Wednesday, October 13, 2010


Having a child who is profoundly autistic can be exhausting at the best of times but when you the carer are also unwell it can become a nightmare.
Beauty is a very demanding child and when she wants something or wants to do something, she cannot understand WHY you say no.
How to convince a child that she cannot have six packets of GREEN CRISPS or why she cannot have half a dozen bars of DAIRY MILK CHOCOLATE.
And then the only answer is to hide them and to re-hide them because she will find them.......over and over!
I have found over the last year as my health has got worse is that the best way for me to deal with the situation is to deal with her the way that I did when she was a new baby.
And that is......when she sleeps, I sleep.
Having Fibromyalgia,Spinal Arthritis,R Arthritis, under active thyroid, anaemia or whatever the heck else is meant to be wrong with my body,means that I am tired ALL the time and so the only way to cope with Beauty is to sleep when she is asleep or sleep when she is in school.
At the moment I can barely write this and keep my eyes open and as soon as I have finished I shall be going back to sleep.
Most days I manage to cope but the days when she is awake from 2 or 3 am and does not go back to sleep then I feel as if I am dying.
I feel like a Zombie.
But on a NORMAL day I like to get out of bed at least an hour before Beauty so the meds have a chance to kick in.
When I get her out of bed she goes straight in the bath and most days I attempt to clean the bath room whilst she is lying in the tub but usually all that I manage is to sit on the toilet with my head resting on my arms on the sink.
However, today I did manage a not bad clean of the bathroom.
I think Kim and Aggie would find it acceptable(but it is really tough if they don't!).
And I dress her and then she comes down and eats breakfast and then onto the computer until it is time for school.
Whilst this is happening I TIDY through and put the dishes and laundry on to wash before I dress myself for the school run.
This sounds so efficient but it just isn't!
It is all so exhausting and I get so little done!
I am always tidying but never cleaning because I just have no energy but that is all sorted now thank goodness.
On Friday a cleaner comes for 2 hours from an agency to do the cleaning I never manage.I am so thrilled that at last I have a cleaner.
And then I spend the day recovering by sleeping so I have the energy for Beauty when she gets home from school.
Evening is when I seem to have most energy and get most tidying done and then when Beauty sleeps again...I also sleep!
If only I didn't have to sleep so much and had some more energy.
I think I might finish this blog post later as I just nodded off and my nose hit the computer screen!


Steve said...

Good grief. I shall never moan about feeling tired again! Get thee to bed, woman, and rest!

dori said...

Hi Allyson - it's been a while but I did re-add your blog and also am retagging and reading all my posts - I've gotten from 2003 to 2007 LOL. You posted a lot on my blog back then and I appreciated your friendship! I hope you are okay - I see you have not posted here for a while. Are you on facebook? Merry Christmas!

Unknown said...

Get some resxt. My son is not severely autistic but he has had his sleep issues. I feel for you. Thankfully we got my son on a good sleep schedule because I didn't sleep for three years. umm... not straigt but not good sleep and well I was cranky.




An Irish Blessing

(A Blessing from St. Patrick)
May the road rise to meet you,

May the wind be always at your back,

May the sun shine warm upon your face,

May the rains fall soft upon your fields,

And, until we meet again,

May God hold you in the hollow of His hand.