Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Thinking about the unthinkable

with 3 comments

Today I read on the always amazing A Diary of a Mom blog about yet another tragic murder of two children with autism by their mother. Jess writes perfectly about the horror of this act, the grief we feel, and how unthinkable it is.
And yet, I feel myself thinking about it a lot. If I haven’t made this clear in my previous posts, let me say right now how lucky I am. Lucky that we have hope for the future, lucky that we have more good days than bad days, lucky that even on those bad days, I have amazing support from Spectrummy Daddy, and our family and friends.
I’ve written before about the cost of having a child on the autism spectrum, but there are other costs too. The challenges can bring conflict to a marriage, the stress can damage a caregiver’s health, careers are put to an end, with the sense of fulfillment they often bring. I’m very fortunate so far, but I’ve seen all of this.
Long before I was a spectrummy mummy, I was a volunteer carer, along with my parents. I worked with adults (amazingly none of which were on the autism spectrum, or at least diagnosed as such) and my role was to give them a day out of their week to look forward to. We’d do whatever was enjoyable for the client- be that a day trip to the seaside, a restaurant for lunch, a game of bingo, or just sitting around chatting over tea. There was a lot of tea.
My undisclosed job, however, was to bring a much needed break to the individuals and families taking care the rest of the week.  Sometimes a spouse or a guardian would tell me that they just couldn’t wait a whole week. That they lived for that one day off, and I would get a sense of their desperation and hopelessness. It was a glimpse of the darker side of taking care of another individual all the time. It was no problem, I’d call up my support worker, and go from one day, to two, three, even five. Whatever was needed. My parents would offer up their home for a week or two, a real break, both for the individual and their family. Just to make sure the caregiver never got too close to the edge. So they could carry on with love, and doing what needed to be done. After all, it was cheaper than placing somebody in an institution, as far as the local government was concerned.
Even though this was a relatively small amount of my time, people would tell me they couldn’t do what we did. I would think even then, about how life doesn’t always offer you a choice. That your healthy spouse, parent, or child may not always be that way.
Though people don’t like to do so, it is acceptable to place an aging parent in a rest home. It is less so for a parent to do the same with their child. Yet the challenges can be very much the same, the supports just as limited. And those caregivers who needed a break, did they know how desperate they sounded? Would a break prevent a tragedy? Would support have prevented that mother from such a heinous act and saved the precious lives of those children?
Sometimes you don’t know how close you are to the edge.  Sometimes you don’t know you need help. This tragedy was unthinkable, but we really need to think about it. All of us.

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Written by Spectrummy Mummy

July 23, 2010 at 9:14 am

Posted in autism

Tagged with , , , , , , ,

3 Responses

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  1. want to book a day at camp emma for your monkeys?

    emma

    July 23, 2010 at 2:03 pm

  2. First, thank you for your kind words. This is beautifully put and thought-provoking indeed.

    We need to be there for one another. No one can do it all alone. No one.

    jess

    July 23, 2010 at 4:02 pm

  3. One can only imagine the severe strain this mother has been through and what pushed her over the edge. it’s hard not to be judgmental, sorry mom. I wonder if the father was in denial about the childrens’ issues and left the mom defenseless as she dealt with it alone all the time. I won’t be surprised if he will plead to the courts that she is mentally ill. Same old, same old… I wrote something interesting on my blog Scott and Ashley Jackson, Preventing Divorce by Tackling Autism

    autism custody battles

    July 23, 2010 at 8:00 pm


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