I recently had the privilege of attending a course on the “Holistic Management of Infants and Children with Down Syndrome” presented by the South African Society of Physiotherapy ahead of World Down Syndrome Day (WDSD) on the 21st March 2013. The date for World Down Syndrome Day being the 21st day of the 3rd month was selected to signify the uniqueness of the triplication (trisomy) of the 21st chromosome which causes Down Syndrome.
On the course we were fortunate to hear from a developmental paediatrician, a mom (what a privilege!) and a physiotherapist. The course left me inspired, invigorated and in awe of the work people are doing to raise awareness, offer support for and to protect the rights of children and adults with Down Syndrome.
When I was younger I always knew I would one day work with children with Down Syndrome, I loved my work experience in Grade 11 (then STD 9!) at a school in Verulum, Natal, for children and young adults with Down Syndrome. I went on to become an Occupational Therapist, specialised in sensory integration therapy and years later, only recently have been fortunate enough to start working with 3 very special people with Down Syndrome. I look forward to these little clients of mine each week, I feel deeply connected to them and somehow closer to our Creator when I am in their presence! I love sharing in the major and mini milestones and successes and feel alive when I can add value or support in trying or testing times for these clients and their families.
I have watched moms; dads and sisters roll with the punches of life and bounce back from the blows that are thrown at them. I have watched parents fight like Tiger moms and Lion dads for their rights and the rights of those they cherish so dearly. I have been fortunate enough to join the “pack” and be a lioness myself at times! I feel most alive when I can share their cross sometimes trying to make it lighter, revel in their joys as if they were my own and in exchange receive a little piece of the purest, unconditional love we get in return from our little Down Syndrome loved ones!
The question of schooling is always something I am asked to offer support with. The questions of mainstream versus remedial schooling and facilitator or no facilitator, academic syllabus versus skills development…these are some of the many challenges that parents have to face, sometimes alone! These are not easy decisions and yet these families have made amazing choices for their loved ones. I admire and acknowledge their strength, dedication, and perseverance. I truly believe, have witnessed and personally experienced the benefit of welcoming children and adults with Down Syndrome into our schools. In many countries, girls and boys with intellectual disabilities lack sufficient access to mainstream education. The prejudice that children with Down Syndrome obstruct the education of others has led some moms to institutionalise their children or simply leave them at home. However, research has shown that diversity in the classroom leads to learning and understanding that benefit all children! The UN secretary had this to say on the matter: “On this day, let us reaffirm that persons with Down Syndrome are entitled to the full and effective enjoyment of all human rights and fundamental freedoms. Let us each do our part to enable children and persons with Down Syndrome to participate fully in the development and life of their societies on an equal basis with others. Let us build an inclusive society for us all.”
This year Down Syndrome International invites everyone across the world to wear lots of socks on 21 March 2013 to raise awareness on this special day. Not just any socks… brightly coloured socks, mismatched socks, long socks, printed socks, 1 sock… maybe even 3 socks (for 3 chromosomes!), just as long as they are socks which people will ask you about! Visit www.worlddownsyndromeday.org/lots-of-socks for more information or www.ds-int.org.
I will be wearing my socks to salute Sarah Jane, Danelle, and Callum this WDSD!