Work?

“You can go back to work now your girl goes to school.”
A sentance more than one person has said to me this week.
I don’t like it.
I don’t like the assumption that now my girl is going to school, that everything has magically changed.
The truth is; my girl has not changed, she still has all of the additional needs that she had when she refused school.
Yes, it is much easier for us now she has been going, but it is not a miracle cure.

I haven’t worked for a few years now.
I haven’t been able to.
With the unpredictability of Autism, my girls school refusal, her physical disabilities, fluctuating pain and mobility issues, I just do not have the time to commit.
It is not that I don’t want to work.
It is not that I don’t need to work.
I feel so guilty that I have to rely on my husband to work long hours just to pay our bills.

My girl is at school now, all day.
But…..
…what about days when she has to attend one of her many appointments with her doctors, surgeons, specialists, OT, physios?
What about the days where her pain is so bad that she can’t even get down the stairs and is unable to leave the house?
What about the days her jaw dislocates 10 times before she is due to leave and she is unable to eat?
What about the nights when she has not had a single minute of sleep and we are both exhausted?
What about the days where meltdowns are constant, anger, anxiety and frustration preventing her from leading a normal life?
What about days where her extreme exhaustion leave her so tired her speech is slurred?
What about if she decides that actually, she doesn’t want to go to school anymore?
The list could go on.
So many reasons why I need to be avaliable to my girl at all times.

I would love to work.
I just couldn’t.
I am permanently exhausted, stressed and anxious.
I spend my days waiting for something to happen, for there to be somewhere I need to run.

I take my hat off to all the special needs parents who work.
One day that will be me again.
Not yet though. Not when my girl still needs me.

……and to be honest, who would employ a tired, grumpy, Autism obsessed, unreliable me anyway?!!

I don’t want to live my life according to expectations, I am quite happy wondering down my neverending spiral path.

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One thought on “Work?

  1. That’s exactly how I feel – and if ever I think I might find the energy to start looking for work, everything kicks off again and I’m back on my knees, glad I didn’t start I job I would then have to leave. We have to give up on the guilt I think, but I haven’t managed it yet.

    Like

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