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Monday, July 22, 2013

The Autism Rules

This blog has been such a big learning experience for me. My interactions with you here and on my Facebook page has really opened my eyes and help me put words to my feelings.  In ways, it's great.  Sometimes though, it's more frustrating than I ever could of imagined. Let me explain. 

Yes, a large majority of my rants are just that, rants.  Ramblings of an overtired mom who is just fumbling her way through this. Many of you seem to get where I'm coming from because you are just as lost as me.  I have gotten great advice and I've gotten some WTF comments too. Not just stuff I disagree with but  possible solutions to issues with the kiddo where I just want to say "Do you think I'm in charge here?  I don't make the rules.  My boss does". I bet your "boss" does too.  Trust me, I'm not trying to do stuff the hard way.   I'm lazy and my feet hurt. 

There are just certain situations in our autism life where I have no control. Nada. None. Case in point.  I lament the other day of having to replace the boy's beloved Cars DVD for the third time. Now before you go running to tell me how I should just download it to his iPad or how Disney has a damaged disc program, stop.  It's not about if I know about theses answers or not.  It's that they simply will not do. Trust me. I know about them.  I've tried. The boy likes DVDs.  He also has certain movies he will only watch on certain TVs.  Yes, he gets that particular.  Heck, one of the main reasons I got the iPad was so I could download on it, music and movies.  However, to paraphrase the old song, he wants what he wants when he wants it. Or where he wants it and on the iPad ain't it.

The same with music. The kiddo has an extensive scratched up CD collection. Most of them used to be mine and my husband. Like most things with parenthood, nothing is really mine anymore except maybe my tampons and even those have been played with by the boy.  I figured an iTunes list would help me banish the meltdowns over skipping CDs. Nope, not even close.  He likes to put the CD in and hold the case.  Then walk around the house with it and turn on his certain DVDs in his certain TVs and then play YouTube clips of his favorite commercial jingles on his iPad. ALL AT ONCE. Good times I tell ya. Good times. It's not unusual for me to find an empty Steve Windwood CD case in my bathroom sink. This is just what he does.  No convincing him otherwise.  What's my other option?  Replace said skipping CDs.  Sometimes we do.  He's on copy number SIX of GLEE presents The Warblers.  I pretty much paid for Ryan Murphy's summer vacation home.  My other option?  Listen to said skipping CD which turns the Greatest Hits of Cat Stevens into a DJ House Music club hit the way it bops all over the song.  Peace Train gets funky y'all. 

Some of you now get this.  Either because your kid does something like that too or perhaps with a few tweaks of their own. Some of you get that's just how an Autism house rolls.  This is where I say I don't make the rules.  I don't have the autism so really how could I?  Now I can make suggestions.  I can try to organize the chaos that makes perfect sense to him. Or I could just let it ride and since the kiddo is 9, I'm letting more stuff like this ride.  Although I do find myself following after him turning off all the things he just turned on but there are many days where I just am to tired to jump on the "Turn on all the things" exercise loop.  I ask him to lower the volume, which he surprisingly does.  I put in my ear buds and listen to my own tunes.  In those moments I realize it's not worth rocking the boat and questioning the autism rules. Quirk on kiddo. 

All I ask is this, before you spend the time typing me or any other blogger a long email or comment on how I can do things instead, remember the autism rules in your house.  You'll notice that I am not asking for how to stop something.  Trust me, I am blunt.  I will flat out say what I need help with.   I've been an autism mom long enough to know that.  I also know dollars to donuts that you got some rules in your house that you wouldn't even dream of changing.

Stay quirky my fries.  :-)


32 comments:

  1. I LOVE THIS! quirk on MommaFry!

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  2. I'm with you 100%. If it isn't going to hurt him, I try to go with the flow of his latest and greatest quirks. If you are all getting out of it alive then you are doing a great job.

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  3. love this and totally agree!!! my son also loves the DVD covers :-) even when the dvd is scratched to hell, we keep the case. every house has its rules and its quirks. great post

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  4. Two different sets of earphones 1 plugged into DVD player and in 1 ear and the other plugged in iPad in the other ear? I'm serious!

