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Rebecca, Simon and Sylvie's Story
Positive living and learning for people with epilepsy and other complex needs

Rebecca, Simon and Sylvie's Story

We first came to visit St Elizabeth’s College two years before Sylvie’s school placement would finish. We had pretty much trawled the South East visiting all of the colleges which would, at least on paper, meet our daughter’s complex range of disabilities. Despite coming highly recommended for young people with physical disabilities (as well as having epilepsy and significant learning disabilities our daughter also uses a powered wheelchair) none of them had felt right for her and we were beginning to lose hope. St Elizabeth’s was the only one we had had no prior knowledge of and we were therefore unsure whether to bother visiting.

We braved the M25 which was thankfully kind to us, negotiated the myriad of roundabouts through Harlow and quickly found ourselves in beautiful countryside. Arriving at the front gates we felt cautiously optimistic - a huge, lovely flat, green site with a combination of modern mainly one storey buildings and a more traditional main building. Our first sight of students/residents was the odd person whizzing past on a trike or go-kart with a carer trotting alongside. We were given a thorough tour, except that we weren’t allowed to see inside the bungalows out of respect for the privacy of the students who live there. The college was modern and well equipped, the grounds were spacious and the bungalows, each of which accommodate up to four students, were within a few minutes’ walk from the college building and were arranged in a quadrant  in Centenary Close.  It all looked lovely.

We decided that we would like Sylvie to see the place for herself and returned soon afterwards for a College Open Day. On arrival at the College, students were on hand to greet us and offer us drinks and refreshments. They also later met us again to show us examples of their work and talk about the various opportunities they had been taking advantage of.  It was so refreshing. My husband is a teacher and I have a background in care home inspection and between us we are no strangers to the lengths institutions will go to to put on a good show for visitors.  None of the other colleges we had visited had been brave enough to actually let us meet students unless they were delivering something pre-prepared and our visits had been carefully stage-managed.  In contrast, St Elizabeth’s had the confidence to let the students do the talking. Students of all ranges of abilities were given these roles and some, like our daughter, were delightfully quirky. We were given a thorough look around again, but this time including seeing one of the bungalows from the inside as its occupants had given their permission. It was spacious and the bedrooms were very individually personalised and all were en suite with large wet rooms. The kitchen was very large and each student had their own fridge and cupboards as they are assisted in choosing and cooking their own individual menus.  We liked everything we saw. Sylvie quickly started to make friends with the students she met and it was hard to drag her away at the end of the day.

We all left feeling reassured that we had found the right place for Sylvie’s next adventure. Somewhere which seemed to value and respect all of its students for who they were, rather than trying to make them into something they couldn’t be, somewhere which would enable our daughter to truly develop her independence in a safe but challenging environment.

We started to feedback our preference for St Elizabeth’s at her first EHCP meeting.  She was by then in the second of three years weekly boarding and this had already been of huge benefit in bringing her independence forward. Sylvie’s social worker was supportive, Sylvie herself was expressing clearly a wish to continue boarding and telling everyone that she wanted to stop living with us after school and go to St Elizabeth’s. The EHCP process included her meeting an Educational Psychologist from her placing borough and her report was very supportive of this wish.  We naively thought that this stood us in good stead for securing her a place.

What happened in the ensuing 18 months was enormously stressful. Our local authority refused at the eleventh hour to name St Elizabeth’s on Sylvie’s EHCP and instead offered her a part time local day college. We put in an appeal to the special needs Tribunal, initially thinking this would only take a few months and that we could represent ourselves. We quickly realised however, that we would have far better chance of succeeding by appointing a specialist legal firm. Costs rapidly escalated as we were advised to enlist the help of various expert witnesses and a barrister. Some nine months later, after various complications and delays, we finally succeeded in securing Sylvie the place at St Elizabeth’s which she needed and deserved.

Starting at St Elizabeth’s was remarkably straightforward for Sylvie - she quickly settled in and made friends almost immediately. After a frustrating year of being stuck at home with Mum and Dad, the freedom and independence that the college has given her has been hugely beneficial already. The educational and care staff teams are wonderful and really care about the students as individuals. The end of term performance of A Midsummer Night's Dream was testimony to this - each student’s role had evolved to embrace their personality and our Sylvie, a shameless flirt, shone as Titania, queen of the fairies. The therapy teams have already started to implement programmes to help move her independence skills on further and it has been reassuring that all staff understand the debilitating effects of Sylvie’s regular seizures and take this into consideration, meaning that their expectations of Sylvie are sensible on any given day.

After years of caring for Sylvie every day with very little outside help, as her parents it was initially slightly harder to adjust to Sylvie no longer needing to be the primary focus in our day to day lives, especially when we have been looking forward to seeing her, only to get a telephone call to say that she would rather go on a shopping trip or to a party with friends than spend a weekend at home with us!!  The initial huge relief of achieving our goal after such a fight quickly gave way to an extreme case of empty nest syndrome. However, thankfully this quickly passed and what is now lovely is that rather than missing her all the time, we can now really look forward to seeing Sylvie and hugely enjoy the “edited highlights” rather than what had become an incredibly trying and exhausting daily slog.

Seeing Sylvie settle at St Elizabeth’s and take advantage of this next step towards as much independence as she can manage has already been worth the stress and expense of the Tribunal process. It is a shame that parents have to fight so hard to get what their children with special needs deserve and need, but in our case it has had a worthwhile result. We hope our story may give prospective students and their parents some hope if they are faced with a similar battle that securing a place at St Elizabeth’s should be worth the fight.

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