In the real world, disabled children and their carers are at breaking point

Reprinted with permission from one of my friends over on the Spectrum Facebook page.

Just off phone to twins’ social worker.

I’ve told her if more help does not come I’m going public with our story.

I  also said if they refuse more help I want an actual sit down with all involved including government ministers and hse bodies with my children’s services and professionals and if its refused I will go through the media to request that sit down again and I will be like a pit bull until I get it.

I’m done being nice and I’m done being pushed around. 

We are so severely sleep deprived we can’t even be parents to our children any more, we are like auto pilot robots who are starting to malfunction and no child deserves that.

Spectrum

In a house of 5 children, 4 children with needs, 2 do not sleep, 2 are on serious meds, 3 are in nappies, 3 have no independent skills, 3 are non verbal, 2 have pica, one is hypoglycemic, one has severe social anxiety, 2 are aggressive, 2 smear shit, 2 self harm, 4 suffer meltdowns, 3 have no stranger danger and no awareness of any danger around them, 3 can’t dress them selves, 3 are extremely noise sensitive, 3 can not be in each others company for safety reasons, 3 need one to one supervision at all times.

I could go on but I’m depressing myself.

Another family that needs help urgently, but is being ignored. Right now it seems the only way to get help is to bare your circumstances in public and beg for help, and no-one likes doing that. You lose your privacy, you leave yourself and your family open to judgement, and sometimes your children still don’t get what they need.

So please can I ask again that disabled people, carers, siblings, friends and the organisations that represent us, work together to help families like this one, and all the other people I know who need help now.

 

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14 thoughts on “In the real world, disabled children and their carers are at breaking point

  1. I’m reading every one of your posts but sometimes I just don’t know what to say. Sending you and all cares love and best wishes for a fairer future. xxxx

    Liked by 1 person

  2. I’m just sending love. I’m so sorry that you’re in the position you’re in. We’re all very private people and no one likes to share personal information and it’s so upsetting that we do. I hope you get the help you need xx

    Liked by 1 person

      1. It shouldn’t have had to be like this, but unfortunately to get the help you need, you have to shout and keep on shouting, until something finally is done!!
        Life and parenting should not be like this. I bet anyone of them could not cope for 10 seconds in your shoes, let alone a mile in them.
        I have 2 grandchildren with a diagnosis of autism, and 1 that should be.
        It is a horrendous time for them too! Countless hours of tireless battles.
        My thoughts and with you.
        Take care
        Xx

        Liked by 1 person

  3. It just sucks doesn’t it. I begged for help when I was at breaking point not knowing what to do for my child and then just turned it against me until I left it alone. I hope your friend is getting some support since this was written.

    Liked by 1 person

    1. I’ve heard that about the UK, as far as I know it’s not like that in Ireland: it seems those who shout loudest do get services here.

      So sorry that you reached breaking point xx

      Like

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