This is a special year for Jane Bawden’s family starting with her twin children who turned 21 in March. She writes about their journey to adulthood.
My children’s lives started with drama in March 1998 – they were born 11 weeks early.
Now, they are well and truly launched into adult life.
My daughter Laura is away studying at university, my son Hugh continues to live with my husband Royden and me at home in Auckland, and both are enjoying all that adult life is offering them.
Their birthday was an opportunity for reflection on those 21 years; our hope and dreams for our children, our role as their parents over that time and going forward and our hopes and dreams for ourselves too. It was also an opportunity to acknowledge the people who have played such a role in supporting our son’s development and our family as a whole.
Our son had an initial diagnosis of “failure to thrive”. In time that diagnosis turned into diagnoses of a rare chromosomal disorder and non-verbal autism.
But 21 years later we no longer think in terms of diagnosis; we celebrate a thriving young man who contributes to his local community, who managed without spoken language to communicate to us that he wanted to attend his local high school and did not want to attend activities congregated on the basis of disability. He told us he was ready to leave school at the same age as his peers and wanted to stretch his wings with a variety of roles and activities which for years I would not have thought possible.
In between times there have of course been many, many challenges, at the top of which I would put extreme sleep disturbances and a stress response of running away to reduce anxiety. These are largely behind us now as we understand more of what makes our son tick and he understands more about how to communicate effectively with us. His life is planned around his interests and needs and includes a support team of excellent staff whose personal values and aspirations for our son, match our own.
When I reflect on the biggest influences in our son’s life, it is the family support organisations that have truly changed the trajectory of our thinking and so the path that our son has taken.
In the early days Standards and Monitoring Services (SAMS), Standards Plus (now Imagine Better) and Parent to Parent created opportunities to meet other families and space to learn about the machinery of government and how we might influence policy or the application of policy, how to identify the talents and interests of our children, how to create and hold a vision for our child and for our whole family, and how to plan to achieve that vision.
We learnt how to stay strong, about self-care, and we had the chance to off-load to families who “got” us.
In later years I have been hugely influenced by Janet Klees and Michael Kendrick, both of whom visit and teach in New Zealand regularly. I developed a set of bed-rock Enabling Good Lives principles as the foundation for the life we continue to work for with our son – everything for us rests on the concept of “right”.
The right people, the right relationships, the right roles, all supported by the rights enshrined in the United Nations Convention on the Rights of Persons with Disabilities and reflected in the Enabling Good Lives principles.
And now my main influence is autistic adults who generously give back to the wider community through social media and publications such as this journal, creating space for families to learn from them how best to support their autistic family member.
One of our support team is autistic and she is my first port of call when I am trying to work out what my son’s behaviour might be communicating and how we could respond. We are very lucky to have her input.
It is a genuine privilege to be part of Parent to Parent and Altogether Autism, knowing that families and individuals will continue to be supported as my family has been supported, for many years to come.
- Jane Bawden is chief executive of Parent to Parent NZ, a barrister, trustee of Spectrum Care and a company director
- Parent to Parent supports families/whānau in the disability community and provide expert autism information through the Altogether Autism service with Life Unlimited.
- This article first appeared in the Altogether Autism Journal, Issue 1, 2019