Today is World Down Syndrome Awareness Day. 21/03 represents the 3rd copy of Chromosome 21 which is present in all people with Down Syndrome.
It’s hard to believe our awesome little boy is 10 now! He is so very loved.
A son, an adored brother, a grandson, a nephew, a cousin, a friend. He is a brilliant swimmer, a gymnast, a student, a classmate, a potential apprentice. He is a neighbour, a customer, a citizen.
Today, if you are paying attention, you will see lots of pictures like this one! Gorgeous babies and children with Down Syndrome, their smiling happy families, teenagers with their friends. You might hear stories about how people with Down syndrome are achieving more than ever before and it is a day of celebration to show the world that people with Down Syndrome are such valuable members of our community.
It is so wonderful to see Down Syndrome increasingly included in mainstream media, movies, sport and communities. It is amazing to see people today proudly wearing their odd socks in recognition of that extra chromosome (which looks like a tiny sock under a microscope!!) and to promote diversity and celebrate difference.
But it is also important today to highlight that our journey is still filled with challenges. In order to drive awareness and real inclusion we still have a long road ahead.
Children like Noah have to fight hard for equal opportunities in their community. Everybody is agreed that with proper integration in communities, people with Down Syndrome can achieve independent and happy lives, they can work, have relationships and contribute to society just like everybody else does. However, despite this agreement, every possible obstacle is put in their way from an early age.
Families work so hard to help children achieve their goals but they need some help along the way and unfortunately this help is extremely difficult to come by.
Noah is a very capable little boy. He is in 3rd class in mainstream school and he works very hard to stay on a curriculum that has been adapted to his needs. There are a few areas he needs additional support.
He needs some support to help him speak clearly so that he can integrate with his peers, has access to education and friendships. He is on a waiting list for speech therapy in our community for 4 years and still no appointment.
He needs occupational therapy to help him master his fine motor skills so that he can hold his pencil and write clearly in school so he can partake in group activities, tests, maths and literacy activities. He is on a waiting list for 4 years now and still no appointment.
He needs access to technology at school so that he can keep up with the class while working very hard at home on his pencil grip. The state has decided that despite his hard work and perseverance, his IQ does not qualify him for a school laptop.
Despite him only being in 3rd class, I am already meeting secondary schools so that we can work hard and prepare for the next three years so that he can simply attend just like everybody else. He will put the extra hours in, he will persevere with a strength of spirit that is exceptional but he still may not get an appropriate place anywhere. There is no desire among decision makers to make the road easy for him.
Despite these challenges, he is a very hard working little boy. He perseveres and surprises everybody with unexpected skills every day. He will look at you with a satisfied grin when he pulls off a task he knows nobody expected of him! Our adventure is full of love, strength, surprise and laughter but his journey will only see its full potential when we achieve real inclusion.
Our love for Noah gives us the strength to continue the fight but small changes in our community can also make a huge difference.
If you know somebody with Down syndrome, invite them to play, have them at your birthday party, choose them for your sports team, support them at school without losing patience, consider them for a role in your company, sit beside them on the bus, greet them in the street and ask how their day went.
Today is a day to celebrate stories of success, to show the world that people with Down Syndrome have so much to give, that our world is a better place when we all embrace diversity and learn to love and respect each other as individuals.
Put on your odd socks today, the madder and more colourful the better and remember that every little step in the right direction can bring us closer to a world that is more forgiving, more inclusive and just that little bit more colourful.
Happy World Down Syndrome Day from our awesome little family xx