really didn't think it could ever grow like it has, I am so grateful it did! It's been so supportive to me to say in a quick status "Oh my god I want to slap Steve from Blues Clues!" and immediately I'll get a ton of comments from folks plotting the deaths of SpongeBob or Elmo.  Folks who get that their kid's quirks aren't so bad because they will be the first to admit they have their own. (I am so jealous of my son's weighted blanket).  People who know that when one of their kids has autism, the whole family has autism.  It's just a completely different way to live.

If I have learned anything from this experience, I'm living autism the way it's right for this family.   Just like everyone else is doing what works for them.   Even if I think it's nuts.  You can save yourself a lot of heartache if you stop panicking you're doing it wrong.  You probably are, in someone else's eyes. But who cares?  Is it working for you?  Then game on dude and order another side of fries.




22 comments:

  1. You know what they say, "Opinions are like a-holes, everybody's got one". Keep on doing what you are doing. Happy that social media has put autism in the forefront...wishing it was here when my son was younger.

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  2. If you have met one kid with autism...you've met one kid with autism. Same with the family. Every family handles things in different ways. Tell them that you will consider their advice, and if it works you will let them know.

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  3. I think you're doing an awesome job and love reading your blogs and updates. I read your FB updates and I'm jealous, nay, grateful that you are saying what I don't to avoid my family and certain friends from sending a virtual grimace my way. No grimaces here!

    I would comment more on FB requests for help, but I'm just not ready for those same people to be in my business. Sad that we have to live in isolation to avoid that reality.

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    1. Make up a new FB account just for that purpose.

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  4. Just what I needed to hear. Yesterday, at the mall, while my daughter was mid-meltdown, my husband overheard some women talking about how my daughter was just begging for love that I was refusing to give. Thank you for the reminder that I am not alone.

    Thanks for sharing your journey with us.

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  5. I am an Autism Aide working with 4-5 grades and at the lower end of the spectrum. I love your views. I read all your stuff but keep my comments to myself. It's a hard road to hoe and you have my admiration and empathy. I have had to chase naked kids down the hallway as they laugh and run into a classroom. We change poop painted shirts daily and try not to get pinched or bitten. But oh when they smile or run off the bus and give us a big hug! Just do your best and take all advice with a grain of salt (and maybe some tequila)

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  6. It's one of the reasons I've not put myself out there publicly on the web. I'm too self critical as it is. Always wondering what, of the zillion things I've chosen not to do (in favor of having some sanity) will ensure my kids are doomed. I don't need other voices.

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  7. We all do what we can. Some parents are self important assholes. You are doing the best for your family. Don't let anyone get to you. Your blogs make me and so many others feel not alone in our everyday.

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  8. I am a big advocate of "every family deals with autism differently." Mostly in the 'blessing vs curse' debate, but I can see how it applies to all things autism including therapy choices, diets, meds, stims, etc and overall attitude about it. Good for you for knowing where you stand and being brave enough to share your life with strangers.

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  9. LOVE it!!!! I feel the same way...to each his own and how I live and raise my son works for me :) It may not be right, but is there only ONE right way??? :)

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  10. Keep in mind why you started this. Keep the good,ignore the rest,LOL. Those who are like you, need you. We all cannot stay isolated. We do what we do for our childen. Look at all the crap as learning to prepare your family how to handle it. Stay sane,LOL!

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  11. You sing my song, Sistah! Come on over to my house and we'll duet together! When it comes to autism treatment and therapies, there most certainly is not a "one size fits all" therapy, just like there isn't a one size fits all style of parenting. I'm especially fond (no) of the folks that like to give their helpful hints and suggestions, especially when things are going wrong or not working. They don't acknowledge very readily the things that are going right and being accomplished.

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  12. You're 110% correct, what ever works for your family you do and who cares if people think you're nuts. Let the naysayer's walk a mile in our shoes before they open their mouths. Giving my boy a chocolate cupcake for breakfast may be bad parenting to some people but to me it is preventing UFC occuring in my lounge room.

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  13. Welcome to the not-so-pretty side of blogging. I have several blog (turned real) friends that have contemplated quitting, just because they got sick of the nasty people out there. For what it's worth, I think you're handling it really well. :)

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  14. You, your Facebook page and blogs has helped me a great deal! Don't let those people get to you! You have way too many fans that depend on you and your blog to help keep us sane!!!!!!

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  15. I never did get the mommy wars. People need to either be helpful or shut the hell up. Moms have enough stress as it is and we should be SUPPORTING each other, not tearing each other down. hugs

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  16. One thing the internet isn't short of, and that's free criticism, masked as advice. Like you said, all we can do is roll with it because it's not worth more attention than that.

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  17. thank you for your blog. my child isn't autistic, but luck me, i was diagnosed with asperger's less than 10 years ago! golly, but that explains a LOT!!!
    keep fighting! and passs the fries!!!

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  18. Here's one autism mom who thinks you're doing a rocking job! Not that my opinion should matter! But I do wish we could all support each other. It's a hard road to walk and it's better with friends.

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  19. I finally have a slow day at work and I'm catching up on reading all your blogs ! Awesome !! We talk Peeing all the time, Josh will poop on the toilet, needs help with the wiping, but his problem is peeing. Wet's himself when he's in the truck too long,bus to long,waits too long etc. (for him thats 20min, I know where all the portapotties are for about a 30mile radius. When he says I hafta pee you have 5 seconds to get over and shove him out !But he also has the aim of the blind man. Always yelling, Make sure you sit down !! Tuck it in ! Did you pee on the floor ?? my neighbors love me in the spring when the windows are open. lol Anyway your doing a great job ! Enjoy the humor, Autism Daddy is pretty funny too as well as some others. Some people don't get it , they get offended, think we are disrespecting our kids, or "Doing it WRONG" !! It's your fault your in this situation, didn't you read Jenny Garths Book ? She cured her kid ! If only it were that simple ! Hate her by the way ! It's a hard life, I try not to give a rat's a-- what other people think , I try to be patient with the do gooders that tell me AGAIN about the gluten free diet or the correct fish oil we should use, or about how he needs discipline. Sure I've told off my fair share, I've spoken loud enough to embarrass a few people that were being rude, it's all in good fun giggle giggle
    most of all I lean on the friends I can, some family, believe it or not I really get a comfort out of reading these blogs, I read several, get a laugh I needed, a cry, be supportive when I can, most of all it somehow makes us seem normal, the normal family that bangs, flaps, spins ,yells, and never shuts the bathroom door! theres a lot of good supportive people on here, we might be miles apart but we're all in this together !Thanks for bloggin !! Hugs to you and the family ! :)

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  20. just found you...great work! this isnt a shameless plug i just wanted to add my take on what your saying so when you get a minute (!) check out my offering www.autismandlove.com an head for the post "yes but is he as bad as rainman?" !!!

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