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How does a learning disabled child move on?

In the absence of suitable residential care for Muir in Scotland, we took him by plane to visit Young Epilepsy at Lingfield in Surrey. Muir has been classed as a potential school leaver for a while now but with nowhere to go. He is still a pupil at Donaldson's College in Linlithgow in Scotland, where he is resident four nights a week during term-time. The law allows Muir to remain at school until he is 19 years old. The law is a funny thing when it comes to the profoundly learning disabled - as though Muir is overnight an adult!

I know Young Epilepsy reasonably well. Our charity, the Muir Maxwell Trust, has had a connection to it for over a decade and we have funded a number of worthy projects there. Indeed, they have a state-of- the- art video telemetry diagnostic unit named after Muir which is part of their new multi-million pound medical centre - the Neville Childhood Epilepsy Centre. I remember well the occasion of our first visit to Young Epilepsy, part of a larger scoping exercise to determine what other epilepsy charities around the UK were doing before we established our own. We were determined not to reinvent the wheel but to find our own niche that would enable us to make a difference. We didn't expect to be big fundraisers but in this we could not have been more wrong - 12 years and over £8m later!

My first visit to Young Epilepsy was deeply emotional. Muir was only six years old at the time and the problems his severe epilepsy would bring were still very much unknown to us. I suspect my heartbreak at the time was the consequence of a slow dawning. Some of the young people we saw there were profoundly damaged. I found it difficult to speak that day. I wonder where they are now.

Many of the buildings were old and not fit for purpose including the medical centre, some of the houses and also the school. At that time, better known as the National Centre for Young People with Epilepsy (NCYPE), it was situated in 100 acres of prime real estate and provided first class care and education for 200 children and young people with severe and complex epilepsy but it was desperately in need of funds to ensure its survival. I am pleased that in our small way we have been able to help and today Young Epilepsy is quite transformed, further to an aggressive and hugely successful fundraising campaign that has delivered not only a new medical centre but also, a new school and extensive refurbished accommodation.

A two day trip south for Muir, staying in a hotel was a lot to ask of him. He manages seizure activity all the time and coupled with his profound learning disabilities, it was once again another emotional and also somewhat anxious trip for all of us. I told Muir that he was going on a little holiday with mummy and daddy to visit a farm. I was touched when at the airport I realised he was watching Peppa Pig's 'Flying Away on Holiday' on his iPad. He pulled his own suitcase precariously through the airport, checking on it like a new puppy on a leash. Parts of our trip were very grown up, checking in to the hotel where we shared a room with two double beds, and we had dinner in the hotel that evening. Muir's assigned task was to push the lift buttons and he did it well for everyone as long as they were going to the third floor. Our night-time was eventful - not much sleep for any of us.

The following morning I explained to Muir that the farm we were going to visit was part of a school and that we would have a look at the school too to see if we liked it. If so, Muir might come to school here one day. I could see him processing everything. Of course, first stop was the farm, it had to be, at the risk of a broken promise. After that we visited one of the houses where it was clear he instantly felt safe. He befriended a lovely member of staff called Cindy and played football with her in the garden. In the afternoon he spent time in College, at an art class. Again, it was clear he felt safe but he was processing everything. He painted a picture of a blue whale he told me later and he shared his sense of humour with the art teachers and the assessor as he insisted on painting them too!

Another disturbed night followed in the hotel and consequently, on arrival at college the next morning he fell asleep on a bean bag. He also had a seizure. Par for the course in Muir's life though, he quickly picked himself up and enjoyed an afternoon in the horticultural centre potting plants and digging the allotments with the other students. Towards the end of the day we waited for him in a college meeting room and his beaming smile was a reward worth waiting for as he returned from the garden hand in hand with his college assessor Lynne.

Whilst our visit was both physically and emotionally challenging, it was also reassuring, uplifting and inspiring. For all the complexities of the young people that are cared for at Young Epilepsy, Muir's Dad and I shared a sense of peacefulness and calm. The students were busy all day long with no limit to accessible outdoor activities. Young people walked by with their carers on route to class or to house or somewhere else on the campus. A number were in wheel chairs too. In the early summer sunshine Muir threw Pooh sticks in the little stream that ran through the grounds, he threw sticks and stones in to the duck pond too from the newly built Santander open air classroom that resembled a ship. At the same time he watched everything that was going on around him. I observed a sense of knowing that these young people were the same as him and they would be his friends. He felt safe. From the open door of the medical centre I watched the young people cycle past at a leisurely pace on their special bicycles, with their carers walking slowly alongside.

Before embarking on what would be an arduous journey home again, we spent another hour on the farm with Muir where, with the help of the farmer, he fed the pigmy goats, the pigs and the donkeys and played with the farmer's dog. He was shattered but he had given his all to this experience and there is no doubt that whatever processing was going on in his mind, he was at one with this special place - Young Epilepsy. Moving on is not necessarily something we are ready for yet but I think we are accepting of it, including Muir. Thank goodness for this place. Without it I am not sure Muir would be supported enough anywhere else to enable him to make the most of his life.

We will return again in September probably and again next spring. There is no doubt that this is the place for Muir but we will do this in a way that makes it his decision, not ours.

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