My own take on ‘no communication’ day…

If you’re around the blogosphere, you’ve probably seen a LOT of people either having posted yesterday to say they won’t be around on twitter or facebook and the like, to gain an (albeit very minor) understanding of what it’s like to be autistic. The idea behind Communication Shutdown is, in my opinion, kind of the wrong way to go about it. However lots of people are taking part, and donating, so that is good.

Thing is, most people will just not bother logging onto twitter or facebook for the whole day. In my mind, that defeats the purpose of it. To me, it would make more sense to have twitter and facebook running, but be unable to reply to any of the many conversations that go on. I think that it would be more appropriate to do that, as most people on the spectrum will be included in conversations, but may not be able to put their thoughts into words.

Better yet, change the language you’re reading facebook in to something you only have a small grasp of, and THEN try to take part. I bet that would put you through a loop. That’s probably the most similar to what Communication Shutdown would be like for those on the spectrum.

On the other hand, as a result of this ‘shutdown’, there has been an uprising. A WONDERFUL uprising of people insisting that today they will shout from the roof tops about how their lives are affected by autistic spectrum disorders, and that… THAT is amazing to see.

Maybe that is part of the idea of it to begin with. Surely by doing something like that, the people behind this would realise that many of us would disagree, and do the exact opposite. So from that point of view, not only has Comm. Shutdown raised a great deal of money towards helping those on the spectrum, it has caused a huge amount of talking ABOUT it too.

That can only be a good thing.

As for me?

I’m trying to make sure that my tweets and facebook statuses are full of things relevant to Max, and our lives which, if I’m truthful, basically revolve around him.

Whatever you’ve decided to do, do it with pride, and know that you’re helping one way, or another!

*****

Today, Max is having a meltdowny day.

Firstly, because I thought we’d try him walking instead of being in the buggy on the school run this morning. Bad idea. Very bad. That boy is now getting far to heavy for me to carry for long periods, especially when he’s arching his back, crying, and not wanting to be up nor down.

Secondly, because when we got him and I’d settled him into watching In the Night Garden (godsend that program!), I went upstairs and tidied up the bombsite that is the boys’ room. Remember how Max has figured out that he can climb up on a toy box to reach the light IN THE MIDDLE OF THE NIGHT?

Well, I’ve moved around his room a bit, and jammed the boxes into a corner out of sight (with toys in them) so he can’t get to them… we shall see how long it lasts. Needless to say, he’s not very happy that his messy room has been all cleaned up!

Oh… and now he’s grumping as he wants another packet of crisps.

Today might be a long day…

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26 Comments

  1. November 1, 2010 / 12:55 am

    I am right beside you on this:) I hope the meltdowny day improves. Jen xx

  2. November 1, 2010 / 1:29 pm

    Communications Shutdown is IMO totally wrong way to do it. Instead something which would really bring the autistic spectrum disorder right up to the face of people would be something, because the people who know and are possibly participating in the communication shutdown already have a grasp of the disorder.

    I just read an article about Locked In syndrome (LiS) which was in fact a story of a man who has been over 12 years in LiS, only able to move his eyes and twitch a thumb. Lion in a cage, seeing and hearing, but not able to make any contact and tell anyone that he’s still very much alive, thinking and sane.

    That’s one of the most horrifying possible situations I can imagine myself in. And I wouldn’t have thought that being possible without reading that article.

    Oh, yes, we need a wake up call in many ways, autistic spectrum disorder included. To see what it is, how it affects the people around and close to it and how we ‘outside’ could help by knowing more about it.

    Yes. Is should be shout from the rooftops, if only for a day, every year. There are 365 days for things to shout about, so pick one soon before others start making their reservations!

    C out

  3. November 1, 2010 / 1:41 pm

    Thank you so much for linking up with today’s Autism ShoutOut!
    I also have a son who is an avid climber and loves to scale the entertainment center and jump down with an audible “BOOM” that will shake the walls. We have had to become rather skillful at moving furniture and keeping things away from high places.

  4. November 1, 2010 / 1:50 pm

    Thanks! He’s fast asleep at the moment… I think the halloween party we went to yesterday was a BIG thing for him to process, though he loved it! 🙂

  5. November 1, 2010 / 1:53 pm

    I think today is a perfect day for talking about autism too… the date is completely palindromic 01.11.10 – even upside down it’s the same. How many autistic kids will LOVE this day just for that! 🙂

    I have recently head of LiS, thanks to watching a tv series about it. Scary stuff.

  6. November 1, 2010 / 1:54 pm

    Oh don’t! I’m hoping this is just a phase and it won’t get too much worse with the climbing! LOL 🙂

  7. November 1, 2010 / 1:57 pm

    Sadly I think you are in for the long haul! I have considered buying Noah a small trampoline but then I fear he will just use it to catapult higher into the air and jump onto other things.

