Sitting on the decking of our holiday lodge taking in the evening view, as the sun gently goes down, Bettina puts her arm around my shoulder. We are on our family holiday and life could not be better. Bettina has come a long way from the days when she couldn’t tolerate eye contact, avoiding physical contact, with a simple form of affection such as a hug being too painful for her. Bettina was unable to verbally communicate until she was 11, due to her severe autism and also her complex communication difficulties.
Bettina always needed to, and still does, work harder than the rest of us with her relationships as she makes connections to express her feelings and relate to people. Where do you start when your world was a ball of confusion and you are not sure why and what you can do about it? We know this because her family have been by her side, every day of her life (and we always will be).
“When someone loves you, the way they talk about you is different. You feel safe and comfortable.”
― Jess C. Scott, The Intern
For those who know Joyce (my wife) and me, it probably won’t come as a big surprise that a few months after we were married, we sat around our dining table in our new home in Plymouth and discussed the relationship we would have with our future children (and hopefully the relationship they would have with us) We had this discussion before they were even born! In our minds we were always going to have children, and we were determined to have:
- A family philosophy (we now have a hashtag for this #livelikearaw and a similar Twitter handle)
- A culture (how we do things around here) which is democratic. I was asking Jennifer our oldest daughter her opinions from a very early age. On one such occasion, a brother in law listening into a conversation we were having said “Steve she is only 2!”
- A set of rules that would apply equally to each of us that covers: Respect, privacy, good manners, etiquette and positive regard for each other
- A set of standards which both Joyce and I would honour: Primarily our children would come first and be at the heart of everything we did (this has included: Career decisions, house moves, types and locations of holidays and budget decisions). Our world truly revolves around our daughters
We had a plan and (since 1985) we have kept to it with only a few tweaks when Bettina was diagnosed with autism and a learning disability when she was 18 months old. Fundamentally nothing has changed in our family relationships.
We think we have got it right (so far) but that doesn’t mean we can’t learn about relationships, especially about making connections and we are constantly learning something new from Bettina, which enriches our lives.
Bettina’s connections, feelings and relating to people
So how does Bettina form relationships, make connections and express her feelings to those who are significant in her life? How does Bettina relate to the people she wishes to have a relationship with? Bettina achieves this by:
- Bettina has no pre conceived views or prejudices towards people who come into her life. So it really is down to you to make an impression if you are going to get her attention
- Relationships have never come naturally to Bettina, so she actively seeks them out
- Bettina will always need to have someone by her side, so how did our relationship evolve over the years so that new experiences no longer fazed her? I believe it had everything to do with ‘trust’ see my blog post Being Bettina’s dad: Trust is a gift you must earn
- Bettina does not hold back her emotions. If she warms to you she will express this with her smile and her eyes smile too
- Bettina has an unconditional love for the people she has relationships with. You only have to see Bettina’s reaction when her PA (Donna) arrives at our home to support her
- Bettina is emotionally intelligent. She is super sensitive to your feelings, can pick up on how you are feeling and works hard to self-regulate her own behaviour. Bettina has a gift for empathy and empathises with those she has bonded with.
“Why is it,” he said, one time, at the subway entrance, “I feel I’ve known you so many years?”
“Because I like you,” she said, “and I don’t want anything from you.”
― Ray Bradbury, Fahrenheit 451
We had the best family holiday, we are a happy family and we are great friends too. So how do you follow a good holiday? Well apart from booking another holiday, you do more fun stuff together in between. This weekend we paired off. Joyce and Jennifer took in a show in London (Jennifer’s birthday present for Joyce) and Bettina and I hit the beach, shops, cafés and a restaurant in Essex.
It was lovely to see the reactions of people to Bettina when we visited the seaside town together. Some of the people whom she has formed relationships with and who had not seen her for a few weeks were so pleased to see her.
“You can talk with someone for years, every day and still, it won’t mean as much as what you can have when you sit in front of someone, not saying a word, yet you feel that person with your heart, you feel like you have known the person for forever…. connections are made with the heart, not the tongue.”
― C. JoyBell C.
When I look back on my life and think about what was I most proud of, it probably won’t be about: the positions I achieved in my careers, the size of my house, how much money I earned. It will be about the quantity and quality of my relationships. I think I can also speak for Joyce (especially as Joyce proof reads, and edits, my blog posts). Our proudest achievement is the relationship we have with our daughters and their relationship with us.