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  5. bahaha LOVE THIS! Autism rules in the classroom too!

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  6. I had to laugh!!! My 7 year old boy (DS and Autism) does the same thing with his DVD's! He has to have the DVD player going with ...YES, CAR'S, in the background on the TV while watching Handy Manny episodes on his ipad in front of the TV with the volume on ipad all the way UP!!.....I have noise cancelling headphones for myself, lol! Love, love, LOVE your blog. It makes my day all the way from Australia. Keep us laughing Mamma Fry :)

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  7. Mama Fry, I am with you! Want to know where we have spent all of our money over the years? DVDs and CDs (scratched/broken/lost), headphones and earbuds (chewed cords), microphones (beat to hell until they no longer work or the wire mesh has become a dangerous weapon), microphone/electric guitar cords (jack somehow gets pulled out of cord), and guitars (broken, multiple methods). You have a suggestion? Yeh, we tried that. Or we decided it was easier to just let it ride this time. We still have a $25 iTunes card that the kid doesn't want to use because iTunes don't come with liner notes...at least, not the kind you can hold in your hands. Quirk on!

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  8. Jenifer PearsallJuly 22, 2013 at 9:10 PM

    I love this and completely agree!! I also just started my own blog/Facebook page and am just waiting to hear the negativity I get, unfortunately. I am hoping it will do more good than harm, of course, and that people who don't know what it is like do not judge. I've been there and will always be there, as will you. Carry on, Mama!! You rock!!

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  9. It's fans, running water and lights (to be off when we need to see and to be on when we want the kids to go to sleep) in our house. I cannot express how delightful summer is, in that we now Want the fan on 24/7. Good post.

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  10. Yes!! I completely agree with you! My son MUST be in a certain outfit in order to play a certain video game. If it's Sonic, he must be in a long-sleeved red shirt with a blue t-shirt over it. If it's Zelda, he must be in his green shirt with darker green shirt over it (ala the vest) and also wearing the accompanying shield with the sword! If he plays PacMan, he MUST be wearing his long-sleeved red shirt with a yellow t-shirt over it. If he is playing "Michael Jackson, The Experience, it's his black sweats, black t-shirt, black hat and, yes, one white glove. If he can't wear the right clothes, he simply won't play the game. I don't even worry about it. I just keep washing the clothes. Solidarity Mama Fry. :) ~Elly

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  11. Amen, lady! Right with you!

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  12. YES!!! I GET kiddo... I GET my own too! Yes I have Despicable me on the Galaxy Tab blaring and THE HOBBIT DVD in her room playing and then i take a double look...shes plugged in to the iPod...okay at least were not in melt down mode today... i wander off to do laundry!

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  13. I have purchased 4 copies of my son's favorite Disney sing-along video. I say we petition Disney for an Autism-exception to the "no making back-up DVDs" digital rights management on their discs. Sigh. Whose brilliant idea was it to put kids' movies on the most easily scratched item known to man?! <3

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  14. I have started laminating the DVD covers, just so they hold up longer. Pisses her off at first, but now she's accustomed to it. Stacks and stacks of scratched media in my house. We are an audiophile's nightmare.

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  15. Look, if it prevents a meltdown, do it. Seriously. Great job, Mama!

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  16. Love. love, love this. No one seems to understand and after reading this I felt such a weight lifted off my shoulders. So tired of people who have no clue always downing me for "giving in" Well like someone stated if it prevents a meltdown than I am doing it. If it means buying 10 copies of the same movie so be it. Great article!!!

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  17. Awesome and So True... I have 3 little leprechauns (21 boy NT, 18 girl Autism, 17 boy Autism) and myself... new to your blog, and love it... for me we just ride the wave and let it be, in my home we are all this way... lol

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  18. <3 it!! That's all I'm going to say today.

