A Busman’s Holiday?

It was my day off work yesterday so I went for a swim  late morning, rather than my usual 7am slot. When I got into the pool it was pretty busy and as I looked closer, it was full of adults with learning difficulties, swimming with thier carers, so it must have been some Daycare outing. As I swam my lengths, I observed them really carefully to see how the carers handles their charges and to see how much fun was being had. It was a timely coincidence as in the afternoon, our adult social worker was coming to visit to discuss respite and daycare options for when Joshua is 18.

I was delighted to see that the young people were all happy and confdent in the water and that their carers appeared to be very caring : the young man nearest to me was shrieking with delight – a noise that Joshua used to make, but no longer does I realised. He was paired with a young man about the same age as him , which I loved as they looked at first glance like two friends who had gone swimming together. Professional carers tend to be, in my experience, older ladies , so this appeared as though they had been more carefully matched together. I watched, from a distance, two female carers meticulously assist a physically disabled young lady up the steps to get out of the pool, they were gentle and went at a slow pace, there was no hint from the body language that they might have been impatient with her. I watched a mother in the observation area rush around to the showers with her daughter’s towel and tenderly help her to dry herself.

As I was swimming up and down, I took a lot of the scene in and I just hope that I was not guilty of staring. Had I seen any hint of intolerance, impatience or boredom amongst the carers , I would have enquired which organisation they worked for , so that I would know to avoid it for Joshua’s future. But quite the opposite, I could readily visualise Joshua in that pool with a one to one carer in two years’ time and I might well be that mum in the observation area, waiting with a towel.

What are the chances of me coinciding with a group such as this, on my day off on one of my few respite activities? But rather than it being something that spoiled my swim, it actually enhanced it.  It was an absolute privilege to witness the fun that these young people were having, it gave me a positive vibe for what daycare might mean for Joshua in the future and, while being so nosey, I hardly noticed the 35 minutes of exercise that I completed!  Win, win, win!


A perfect fit

I have packed up Joshua’s bag ready for his respite weekend away and he gave it a glance as he went to bed, so I am sure he knows what is about to happen later today. I anticipate that he will be extra-clingy this morning but once we arrive there, as we have to drop him off in the school holidays, he will not give us a backward glance as he will have a whole team of staff there to make a fuss of him. He just loves the attention that he gets there, there is always some member of staff to tease, to smile at, to flirt with and to flash his tummy at and I am sure that is what he loves about where he goes for his short breaks.

I now have a list of adult alternative provisions that we need to call up and look around, so that we can have something ready in place for next March when he turns 18. I plan to make appointments once Joshua is back at school and we will both take a look, before we introduce them to Joshua. I am hoping that I have an instant gut feel for the new place and staff, as I immediately felt at home where he goes now.

He has been going there for over three years now and I can still remember my first visit to suss it out : A smiley lady opened the door and she asked , before introducing herself or saying hello, ” can you walk like a penguin?” and I replied ” yes I think so!” and I thought, on the doorstep, Joshua would love it here. The rest of the tour was not really needed as I had already made up my mind but I went through the motions with the manager, getting more and more excited.

Once outside sitting in my car, I called my social worker up and said that we had found the perfect place and he tried to encourage me to visit another alternative. I replied that there was no need, as I had found the perfect place so I would just be wasting everyone’s time. I am delighted to say that that initial gut reaction was not wrong, it has been the perfect place for our son. They took care of him when he was ‘sleepy Josh’ but they are loving the cheeky, lively teenager that he has become. They humour him when he hides from them, giggling in the ‘garden room’,  they allow him to’talk’ on their telephone, even though he then loses it for them and they even take him out to his favourite Donalds for a treat. The staff were as worried as we were, when he stopped eating last winter, as they are ‘feeders’ like me, so they will be delighted to get the greedy, food-pinching Joshua back and I have warned them that they will not be able to fill him!

The new adult provision will have massive job to convince me that they can take care of him as well as the current place does, but at least now, I know what I am looking for as we have been spoilt with the very best provision. I have never been good at change, or transition as professionals like to call it! I can remember begging his nursery school head teacher to keep him there until he was 16, and she very earnestly said to me ” I’m sorry but I can’t… he will grow too big for the furniture!” I loved the fact that she used Joshua’s size as the only reason why he could not stay, not that she would not love to keep him otherwise! But if he had not moved up to mainstream primary and then his first special school, and then his current special school, we would never have found the perfect place for him for his education either , I know that  nothing stays the same, but it does not mean that I have to like it.

Out of sight, but never out of mind

We have enjoyed a lovely weekend away , while Joshua has been taken care of at his respite provision. We always try to do things that are more difficult with Joshua in tow. Yesterday for instance, I went to a church  pet service that he would have enjoyed as it was attended by 7 dogs as well as our Ruby plus two rabbits and 20 human beings. But being just me and Ruby was a much simpler experience :  I could chat afterwards with other member of the congregation without being dragged around the hall or having to leave early as he was restless. I could enjoy the hymns and join with the prayers fully, without having to do high-5s or having to shush him during the quieter moments.

