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Monday, April 29, 2013

If I say no...

For as much as I want complete inclusion and acceptance for my kiddo, there are just some times I say no to it.   It's complicated.  It doesn't always makes sense.  It's just what we deal with it here.  These are the possible reasons why though.   Print this out and refer to it when you think I'm being difficult, odd or just downright ridiculous to your invite.

If I say no it is because I am tired.  So very tired.  Physically, emotionally and spiritually spent.  No, he doesn't sleep in.  Ever.  Not the way your kids might.  If it's past 6 AM in this house when he wakes, we consider this a victory.  It never happens on a weekend or a day off from school.  Usually on a Monday.  Or it's just a sign that he is sick. Even when he does sleep till the sun rises, there is a damn good chance he was a real piece of work to get to bed the night before.   He probably slept in our bed.  Probably, who am I kidding?  He did.  So neither my husband or myself slept very well with this restless 67 pound kiddo between us.

If I say no it is because I know your gathering won't start on time or I know will run very late.  Either way, it will throw him so far off his cherished schedule that we will suffer the meltdown for hours after.   Or he will meltdown at your gathering. We hate meltdowns, we hate them more with an audience.   One full of people that might mean well but who's stares still hurt.   Or who decide then, mid meltdown, that this is the time they need to tell me that their nephew's girlfriend volunteers at a special needs camp or do we think vaccines are what caused his autism.  I'm not an autism information kiosk.  I really can't get into that kind of conversation when my kiddo is in meltdown mode.  My mind is running on getting the heck out of the situation.  When my kiddo is in meltdown, so are we.

If I say no it's because once I heard your kids remark to each other how my kiddo doesn't talk.  That babies talk more than him.  I know they are just being kids.  They don't fully know autism and all it's issues and why my son doesn't speak like they do.  Or when he does it's scripted lines from a YouTube clip he loves.   I know they won't play with him because they have tried before and when he didn't respond, they thought he was ignoring them.  It just hurts.  I know they are just being honest and just how kids are but it still hurts.

If I say no it's because we have another therapy session to attend and no it's not that easy to just move the time around.   Remember that schedule of his I just mentioned?  Yeah that's one reason.  The other, oh my god, his schedule is more complicated than most adults I know.  I bought the phone I have just because I knew the calendar option would be much easier for me to manage.  Good therapists are worth their weight in goldfish crackers.  I don't ditch them or play hooky unless he is ill.  So yeah, guess we're coming late or not at all to your kid's birthday party.

If I say no it's because that birthday party you invited us to is at a location that is a sensory nightmare for my kiddo.  I know his limits.  I appreciate the thought but I know when we just simply can't.   He's almost 9.  We've done all the greatest hits of birthday parties now.  I know where and where he can't go because he simply cannot not handle the noise, the crowd, and all the sensory issues that come up.

If I say no it's because I simply don't have it in me to deal with heaps of unsolicited advice you give.  Congrats, you read an article about Toni Braxton's son who has autism or you follow that Jersey Housewife on Twitter, who's son has it too. Great, that's great.  If you have no kids on the spectrum though, yeah I'm not gonna sugar coat this.  It's just obnoxious and I am to sleep deprived to be polite.  To just smile and nod and say "oh really" and pretend like I care.  Cause some days, I just don't care.   I don't want to hear about it or talk about it.  I just want to sip my coffee or wine and talk about some gossip or nail polish color or whatnot and get my mind off all things autism.   I'm not a one trick pony.  I got other things I would like to talk about or think about.

So yeah, this is what it is.  I"m not always funny or "on".  This is a tough road I walk but if you are patient with me, I am a good friend.  I may not always be able to talk on the phone without the kiddo yelling in the background. I can however text or email you in the dark while I'm waiting for him to fall asleep.  Just know I'm trying my best.

I won't say no to another side of fries though. :-)

25 comments:

  1. Oh My God someone that understands!!!

    My fav when kiddo in the middle of a melt down at a bday - oh I heard sugar can set "them" off,did you give him too much sugar? - I have to remind myself its not acceptable behaviour to slap someone . I visualise though :)

    somedays there is nothing better than coffee with a chaser of wine.

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  2. Yes..this! im going to send this to everyone i know who "doesnt know!" cus its pretty much the same as me!

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  3. Totally get it.

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  4. love it....more parents need to read this! Sharing!

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  5. Yup...this pretty much sounds like my life. HUGS Mama Fry!!! Hope we can have a glass of wine together and talk about our nail polish color.

