First Steps

I began the search for day care yesterday with a visit to one of the possibilities in our area – there seem to be 5 or 6 that might be suitable for Joshua’s needs. This one seemed to be the most keen as they called me in response to my emailed enquiry and they even spoke to school about Joshua and his needs, which showed initiative. They have two sites and I chose to visit the one that was closest to home, which is based on a business park on the edge of town, 12 miles away.

It was a lovely surprise when I arrived to see two familiar faces of ex-pupils from Joshua’s school that I knew, so that was encouraging. The man who showed me around was a member of staff, who’s daughter was their first ‘member’ so he was passionate about how much fun the young people have and how much his daughter loves to be there. In the lounge area, there were two young people playing pool and my first thought was the damage that Joshua could do to the windows if he threw pool balls. some were sitting on settees and more were huddled around computers watching films or playing games I think. The tour included the changing facilities, a kitchen where they cook daily, a gym , a sensory room, a woodworking workshop full of tools! and an outside space with picnic benches for eating outside.

I have nothing yet to compare it with so I have made notes to refer back to , but it was not homely, but that will not be what they were aiming for and it did have the benefit of space. Joshua would be supervised I am sure, but I was concerned by the chaos and danger that he could create with pool balls and cues, weights , saws and screwdrivers. I am usually largely unaware of health and safety risks – that is my husband’s department to worry about such things! – but these leapt out at me while looking around.

I realised also that there is a fine line between allowing the young people to choose what they would like to do and offering structured entertainment. I was told that each morning they have ‘circle time’ when they discuss the plan for the day and what activities are planned and the young people are allowed to opt out if they like. That is great for the verbal ‘members’ and those who are able to make such choices, but what about Joshua? He would shake his head to everything that he was offered, even the things that he loved. So he would end up going with the majority vote but then when he got there and saw what it actually was, he would vote with his feet and refuse to get off the mini bus if it was not to his liking. That being said, he would need some structure and encouragement to try the gym, karaoke machine or the pool table or else he would be liable to sit all day , watch others and kick doors.

It was a really useful introduction to the world of daycare and it was a really good start as a point of comparison for my next visits, but the most important thing is that I have taken the first steps.

The Search Begins…..

I began the  process yesterday of searching for suitable daycare for Joshua from next summer and I was pleased with the progress that was made on day one. In the early hours of the morning, I sent out four emails to local providers introducing Joshua to ask if they were equipped to meet his needs, before arranging to visit. During the course of the day, I had two phone calls and one emailed response, which I think is a good initial response :

The email explained that they were trained in giving Joshua’s rescue medication and invited me to take a look around. The first phone call began with an open question: ‘Tell me about Joshua?’ which threw me slightly. I had to think quickly to be able to filter out the aspects of his personality and presentation that might interest them, on top of what I had written in my email. Once I started to describe him, ‘warts and all’, I found that I could not stop! Afterwards she thought that they could meet his needs and invited me to bring him along to look around. I asked that I came on my own initially, so that I could concentrate, rather than being distracted by Joshua and his antics. The second call came in the afternoon, and she described their service as being dominated by wheelchair users and their medical training, dealing with peg feeding as well as rescue medication. It soon became clear that Joshua would be too able and too mobile for their service, and so I ruled it out over the telephone. I am looking for somewhere where he can mix with his peers who are like him.

We did not get as far as practicalities such as whether or not there was space for him and how it would work, but I had a good feeling about the provisions and I was very pleased with myself that I had finally put my foot on that particular ladder. Somehow it does not yet feel as daunting as the search for new adult respite was last year : that may because it involves shorter stays and no overnight care or perhaps I am deluded and when I begin to look around, then the reality will strike. It still involves a big decision but I tend to be be led more by my heart than by my head, does it feel right for Joshua? were the staff pleasant and were the young people happy there? So this initial filtering process is more factual – where are they based? are they Midazolam trained? what activities do they engage in? – but then when I visit I will be hoping to get a sense of the place and the culture and whether or not it suits us all as a family. Fortunately I have a pretty good track record of basing decisions on my gut feel : I knew that his current special school was the right educational placement for him and we went to tribunal to ensure that he got what he needed and I fell in love with his Children’s respite provision instantly, as soon as they opened the door to me. My choice of adult respite was sealed when we took Joshua to look around and when I saw how the staff interacted with him, rather than focusing on us, which is what I wanted to see.

It feels as though I took the first tentative steps on the next journey in Joshua’s life yesterday, so lets see how that journey turns out and what twists and turns we face along the way.

Absence Makes the Heart Grow Fonder

The purpose of respite, as far as I am concerned, is to give the parents a break from their child for a short time but also for the young person to gain some independence from their parents. It is not natural – I really hate the word ‘normal’! -for an 18.5 year old to spend as much of his time with his parents as Joshua does with us. In an ideal world, he would be out with his friends, or have a part time job, not relying upon us to entertain him and to fill his school holidays. But we do not live in an ideal world, so we have to create a situation where we have some freedom from each other.

I delivered Joshua to his respite place at lunchtime yesterday, and he was happy to go there and , once inside, he was confident in his surroundings.  I helped him through the garden gate and told him to knock on the door, while I went back to the car for his wheelchair, but he stood in the garden looking from me to the door, uncertain about what to do. Luckily he was spotted from inside and his carer came out to greet him, then he happily walked indoors. He sat on the leather settee and began waving at me, indicating that I was dismissed, no longer required. I stayed a while longer, to report on the events and changes from over the summer, then left them to it, walking away with a spring in my step, knowing that I had plans between then and Monday morning when I will collect him.

It was not always so easy to walk away :I used to worry a lot about him when he was out of my sight and I found not knowing about what he was doing 24 hours a day, difficult to adjust to. I have heard other parents say that they felt guilty about accepting respite, but I have never felt that way. I know that the short break is as good and necessary for Joshua, as it is for us. We all need some space from each other to top up our batteries and to appreciate what we have at home better, as absence does make the heart grow fonder. It is all about finding the staff that you trust to do a great job of caring for your son , in an environment where you know that he will be safe, comfortable and happy. We have been very fortunate with the provision that we have accessed and the fact that Joshua has settled in so well at his latest placement.

I know need to find somewhere that I am equally happy with for daycare, which we will need from next summer when Joshua leaves school. I have set myself a deadline of this Autumn term to visit all of the local options ,so that I can make a selection by Christmas, which would give Joshua’s social worker six months then to complete the necessary paperwork and make it happen. That sounds achievable now, but we all know how quickly the weeks speed by, so I need to crack on if I am adhere to my own timetable.

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!