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I think you should consider respite
Those words were uttered by our paediatrician and before I could react she said that she would be contacting our HV nurse who was our point of contact for any issues etc. Afterwards once at home and I had time to process all that went on in the meeting I was like "no way we are needing respite". When the nurse broached the subject she could tell by my reaction that I wasn't keen so she said she wasn't going to push me and that we would leave it.
My reasoning for being against it was that Roo is my child, my responsibility, so why would I need respite? I felt that the professionals suggesting this meant that they thought I wasn't good enough, that I couldn't cope with my own child. I wanted to prove them wrong that I could cope.
We plodded along for another year, attending the many appointments monthly, undergoing various tests to try and get some answers to his issues. Around this time my eldest child was being bullied at school for having a disabled brother and parents who are deaf, which resulted in his behaviour deteriorating quite a lot to the point that it no longer just affected our home life but also his school life.
It was during this difficult time that respite was raised again but this time with the assurance it was nothing to do with my parenting but it was to actually give me a break from the constant caring as Roo couldn't be left alone as has no danger awareness which meant that wherever I went Roo had to go too so his older brothers never ever got individual time with me and their Dad together as we often had to be separate with one of us watching Roo and the other doing things with our other children. It was difficult to do things as a family on the whole. My husband was returning to work which meant that I would be on my own majority of the time and they explained that with respite it would mean I would be able to spend some valuable individual time with my older children without worrying about Roo. Also Roo doesn't sleep very well due to his sleep disorder so sometimes I was so exhausted that I was barely functioning... It was only then that I agreed to try respite on the condition that if I didn't want to continue it could be stopped.
Apprehensively I filled in the paperwork with the help of our disability social worker who explained that it would go to panel who would then decide if we were entitled and how many hours. I quietly thought that we had no chance so imagine my surprise when it came back that the panel agreed that we badly needed the respite and we were awarded 4hrs per wk.
So this is when Share the Care became a part of our lives. A carer would come to the house and take Roo out for 4hrs and then return him.
In the 2yrs we have been a part of the programme we have had 3 carers. Our current carer is amazing and in the short time she has been in our lives she has bonded so well with Roo, that every week when we show him his carer's picture he beams a big smile and I know that means he likes her. When she comes for him he is excited to see her and happy enough to go with her which makes it so much easier.
The most important thing to me is that Roo is happy and comfortable and by his actions and gestures I know how well he gets on with his carer. She takes him to many places like the beach, parks and country walks all which he absolutely loves, they take a packed lunch and have a picnic wherever they go. With winter on its way there will be opertunities to do indoor things like swimming or visiting the Yard etc. Roo thrives on 1:1 care which he doesn't get as I have 3 other children.
Those 4 hours that he is away are valuable and allow me to spend time with my other children, we do things that isn't possible with Roo around like playing board games, watching a movie , visiting some place the boys want to try like Ryze a trampoline place that Roo couldn't do . The boys thrive on having my undivided attention and their behaviour has improved a lot since Share the Care started. Sometimes if it's been a pretty tough week with very little sleep the boys are happy to chill in their rooms on their game consoles while I lay on the sofa having a HOT cup of tea! ( a rarity as I often get distracted and by time I get back to my cuppa it's lukewarm ..yuk!) My youngest is still very young so she often has a nap so I will rest during this time as I can be so exhausted from the lack of sleep that I find it hard to do much. After a rest I always feel much better and ready to face the rest of the day.
When I was pregnant last year with my youngest our respite was reduced to fortnightly as it was felt that Roo was struggling as he was going through a very bad patch with regards to his sleep issues . It was only then that I realised how much I appreciated having a carer weekly. It was a very dark several months but thankfully we got through it and just recently our new carer was happy to allow us to go back to weekly respite.
I never ever thought respite was for us but now that I know and understand what Share the care is all about I know how valuable this service is to parents like myself. It benefits not just Roo who gets undivided attention and to experience life in the community but also benefits us all as a family knowing that all our children get undivided attention.
September is Share the Care month in East Lothian and they are looking for more carers, so if you have time on your hands and have the patience of a saint and a caring, fun loving personality then you could help to transform a family's life.