Being Bettina’s Dad – Being a Carer.



Being Bettina’s Dad – Being a Carer – A blog written by our Managing Director, Steve Raw.

This is Bettina. Bettina copes with autism and a learning disability.

Bettina is our pride and joy.

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.  Being Bettina’s Dad: When love is not enough to keep you Safe and Secure – Leadership in the Raw

As I write this article, I have just received an invite from MacIntyre Families @MacFamilies https://www.macintyrecharity.org/  to be interviewed for a podcast.  MacIntyre Families work with “all families ,siblings and circles of support to ensure voices are being heard, understood & importantly working together.”

So immediately I started thinking of the answers to potential questions and writing an article I could share which may help other carers and people who have an interest in supporting people.

Joyce and I are super organised and from the moment we got together we started planning.  Having two daughters was always the plan, although I must admit that being a parent carer was not in the action plan.

“Most things don’t work out as expected but what happens instead often turns out to be the good stuff”  Dame Judi Dench

On reflection, and 35 years of supporting Bettina, Dame Judi was quite right that it does indeed ‘turns out to be the good stuff’.  ‘B’ as she is often referred to by her family, has enriched our lives and has taught us on what is important and what really is unimportant.

How has she done this?

Part 1.  “Everybody has plans until they get hit for the first time”.  Mike Tyson

1992 was not our family’s best year.  Both my mum and father-in law passed away within weeks of each other; I had a severe bout of flu at the beginning of the year, and Bettina was permanently excluded from school halfway through her first term!

  1. “What doesn’t kill you makes you stronger” and those experiences drew us even closer together as a family knowing that we were dependant on each other and meant that we could bounce back and take on the world on behalf of Bettina.
  2. Money was super-tight at the time, as we had only just bought our first house and the interest rates skyrocketed to 15%, but we managed to find some money for a week in Great Yarmouth, our first holiday as a family – we still reminisce about that holiday – but we have found that when Bettina spends (intensive) time with her family on her hols she progresses at an increased rate, and she certainly did that year.
  3. With lots of teamwork, perseverance and love we got through 1992. Bettina quickly returned to school under its new leadership and enhanced provision.

Part 2. “Make up your mind that no matter what comes your way, no matter how difficult, no matter how unfair, you will do more than simply survive. You will thrive in spite of it.” —Joel Osteen

We thrived in spite of it:

  1. Joyce set up a support group for carers which morphed into a Carers Centre which also provided for Young Carers – the most vulnerable of carers.
  2. In 1996 on retirement from my Army career I started a new career in social care supporting adults with a learning disability. I am still thriving 26 years later as a Managing Director for Dosh dosh.org supporting adults with a learning disability to have more control and independence with their money.
  3. Over the last 30 years Bettina has brought laughter, fun and joy to her family. We have grown together while always keeping a sense of perspective thanks to ‘B’. I truly think there is nothing we can’t face as a family.

 

Part 3 – “I believe in being strong when everything seems to be going wrong. I believe that happy girls are the prettiest girls. I believe that tomorrow is another day and I believe in miracles.” Audrey Hepburn

 

Five fun things we get from being a carer for Bettina:

  1. As Bettina does not appear to have any concept of age both, Joyce and I are expected to function at the same energy level we did 30 years ago. I live a completely different life to the one my parents did at the age I am now.
  2. While Bettina’s verbal communication is limited, she does astound us sometimes with her opinions when she suddenly joins in the conversation at the dinner table. This often happens when I am pontificating about something.  Bettina suddenly comments “I don’t care” which has us all falling about with laughter.  A side eye from ‘B’ tells us she meant it.
  3. Bettina’s sayings and phrases are unique to her (‘B’ often creates new ones too) and she often expresses them in public – we know what they mean but fortunately the general public do not!
  4. Bettina gets us out of social engagements we don’t want to be part of. No extended family on Christmas day for us.  “Bettina needs calm and quiet”
  5. Bettina helps us find and hold on to our “inner child” too easily lost when you become an adult: Being Bettina’s Dad: Finding your inner child and not forgetting to lose it – Leadership in the Raw

A quote for Bettina’s family and all carers:

“When written in Chinese the word “crisis” is composed of two characters – one represents danger and the other represents opportunity.”

Thank you, Bettina, for giving us a lifetime of opportunities.

Bettina with her big sister, Jennifer, and her dad.

Woolacombe Beach 2022

Picture courtesy of Joyce Raw (‘B’s tiger mum)