Carer’s Week| My Radio Interview

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Carer’s Week| My Radio Interview

13 Comments on “Carer’s Week| My Radio Interview

  1. Ali what an amazing interview! Good job. πŸ™‚ I loved that you felt that you could be honest about the challenges you face while not just talking about, but showing your love for Carys, and how much she gives to you and your family. You have great strength and endurance, that as you said so beautifully everyone has within them even if it’s hard to find. Those were some tough questions to answer and I think you handled them really well. πŸ™‚ I was wondering, when the interviewer asked about “state options” did he mean institutions? I don’t know if such is true in Ireland but here in the U.S., there’s been an effective Independent Living Movement, along with in home support services. Such services could help provide occupational or physical therapy for instance. It seriously would surprise and disappoint me that the Irish government or advocates for people with disabilities have not stepped up to insist on home care by paid or subsidized caregivers or financial support to families caring for family members. I understand that even if that were available you personally might want to go on caring for Carys as you do, but it struck me as potentially a serious and unjust lack of awareness if the options remain providing for someone like Carys yourself or sending her to a home. Having no support for those who care for others so that people with disabilities can get what they need but still live at home has been understood as a violation of rights in the American Disability Movement. Sorry for the novel length comment! I’m so glad your voice and story could be heard. πŸ™‚

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    • Thanks Γ‰ilis, I’m glad you got the chance to listen. I think you are probably way ahead of us in Ireland in terms of services. We used to get in home pt speech and ot but then it was pulled through lack of funding. This year Carys only got 1 block of 4 sessions of combined pt/ot at school. Last year she got 3 blocks of 6 sessions. I am very dissatisfied and am trying to ascertain if this is across the board through budget cuts or whether Carys has been abandoned by the state, because thats what it feels like.

      In terms of care, respite has been mentioned. However, there is a 2 year waiting list. This is a facility which only provides for I think 5 children at any one time, so they have close on 1on 1 care the whole time. The max they can stay I think is 2 nights, but it would be enough time to take the boys away on an adventure wedkend, say, or to see a show in Dublin. The 2 year waiting list suits me, as Im not ready to let go yet. I hate the idea of going away to have family fun without her, but the truth is she cant take part in or even enjoy all the activities we like to do. I just feel I want to include her in everything all the time… I guess thats an insecurity within me.

      Incidentally, at this respite centre, there is a woman who works there who is the sister of one of my hubby’s long time best friends. We have never met her, but it is a strange connection which gives me a good feeling about the place, it reassures me in some way… some things are meant to be, and just knowing this helps to make it a bit easier to bear… someone out there is watching over us and helping, know what I mean?

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  2. Great job, Ali! Some people might slowly rethink, and adjust the way they look at things. Every smile, every moment is a gift – for all of us. Gratitude instead of greed should reign the human mind.

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    • I agree with you Karen, but I guess its in the nature of being human to take so much for granted… until things suddenly start to go wrong. Having Carys was such a reality check, but I found over time I have definitely reassessed what’s important. But I still make (lots of) mistakes…

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  3. There is nothing that an Internet acquaintance can do, but please permit me to say this: I hope you are not under any pressure to “get over” grieving. It is part of your life, and you are under no obligation to accommodate any other person’s inability to cope with that. You have my prayers and best wishes.

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    • Thank you Christine. I dont think I was ever put under any pressure to get over my grieving, because I dont think anyone around me realised thats what was happening. I didnt even realise it myself! When I did, I felt very guilty towards Carys… it wasnt her fault; she was innocent and beautiful and loved me so much. I knew I had to get over it, but at the same time you cant force it… it takes time. It was only a few weeks ago that I realised that I had finally let go, but Im sure Ill still have my moments lol! Thanks for your lovely comment.

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  4. Great job, Ali! I am very glad that there was a radio program devoted to learning about the lives and responsibilities of carers. I think the host handled the interview with empathy and yet he did not shy away from asking the hard questions. He made some very good points about how carers are often not appreciated by the general public and how we need to recognize the carers’ hard work, devotion, and sacrifices. Although Carys is your daughter and you care for her because you love her, you provide a wonderful example of the loving and selfless care that many mothers must give their special needs children.

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    • Thank you Rachele. I know this must be something close to your heart too after caring for your mum. I really appreciate your support. I dont generally tend to think of myself as Carys’s carer, but I guess that as time goes by, and a child grows up and becomes independent, I carry on doing for her what other mums dont have to. It doesnt stop me being a mum, but it makes me a ‘carer’ too. I never thought about it that way before. X

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  5. Inspiring Ali, well done. I think you shed a good light for many on a subject that is much overlooked. God only knows being a parent is a difficult enough job without any other complications thrown into the mix!
    A parents love is unconditional, no matter what πŸ™‚

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