Respite care

Published June 11, 2012 by swanfreddie

Last year I made a phone call. A phone call that no mother should have to make. I rang social services. I told them I needed help. Help with my own son, because actually, things were getting tough & Freddies care was taking over our family life.
9 months & quite a fight later we received a letter agreeing that they would allocate us 5 hours a week respite with a special needs childminder.  Social services are now in the process of hiring a childminder on our behalf. I’m sure I should feel happy about this. After all it’s what I wanted, isn’t it? so why do I feel full of guilt?

I’ve only ever really been away from Freddie once. He was poorly & in hospital. We had been there for a few weeks & my partner had been taking alot of time off work to care for Evie while I was with Freddie. But there was only so much time he could take off work. This one evening he was due to be on a night shift so I left Freddie at hospital by himself & came home. I kept telling myself it would be good for me & I needed a break & a good night sleep. But I spent the whole time crying & was straight back down there the next morning.  Obviously Freddie was fine & was in very good hands with the nurses in the hospital but he was my responsibility & he needed me to be there with him and ever since then that’s the ways it’s been. Freddie is a part of me, where I go he goes.

I feel very apprehensive about leaving Freddie with a childminder. Will they feed him properly? Will they do his med doses right? will they supervise him properly? Will they understand what he needs? I feel guilty that while hes in somebodies else care i’ll be having a break & I feel a bit like a failure for having to admit I need help.
I think it’s hard for any parent to leave their child. Evie will start nursery in September & i’m sure I will find it hard to leave her but with Freddie I feel alot more anxious about it. He relys on me for every aspect of his care & who ever I entrust to look after him will have to take over this role with no room for error. Medicine doses must be exact & not forgotten, tube feeding must be done correctly, puree feeding must be done tactfully without forcing him to take it in anyway & he must be supervised at all times to avoid him hurting himself.

Really I should be grateful that we are receiving help. I’ve heard many stories where parents of disabled children are refused any form of respite. It will give me chance to spend some much needed time with my daughter but…I want my son there too. Half of me will be missing.

I feel like i’ll never be able to get the balance right. If I send  Freddie to respite care Evie will get the attention she deserves off me, one on one, but at the same time I feel like i’ll be letting Freddie down. If I don’t send Freddie to respite he continues to get the care from me that he deserves but Evie misses out on one on one mummy time.

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4 comments on “Respite care

  • V glad social services have come through for you on this. It will take some settling in and getting used to for sure. I feel apprehensive about leaving Lawrence with family, even, and he isn’t currently tube fed or taking medication… it’s tough to fight against that instinctual need to protect, but the guilty feeling will subside over time and you will all benefit I am sure xx

  • I know exactly how you feel with this. It took us a long time to get used to the idea of our daughter being away from us but as she got used to it and they got used to her it got a lot easier. Then it got to the point where she couldn’t wait to go and I honestly think it is a break for her as well. We actually took the leap last year and went away on holiday to a foreign country and left her in respite care. It was awful for the first few days as we missed her so much but then we started to relax a little and realised just how much we needed the break. When we got back she was fine and hadn’t missed us at all so we are off again this year and I am sure she will enjoy it as much as we will enjoy the break. It does get easier to deal with and it will take time for you and your son to feel comfortable, but it will definitely come.

  • It is very hard to cope with the idea of respite – as a Mum you’re supposed to want to be with your child all the time aren’t you? But it IS different when you have a child who needs full on 24/7 attention, it’s just not possible to keep it up all by yourself forever. I left Smiley in the hospital most nights when she was an inpatient for the first 6 months of her life, she slept through, my older daughter got some attention and I got a night’s sleep. I didn’t feel guilty, it just allowed us as a family to keep going. xxx

  • Hayley I think you’ll never feel like you’re getting it right. That’s the problem with having a child with so many needs and another who just wants time with you. You have to accept that you’re just a mother with more demands than any one person can meet. The important thing is you love both your children more than anything else. No matter what, they will understand that as they grow up. You have to remember that, if you’re not in good shape, then your kids won’t be either so it’s very important you take some time for yourself. You won’t always be around for Freddie so it’s important he gets used to other carers as far as possible. This takes time but has to happen! Not just for you but for him also. There is no question that both you and Andy do the best you can for both your kids…you’re only human after all! As long as whatever you do you do it with love, then you can be sure you’re doing the best anyone could possibly do and your children will realise that at some point. Is there any question about your love for your children? Absolutely NO!!! Be kind to yourself cos you have to be in good shape for your kids and you are most definitely doing the best you can. Those around you can see that. Bottom line is that having a child with needs is always a battle…with yourself, with your child, maybe with your husband, and with services who are meant to understand and support. You ARE doing the best you can. End of! Liz xxx

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