Introducing Henry

Henry is a young man I work with who is on the autism spectrum. I have mentored and supported Henry for almost 4.5 years now. We worked together throughout COVID and have supported each other through many changes and transformations, challenging and supporting each other to rise up. Henry is a talented composer and loves the arts. He always comes to see my theatre works, usually with his mum who is also a great lover of the arts, and Henry and I have seen a lot of theatre together also. Henry and I have an ongoing dialogue about pop culture, social issues, politics, neurodiversity, personal and spiritual development, our personal experiences with navigating relationships of all kinds, the dynamics of the disability support relationship and attitudes to neurodiversity and disability in general within wider society. Henry gave input into this article, which is something I hope to do more of.

Henry and I first started working together through a friend of mine named Aliey, who was co-ordinating a support team for Henry through the National Disability Insurance Scheme. An artist herself she thought that someone with an arts background who also has experience in the disability realm would be a good fit. I am so thankful that she asked me. On one hand working with Henry has run in perfectly tandem with me creating theatre at a steady pace while also mentoring, which I love. And on the other hand, we are good friends. We have such fun together. We have shared many experiences, often working through similar dramas in our lives, like we’re on parallel waves! We sometimes view life as a drama. A sit com. It’s the source of much entertainment for us. But along the way we have also focussed on developing our inner stability, allowing ourselves more freedom to be ourselves at the same time, through small steps. Our consistency towards our goals goes up and down, and we’ve had our challenges. But the main thing that Henry and I have focussed on through our working and mentoring relationship is real life as the source of learning experiences. We talk in depth about anything. Henry was very supportive of me through the time that I got my diagnosis of AHDH and CPTSD, and finally fully acknowledging my mother’s autism, and I have supported Henry towards stability and empowerment in his life too. We create opportunities to practice our ‘inner stability’ through embracing real life challenges as they arise, figuring out how to manage our intrusive thoughts and negative thinking, and trust our inner self as we go. Gratitude journalling was one of the early things we did together, and although we haven’t done it in ages, it has strongly informed our journey.

Grandma

One big experience which Henry went through recently was the passing of Henry’s grandma, Lynette. Henry’s grandma lived with Henry and has been an integral part of his whole life. Grandma was 90 years old, and still full of beans. Although Grandma was experiencing great memory loss, she was always so quick witted in the moment, and she often had us in stitches with her dry retorts. And she never minded Henry and I’s goofy behaviour, breaking into song and dance out of nowhere. She tolerated it with good humour I’d say.

Notes I wrote from Henry: I was very dependent on grandma, years of her waking me up, getting me breakfast, getting me out the door for school. Reminding me of every date and appointment from her diary. Then towards the end of her life, we swapped roles. It happened very naturally. It could have kept going and I would have kept supporting her in new ways. Every day was a new challenge, change happening at a rapid rate as she declined.

In the months leading up to Grandma passing, Henry really grow into himself, taking on more and more responsibility for looking after grandma, making sure he was awake at night in case she had a fall, picking her up on multiple occasions, and calling an ambulance on 3 separate occasions, which is a huge challenge for anyone to trust their judgment about, let alone someone who has been very dependent on others their whole life. Along the way Henry expressed to me that he didn’t think he would be able to cope with certain things, such as if he had to help her on the toilet. But then when he did have to do that, he surprised himself by managing it fine and stepping up to do whatever was needed, growing enormously in his own independence through supporting her. We rarely think we will be able to cope with something ‘unwanted’ when we imagine it happening in the future. But when we are faced with a perceived dilemma or challenge we can actually cope with it. Giving our energy to imagining an unwanted situation creates a lot of resistance, taking up a lot of energy, and can keep us in a holding pattern for years and years, staying where we are and not progressing. Changing these old thought patterns is not easy, especially for ND’s. But Henry kept allowing it to unfold and develop, on several occasions mentioning his ‘gratitude’ for grandma leading him.

During the last week of Grandma’s life she was in palliative care at the hospital. This was a difficult week, with Grandma outliving the doctor’s assessment that she would die on her first night in hospital by a whole week. As much as I could, I supported Henry to visit Grandma during that time, and though she was largely unresponsive, there were some moments of interaction, each becoming more and more fleeting. Some very funny moments too. It was such an honour. Having supported several family members myself through parts of the process, I knew Henry would be empowered this sacred time. There is a special honouring of human life and dignity, that naturally happens at this time of life.

At Grandma’s funeral Henry read this speech he prepared, which I think is magnificent:

For as far back as I can remember I have always been impressed by Grandma. She had an active and outgoing life style that seemed exceptional for her age. Travelling to all sorts of exciting locations, going out to restaurants for lunch and dinner frequently, seeing a new movie at the cinemas almost every week and playing Tennis at the local club. Her life was full and only started to slow down significantly once the Covid-19 lockdowns forced her to be stationary. Although her physical strength eventually started to fade, her inner strength wasn’t diminished.

As life became undeniably more difficult for her as a result of her memory loss and her body becoming more fragile with age, she always, every day, was able to enjoy life to the fullest, because of this uniquely special positive energy that she radiated. Every guest to the house that would meet Grandma would always note how generous and joyful she was to be around. She often would keep the attention of my peers for a comforting time. And she was always there for me when I needed someone to talk to.

Even though she is gone now, and frankly will never return, what will last forever is what she has taught me. She taught me that even in the in the worst of situations, it is possible to stay happy and grateful for what we have now, instead of worrying all the time about things that we can’t change. And by being calm, it helps not just your own inner wellbeing, but also radiates to the larger community. When I am old, I want to be just like you Grandma.

Grandma and I connected on our love for classical music. So I have composed a musical piece over the past 4 days that I will now play in respect to Grandma.

And here is the music, composed by Henry:

The way that Henry and I work together will transform in the future. Both Henry and I are ready to move up to a new level, each in our way. There is something exciting about this. And who knows how it might happen. There’s many possibilities of projects to unfold, and many ideas we have about sharing our experiences in different ways that might be helpful to others. There’s many life changes ahead for both of us too. Although it is changing, we continue our journey, on parallel waves.