In the late 1980s, Autism was not as well known or shared as it is today. There were no programmes such as the ‘A Word’ (currently showing on UK TV) or mini films such as the excellent National Autistic Society’s new campaign ‘Get Involved’, which I recommend to you. When it came to explaining the condition Bettina was coping with to family and friends, we often resorted to asking if they had seen ‘Rain Man’, a ground breaking film at the time with Dustin Hoffman.
Arriving in Colchester in 1989 there was no Support Group for families or a Carers Centre. When Bettina started school at the age of 5 for children with learning disabilities, Bettina was one of the first of a growing number of children with autism and initially they had no idea how to support her (she was excluded within the first 6 weeks!)
What we did have though was Joyce! If you are new to my blog (and if so where have you been??) Joyce is my wife and she is Bettina’s mum. She is ‘Bettina’s whisperer’
Bettina’s early years could be best described as having a mind-set completely in turmoil. For us as a family, we felt that she did not understand her world and it was as if she had just arrived from another planet and she was coming to terms with her new alien world. Whilst coming to terms and supporting Bettina was something we could manage, as we love her unconditionally and she is our beautiful girl, for Bettina it was clear to see she was in a complete ‘daze’ and her nights were often sleepless (screaming and banging her head against her bedroom wall most nights – fortunately we had very understanding neighbours!) and her days spent biting her hand and often others.
With no real help or support from existing agencies, it was always going to be our family who would need to help Bettina dig herself out of her deep hole. We all contributed and we all had input, but ultimately the leader of our gang was, and continues to be, Joyce. There is something about her that is unique in my experience. She is able to interpret Bettina’s mannerisms, behaviours and body language and she is never wrong! “When Bettina does this, this is what she is actually trying to communicate”
What does a “Bettina Whisperer” look like and why does it make a difference?
- Joyce really does live Emotional and Intelligence*. She sees the world through Bettina’s eyes – not her own
- Joyce has always been a people watcher – it might be because she is one of 10 children and used to observing and second-guessing the next move! She spends a lot of time with Bettina, watching her reactions to new events in her life and she learns from each one. It is not just Bettina that she has this ability and gift with – In 31 years of marriage to Joyce I have not known her to ever get it wrong about anyone!
- I often observe Joyce and Bettina communicating with their eyes and also their facial expressions, often to the extent where Bettina reaches out to Joyce’s face to turn it in her direction when she needs to send a message.
- Joyce spends time with those who are significant in Bettina’s life, sharing and listening to other people’s experiences and learning from Bettina. A 360 degree feedback in its purest form.
- To summarise what a “Bettina Whisperer” looks like, it is someone who cares passionately about another person, who has an unconditional love for another person, and has faith in that person to succeed no matter what adversity they face.
Having our very own “Bettina Whisperer” made all the difference to Bettina’s life in her early years, such as:
- Joyce supported her nursery/school teachers with what would be coming next from Bettina. Initially it was hard for her teachers to imagine what Bettina would be capable of in 6 months’ time, which was the gap between what she was achieving at home before it being transferred externally for others to see. On behalf of Bettina, Joyce could articulate this in a way that captured people’s imagination.
- A bond based on a relationship of trust and love. It gave Bettina the confidence that she was being understood and she was not trapped inside her mind.
- Helping Bettina to enjoy life. Despite our dedication and commitment I am not sure she was enjoying her life in her early years, but with Joyce’s leadership (and Bettina’s enormous courage) it is clear for all to see that Bettina now loves her life and she has fun every day. Bettina’s smile warms your heart.
- Being a valued member of her community – if people don’t see her for a while (including people we don’t know!) they will ask how she is.
- Bettina is able to take control of her life and she (assertively) tells us what she wants and needs.
5 things that the “Bettina Whisperer” taught her family, and those who support Bettina, to achieve through understanding that:
- “If I am sad or tearful: This can mean that I am a bit hormonal or may be thinking about something that happened earlier or yesterday – it does not mean that I am in pain”
- “When I am in pain or hurt: I will point to the site of the pain and say “ouch” or “hurt” – I may even cry and not be able to tell you what is wrong.”
- “When I am anxious and do not understand what is happening: I tend to bite the back of my hand and say “I understand” but at that time I need extra reassurance and you can say “its okay, no problem”
- “If you are angry or upset: I will assume that this is directed at me and I will bite the back of my hand or get upset and be very loud”
- “If I am making “noises”: This usually means that I am happy but I can get loud. You can ask me to quieten down by putting a finger to your lips and saying “quietly please” – this is so people do not stare at me for making a noise. I will then say “calm down please” and this means I have understood what you have said.”
A few days ago Bettina had a seizure (she also copes with Epilepsy) we knew it was on the way, Bettina had let Joyce in on the secret a few days earlier and we were prepared.
What Bettina’s mum did next…
At the beginning of the post, I mentioned that on our arrival in Colchester there was no Support Group or Carers Centre. For Joyce this was not only ever going to be just about Bettina, so this is some of the stuff Joyce did next:
- Formed a Support Group for Children with Special Needs and Autism the week after Bettina had been excluded, drawing together the families she had already met with children of similar needs, thereby ensuring that the families would not be “in isolation” or unsupported.
- Took the Support Group into a Carers Centre for people with Disabilities, building the services of the Centre for 12 years and finally finshing up as their Chief Executive for a few years
- Designed and delivered her own Autism Awareness Workshops for support providers providing follow up mentoring and coaching for individuals
- A Guest Speaker not just for Autism Awareness, but also Asperger’s Syndrome (which Bettina doesn’t have)
- Followed up her Mentoring and Coaching of me, taking me from the Army into my second career in Social Care (couldn’t have done it without you mate)
What Bettina did next…
Just search for ‘Bettina’ on my blog www.leadershipintheraw.org she continues to amaze us, but when she gets stuck she lets her “Whisperer” know!
* Daniel Goleman Emotional Intelligence has 5 components
- Self-Awareness – the ability to recognise and understand emotions
- Self-Regulation – the ability to control impulses and emotions
- Motivation – a desire to pursue goals with energy
- Empathy – the ability to understand other people’s emotions
- Social Skills – an ability to find common ground and build rapport
“The most effective leaders are alike in one crucial way: they all have a high degree of
Just amazingly wonderful and having been privileged to witness the relationship that Joyce and Bettina have it is truly inspirational now being a new parent where facial expressions and the unspoken word means everything!
Thanks so much Simon, I shared your comments with Joyce and she was thrilled