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  6. Absolutely true. My son is 7, and he doesn't have melt downs, because everyone with autism is different. He loves going to parties. He'll go to every party he is invited to. BUT, and it's a big BUT, he only wants to go because of his love of balloons and his giant obsession with ceiling fans. And some days (ok, most days) it's just too much to explain to all the parents about his obsession, and to try to get him interested in the party, and to make sure he has a balloon that's blue or orange, and to try to explain to everyone what Asperger's is. (not to mention fielding questions like you mentioned.) And so on and so on and so on.

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  7. Yes, well said. The flip side, for me anyway, is that I STILL want to be invited. Because, you just never know when there might be that magical confluence of rainbows, unicorns and fairies which will make it possible for us to join in the fun!

    Big hugs, Mama Fry. Big ones.

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  8. Raw and honest, thanks for sharing. My life is different because we keep friends to a minimum as we try and avoid all this crap.

    I hope as my son gets older, though, things don't get so stressful.

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  9. Love this because it hits the nail on the head. We do not get many invites but then we tend to keep to ourselves most of the time for the very reasons you have mentioned. This includes keeping to ourselves from family and friends. Sometimes it is not as easy as they would think to socialize. We try when we can.

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  10. We have found it easier to just say no to many family functions as well. It's trying to have to explain over and over that singing "Happy Birthday" does not make our little guy happy, that noise and crowds are just too much for him to handle, that well meant hugs and kisses are disturbing to him................ Thanks to you I don't feel so bad saying NO.

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  11. Mama Fry , this is why I love you ! Couldn't of said it better ! Been hauling this road for 14 years and if anyone knows me they should know not to call me at the last minute to go out to dinner, or if Josh and I need to go out to eat, it can't be past 7 cause he will puke in my truck afterwards. And don't expect him to jump in and play at the BIG LOUD video/ bowling/ playground, he will eat his cake and sit and drawl, he is blocking out all the sensory that gives him headaches, makes him stem and sometimes throw up. He's doing the best he can. 9 times outta 10 I say nope sorry can't do it. It's like an automatic checklist goes off in my head and I'm filled with dread, people have to realize how stressful our lives are , why would we willingly add more ?? Please may I have another ?? :)

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  12. We were invited to 2 birthday parties this month but didn't go because you never know how my son will act.

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  13. Raw and straight forward. Great post!

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  14. Yes, ma'm! Absolutely! Especially the birthday parties! Exclamation point!

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  15. Thank you! Yes!

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  16. So much truth.
    I would love to be more social, to entertain at home and go to parties, but between the kiddo's issue and my lack of sleep... I just can't. And then I feel bad.

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  17. You get invites to birthday parties?

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  18. Word. Up. Thanks for putting all that swirly idea stuff into nice, coherent paragraphs. We just took our almost nine year old autistic son out skating. Well, he earned it. And damned if this idiot I know said, "After years of not coming to these, now you ARE! WHATTA JOINER YOU ARE!" No, I'm still not a joiner and finally, after several years of patiently biding my time (and his), I finally felt he could handle it. And he did. Yay us. And yay to this idiot acquaintance who left with her head still attached to her body. Win/Win all around! Don't you love a happy ending?

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  19. And obviously everyone here needs to have a glass of whatever together at some point in the future, 'cause let's face it; we're pretty awesome. Sincerely!

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  20. i have autism an severe sencorey iusse as my verble skills got better i stared tellimg my parents what i can an can t deal with .even famiy events can be to much an i rather not deal with trying to hear everyone talking .i love seeing my friends an get togher sometimes .but im so excuted .my parents mainstremd me as much as possible an toook me everywere an had be partice as muchg as possibe with lfe but now i will say no i cant deal .but my mom say i never sleep as a litte kid an would be up at 6 am wondering the house .or playing my record player one song over an over loltill someone got up .my older brother would sometimes get up so they could sleep .an turn on cartoons an get me cearl .i was passive never really got into any trouble .at home

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  21. My PDD-NODS kiddo slept in my bed from birth until around 10. He still has nights that I get to sleep on the couch and he gets my spot, as there is just not enough room for all of us, plus his prized stuffed animal of the night. There were other battles for us to deal with besides where he was going to sleep. Don't get me wrong, we tried for ever for him to sleep in his own room. He needed the warmth of another person in the bed. What helped? A huge 5 ft, huge stuffed bear from Costco. It gave enough weight for him to have the sense of someone else being with him.

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  22. I pick my battles and no I don't care if you understand why or why not. And if you think I'm being hateful or mean then sleep for the last 5yrs on the opposite couch of my ASD child at night and then we might have something to discuss.

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  23. I have had the same thoughts for the last six years and never said them. Thank you for bringing the feelings of the parents out there in such an honest way!

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