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Respite - Yay or Nay?

Every parent knows how much hard work a child can be, but being a parent of a special needs child is harder as they need a lot more care & supervision than that of a child of their age. As Roo gets older , more mobile we are finding that we cannot leave him at any point... he needs constant supervision and care. While he is mobile he does have issues as he has poor balance, low muscle tone, possible hyper mobility in joints & falls a lot. He cannot run, jump or walk for long...when outside he needs to be in a buggy for his safety as he has no danger awareness & he is physically unable to walk much otherwise he is in pain the next day from doing too much. He cannot walk up and down stairs but he can crawl upstairs as long as someone is behind him to catch him in case he loses his balance...Majority of the time he has to be carried & he is a big boy - almost 3 yrs old and nearly 16kg so its a killer on your back sometimes!!

He thinks nothing of reaching up onto the worktop in the kitchen and grabbing whatever is within his reach - a knife, a drinking glass etc and playing with it...we have to constantly check that everything is put away after use, that nothing is within his reach..the bathroom door has to be locked from the outside to stop him playing with the water as he has a tendency to put his head in the toilet to play with the water as you can see from my previous blog post...We have no ornaments or fragile things within reach as Roo would just pick them up and chuck them onto the floor breaking them..When you have other kids you have to be constantly vigilant because as many of you will know they are typical kids who will maybe leave a piece of Lego after tidying up, leave a pen lying around or their tablets lying around without thinking that Roo could get hold of them so we are constantly telling our other children to be extra careful, to double check which doesn't go down well some days but as they get older hopefully they will become more understanding..

Even at night time Roo has to be in a high sided bed, at the moment he sleeps in a guest bed which has metal bars around 3 sides of it so the open side is pushed against the wall so its like a cot but single bed size..at the moment it keeps him safe at night but what will happen when he gets older? that's a bridge we have to cross when the time comes... Myself & hubby are deaf so its important that Roo is safe and secure as we cant hear at night and the baby monitor doesn't always pick up every sound... Roo has non epileptic myclonic jerks which disturb his sleep and some nights he can wake up screaming & I have to get up & stay with him till he falls asleep...sometimes it can be half an hour and other times it can be all night long... Roo has very limited understanding so needs someone with him at all times... it exhausting but Ive always accepted it as our way of life now as we are slowly coming to terms that he has additional needs but Ive never thought to myself that its too much...

So imagine my surprise when Roo nurse, after hearing that we had to give up our family holiday due to Roo being unable to cope with it, that she thought respite might be good...I got a bit flustered & said that we didn't need it..she went on to say that there were different kinds and that it would only be a few hours and in those few hours we could spend time with our other children..I was still unsure but agreed to let her refer us as she said we could change our minds later on...After she left I spoke to my other half & like me he wasn't keen at all so we said we would just refuse it when the time comes.... Roll on a month later and we had our meeting with the consultant in which our nurse came too... After talking through everything & agreeing to referrals to other professionals for other issues that have arisen we were getting ready to leave when consultant asked hubby a question and he mentioned his back problem and suddenly the consultant was going on about respite much to my surprise..she agreed with the nurse that it was a good idea as if hubby gets an operation he will be out of action for several months so I need all the help offered... 

Now... why do I feel a bit apprehensive about the whole thing and about the word "respite" ? For the first time I have come across a situation where I feel out of my depth...I never thought my child was disabled enough to need respite...I always thought it was for children who had complex medical needs...we are lucky in retrospect that Roo is a healthy child who's disabilities is mainly mentally, mild physically, cognitively etc ..so to be told that we more like will qualify for respite was a shock to hear..My biggest worry is that no one knows my child as well as I do so how can I put him in the trust of carers who know very little about him, I would feel guilty in sending him off to someone while I had fun with his brothers or just having a rest, relaxing having a cuppa or doing housework etc...I feel like I would be admitting that I cant cope when I can..I have been his carer for nearly 3 yrs and have been OK so why would I need help now...

BUT ... on the other side of the coin I can see the possible benefits of having respite... I have been told that having no rest from constant caring, stress and tiredness can build up inside me until one day it just gets too much...My marriage and other children would suffer as a result.. I can already see that my other children are suffering from the lack of attention ... I mean I try my hardest to spend quality time with them but some days I cant if Roo is having a bad day and that make me feel guilty..My husband and I don't get any time together without our children except on the 2 afternoons that Roo attends an sn nursery but that 2 hrs is often spent catching up on housework rather than spending quality time together! As the consultant says that by having respite it will widen his horizons and give him some independence away from me...which could be a good thing in the long run..Maybe just a few hours one day a week to begin with wont do any harm? I could spend that time with my older two boys doing something they would love to do...it probably would benefit them in the long run...

So..when the lady comes to talk to us about it all I will keep an open mind and base my decision on what is offered..This is one of those times when I wish I could just split myself into 3 - a better wife to my other half, a fun mummy to my other boys giving them all the time in the world & caring for Roo...


Comments

  1. You love Roo, no matter what. But that's what other side of the coin tried to tell you was, you need to spend time with your husband and other children, to get their attention to avoid from destroy your future. Roo is s beautiful wee boy (I know I repeat it, like, millions time but that's absolute true.) I love my kids but I need to get away from them for some times to let our love grow very strong at each time we see each other. Thank you for your sharing with us, I'm much enjoying to read your blog. Keep it go, girl!

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  2. I can understand your reluctance completely. Respite brings images of abandonment, guilt at having fun without him etc etc. Yet if he wasn't disabled he would as he got older spend more time away from you, sleepovers with friends or relatives etc. He need to have those experiences somewhere he will be safe and well looked after. You're right to think ahead, support is available to stop us ever reaching break point, yet so many of us have to get to breaking before we accept it.

    I also had similar hesitation around applying for DLA - like Roo my son's disabilities are cognative, learning and minor physical. I felt getting paid to look after my own child was somehow admitting failure. It's so hard to draw the line between what we do for them as parents and what we do for them as carers. Eventually (he was 7) I applied and it helped. I still feel mixed about it though.

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