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Renee's Story - as told by her mum Positive living and learning for people with epilepsy and other complex needs

Renee's Story - as told by her mum

Early on it was clear that Renee had lots of health issues and behaviours that were difficult to manage. Renee went from home to nursery school successfully, as it was quite regimented and it suited her need for organised routine.

School however added lots more problems…like when Renee wanted to read the same book over and over, or hated the ‘noise’ in the playground. On top of this, Renee’s seizures started to increase. In her first year of school we had a diagnosis of autism and also a diagnosis of epilepsy. It was a very difficult time for us a family – although we realised Renee had problems, it was still devastating news.

At this time, mainstream schooling was not working so Renee had a week at mainstream, and half a week at a special school. This did not work at all as Renee couldn’t cope with the change and the special school couldn’t cope with Renee’s complex needs.

The next option was an autistic special school that did not have any medical support. This placement worked well to a degree, as they helped Renee to manage her autistic behaviours. However every time a seizure occurred, a paramedic ambulance arrived.

When any of the other aspects of epilepsy arose, e.g. pre-seizure behaviour, tiredness, lack of eating or drinking, I was asked to bring Renee home from school. It was very clear that the school could not manage her and started to give up. At one point, Renee rarely attended school due to illness – she was missing out on her education.

We were at an all time low. It is very difficult to come to terms with diagnosis, the actual caring, and the sadness of the situation. Also it is very difficult to trust people when you have been let down time and time again.

We looked at several schools locally and further afield, but nowhere seemed to be able to manage Renee’s complex condition. We realised we needed to get things right at transition, and that is when St Elizabeth’s ‘found us.’ We realised that Renee’s other health issues were over shadowed by her epilepsy and if we could get that more under control, maybe Renee had the chance for a happy life. We searched for ‘epilepsy schools’ on the internet and St Elizabeth’s came up.

We had never been to Hertfordshire, but we were determined to find it…127 miles later we arrived!

We were delighted to see all the outside green space, as Renee is a great fan of nature. Everyone seemed to be happy and well cared for. We chatted with the school staff, a behaviour therapist and nurse – this was very reassuring as they completely understood our situation.

When we came outside, my husband and I looked at each other and we just knew that we had found the perfect place for Renee.

Renee first came to St Elizabeth’s in 2005. Whilst we were sure the placement was perfect, it was very difficult to let Renee go. In all her life, Renee had only spent one night away from us. It was very difficult to do ‘the right thing’ when in effect it changes your whole life.

First Renee went in to an all-girl bungalow. We were allowed to stay for the first few days, which made things so much easier for us. Although we didn’t see Renee because we understood the importance of setting a new routine, we knew we were there if she needed us.

It was very clear that there would be lots of new opportunities, both in education and socially for Renee and St Elizabeth’s made our lives feel normal. Renee seemed happier and we started to relax and be able to enjoy family life.

All of the staff seemed to really value her and all the other young people there. When Renee achieved something, they were all as proud of her as we were!

When Renee turned 18, after several months of transition, she moved in to Nichole House (the respite unit) until the ‘right place’ was available. She then moved into one of the Adult Home bungalows: she has her own room and bathroom and her every need is catered for. She has a structured day taking part in activities she enjoys. All of this is possible due to the dedication of the staff.

We felt worried about the transition from ‘student’ to adult. If anything, things seem to be even better now. Renee is happy and healthy as she can be and the staff seem to love her as much as we do.

When we look back it is difficult to remember how bad things were for Renee and us as a family. St Elizabeth’s changed all of that for us, as they have done for many others. St Elizabeth’s gave us hope, and still keeps giving...

When we discuss St Elizabeth’s with our friends, they always comment on the mileage we do. We try to bring Renee home most weekends, it is really important for us to retain our family links. We think it is important to Renee too.

We have always felt that St Elizabeth’s have gone a million miles to make things right for us as a family. Since Renee arrived at St Elizabeth’s she has been given lots of opportunities, and the health to enjoy them. Without this high level of support it would not be possible. We can never thank St Elizabeth’s enough for giving Renee a new life. It is a joy for us to see her healthy and happy.

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