Tuesday, March 6, 2012

For just ONE day (try autism)

The rattle of the letter box in the mornings brings dread to so many households right now, and you have a child with special needs, and especially if you have a child with autism, it could bring the bad news that the Department of Social Protection wants to review whether or not your child is still entitled to Domiciliary Care Allowance, the only payment given to many families in Ireland in recognition of the extra costs of rearing a child with special needs. Many families have had this allowance cut off, and as well as the financial loss, it shows a complete lack of understanding of the needs of children with autism.

And one Mum in this position has this challenge for the faceless decision-makers in the Department of Social Protection...



For just ONE day, say what you want to say. Don’t think of the feelings of others, just say the first thing that comes into your head. Do things just for yourself, don’t interact with those around you even if what you are doing is affecting them, who cares, if they don’t like it they will just have to adjust. 


For just ONE day, don’t reciprocate conversations, don’t make eye contact with those talking to you, stand just that little bit too close to the person talking and, every now and then, when they are in mid- sentence turn and walk away, or better still, reciprocate with a totally different subject. 


For just ONE day, talk about only what interests you. When someone asks you a question, talk only of the subject you have chosen to talk about that day, even when they tell you they are not interested, talk only about that subject like they are not even in the room, just a monologue you need to get off your chest. 


For just ONE day, when you get frustrated, no matter where you are, be it in the supermarket, the bank or in the middle of the cinema watching your favourite movie, when you get frustrated just let it out, it’s good to vent. 


For just ONE day, when you are asked to complete a task in work that you are not particularly happy about, fall to the floor and scream, keep it up for at least twenty minutes and every time you think of it for the rest of the day have a little cry. 


For just ONE day turn your lights up as high as they will go, turn your radio up as high as it will go, turn the phones up as high as they will go, in fact turn every fan, fluorescent light up and open every window and let all the noise fill the office and then try and complete your daily tasks with calm serenity and high expectations. 


For just ONE day, stick tin foil on the seams of your clothes, and sand paper to the inside of your shirt, and put pebbles in your shoes, and walk around as normal, and then throughout your day, as they scratch and itch and you just can’t take any more, just take them off, things feel much better that way. 


I am asking you to do these things for just ONE day and see just how you get on with those around you, see how people see you, hear what people say to each other about you, see just how accepting people are when it comes to dealing with you and THEN and only THEN come and tell me that my child does not need any extra care or attention. When this is done, then I will accept what you say.


Reprinted with the author's permission.

19 comments:

  1. Such powerful stuff from that Mum - amazing.

    I really hope that the stuffed up suit who makes decisions for all these families makes the RIGHT decision xx

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  2. Anyone who has spent the day with an child who has an ASD could relate to this. How many people who make the decisions about funding have spent 24 hours or more alone with an Autistic child, I wonder?

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  3. I would be happy for anyone to come and have a personal meeting with me to try understand our lives and why we need support. 24 hours would be a luxury, but even 1 hour face-to-face would be an improvement on the bureaucratic forms sent to make our lives even more difficult. So well put, thanks.

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  4. This is so true ...
    I can not even see myself do this, do as he does.
    It would be just too hard.

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  5. A child with ASD and sensory needs would have spent 24 hrs. in hell in those conditions. How could funding possibly be a question?

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  6. Way to go, to the mum who wrote this post. I hope someone is listening....

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  7. First of all thank you to everyone who has commented on this absolutely amazing piece of writing and shared it. I happen to believe that it is one of the best explanations of autism that I have ever read and I will let the author know how many people have appreciated her words.

    @SAHMlovingit - Me too xx

    @LUCEWOMAN - none, I'd say

    @Steph - The forms are a complete nightmare.

    @Þorgerður - That's it, others cannot imagine this I don't think

    @Lora - That's what the all the autie mums in ireland don't understand

    @Di - Me too

    @Tania - Thank you :)

    @lyndylou - Isn't she?

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  8. Brilliant. Especially the bits about the sandpaper and the radio. And also - "if someone asks you a question stick your face as close to theirs as you can and make a high-pitch noise".

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  9. @Truf - Isn't it. Am so delighted that the Irish Examiner has included it in an article today: I can't think of a better way to raise awareness.

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  10. That is a great piece of writing. Do you think that mother would mind me quoting from it for my assignment? I'd love to be able to reference her.

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  11. @Lisa S - I'm sure it would be fine to use as it was subsequently printed in the Irish Examiner, but I will ask her as well x

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  12. That's a really powerful piece of writing, it's so disappointing that funding is even considered being cut when it comes to the welfare of children, particularly children with special needs. It's out job as a society to protect our children, not just the job of the parents.

    I hope those that need to listen to accounts like these do so, and soon.

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  13. @Lady Grey - I agree completely - I've always thought that children were part of society and not just the responsibiliy/property of their parents

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  14. This was really powerful. wow. Thanks for sharing it.

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  15. @kathleen - wow sums it up really doesn't it x

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  16. This is a great post, really enjoyed it. I have had many run-ins with those kind of faceless decision-makers. I really annoys me when I think of the people who have a twitch in their back who seem to have no problems getting a car, holiday and everything else while a child in obvious circumstances has to go through these bureaucratic loops to get anything, as well as having the additional anxiety that this brings. I'm off... I've started... Good luck!

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  17. @Idiosyncratic Dad - Thanks so much for visiting and commenting, this is a great post and I was really honoured when the author said I could publish her words. They have since been published in a national newspaper and are now being put on video.

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