We went for a pub lunch, where we were not anxious over timings, when they took a long time to seat and serve us, there was no anxiety over Joshua being restless at the table. I could eat my meal while it was hot, without interruptions and without alternating one forkfull for me and then another for Joshua. We declined puddings but we could have stayed longer and eaten a dessert if we had wanted, there was no need to rush away. We could eat and talk, there was no need to talk over Shrek 2 on the ipad.

After our lunch, we had a walk in the drizzle to the river and again we could take a different route that was not wheelchair friendly  – rather than walking along the road, we walked along a meandering muddy lane , through fields and then along a steep ridge to get to the river. Usually I stay by the river with Joshua throwing stones for Ruby to fetch, while my husband walks further on , climbing up to a waterfall and beyond. So this time, I clambered up a rock face to get to the waterfall and slithered around on rocks in the waterfall itself, just because I could do so.

After our walk, we drove home and we both fell alseep on our settee in front of the TV – there was no need for one of us to stay awake to watch Joshua. And we woke naturally , when we were rested, not when we had a cushion thrown at our heads or a tall boy sat on us! We did not eat our evening meal until after 9pm, instead I had a lazy bath to ease my aching muscles, but there was no necessity to eat early because Joshua needed to be fed. In short, respite means that we are able to focus on ourselves and what we want, rather than putting Joshua’s needs and wants first and that is what our short breaks mean to me.

After my bath I called his respite provision, as I always do around bedtime, and was upset to learn that Joshua had had a cluster of seizures in the afternoon – just about the time we were setting off on our river walk -and they had lasted long enough that they needed to intervene with his rescue medication. This had of course left him quiet and drowsy for the rest of the evening and he refused to eat his evening meal. I immediately felt guilty and sad that he had been suffering while we were outdoors having  fun. My instinct was to go and fetch him and to take over his care, as that is my role as his mother.

But then later, I gave myself a talking to – as I often need to do : the respite provision had done the right thing and had been attentive, there was nothing more that I could do other than cuddle him better. As of 10am today, Joshua will be our responsibility again , 24/7 now that he is on school holidays. I am more than happy to resume parenting duties then  and this weekend has been perfect to top ourselves up to enable us to do the best we can for Joshua, until the Friday in another 4 weeks time, when we can hand him over to them once again.

Home from Home

This is Joshua’s monthly weekend in respite – although this phrase is no longer used, he now has a short break! As it falls in the school holidays, so he is not receiving school transport, we have to deliver him for 2pm on Friday and collect him again at 10am on Monday. It takes over an hour from home to access his provision and can be nearer 2 hours if the traffic is particualrly heavy. We left home after 1pm yesterday and he arrived before 3pm,most of the local boys – there are only boys that stay on his weekend-  were already there. It is funny to see that Joshua is the oldest there now.

Due to the heat, Joshua was wearing his Converse trainers rather than his heavy black NHS boots and splints, and all of the staff noticed and commented on his footwear immediately. He breezed in and made himself at home immediately, checking everywhere out. The bedrooms have all been re-decorated by a local construction company  – as part of their Corporate Social Responsibility – so Joshua’s bedroom walls are now a smart baby blue colour and laminate fooring has been fitted too, all free of charge. Joshua will always sleep in the same bedroom, with the same bedding, as that is important to some of the children with Autism who attend, but I suspect that Joshua is oblivious. As long as he is surrounded by familiar staff and people who make a fuss of him and respond to his games and jokes, then he will be happy.

Given this heatwave, their priority this weekend is to keep Joshua cool, to minimise the risk of seizures. Hence the pumps on his feet, a more relaxed attitude towards his epilepsy helmet and I brought water spray to cool him down with. I bought a paddling pool too for the centre to use, so that Joshua , and the other residents, can cool their feet down in it . Since I delivered it however, the sky turned black and they have had hailstones and rain, so there may be no paddling this weekend!

We waved him off and he hardly gave us a backward glance, and after lunch and a brief shop in Town, we drove for another hour to the dales for a Short Break of our own.I called after 9pm, as I usually do, and was delighted to learn that he had eaten well and that he was on good form. While he was in his PJs and in his bed, they were expecting him to re-appear as he ‘hates to miss out when he can still hear the staff talking in the lounge’. He is a nosey lad and he would get even more attention if all of the other residents were in bed, so he will probably have lapped up the attention.

We are so lucky to have found the perfect respite provision for Joshua and he has enjoyed three happy years going there. I am very aware that he can no longer access this place and these lovely staff, from next March when he turns 18.  I have already warned them about the tears that they can expect next year and I was told that I wouldnt be the only one crying, as they will miss Joshua too!  We have now got somewhere more local to visit for when he becomes an adult, and at least I have a great model of what I am looking for. I just fear that anywhere else will find it hard to measure up as his current placement really is a Home from Home.