Saturday, August 14, 2010

It's A Cruel, Cruel Summer

I always knew living with autism was hard but only, it would seem, in an academic kind of way.

                                             (I hasten to add that these are not my arms)

Over the years we've plodded on through the tiresomeness of appointments, struggled to bear the weight of our grief at having an autistic child and fought to master the principles behind the therapies we have to administer.
Having an autie kid brings a whole new level to the meaning of exhausted.
But we found our reserves, drank lots of coffee (and maybe a little merlot) and got on with it.

You hit your stride when you have a kid with special needs and, once you've warmed up, you can comfortably lope along for many, many miles.

We have jogged along many pretty pleasant stretches where we thought "hey, this autism thing is OK".
I can't speak for Bob's Dad, but I have even indulged in a small amount of self-satisfaction that I could do this.
While I wouldn't go so far as to say that I became big-headed about coping with being an autie parent, my hats were starting to grow uncomfortably tight, and there was talk of widening the doors to allow the safe passage of my giant ego.

All it took was for school and services to be subtracted from our happy equation, for the brown stuff to hit the fan.

This is a difficult summer.
Bob is going to sleep late, waking early (sometimes horribly early, like 3am) and seems to be focusing all his energies on developing ingenious escape plans.
There are tantrums that could be measured on the Richter scale, exploratory play that would be better described as wilful destruction and an exhausting cycle of never, ever being able to let your guard down.
I miss school.

We also have to factor in the fact that Bob is growing bigger, stronger and ever more clever.
So it seems we will have to change our game plan for next year if we want to continue our marathon without buckling at the knees.

Complacency with autism can lead to unforeseen meltdown, while our brains have shifted into neutral.
Next Summer we will know to change our running shoes and to switch gears out of our comfort zones.


  1. This is my first time without tuition since HRH was diagnosed, I MISS IT, the days and month are VERY long. I hear ya babe:) Jen

  2. I hate august! I spend the whole year dreading it. Amazingly, this one hasn't been too awful! I find the hardest thing is being practically housebound - I really miss my coffee and chats with my autie mums (and dad!). roll on September!

  3. I'm having an interesting summer as well and trying to write about it, wish I could express it as well as you Jean xx

  4. Thats a lovely read, and the t-shirt has us both in fits here as my dear hubby is sporting a fab bite mark courtesy of our bundle of sensory joy!!! middle of august tomorrow (i think!) half way there and we all still alive, t god!!!!

  5. Yeah with you on the whole August thing.. we went away in July so it didn't seem to matter so much but the lack of routine and late nights/early mornings are taking their toll on us all.. NEED another holiday (no kids this time)

  6. @ Jen, two and a half weeks...two and a half weeks...
    @ Taz, that's great to hear. I am so looking forward to Sept and coffee tho
    @ Blue Sky, you're certainly a busy bee this summer honey!
    @ Anon, poor hubby...ouch
    @ Our Sue, a holiday sounds excellent

  7. Hi Jen, that sounds tough, like yourself I can cope with most things execept the early starts followed by late nights, we find things settle down in autumn too. Hugs to you xx

  8. Fancy an overnight chez moi? Merlot and coffee so strong that you can trot several mice on it. Autie child optional :-)

  9. Sorry to hear it's a tough holiday Jean. I hope each year will get easier and easier. In the meantime keep topping up the coffee and Merlot and repeating that phrase...Two and a half weeks ;-)

    xx Jazzy

  10. @ Brigid, lovely, as ever, to hear from you
    @ Alison, may I please move in permanently (or until the coffee/merlot runs out)??? I'll take the mice
    @ Jazzy, we are getting there

  11. Suprisingly for us this summer hasn't been too bad but I will still be delighted to pack them off to school and breathe a long awaited sigh of relief that things are back to normal. Also the fact that I have hatched a escape plan for a whole week when they go back to school is keeping me smiling, I have even mentally chosen my holiday outfits and visualised putting them in the suitcase such is my excitement lol. Great post as usual Jeannie. xxx

  12. @ Andra, that's so great to hear. Sounds like you're a lady on a mission (and an excellent example to us all!) XXX

  13. I'm so impressed at your wonderful attitude even though it's tough for you at the moment.
    I am sure that because of you, everything will fall into place.
    I loved reading this post :)

  14. Judging by the comments above, and by our crazy summer, you are not alone. My son had no school for 4 weeks, was tantrumming (new word), stimming, being physically rough, sleeping less, and just downright defiant. School starts in 2 weeks and I can't wait!

  15. @ Fiona, thanks chick. We're coping, but Sept can't come quick enough
    @ Mommy, I seem to have plenty of company alright! I think "tantrumming" is an excellent word

  16. Lovely post Jean written from the heart as usual. Won't be long now till school re-opens.

  17. @ Ruby, thanks for that. I know I shouldn't be wishing the summer away, but everyone is going to be so much happier in Sept XXX