The Search Begins…..

I began theĀ  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.



Joshua used the word ‘together’ a lot over this weekend and beautifully in context too :

On saturday morning, when he came downstairs, he looked out of the kitchen window and commented ” No bus!” which is what we call his school taxi, so I replied ” That’s right Joshua, no school today.. we are going out in the truck later”. He loves a drive out in our pickup truck so he replied ” Truck.. Together” and he beamed at me. That warmed my heart to see that the prosepct of a family outing, made him so happy.

On that trip later in the day, we pulled into a service station for diesel. I hopped out of the truck and told him that I would not be long and he replied ” together!”. I filled the car up then went inside to pay, during which time he had kept opening the pasenger door to peep at me. Joshua slid his feet onto the ground – he has very long legs – and swivelled round in his seat, but thankfully he was trapped by his seatbelt and so he could not get out , so that we could be together.

Finally at teatime, I asked him if he would prefer to eat his lasagne at the kitchen table or on his knee in the lounge, in front of the television? He pointed at the kitchen table and requested ” together”, so that is what we did.

This progress is so special as he is using so many more words these days, but he is not just repeating them as he did this time last year, he is using them perfectly in context, to express his clear preferences. He has never in his life really had that interest or communication skill to enable him to make such choices. In these three examples, Joshua clearly indicated , more than once, that he wished to be with me, his mum, which , coming from a 17 year old, is very special indeed.