Time to Review

Yesterday we had the first review meeting at Joshua’s new adult respite provision to discuss how his first few months have gone. Myself and my husband met with  the respite manager and Joshua’s key worker, and our social worker. We sat around the dining room table sharing how well he has settled in and planned the future, when he will progress to longer stays. He has started to eat there and is getting to know the staff and his bedtime routine. They have heard some of his language and they are planning activities that he might like to do in the future.

The only issue remaining has been showering as Joshua is not keen to get into the shower, though he is fine once he is in there. His downstairs bedroom has an en suite  wet room. Joshua prefers a bath, but the only bath is upstairs and is the en suite to a young lady’s room so it is not really accessible to him. This is not a new aversion, his children’s respite often struggled to shower him and if he objected enough, they would not insist. I would never offer him a shower at home, as I do not feel safe with a tussle to get him in there. They plan to try ‘desensitisation’, whereby the shower will be on whenever he goes into the wet room so that it becomes more familiar and hopefully less intimidating, and he will be encouraged just to put his hands under the spray of water at first, so we will see how that goes. He has two weekends booked in this month, so some progress will hopefully be made.

Joshua is now funded wholly by Health and so we have lost our current Adult Social Worker to be replaced by one who works for Health rather than Social Care. So this was our last meeting with her. She has certainly been an effective and caring social worker for our family, although Joshua never really acknowledged her when she visited him at school or at respite. But she spent a lot of time last summer getting to know us as a family and understanding both mine and my husband’s perspectives, as they are very different, and she took both of them into account when writing reports and seeking funding. She was proactive too, chasing me to look around respite alternatives and even yesterday, she was nagging me to review his daycare options in the near future too. This is the approach that we need, as otherwise time flies away from us just dealing with the day to day, she has always had her eye firmly fixed on the future, whereas I prefer the comfort and familiarity of the past and the present. So my husband shook her hand as we left, thanking her, and I gave her a hug. Nothing stays the same in life, time to move on but she has left us in a better state than she found us 18 months ago, and for that I am thankful.

Review of my blogging year

By next weekend, I will have been writing this blog for a full year, which seems incredible to me. On the year anniversary, coincidentally I will be staying with the friend who gave me that push to start my blog, so that is timely. We were idly chatting one day about all the rich experiences that I felt that I had picked up over Joshua’s 15 year life and what I wished I had known when I started my journey, when she suggested that I write a blog, and the idea stuck.

I am able to see that over the last 51 weeks, I have made 360 posts in total – who knew that I had that much to say?? There have been 4339 visitors to my blog site over that time, which is an incredible number and that is an exciting prospect. I have been moved by the comments that I have received from strangers over the last year, who clearly feel like they know Joshua now, through my writing. I feel proud to think back on just two ‘rants’ over the course of the year, which is remarkable considering what Joshua faces on a daily basis.

More recently the website has asked my to categorise my themes, which  also gives a good indication of my priorities in life :  they all have the overall theme of parenting and disability, but below that my most frequent theme has revolved around ‘eating out’, which clearly dominates my early morning thinking. Then I have written about ‘friendship’ 21 times and then ‘humour’ and ‘respite’ 20 times.

It was our 7th parent coffee morning at school yesterday and it was the best attended so far – at one stage I thought that we might run out of chairs and mugs! There were some new faces who joined us, which is great, so it is starting to grow. But it covered most of my blog themes as we are all parents of children with a disability; we mostly eat cake – although  there was a bid for more healthy eating with one mum bringing punnets of strawberries in to share to comply with her new diet, although we joked about me serving carrot sticks and celery instead of cheesecake and victoria sponge! New friendships are being fostered, it represents a brief moment of respite from daily routine and a lot of laughter is exchanged too over the course of the morning, as well as good advice, parent to parent. I really hope that it grows from strength to strength and that ultimately we outgrow the school meeting room.