Dozing on the settee after a hard day’s work my pager started to beep. I woke up and phoned my transport department. They had the call that Joyce was going into labour and they were sending a vehicle round to our flat to rush me to Berlin Military Hospital (BMH). We were 10 months into a two year tour of occupied Berlin and it was still a couple of years before the ‘Wall’ was to come down.
Within a couple of hours our beautiful daughter Bettina had come into our lives. It would be another 18 months before she was diagnosed with severe autism and a learning disability, but that didn’t matter to us (and still doesn’t) she is our beautiful daughter and love is enough.
Bettina is adored and surrounded by love and not only by her family. Her mum was (and still is!) super strong and I was super fit, so thinking what would happen when she became a woman and what could happen when we were no longer there for her was so far ahead it didn’t cross our minds. Fighting for speech therapy for Bettina, now that was a challenge and a completely different story for another time.
A couple of years after leaving the Army I had started a new career supporting people with a learning disability and I was a Registered Manager for a Care Home. I worked with an older father of a daughter who was a mature woman with learning disabilities and was helping her manoeuvre through her life. He said he wouldn’t be around forever and he needed to make sure she was safe and secure.
It made me think, for the first time, and I felt mortal, and I worried about Bettina’s future, realising I was only living in the now or at least in the next 6 months to a year for her. Joyce though, as always, was ahead of me and this had always been on her mind. We started to discuss and we started to plan because now we realised that love would not always be enough.
Fitzroy, a charity which supports people with learning disabilities, has recently published their research findings the highlight of which was that parents hope their sons or daughters die before they do because of their worry when they are no longer around to care for them. When I heard this on BBC Breakfast show I understood. I had heard this from other parents in a similar situation, but I also thought it doesn’t have to be that way.
What did we do?
- Joyce and I talked at length to each other about this
- We did our research to find out what resources were available to us as a family
- We started pulling together those around Bettina who loved her and wanted to be part of her life. We called this her “circle of support” – it was really her network
- We decided that traditional ‘reviews’ when it came to planning Bettina’s future was a waste of time. We wanted to do something which meant that Bettina would take centre stage and lead. We wanted a person centred planning meeting. As there was no one to facilitate it from Social Services at the time as Bettina was in the transitional phase of the 16-19 age group where services dip, I got off my backside and facilitated it
- Bettina’s big sister, Jennifer, was our artist drawing and recording what Bettina and her Circle was telling us and we ended up with a PATH to her Vision to which everyone was signed up.
- Joyce, the ‘Leader of our Gang’ then put it all into a Support Plan (if you want the template let me know as I reckon this is the best ever plan!)
- From the Support Plan came the Individual Budget and Bettina is now living the dream
Becoming a parent to a person with learning disabilities is unique. It changed our lives – and mostly for the better!
As parents of Bettina it has, and continues to be, a pleasure. She has taught us so much about life, even though it has not been without its challenges.
Bettina’s support has taken us through five stages:
Stage 1: Coming to terms with a daughter with learning disabilities and finding ways and support to help her cope
Stage 2: Finding the right education
Stage 3: Supporting her through her transition from school to adulthood
Stage 4: Connecting her to a wider community that is not just her family
Stage 5: To have a great life now and after we are gone
If you are a parent, or you know parents who might be feeling that what is ahead is insurmountable, I want to share with you a new resource (that I take with me where ever I go); a free book full of information, knowledge, tips and templates that will help.
The new ‘Safe and Secure’ book has come at just the right time for many families. It includes everything parents could wish for, especially those coming up to Stage 5. We feel it will be a useful reference book and we will most certainly be dipping into this!
I would love to hear your experiences too – please leave a comment below or send me a tweet @DoshLtd.