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Stephen and Joey's Story
Positive living and learning for people with epilepsy and other complex needs

Stephen and Joey's Story

Stephen talks about St Elizabeth's Centre, and how the Centre has supported both himself and his son Joey, a College learner and former School student - click on the link above.

Stephen also says:

As every parent knows, leaving your child in the care of other people is a nerve-wracking experience. But it’s much, much harder when your child is profoundly disabled and vulnerable. You immediately fear the worst, and feel torn in two as you eventually drive away. That was certainly our experience when we first left our Joey at the School at St Elizabeth’s Centre. So much so that we nearly turned around on the M11 to pick him up and take him home with us.

Because Joey is a vulnerable young man — severe learning disabilities, non-verbal and intractable epilepsy — and, at first, found the transition from home to a residential place very difficult: how would he ever settle in, we thought, and was he going to thrive? What’s more, we’d got so used to fighting for him that it was difficult to accept that a public service could do him justice.

But our fears were misplaced and Joey settled in quickly and found his way around. And the staff at St Elizabeth’s soon got a measure of how he worked and what he needed to be happy, stimulated and safe. We’d phone regularly and always get a clear sense of how he was. And we’d drop in, sometimes without warning, and were always made welcome. Picnics in the apple orchard, long walks across muddy fields, visits to farms, local pubs and churches: going to see Joey has become part of our family life.

There was a period when the epilepsy was dreadful and every so often we’d get a phone call saying that Joey had been taken into the local hospital. Ashen faced, we’d drive up to Harlow, and find him in the hospital being looked after by one of his carers from St Elizabeth’s: happy and healthy and everything under control.

As the years have gone by it’s become clearer that the great strength of St Elizabeth’s is that it’s driven by a core ethic, and there’s a real sense that everyone who works there is committed to helping and keeping safe some of the most vulnerable people in our society. It’s so much more than just a service: it’s a way of life that makes a real difference to all its residents, and by extension, their exhausted, challenged and worried families.

And now, almost five years later, Joey bounces up and down with excitement as we drive in through the gates. Here, we know, Joey is safe. Here, we know, the epilepsy will be professionally managed and he’ll be given every chance to progress. And here, we know, he’ll live in a place ringing with the sounds of laughter, love and kindness. Nowhere is perfect, but St Elizabeth’s always strives for the best, and we’ll be eternally grateful for what it’s given our Joey and the many other disabled people in its care.

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