In search of respite

I have spent the past week telling people how much I love Small whilst also begging them to help me spend less time with him.

I am a parent of a Disabled Child and I Cannot Cope.

Having reached this point I realise it’s something we really Don’t Discuss.  As parents we should Cope, do you not Love Your Child? Just Dig in, you’ll do it.

I took a leap of faith and tentatively mentioned this online last week, waiting for the shower of no, it will get better and instead was engulfed by sympathy, empathy and good practical advice and I realise this is something many of us think about daily.

We are taught that as parents we should cope – we’ve chosen to have children, get on with it.  But we did not choose to have Small as he is.  When he was born I pictured the 4 of us running through fields, picnicing, having fun.  I never anticipated endless hospital appointments and finding continual childcare for Big so that at least her routine was maintained.

Small is a gorgeous boy.  But I’ve come to realise he has a complex set of both physical and learning disabilities which – before having him – I hadn’t realised it was possible to have and yet still be A Person.  He is nearly 3, unable to walk, crawl, run, speak, eat with anything other than spoon.  He requires endless therapies that cannot be fitted into everyday life.  He has to be carried or pushed everywhere.  He weighs 16kg.  The town I live in has hills.  He hates noise, children crying make him cry and new places unsettle him – visiting family is not as enjoyable as it should be.  And yet in there is a funny, cheeky little Monkey.

But I digress away from the subject of Respite. 

There was a great article by Jo Whiley about the need for respite earlier this year:

http://www.guardian.co.uk/social-care-network/2013/feb/13/jo-whiley-carers-need-break

Respite defined: a pause or rest from something difficult or unpleasant. 

It’s hard seeing that in black and white, but looking after my son is Difficult and I can no longer do this on my own.  The social worker is called in.   We discuss the many options, all of which are unpalatable but will, in reality, stop this family from breaking down.  We can increase our Direct Payments which now means Small can go to his Direct Payments Provider every other weekend and give us some time with Big to do activities which involve steps/ hills/ eating out.  We can go a stage further and talk about Shared Care.  I knew nothing about this until last week, but is very much what it says on the tin.  You share the care of your child with a foster carer for an agreed number of nights per month.  You still have parental responsibility for your child but they don’t spend all their time with you – this would enable some serious thought about the Way Forward.

Nothing in me wants to give my beautiful Small away, not even for a night, but I know that without it I, and we as a family, stand a high chance of disintegrating under the pressure of his needs, and that benefits noone.  So we go into this with an open mind.

 

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4 thoughts on “In search of respite

  1. Respite enables you to come back fighting with even more strength than before! I work for a respite centre for children with complex needs and I see so many parents express similar thoughts to you. They love their kids, but at the same time they really need a bit of a break.Every parent gets a break from their child at some point, but for parents of children with complex needs its nowhere near as easy, and its looked down on which is ridiculous. I hope it all works out for you really well 🙂 x

  2. This is lovely and once the truth and how you feel is wrote down it often helps you to moce forward. Its very hard to admit you cant cope some times but your not on your own . Not only have you got all your swan family here to help with the lows the highs and the other but out there more and more parents life with this thought when briniging up a disabled child xxxx well written and well done xxxxxx

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