Friday, December 7, 2012

Life caring for a severely disabled teenager

Yes I'm having a moan.  I'm hurt.  Once again the Irish Government has targeted the most vulnerable in the Budget.  Last year it was my daughter, this year it's me.  Okay so I'm not that vulnerable, but plenty of carers are, and hearing grown adults crying on national radio has really upset me today.

A 19% cut in the respite grant.

That's what has people in tears.

But for them too I don't think it's all about the money.  It's also about devaluing what we do as carers.  It's about what society really thinks about children, teenager and adults with disabilities and special needs.

It's like their needs are not so special after all.

My life is pretty good in ways, but let me give you a little glimpse into my world...

When you get the Sunday papers you use the Travel Section to light the fire.  You're not going to need it.

You're out and your child need the toilet/needs changing.  So you go home.  The disabled toilets are not big enough/do not have hoists.

You can't have a hangover, you can't be sick.  Mishandle her and you or she could get seriously hurt.  I am very good friends with my physiotherapist.

If you want to wash your hair you have to make sure that your child is not hungry or thirsty, that she's clean and dry, comfortable and has something to entertain her.  Then you can leave her alone for 10 minutes, but within earshot.

Wrestling your child into a full set of ski wear for a trip to town on a day in December.  It's the only way to keep her warm.  Lots of heat needed at home too.  Still feet get cold fast.

Feeding your child mashed up chips or chocolate cake, because she cannot chew and nothing else is available.  Of course you could have stayed at home, but she needs to go on outings with other kids.

You go to funerals and the cinema armed with an iPad, headphones, chocolate buttons and lots of drinks.  And even then you may need to leave half way through when she laughs at the wrong moment.

When people are nice to your daughter and you try not to imagine them as potential babysitters.  You're always looking out for potential babysitters, after all, you're going to need them forever.

Your whole life revolves around her needs...well it would if you didn't have other children too..

Sometimes the whole family needs a break.

Respite.  Carers need it.

28 comments:

  1. Oh no, 19 percent is horrific. I am so sorry. If I was there I would definitely come and babysit, for free. xx

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    1. Aww, thanks xx It was hearing grown people crying on the radio that made me write this. Just so desperate :(

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  2. I didn't cry. I was on Newstalk and I didn't cry. I almost did but I didn't because I was thinking of you, of all the Lone Parents I know who have it much harder than me. I was thinking FFS, we can't let them past the gates of making cuts to Carers because half rate carers will be next. So I got your back xx

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    1. Lisa you support us all, we always remember that and I know you need support too. Thank you xx

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    1. I'm sorry, it's been an emotional couple of days

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  4. i have 4 children and my youngest is 19 months and has a rare life threatening disorder which caused brain damage and he is disabled we have bought all of his equipment and my husband works so i am on my own with the kids all the time as his holidays from work as used for trips to the hospital as these are a week long every 3 months or less and outpatients appointments (all in dublin we live in Kerry )he also has to take unpaid leave constantly so this said and the 17000 we have spent this year on his equipment leaves us in a very deep hole of debt that we cant climb out of we get no help at all and Liam has serious medical needs on top of his disability i had to be trained in tube feeding he is on a special diet if he gets too much protein it can cause brain damage coma or death a minor illness can do the same as can a minimal bump to the head. i do not go anywhere my other boys dont go to anything (bar) school due to risk of illness and this is now our life my son is beautiful and intellectually perfect but and i also think the system is overloaded with people who take advantage affecting everything from the financial side to the therapies and sna'a ect we all know there are people who use the system and this is what screws it up for the people who really need the services and financial aids !!!

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    1. Thank you for your comment and I do understand, my daughter also had complex medical needs as a baby - including tube feeding - though they have mostly gone now, but I don't understand why you are not getting help with equipment, I've never heard of that before. I'd be very interested to find out what you were told when you went looking for funding. I hope that things improve for you soon x

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  5. You go girl. Keep telling your story, sending your message. This is too important to take lying down. Looking forward to sharing. Lorx

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  6. It's shocking. Just shocking. If only the othersknew, or even cared about, what families like yours go through. Never give up trying to make them hear. You are so strong x

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    1. Oh I don't feel particularly strong, but yes I will keep on trying to raise awareness :)

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  7. Just can't believe --- 19%?!? This is way too much. Well, anything is too much I say.
    I'm lucky that Patrik doesn't need any equipment, but all the funding for his therapies goes out of our pocket - although paying health insurance every month from our paychecks - and not little - just because here we don't have any medical recognised treatment for Autism - except for ABA... If we wouldn't both work, I don't know how we would managed for so long as we did. In September we had to cut down his therapy with our RDI consultant as we couldn't afford it anymore.
    It was somewhat heart breaking, but... as taught as child never tell loud how hard it is... I still don't do that --- often... Perhaps this is wrong... We should be telling this out loud more often.

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    1. I have paid for private therapy for both of my kids at different times and bought plenty of stuff for them too, but a lot has been provided by the state. The problem is that the respite grant has become part of the income for many family carers and a cut that large is just unimaginable especially as so many other costs are increasing. I hope that you able to afford more therapy for P soon xx

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  8. I'm so sorry. All I can think of to do to help is to RT this post. Lots of love. xxx

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  9. That budget cut sickened me to my stomach. As you know form my online postings that day I avoided listening to the budget, I simply couldn't face it. But I heard about that cut early on. Shocking. The BIGGEST budget cut for the most vulnerable. My fear is that if they back track they'll take it off carer's allowance or DCA instead.

    You know what really annoys me? I cannot help bot draw a straight mathematical line between taking €3.5 billion out of the economy in December, then paying €3.8 billion to bondholders in March.

    Society does NOT matter to this (or ANY Irish) Government, to Germany, the Troika or the banks....

    xx (a disillusioned) Jazzy

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    1. It was shocking in so many ways: the fact that the Government were picking on vulnerable carers, many of whom are living close to the poverty line already and then the size of the cut too.. unbelievavle xx

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  10. So, so unfair :( I don't know too much about political and economic issues in Ireland, but it seems that it is the same as in the UK with the most vulnerable in society suffering and paying beyond their fair share. It's politically amoral, but the human impact must be so devastating. I really feel for you with this unfair cut x

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    1. It's not even me, I'll manage, I'm upset on behalf of those who won't and also at the callous way that the Government is targetting people who are so vulnerable x

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  11. Yes,this is so so very unfair. And morally un-justifiable. How can anyone support this and sleep at night?

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  12. You're incredible and so is your daughter. I can't begin to imagine how hard it is but I'm angry on your behalf - and on behalf of the others being hit by these cuts. I value what you do and I'm sure your daughter does too.

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  13. It makes me so ashamed to be Irish that any Irish Government would think this could be a good idea.....how utterly depressing... But you are such a positive force in our world.....what a wonderful voice you have and how brilliantly you use it...X

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    1. Eeek, I've lost my voice right now, hope I find it again soon x

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  14. I could not figure out how to comment on your newest post
    Maybe you disabled it ?
    Anyway I just wanted to send you a mega mega mega hug
    Sending you loads and loads of love and hugs

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