World Down’s Syndrome Day: Alex and Marianne
This year, World Down’s Syndrome Day is focusing on the friendships and communities that develop around people with Down’s Syndrome. Marianne, Certitude’s Director of Development talks about her experience of “My Friends, My Community” with her youngest son Alex, who is 7 years old.
From the moment Alex was born and we realised he had DS, his dad and I were adamant that he would go to the same primary school his older brothers attended. Fast forward 7 years, and he is about to finish his last year of infant school and move onto junior school with the same group of friends he has now known since he turned 4 years old.
It was really important to us to start building a community around Alex from the outset; to build a shared history with a wide range of people. It helps that Alex is an extrovert – he knows everyone! In fact, as his family, we sometimes feel slightly neglected and unpopular due to the sheer number of people who say hello to him when we are out and about!
This matters to us, though – that there is a community looking out for Alex, not just his family.
We are starting to see changes in his friendships – his peers are growing up more quickly, their interests are different and yet their feelings about Alex and their natural desire to make sure he is included, at least for the moment, remain the same.
The passion his school has put in to help him perform as best as he can has been hugely important. They take very seriously their role in building the stepping stones for Alex to have a future where he contributes as much as he is, in turn, supported.
At his most recent school review, those who know and support Alex identified their aspirations for his future:
“Alex is independent; he lives independently and reads the newspaper!; Alex is a valuable member of his community, playing his part in society; Alex has a job he enjoys and feels good about; Alex is happy and fulfilled, living life to the full; Alex has a good social life – always having friends to share his jokes and heart with; Alex is a confident communicator, people understand what he is saying even if they don’t know him well; Alex keeps his enthusiasm for learning new things.”
As a result of this, these aspirations are now set in stone in his Education, Health and Care Plan. Until Alex tells us something different, these have become the mandate for those who support Alex, for his friends, family and wider community to not lose sight of and to work towards.