Have you come out of an interview and thought “I could have answered that question better”?  I recently had the privilege of being  interviewed for a podcast by Nicola Payne from ‘MacIntyre Families’ about my experiences of being a carer for Bettina who copes with a learning disability and autism.  I think the interview went well.  Being Bettina’s Dad – this month’s Family Podcast | MacIntyre (macintyrecharity.org)  There was one question I thought I could have answered better:  What are the barriers you faced as a parent carer and how did you overcome them?

Since the interview I have thought about those barriers and how we tackled them.  There seemed to be so many obstacles for Bettina.  We faced these hurdles and obstructions, almost on a daily basis in her early years and we probably saw them as part of our normal life together as a family. 

Once Bettina had a diagnosis (which can be a barrier for some) then came obtaining  Speech & Language therapy; special needs education; transition to appropriate Sixth Form education; adult support which meant finding people with autism training/awareness who could support Bettina appropriately; a personal budget; ongoing life skills – the list goes on!    

Hopefully, by sharing our experiences of smashing through barriers, they may help you to navigate through the systems and processes you face both in life and work.

So, what did we encounter?  

  • Budgets: we would often hear a common soundbite “if we allocate funding to your daughter, we will have to take it away from someone else” at different stages of her life. 
  • ‘Professionals’ who believe they know what is best, coming to meetings with pre-conceived ideas of “one size fits all” mentality for a person with a learning disability.
  • ‘Professionals’ with outdated ideas or ways of working.  When Bettina was quite young, Victorian institutions for people with a learning disability still existed and with this came institutional thinking.   
  • ‘Professionals’ feeling, they were losing control, or having the need to control events.  They were not used to being questioned or having to justify their obstruction.
  • Delaying tactics – “let’s review this in six months” either hoping you will change your mind, or you will give up.   

Do these barriers resonate with you?  They are often similar barriers I have faced in my careers too.

A barrier can be something such as a rule, law,  policy or a person that makes it difficult or impossible for something to happen or be achieved.

Bettina’s parents top five tips for the barriers we face

  1. Learn the language.  At the outset of our campaign to obtain the support and resources Bettina needed, we were still part of the Army family (my first career) with its own language and jargon, so we recognised how that could easily exclude people who were not part of that culture.  Therefore, we quickly learned the language used by Local Authorities to the point where we even knew their acronyms – doing this meant we were able to have more effective conversations.
  2. An indomitable will to succeed.  With our unconditional love for Bettina, we stood firm to overcome the barriers.  Perseverance is a powerful tool. 
  3. Preparation and Diligence with careful and persistent work and effort.  From the outset we were always fully prepared before our meetings, having read the necessary policies, procedures (and sometimes even the legal framework) we rehearsed what we would say and the answers to anticipated questions during a ‘pre-match’ meal. We found it was important as parents to have a consistent approach when challenging a barrier for Bettina’s support. 
  4. Playing the long game.  Knowing we would not get what we needed for Bettina at our first (or second) meeting,  we knew that we would eventually get what B’ was entitled to  – even if it involved wearing everyone down with our persistence and ‘killing’ them with our kindness – we were in it for the long run.
  5. Working within the system, rather than shouting from the side lines.  This was a conscious decision we made minutes after Bettina was excluded during her first term at school.  We have found we could make effective change, not just for Bettina but those coming through the system by involving ourselves and contributing to the change we wanted to see not just for Bettina but also her peers. 

And what Bettina does to smash through those barriers

  • Perseverance – a single mindedness despite difficulty or delay in achieving success, knowing she has the staying power to succeed.  This is something you will see in yourself over a period of time too. 
  • Finding and Making Allies. With her winning personality, Bettina draws in people, so they feel they have a stake in her life and her success.  We share her vision and capture their imaginations, so it becomes their vision too.
  • Tests the Barrier – We have observed Bettina repeatedly testing the obstacle(s) she encounters until they are no longer insurmountable.  Bettina is in it for the long game too!
Bettina at work in her Garden Centre. Access to work can often be a barrier for people who cope with a learning disability

“Sometimes life is so busy that you forget where your story started and the journey, so it was lovely to be reminded that our one constant: unconditional love, can take you through the barriers – together. 💕”

Joyce Raw

I am just back from a super morning with Bettina in Frinton-on-Sea.  Bettina is a bit of a star there, whichever shop we go into people light up when they see her and ask her how she is.  Bettina: “I am fine thank you”.  After the beach we sit on a bench and ‘B’ puts her feet up.  An elderly couple on another bench said, “she always does that”. I had not noticed them before, but they clearly remember Bettina.

Related:          Being Bettina’s Mum & Dad: Ogres of Optimism  https://livelikearaw.wordpress.com/2017/04/03/being-bettinas-mum-dad-ogres-of-optimism/

Related:          Being Bettina’s Mum & Dad: Discovery & Endurancehttps://livelikearaw.wordpress.com/2016/02/02/being-bettinas-mum-dad-discovery-endurance/