Fantastical Highs and Aggravating Lows.

Autism certainly is a rollercoaster to live with.

You have the horrendous lows just before and during the diagnosis.

Then amazing highs when they actually look you in the eye, and smile.

There are times that you want to tear your hair out and ask “why US??”, and there are times when everything goes so smoothly you think “hey, this isn’t too bad after all!”.

Thing is, these highs and lows are often felt many many times in the one day. Hell, sometimes multiple times an hour!

You learn to appreciate the little things, like the firstborn child who tells you he loves you and that you’re the bestest mum in the world, even if it is just because he wants a cookie!

You find yourself learning more than you ever had, and know that you can handle a LOT more than you ever thought you could. Hell, you’re pretty much super woman!

You see your little one learning how to cope in our world, and picking up more and more as time goes on, and your heart just about bursts with pride when they finally understand pointing at three years one month and eight days old.

Thing is, just like with children in general, some of them are better in the mornings, some in the afternoons, some at bathtime, and so on. The reverse of this is true. I’m still not a morning person, but my dad has always been one to be up! and ready to face the day! quite early.

Night times are Max’s worst. The time of day I absolutely dread.

He’s usually a wee star during the day.

Yes he has a tantrum when he doesn’t get his own way, but it’s only a tantrum, a typical three year old thing, not the autism. Other than that, he’s generally a happy little chappie who’s, quite frankly, a joy to be around.

When it gets to bed time though, it’s like someone takes away my sweet cuddly little man and replaces him with a screaming kicking devil child.

He will carry on the Good Boy routine right up until I say goodnight and close the stairgate at his door, but as soon as it clicks shut, all hell breaks loose.

I’m actually surprised no one has come round thinking I’m beating up my child yet.

Thank god for living in a semi-detached!

He screams, he throws the heaviest things he can at the door and out of it.

He hits his brother when he (bless him) tries to cheer him up.

He throws every toy in the room onto the floor.

He’s broken his bed from bashing it with his feet.

He kicks the door repeatedly.

He screams.

And he screams.

Then he screams some more.

It doesn’t matter if he’s had a nap or not, the same thing happens.

Ever since he figured out how to climb out of his cot and I turned it into a bed, he’s been a nightmare.

One that won’t let me go to sleep till after 11pm some nights.

This evening he’s been screaming for two and a half hours.

I moved Zack into my bed and tucked him in there so he didn’t have to hear the screaming quite as loud.

It’s gone sort of quiet, but I know it’ll start up again at least once more before he completely exhausts himself into sleep.

And tomorrow we’ll start all over again, first with the highs of getting my lil guys snuggling up in bed with me, and ending in the lows of listening to endless screaming in the evening.

Thank god for my iPod and blogging to keep me at least partially sane, that’s all I’m sayin’!

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  1. November 30, 2010 / 12:28 am

    Yep, know all about that one. Some might say I’ve given up/given in but I usually lie beside Finian until he sleeps. Of course, 3/4 of the time I fall asleep beside him. The screaming is just so hard to take XXX

  2. November 30, 2010 / 12:59 am

    You are so right about the highs and lows and them happening multiple times hourly! Spot the autie mum 😀 Seriously though that night time routine is haaaaard. Could you ask one of the tutors at his playschool if they have any ideas? I will email you with something too, though I don’t think it will be much help, still, worth trying. Jen

  3. November 30, 2010 / 2:52 am

    ((((hugs)))) Big ones. Bedtime is awfully hard at the best of times.

  4. November 30, 2010 / 6:39 am

    ((hugs)) yep bedtimes are the worst time in our house too. Unfortunately we get those meltdowns in the day too for the last month or so J’s been having at least one a day (before bedtime). Once J is eventually quiet, (I don’t know if he’s actually asleep when he’s gone quiet) I can usually, nearly always expect him to wake me up at least once through the night and then he’s up between 5am and 6am to start his day and he just screams and shouts until I get up with him. *sigh* Ofcourse then there’s the highs, little things like watching him play with another child, listening to him talk about something that isn’t a baddie or computer game.
    You’re so right about the highs and lows of autism 🙂 xx

  5. November 30, 2010 / 8:14 am

    I can’t even imagine how exhausted you must be. I know how hard it is when my little one kicks off and it’s nowhere near as bad as that. Even more credit to you for achieving so many highs (and being able to see them!) in that sleep deprived state and coping on your own. Kudos

  6. November 30, 2010 / 9:19 am

    OH mate 🙁 I have some idea of what you’re going through because Jake used to stay awake all night before we had his ADHD diagnosed. I know it’s obvious to state that it’s the process of going to sleep that is troubling him but I think you’re doing the right thing by plugging yourself into your headphones (I envy anyone who can do that – I can’t, hubby can!).

    Have a quick (( hug )) x

  7. mummyowl
    November 30, 2010 / 1:15 pm

    I love you – Mum xxx

  8. November 30, 2010 / 3:38 pm

    Hi Marylin

    Lovely post, very well-put- all our kids are special and it’s amazing when they finally learn to do something they’ve tried so hard at!

