SOME 15 years ago, I watched a Japanese animated video, called “The House of Acorn” ( I think ). It was about the lives of children with learning disabilities and their families. The one thing that stayed with me all these years was the poignant wish of a mother, for her teenage son to die one day before her.
Since then I have slipped in and out of that despairing thought. What will happen to Nicholas when we pass on? That was a huge question that had me digging my head deeper into the sand.
My husband and I talked about that eventuality but never sat down to really plan for that. Subconsciously it felt too exhaustive for me because I could only see obstacles and challenges.
Fortunately, “our kick in the butts” moment came, in the form of Jacquelyn Ang, a very proactive parent who announced a three-day workshop at the Oasis Place in Brickfields that focused on the morbid topic of parental death and significant changes/challenges to the person with learning difficulties/disorders.
There was no excuse not to go because as parents, our top worry is the continuation of the quality of care and support. I fear all sorts of things because I know my son is very vulnerable and needs quite a bit of help.
The workshop, as outlined by Jacquelyn, was about preparing information and data about the person with disability so that whoever takes over can do it with as little disruption as possible because all there is to know is documented and explained.
Jacquelyn showed us the “Document of Personal Information” that she has prepared about her son, Ryan. It detailed everything about him; his personal likes and dislikes, family, abilities, food, travel, communication style, language phrases, medical history and, legal matters, among others. She also reminded us that the document needs to be reviewed from time to time to ensure that it stays true to the needs of the individual. She also encouraged us to take videos because there would be things or situations that are best explained with videos or at least photos. Jacquelyn Ang can be contacted at firstname.lastname@example.org for information about her workshops.
After the workshop and homework, I trawled the internet for more information related to the care of the special needs individual after the parent(s) pass on. I found the site of an organisation called Foundation for People with Learning Difficulties and they have written a comprehension planning guide titled “Thinking Ahead Guide”. You can buy or download the guide at http://www.learningdisabilities.org.uk/content/assets/pdf/publications/thinking-ahead-planning-guide-23042013-D2143.pdf?view=Standard
This is a well-thought-out guide. Although it is UK-based the main objective is the same, that is, “…for families with an adult relative with learning disabilities who would like ideas to help them think about and plan for the future”.
As you read, do not get into the grind of “why is it not happening in Malaysia”, because it is a waste of time and negative emotion. Always remember that your intention is to learn to enhance.
The UK Care Act 2015 is very clear and the supportive role it plays in the lives of people with learning disabilities is spelt out for all to read and understand. The foundation used the principles and rules under the Act to develop this guide and teaches people what are important and how to achieve their objectives.
Chapter 2 of this guide, “Making plans for the future in a person-centred way”, is rather similar to Jacquelyn’s Document of Personal Information.
Each chapter has a short introduction, stories about people, questions to help you decide, suggestions on what or how to do related things, templates for documentation and reading sites for further information. There are nine chapters. In chapter Four, the topic is “Talking about difficult subjects” like puberty, sexuality and bereavement.
In Bereavement, I like the idea of creating a memory book/box which can include pictures, things and even a smell reminiscent of the person who had passed on. The person can go through the items with another person and talk about what are in the box/book. A parent at the Jacquelyn’s workshop created a beautiful memory video for her child after the death of the father.
The other chapters cover areas like “Building friendship and support network”, “Planning for emergencies” , “Housing and Support” and, “Legal planning”, among others.
As I did my follow-up homework and read the “Thinking Ahead Guide”, I reflected on my son and family members.
I felt a little lifting of spirit because I am seeing the light at the end of the tunnel although the journey still looked kind of long. Further, as I write down all the things I could think of about Nicholas, a sudden realisation dawned upon me, that, Nicholas has achieved much but I was too busy to notice.
All the years of pursuing one therapy after another in order to get him to talk, do the right academic stuff, even to hoping that we would discover a special talent, have blinded me to the achievements and goodness of this young adult. I forgot that it was to be all about him and not about me.
That was the bonus of the workshop and I realised the importance of parents sitting down and reviewing the development and progress in that child’s life because expectations and needs change through the years.
We have to talk to the person and not to the symptoms and in hoping for change, we have to change ourselves.
“Miracles happen everyday, change your perception of what a miracle is and you’ll see them all around you”. Jon Bon Jovi