Saturday, June 9, 2012

This is what respite means to me

What does respite mean to me?

...hours of free time as my other children can dress, feed, toilet and move themselves.

...meals whenever, wherever.

...no need to plan the day around meals and toileting.

...going to the beach, or the hills, or the park on the bikes, or up steps, or over stiles, or through woods.

...being able to say "In the car now, kids", and they can do it themselves.  In a few seconds.

...going to the cinema without paying a baby sitter.

...when the children are asleep, they're asleep. Well mostly, unless there's night frights or sickness or late night partying. That's my teenager you understand. But no 'accidents' at 11, or position changes at 3.

That's when my disabled daughter Smiley is in respite.

...remembering all the things my son can do but won't (see above).

...a break from the endless monologue about the latest game.

...cooking proper food and everyone eating it.

...going shopping, or coffee and cakes, with my girls and other friends.

...not having to preplan everything I say.

...not having to prepare a strategy for everything from dressing to homework to bedtime.

...not having to check every room for moths, spiders, flies and then remove every trace.

...not having to accompany and stay with him every time he goes upstairs.

That's when aspie boy is in respite (well at his Dad's).

I love all my kids, but sometimes it's good to get a break.

I can breathe.

It means I get the chance to be me.  Just for a while.

And the reason that I wrote this is because respite is under threat.  For all carers.  Many of whom need it far more than me.  It seems that the Irish Government may stop funding respite, so that families will have to pay for it.  Not all families will be able to, leaving them heading for breaking point, squeezed between funding and service cuts.  Respite helps families to keep going.  To keep caring.  It is vital.  

Respite. Recharge. Relax. Rethink. Return, refreshed and ready.

25 comments:

  1. This is one of the most true and brilliant blog posts I have ever read. FACT. x

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  2. It's one of the cruelest cuts being talked about.
    The families with special needs are an easy target, and the government should hang their heads in shame for picking on them.
    I hope to god this doesn't go ahead. While it won't affect me as I don't need respite. I know the detrimental effect it will have on you, and families like yours.
    Is there a campagain yet started to try fight this nonsense?

    Aud x

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  3. @Lynsey S - Thank you seems a bit inadequate, really appreciate this comment Lynsey x

    @aud - Thanks so much for commenting Aud. I'm not aware of any campaign yet: those families who really need respite may find it hard to mount a campaign x

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  4. How awful. Children will ultimately suffer because their parents won't be able to cope.
    Makes me shiver to think what might happen if parents do reach breaking point - with no-one around to help.
    WHY are the most important services always cut?

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  5. I have 2 children with special needs only one receives respite which in very grateful for more for him as his sister need so much more care and he is often left out not because i don't look after him but she take.s up so much more time any letters or signatures you need i will do what i can

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  6. I have 2 children with special needs only one receives respite which in very grateful for more for him as his sister need so much more care and he is often left out not because i don't look after him but she take.s up so much more time any letters or signatures you need i will do what i can

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  7. @Donna - The Government is desperate to make cuts as it believes that is the only way that Ireland will continue to be funded. And whoever shouts the loudest will get the smallest cuts.

    @pam - Thank you for your comments and I know how hard it can be to balance the needs of two children with special needs. If I hear about a campaign I will post up details here.

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  8. When will the Government realise that these respite breaks enable families to carry on? They, along with the MENCAP Playscheme during the summer holidays, were lifesavers for us when my 3 were little. I'd like to 2nd Aud's great comment & all the others on here. x

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  9. I so hear you about having a break! I know that you love your kids just as much as I love mine, but sometimes, just sometimes, to be our own person without any responsibilities is magic. May you have some respite soon. It is terribly sad that the Government are cutting back/stopping their funding. I feel very sorry for those families who really need it. :(

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  10. Brilliant post. I have actually just written a post too today about what it means to have a break from caring. Just back from a lovely night away courtesy of my mother in law. We've been turned down for respite twice now!

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  11. It is so scary what Governments are doing in the name of austerity. I have similar fears about the UK government. They are cutting services and benefits to sick and disabled people because generally these are the people who are least able to shout about it and protest.

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  12. Kite flying is shameful. Feckers

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  13. It looks everywhere is the same... The Goverments cut the 'costs' there where is the most needed, yet as people don't understand why, the other just simply accept it. And as we are 'smaller' group, we just don't have loud voice enough... Sadly...

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  15. We're soft(ish) targets. Shame on them XXX

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  16. @Jane Gregory - respite does indeed help families to keep going, I don't understand how Governments cannot see that x

    @The Bright Side of Life - I do get respite of a couple of nights a month for Smiley and I do now really appreciate it, even though there have been some issues! But some families could not keep going without it :(

    @jontybabe - sorry to hear that you have been 'turned down' for respite, even that phrase worries me!

    @violetsdiary - that's it, and all the time the rhetoric is about 'protecting the vulnerable'. It makes me want to throw stuff.

    @Grace App - it is alright.

    @Petra Rovere - well that's why I had to write something in support of those who need respite so badly.

    @Jean - Not that soft! xxx

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  17. wow respite sounds GOOD! But I bet you hardly get any even before the cuts :(

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  18. Love this! Funny but so honest, fantastic insight. Thank you xx

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  19. The world is becoming a very dark and scary place for our kiddies. What are we teaching the children when we target the vulnerable so relentlessly.

    I want to say that it's a fantastic post, but it isn't, because it should never have had to be written.

    It is however a fantastic Define 'Normal' bloghop entry, thanks for sharing x

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  20. And who could argue with one word you've said? Very well put and it be a shocking thing for this Government to do. Would say an awful lot about us as a society if we let this happen.

    xx Jazzy

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  21. I really hope that the government don't take away respite for those who currently receive it. Whilst I can't access it, I would hate for others to loose the chance to have a break. But I have to say, respite sounds fabulous. Deb x

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  22. @Steph - to be fair I only reluctantly started respite 3 years ago when Smiley was 12. And I've never looked for very much, but I do enjoy the break.

    @Sparklymess - well so long as it's not dreary!

    @Renata - I love the define normal idea and every week I forget to put the linky bits at the bottom of the post, am really sorry, one week I will remember, I promise!

    @jazzygal - yes, I didn't write it for me, but for those families that I know could not cope without respite xx

    @Deb - I really hope that you are able to get respite at some point soon x

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  23. All of the above comments are so accurate and valid and true. The reason that special needs parents are being targeted is because mostly we use every ounce of energy that we have trying to get through the day. Everything is a struggle, everything is a battle, everything takes thought and effort and energy. Physical energy, emotional energy, spiritual energy. We fight for everything. For help for our children and help for ourselves. For acceptance for our children and ourselves and our families. For equal opportunities and access in education. For funding, for respite for living. Is it any wonder that by the time we get through a day with our kids that we can't mount massive campaigns to fight governments and institutions. Do we not have enough to fight for already? Why not give us a break and help us instead of punishing our families even further. We don't want to fight. We want to live and use our energy for helping our children to live as best they can in this society.

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  24. I would be the first in line to join any lobby group campining on behalf of respite. For me it mean just a lil time to collect my thoughts and just let go for a moment all the worries and cares that go with having to spend 24/7 with a kid with special needs

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  25. @Carrie - Thank you for taking the time to post such a thoughful comment and I agree with everything you say. I just hope that others also read these comments and take note x

    @parfaitw - If I hear of anything I will post it up I promise, and I really hope that your respite continues x

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