Lucy

Thirteen year old Lucy has an enigmatic smile that can light up a room and a family that dote on her completely.

But life has not always been as rosy for Lucy, her Mum, Dad and brother. As well as having epilepsy, Lucy is also on the autistic spectrum and is pre-verbal. Without the support of The National Centre for Young People with Epilepsy (NCYPE) and a place in one of its 52-week residential children’s homes, Lucy’s parents fear they would have had no other option than to contemplate long term fostering for her.

Lucy had her first seizure when she was one. At the age of two and a half she had her first electroencephalogram (EEG) to measure the electrical activity of her brain. It found continuous epileptic activity which nobody could see. Lucy’s Mum Sarah explains: She had little jerks but we thought it was a mannerism.

Our knowledge of epilepsy was violent jerks and foaming at the mouth, says Sarah. Lucy’s jerks were infrequent but by the age of nine had got progressively worse and she’d been prescribed lots of different medications.

In the same week that we were told Lucy wasn’t reaching her developmental milestones, she was diagnosed with severe learning difficulties and we were told she would never live an independent life, remembers Sarah. It was a real shock.

Lucy’s brain activity was like a light switching on and off constantly, which explained why she hadn’t been a happy baby. The epileptic activity was worse at night.

When Lucy was six she came to The NCYPE for the first time, accessing a three-day diagnostic assessment in its onsite Medical Centre. After the assessment, Lucy’s family noticed absent periods and Lucy was later diagnosed with myoclonic seizures which are brief shock-like jerks of a muscle or a group of muscles, and absences which momentarily affect her consciousness. Lucy also had a couple of drop seizures – she seemed to be trying all types, Sarah recalls.

Both Sarah and her husband Rob are teachers which gave them useful ‘insider’ knowledge to the statementing process which they realised they would need to pursue to get Lucy the education she needed. A statement of special educational needs is awarded by the child’s local education authority (LEA) which takes advice from professionals working with the child. It describes all of the child’s needs and the specialist help or provision they will need. They were fortunate to get Lucy statemented at two and a half years old.

Lucy attended a special school for severe learning difficulties until she was seven. It was excellent at education, Sarah remembers. But the school didn’t see Lucy’s myoclonic jerks and they thought she only had mild epilepsy and that we were making something out of nothing. Lucy also had quite aggressive and challenging behaviour.

Nobody mentioned residential schooling to us, Sarah says. A friend of Sarah’s mentioned The NCYPE and as it was within travelling distance from home, they decided to try and get funding for a place.

Sarah and Rob then entered into a funding tribunal to get Lucy 24-hour care at The NCYPE. Lucy didn’t like going to and from school each day, says Sarah. We wanted her to access a 24-hour curriculum which we just couldn’t offer her at home. It was at that stage we considered long term fostering as we couldn’t carry on caring for Lucy full time.

The tribunal took almost two years to the day but was successful. Lucy joined The NCYPE when she was seven: Now she’s at The NCYPE she’s much better, Sarah says proudly.

Prior to going to The NCYPE, Sarah and Rob had been offered some respite help but initially only for a weekend at a time. Lucy’s epilepsy was difficult for the whole family, especially for her brother who is three years older than her. Lucy thinks her brother is the best, Sarah fondly says. He went through a phase where he wouldn’t talk about her and her behaviour meant that he couldn’t invite friends home if Lucy was at home. It made a huge difference when Lucy went into a 39-week residential provision at The NCYPE and our son has done really well at school which he may not have done if Lucy was at home full-time.

It was difficult taking Lucy back after the holidays Sarah emotionally remembers. Photos and objects of reference helped Lucy’s transition between places.

Lucy’s behaviour has also notably changed. Sarah says: Lucy’s less violent now as she has more ways of expressing herself. She would get frustrated because she couldn’t speak. She now says ‘b’ for please, makes some sounds and also does some signing. Lucy’s also has a Talk 20 communication aid which she’s really good with although sometimes we’ve had to remove the pictures of crisps and chocolate because she kept asking for them! laughs Sarah. She also understands almost everything you say to her.

Lucy’s doing well at school and is moving to the upper part of St Piers School next academic year. She also enjoys going home and playing with her brother and visiting local parks, something her parents couldn’t do with her before.

Moving to one of The NCYPE’s 52-week residential homes has just added to all of Lucy’s improvements, Sarah smiles. Lucy’s much calmer and happier and she’s still within travelling distance so we can see her as often as we can. It was harder for me to send Lucy 52-week but she’s really benefited from the additional care.

We can always ring the residential house, Lucy’s tutor and The NCYPE's medical staff says Sarah reassuringly. The staff are wonderful – we were impressed by the imagination of the staff at St Piers School, they know just what Lucy needs to do to progress.

The NCYPE and its 52-week provision have given our family the best of both worlds, Sarah smiles.