So Monday was the night, The night we have been working towards for the best part of a year – Owen’s 1st Overnight stay at Nascot Lawn Children’s Respite Service.
At times we was not sure this day would come; Firstly because our request had to go to a two panel meetings but after the second Owen was allocated 1 night per month. Owen then had to undertake ‘alot’ of tea visits to get Owen used to going back to Nascot Lawn after his beloved Day Care Sessions came to an end over a year ago when Owen started school. I was worried Owen would not remember Nascot Lawn he was unsure and a little confused as it felt familiar but all so different. I was also worried Nascot Lawn would not remember Owen, in hindsight this is ridiculous, As when we went back for our first visit the staff told me they were delighted Owen was coming back and had missed him immensely, they joked (I think) that all the staff were fighting over what ‘team’ Owen would be in, as they all were so keen to look after him. When we left that first meeting, we couldn’t get out the door for all the staff wanting to say hello and give Owen a lot of fuss. Next time I had a long meeting without Owen to get his care plan just right. The staff member knew Owen so well it was not a one-sided conversation, and her discussing Owen in a familiar way really helped out me at ease that he would be of course fine. Next came the many Tea Visits which they patiently allowed Owen to go at his own speed until we all felt ready for a full overnight stay.
After hearing the news that Nascot Lawns was said to close Nascot called asking if I still wanted to go ahead with the 3 planned Overnight stays? I said yes immediately, We all had put in so much work at this point, Owen was ready!! I also was worried that if I refused we would just be struck off some list and we would get no further support. Another part of be did it out of defiance, The powers that be have not won yet, we are still fighting to keep it open and saying no would be like admitting defeat. Later I did question my choice though, am I putting Owen through all this for nothing? But I think that’s more of my own guilt rising than truth.
So Monday was here, His school transport bus came to pick him and his rather large bag as they would be dropping him off to Nascot after school, they would also pick him up from Nascot in the morning to take to School. I would not be seeing Owen from Monday morning to Tuesday after school. My emotions were all over the place, but I managed to hold it together.
After picking up the girls from school, instead of rushing home to meet Owen’s school bus we went to the park, the girls were thrilled to join their friends something we never do. Not only because we have to meet the bus, Owen tends to feel overwhelmed. I then feel overwhelmed trying to calm and look after him, while also trying to look out for the girls, help Florence on the climbing frame or Push her on the swing. Sometimes I wish I just had another pair of hands, someone to help me. Owen does accessible play equipment, but he hasn’t quite got to grips with that he can not go on this forever, if we stop spinning him on the roundabout, pushing him on the swing he goes into full melt down then we have to leave. But on this hot Sunny Monday afternoon the girls played as long as they wanted, even Beth came to join us. We ended up staying at the park till just before dinner time. It was great and something many people, and I used to take for granted.
Another unusual thing happened, I fed the girls and then managed to make dinner for Alex and Myself to eat at 7pm not the usual 9pm or after, when we have tended to all of Owens needs, still awake but calm. At 8pm my mum came over to watch the kids, so get this? Me and Alex went out for a couple of hours on our own!!!!
Don’t get me wrong, I am not blaming Owen for all the things we can not do, we have truly accepted this is just how it is, but it was nice, just for a little while to enter the other World the one where people typically live. It was so easy and I had so much time. Probably too much time to think.
I missed Owen deeply, I worried that he wasn’t with me, did he miss me too? No one knows him I do! The guilt got to me. It was not easy and I felt sorry for Alex that night, this was our time, But i wasn’t much company, my head was elsewhere. Maybe it was me that needed more tea visits.
The next day I stared out the window awaiting the school bus that would bring Owen home. He arrived full of smiles and giggling frantically, I knew he was happy to be back. I read his note-book from Nascot, he was fine – obviously he would be. He needed one to one care to enable him to have lots of reassurance and cuddles. He watched Mr Tumble and spent time in his favourite the sensory room. He had a fantastic time. Owen was a little sick after a feed ( ongoing reflux problems) and didn’t go to sleep till 10.30pm, waking up gain at 2.30pm for cuddles and reassurance then up for the day at 5.30pm. At first I thought oh no, then I snapped at myself this is just Owen, this is his normal. (Hence why I look so tired all the time) so this was nothing to worry about at all. Owen really enjoyed his time and I was glad.
I feel silly feeling so guilty and anxious about Owen going to Nascot. I know I would not let him go if I wasn’t 100% sure that he would be safe, looked after in a way I expect and cared for. The fact that it was such a success fills me with sadness, Nascot Lawn really can not close. We got a glimmer of hope, on how our family life can improve, how our marriage will survive, how we all will cope, recharge and rest and in return Owen had a truly fantastic fun sleepover with his friends.
I’m not sure what will happen if Nascot Lawn does close. We are uncertain if we will be offered anything else. At the moment due to Owens age and medical needs there is no alternative. Even if there was, I very much doubt it would be a match for the truly amazing Nascot Lawn with all their kind and caring staff. Before this we have to undergo an assessment to see what they say are our needs are? This frightens me, every aspect of our life with Owen will be closely scrutinised, I know I can not hide behind my normal mask of ‘I am ok’ .. ‘I do not need help’ Sometimes I wrongly believe asking for help is a sign of weakness. The whole idea of being assessed by strangers who we have never met before makes me feel so stressed. I wish mine and other families didn’t have to go through this added stress and the uncertainty that it brings. Most of all I wish HVCCG would see sense and work out a way to keep Nascot Lawn Childrens Respite service Open.
This is why we need to #SaveNascot
Please help us by signing and sharing the petition below.
Above is a previuos post about Nascot Lawn which explains exactly why Nascot Lawn is so important.
Thank you for reading.