  8. November 1, 2010 / 2:03 pm

    We have an outdoor trampoline, Max loves it, but only if I’m in there with him so he can hang on to me! lol 🙂

  9. November 1, 2010 / 2:21 pm

    I love your ideas so much better than the total shutdown thing. Would you mind running for emperor of the world or something, please? With ideas like that you have my vote XXX
    Hope Max is a little happier now.

  10. November 1, 2010 / 2:28 pm

    […] This post was mentioned on Twitter by Marylin aka Softi, Marylin aka Softi, Marylin aka Softi, Marylin aka Softi, BATDAD and others. BATDAD said: RT @softthistle: How are you supporting the autistic community? By talking, or not talking? https://bit.ly/aoM3cN #ASDay […]

  11. November 1, 2010 / 2:49 pm

    LOL Jean, thanks! I think I would possibly explode with stress if I attempted the emperor of the world though… it’s hard enough being head of the house! hehe 🙂 x

  12. November 1, 2010 / 5:15 pm

    I can remember carrying my son around or having him in a stroller, long after he was too old for that. He learned to walk late. It just kinda snuck up on me, and I didn’t stop until my doctore told me that I had to. It was causing problems with my back. I’m glad you have joined us in Shouting Out and Bloggers Unite for Autism.

  13. November 1, 2010 / 5:52 pm

    I could see my back starting to hurt soon… it’s been twinging a lot more than usual lately. 🙁

  14. November 1, 2010 / 6:32 pm

    Oh I hope the day turned itself around! Thanks for talking today. 🙂

  15. November 1, 2010 / 7:17 pm

    He’s been on the verge of meltdown all day. It finally happened at tea time – he threw all his dinner on the floor and proceeded to scream, hit and headbutt me, so I put him upstairs. He’s calmed down enough now for me to put him to bed at least… I hope!
    I regularly talk about life with Max, sharing the highs and lows. He’s come on SO well in the last few months – I HAVE to shout it from the rooftops! 🙂

  16. November 1, 2010 / 10:45 pm

    I think you’re absolutely right to shout it from the rooftops. How does not logging onto facebook or twitter help? As you say, log in but in a different language so you can only understand part of what’s going on and not communicate your own wants, needs and issues clearly. Surely that would give you far more understanding and empathy.

    I hope the meltdown has calmed now. Hugs, lovely, hugs.

    xxx

  17. November 2, 2010 / 12:24 am

    I definitely think the shouting out will have helped. Who knows, maybe it was part of the whole idea to begin with!
    Max is tuckered out from playgroup this morning. He did really well, other than a small meltdown for about 20 minutes cause he wasn’t allowed any more cake, LOL! Luckily the other mums there know that it’s just the way he is, and urged me to stay and see if he calmed down instead of leaving. I’m glad they did, as we both had a blast!

  18. November 2, 2010 / 12:25 am

    Seems to be so far… thanks sweety. Hope your tuesday wasn’t too bad! xx

  19. November 2, 2010 / 12:54 am

    Despite Max’s busy/meltdown day, you certainly seem to have great spirits. I applaud you. And I totally get your point about being on Facebook and Twitter to spread the word. Brilliant!

  20. November 2, 2010 / 8:24 am

    Hoping he’s having a better day today. xxx

  21. November 2, 2010 / 9:03 am

    I hope Max is having a better day today, but it was a great day yesterday! I could not understand the idea of a communications shutdown, because an absence of something is so much harder to notice – I noticed that a couple of friends were not ‘around’, but I knew why. To be out there shouting about autism is far more likely to raise awareness. I hope it did 🙂

  22. November 2, 2010 / 1:24 pm

    Thanks Sandra! Despite Max’s verge-of-a-meltdown day, it’s ten times better than when he would have anywhere between 4-8 of them per DAY, so I’m counting my blessings. 🙂

  23. November 3, 2010 / 9:21 pm

    OOh I hate meltdowny days, hope your day got better. J hates walking too but has refused to use a pushchair since he was about 18 months old loves bouncing though sometimes we jump or skip (both really just bouncing) instead of walking 🙂

  24. November 4, 2010 / 10:36 am

    Thanks Jo, it ended up with a big meltdown and early bedtime, but he’s been a bit better since. Think it was just cause we’d been at a halloween party the day before and he had a lot to process from it. He LOVED it at the time though! 🙂

  25. November 6, 2010 / 3:24 pm

    Totally agree. A communication shutdown just when people are paying attention seems bonkers.
    Talking, talking, talking is the key, it has to be.

  26. November 7, 2010 / 11:20 am

    Thanks Ellen! Luckily there were just as many, if not more, people shouting from the rooftops about it as there were shutting down for the day. 🙂

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