    Sorry to hear about your bedtimes, but similar to Nicky, we had this problem for many years- the devil-child at bedtime, going on for hours. Lyla was eventually diagnosed with a deficiency of the sleep-hormone Melatonin by the paed and now she has a supplement of it from the doc and she is a different child. Might be something worth checking out?


  9. November 30, 2010 / 3:41 pm

    Thanks sweety. I have spoken to my PSHVT worker, but really the only option at that time was trying out a weighted blanket, and I know already that he doesn’t like that sort of pressure, so it’s a no. >_<

  10. November 30, 2010 / 3:41 pm

    Indeed it is. *hugs* right back atcha. 😉 x

  11. November 30, 2010 / 3:42 pm

    See, reading about your J just reminds me that I’m actually pretty lucky my Max sleeps through once he’s finally asleep. Silver linings must be found, eh?
    *hugs* xx

  12. November 30, 2010 / 3:43 pm

    Thanks sweety. I’ve gotta see the good bits or I think the men in white coats would probably have to come and take me away! lol 🙂 x

  13. November 30, 2010 / 3:43 pm

    Thanks sweety, I’ll have a wee nosey now. 🙂 x

  14. November 30, 2010 / 3:45 pm

    Cheers hun. Luckily he’s been a wee sweetheart today, even snuggled into bed with me this morning for a kiss! He’s such a lil charmer… just as well! hehe 😉

  15. November 30, 2010 / 3:46 pm

    I dont have any idea what you are going through, but as a child I slept for 4 hours a night and that was that. I believe that back then my mum got some medication to help me.

  16. November 30, 2010 / 3:46 pm

    It is, but I NEED time for myself in the evenings. It’s the only way I can function. Know what I mean? I wish I could sleep with Max, but as soon as he sees me there he just wants to play. >_<

  17. November 30, 2010 / 3:47 pm

    Thanks Mum, love you too. What would I do without you to talk to eh? x

  18. November 30, 2010 / 3:47 pm

    We turn the TV off half an hour before bedtime and switch out all the lights. We turn on a disco ball and himself finds it very soothing, really chills him out and feeds his sensory needs, gives him a fix without stimulating him. He finds it very relaxing. The disco ball costs about €22 so would be less in £. Not a hugely expensive mistake if it didn’t work………

  19. November 30, 2010 / 3:48 pm

    That is what I’m going to be asking about when we’re no longer snowed in and I can get Max to the doctor. I NEED to get something done. He screams himself into exhaustion, keeping his older brother awake as well as me. It’s not fun!

  20. November 30, 2010 / 3:49 pm

    I really do try to count my blessings, I am lucky that once Max does fall asleep that’s generally him for the night till about 7am on average. I’m going to have a chat with the doctor when we’re not snowed in anymore… hopefully she can help us out.

  21. November 30, 2010 / 4:07 pm

    Nighttime sounds really trying, but you convey your experiences so well. I’m glad blogging helps your sanity, I know the feeling 🙂

  22. November 30, 2010 / 5:51 pm

    I might just try that one… 🙂

  23. November 30, 2010 / 5:54 pm

    Oh it really does! By the time I’d finished writing this Max had just about finished screaming and I felt like a huge weight was lifted. A problem shared is a problem halved as they say eh? 🙂

  24. November 30, 2010 / 5:55 pm

    Blimey. That sounds hard. I’m glad you have highs to get you through the day. Big hugs.


  25. November 30, 2010 / 7:31 pm

    Just as well imo! HAVE to look for the good bits or it’d be far too depressing. That’s life imo!

  26. November 30, 2010 / 7:31 pm

    Thank you sweety! 🙂 x

  27. December 1, 2010 / 9:23 pm

    I don’t know how you cope with this, my aspie boy goes to bed reasonably well: all I have to cope with are early starts. Hope you manage to get something for him that works once the snow has cleared x

  28. Yorkshire Mum
    December 1, 2010 / 10:10 pm

    Wow, thanks for sharing this. So far, no autism in my house, but I can relate to the screaming and the tantrums. Today my eldest would not nap. She screamed for an hour which prevented my youngest from resting. We’ve all had a cold (no excuse), so were exhausted and I’m still feeding twice a night. This resulted in my handling the situation terribly! I took her arms firmly and screamed back! I’m so ashamed. She cried so much I thought she would vomit!
    Keep blogging, I find sometimes talking is the only thing that gets me through the bad days. 🙂

  29. December 1, 2010 / 10:48 pm

    Well, the plus side is that once he’s asleep that’s *usually* him for the night, and during the day he’s generally a sweetheart. All in all, we’re lucky Max’s asd is milder than many, which is something to be thankful for! 🙂 x

  30. December 1, 2010 / 10:53 pm

    Oh sweety, it’s completely normal to occasionally freak out at them. I think it does littlies good to know that sometimes mummy and daddy can only take so much, and also that they can be in the wrong at times. (((hugs))) I hope you feel better soon!
    Also, why do I not see a blog for you?? 😛

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