Homecoming Part 2

I left work early yesterday, so that I could be the one who met Joshua from school, which is unusual for a Monday. As the car reversed into the drive, his cheeky, smiling face looked out of the back window at me and he was eager to get out of the car. I was greeted with a big bear hug and a beaming smile, which was the best feeling in the world. We had been missed and he was delighted to be back where he belonged, back home. Once indoors, Joshua checked out his Den and bedroom, just to ensure nothing had moved or changed while he was away. All of the time I was treated to more hugs .

He messed about at teatime, just seeing how far he could push things now he was home : he wanted to eat his meal on his bed upstairs in his bedroom, rather than downstairs in his normal place. He left a third of his first course, but was he still offered a pudding? Of course, thrilled to have him home, I relented on both challenges.

While the respite provision attempts as far as possible to replicate a home environment, there really is ‘no place like home’ and Joshua recognises the difference. At home he had my undivided attention and he made the most of that, so much so that my husband commented on feeling neglected, as Joshua’s needs and wants came first. He was indulged by having ‘Lion King’ on in his bedroom, while Robbie Williams was singing in the Den and Madagascar was playing to itself on the ipad on the floor of the snug at one point, and Joshua browsed between all three favourites, not sure where to turn next, being spoilt for choice.

I loved our break away in Belgium and I am certain that Joshua had fun in respite, but this is where we both belong : “back home!”

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Day Tripper

As we are starting to use a new Direct Payments worker with Joshua, she took Joshua out for another three hours yesterday. You may recall that I was surprised the first time that she took him out in the summer holidays, that he was rather shy and anxious about the experience? Well there was none of that this time, he beamed when he saw her and practically ran to get into her car, while we loaded the wheelchair. He kept shouting ” I like you!” and then she said the magic word relating to her plan for the outing, that they might go to McDonalds!! He heard that and began to jump up and down in his seat shouting “Donalds!” so she was committed to that plan, there would be no talking him out of it.

So how did I use my three hours of ‘respite’ on a saturday morning ? well I went wild… I had a sleep for an hour, I went back to bed! I enjoyed a long, hot bubble bath with no interruptions. Then I went to the shops – buying some bits and pieces for my husband’s birthday – then I tooked the dogs for a sunny walk in the park. So I packed a lot into my three hours ‘off’.

Joshua returned back, full of beans, and I enjoyed hearing all of the tales of what he had got up to and how he had behaved in ‘Donalds’ – he had enjoyed his chicken strips and had decided when he had had enough and so they all took his lead, and left when he was ready. I explained that he does not get to dictate that so much when he goes with his parents, but it was only trip 2 so she will get more confident at telling him ‘no’ I am sure, instead her son had to leave while still eating his burger, just because Joshua was ready!

I am delighted by how well they are both taking to each other, they seem to be having fun so we just need to work out some time next month to play again, as I am sure it will be easier if they have regular contact and get to know each other better. But I love how much not only the DP worker enjoys his company, but also her family seem to have taken Joshua to their hearts already : her son was keen to take him to the skate park with him and her daughter was disappointed that she was busy yesterday and would not see him.

As 4 year old Joshua left nursery school, the headteacher wrote in his ‘report’ that Joshua had a talent for getting into people’s hearts. She spotted something in that child that I did not recognise at the time, as his transition to mainstream primary school was mostly about what he could not do. But now over 13 years later, I see that she was indeed right, that his smile, affectionate nature and the twinkle in his eye does indeed win people over . That is a great skill for him to have and it should help him thrive in the future hopefully, especially when we are no longer around to take care of him.

Tough Act to Follow

Yesterday we looked around our first ‘adult’ short breaks provision – Respite is now called Short Breaks – the first of three alternatives in our local  authority area that our 18+ social worker has identified for us. So that is the first thing, we have a choice of three once Joshua is 18, but as a child, he has to travel 50 miles for his Short Breaks! My husband and I both went to look around, with an open mind and not really knowing what to expect. This one is just 15 minutes from home so it wins on the convenience stakes and is in a beautiful, rural location, overlooking fields and stables so Joshua would feel at home there.

The manager greeted us with a smile and she was very pleasant and she showed us around, answering all of our questions. There was just one resident there at the this time and in fact I knew her, she had she is two years older than Joshua but they had shared two previous provisions. She looked happy and seemed to recognise us – she had certainly lead my husband by the hand around a garden in the past! – and her two carers seemed to be attentive and friendly. It has four bedrooms, all with double beds in, which was a key difference from his current location and took me by surprise, until the manager explained that they are all adult residents and asked how many adults I knew who slept in a single bed, which was a fair point. It had a safe garden with a bright mural and a new trampoline, so it was starting to represent a sensory garden.

I liked it and I liked the manager, but I did not love it. I fell instantly in love with  his current placement – the staff , the building and the city centre location – and while possible, it did not compare with that. Perhaps we have been spoilt with the best?  This is a new home, it has only been open for around a year and so it still lacked heart for me. But possibly it only needs the buzz of more staff and residents for it  to feel more homely.

We will view the other two  local places and then let our social worker know our preference. And then they will need to do whatever needs to happen with the finances, and of course a gradual Transition process will need to be planned in. The new staff, wherever they are based, will need to meet Joshua and to see him both at school and in his current respite provision, so that they get the professionals’ opinion as well as seeing the young man for themselves.  There are certainly exciting, but scary, times up ahead as Joshua turns 18 and I am trying to embrace the change, as it will happen, whether I like it or not.

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.