As 2016 comes closer to its end, I feel inspired to detail one of the most beautiful yet challenging years of my life. This year exposed my family to the best and some of the worst of human behaviour. I have been in the company of some amazingly empathetic people and others who fail to recognise the hurtful power of their words and actions.
But let me go back 11 months.
In January of this year, I gave birth to my third child – Lucinda. Lucinda was born with Down syndrome. We didn’t know of her condition until her birth. It was a shock but one we quickly overcame as she is a star shining brightly in our lives.
The medical staff who cared for us were exceptional. They brought us stories of hope and the vibrant future Lucy was likely to have. They are at the forefront of therapeutic and medical advancements available to people with Down syndrome in their early, formative years which set them up for a fulfilling and vibrant life.
Once we emerged from the cocoon of the hospital and its support system 10 days after Lucy’s birth, we came to realise how much of the population is still labouring under antiquated ideas of Down syndrome and the quality of life for its alumni. Their words and actions reflect this limited understanding.
In all fairness to this relatively small group of people, I do not believe them to be bad people just those who have not had to experience a loved one with differing abilities or the varying levels of discrimination and belittling which comes with it. Rather than berate or shame, I wish to enlighten for the betterment of our society and my daughter’s future.
So I would like to offer up a very personal perspective for friends, acquaintances, employers, random strangers and colleagues as a pathway to more empathetic behaviour.
Firstly and most importantly, having Down syndrome does not mean you don’t understand the world around you. Don’t confuse cognitive ability with language difficulty. People with Down syndrome, with the benefit of full access to education, are completing not only secondary but tertiary schooling. For evidence of cognitive and social development, please watch Karen Gaffney’s recent TED Talk. Karen, like all people with Down syndrome, understands the cruel jokes yet not everyone can articulate their objections as eloquently as Karen. I liken it to knowing someone is ridiculing you in a foreign language but lacking the skills to respond.
Don’t presume a child with Down syndrome is a burden because she is ‘special needs’. All children have special needs. Any parent will tell you that and in my case, Lucy’s needs are no where near as intense as her rapscallion brother. This advice most especially applies to insurance companies and schools.
Understand as a parent of a child with Down syndrome, the decision to work or not is not the role or right of the employer. Whatever paternalistic instinct employers may have, it simply was not their place to decide if someone should return to work in these situations. Instead, allow employees the time and space to determine what is possible and think outside of the box. In a time when contract employment abounds to cover maternity leave, sabbaticals, secondments, study leave and military service, why too can’t there be such an arrangement for personal situations?
Appreciate there are two people going through the exact same situation – the mother and the father. And no longer can you assume the father is the bread winner nor the mother is doing all the heavy lifting at home. As a unit, my husband and I ebb and flow to achieve each other’s work and personal commitments. We have always managed – not always gracefully but we have done it. Lucy doesn’t change any of that.
Spend time with people of differing abilities. It is extraordinary the insight and mindfulness these individuals can bring. My experience of people of all ages with Down syndrome is their care and concern for others. If they are open to learning about you then why shouldn’t you be open to them?
Having a child special needs changes you. And not in a bad way but in a great and incredible way. It makes you appreciate everything with much greater intensity. I am a happier person since Lucy entered our lives. This happiness and vibrancy has permeated all facets of my life. Spend time with a parent of a child with ‘special needs’ and their child. Their joy is infectious.
This is not an exhaustive list and perhaps it is too personally motivated but nonetheless, it is a foundation of understanding people with Down syndrome or any differing abilities as people not completely removed from your own life and experiences.