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  19. I can't tell you how glad I am to have stumbled upon your facebook page. It helps me so much to hear another autism parent talk about situations in a more realistic way. It seems like everybody else has it all together, and I feel helpless and that I have no control. It seems like most of the other stuff I read makes me feel insufficient as Mikey's mother. His entire being revolves around video games, which is fine with me. He's been playing them since before his 2nd birthday, but before that all he did was cry and scream. Plus, I have used our games to teach him so much. We have the same issue with all of our discs, especially games. We have replaced a few several times, but can't afford to go out and buy a new game every time one fails to work. AS I was reading about your son and cd's, I remembered a pawn shop my friends and I use to go to as teenagers to buy $2 cds. If they skipped, they would put them in some sort of resurfacing device, turn a crank a few times, and they came out like brand new. I think I will look for one. I'm not sure if they would help with the game discs, but worked like magic with cd's. Maybe it would save you from having a few meltdowns

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  20. My son was just recently diagnosed with Autism at 4 years old. I can only imagine the "fun" we are going to have in our Autism house. He is also visually impaired which adds a whole other layer to the "rules" that he puts forth! :) I loved this blog!

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  21. I love how and what you write. You and Mostly True Stuff :) You two literally saved me from going crazy!! From the bottom of my heart thank you for putting yourself and your experiences out there for mom's like me to read about and connect with.

    I have had so many people tell me what I should and shouldn't do, what I should try, etc. over the years regarding my son and it drives me crazy to this very day. Family members are the most "helpful" in that regard. I know other people and family members mean well, I really do, but really if I could buy something that would 'fix' a behavior don't they think I would have done it by now??

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  22. We have rules as well. Some days we speak Parkernese because he has his own language, Nate has to have cereal every morning for breakfast no exceptions. Music especially country flows thru out our home. If one of them us not listening something is up. Never disrupt trampoline time not even for dinner. Some of the rules changed for us the older they have gotten but movies, music, and cereal still rule.....totally get it, my boss is calling.

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  23. I love your blog. I have 3 on the spectrum from severe to PDD. My oldest is the most severe. While you are stuck in DVD , I'm stuck in VCR hell. He loves those tapes and yes, we tried downloading movies and that didn't work. He doesn't like DVD's much...but he can run the crap out of a VCR with his toes. I get what your message is. Glad I found your FB and your blog. After 14 yrs of a diagnosis, sometimes I still feel like no one understands. Keep blogging.

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  24. I have just discovered your blog and love it. I have a 5 year son with a diagnosis of Autism. We have had number of experiences similar to yours. The other day I accidentally bought yellow peaches. You would have thought it was the end of the world. I guess you know I won't make that mistake again. We took a vacation without our son. I made up a book for the caregiver that said, "everything you wanted to know about Egan bought were afraid to ask." In it I took pictures of the dishes he ate out and which foods to put in which dish. Also pictures of all the things he likes including how to arrange the stuffed animals in his. Great to know we're not alone.

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  25. Mama Fry, you make me laugh. I have followed you from facebook for a very long time, but just switched to my own blog. You have always been honest and bring the humor that we have learned to appreciate in our house. Your blog is always full of truth and light. Keep it up. It is nice to know that we aren't alone in this crazy bubble.

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  26. Feelin' ya. Wiggles upstairs bedroom after bath. Pink Dance Recital in the family room. Barney in the basement. This is written.

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  27. Great post! My question is this- how do you decide to tell people? And how? I'm a military spouse so we are always moving & meeting new people. It's exhausting & we are still in limbo with a diagnosis. He does have an IEP so right now where he goes to school (pre-school) already is cause for explanation. And we just moved again so I am staring to feel the pressure as we meet new people.

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  28. AMEN sister!

    Mine has similar traits - Like...when I'm driving, we can ONLY listen to a specific cd (starting the 5th year)...and each person that does drive the car has a specific cd that can only be played....so I also choose my battles.

    My undiagnosed ASD husband is the only one that can choose whatever he wants to play when he's driving.

    I don't have autism, I don't get it, but those are the rules.

    http://scrapperdee-keepingafloat.blogspot.ca/

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  29. loved your comment and everyone's response's, keep on going .we all have our own little stories of what each and every little or in my case big boss ( 6ft1 258 lbs ) likes or dislikes. and as we all say , all you can do is hold on and go for the ride .im new here but beginning to feel right at home very quickly. thanks.

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  30. Very informative blog.I really like your modern entertainment system that you had posted here,so nice to install it on a car.


    4ch DVR kit & Holden DVD player

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