Meet George: I Am No Poster Boy
Down's Syndrome Diversity
I have always believed in respecting and celebrating the diversity that exists within the Down's syndrome community and I try to show this through a wide range of personal stories on the Downs Side Up Family Stories page.
Families differ in the range of approaches to life they have, the early interventions they implement, what and how they advocate for their loved ones and even whether they believe an apostrophe or person first language is important or not. The Down's Syndrome Association supports everyone who has Down's syndrome.
But it is even more important to recognise and showcase the kaleidoscope of people with Down's syndrome with their infinite combinations of taste, personality, race, culture, sexuality, strengths and needs. There is no such thing as a cookie cutter template for Trisomy 21, and each and every individual has worth and a contribution to make to their family.
Making Chromosomes Count recently ran an article on this important subject in its magazine.
And social affairs journalist Saba Salman says in her brilliant book Made Possible: Stories of Success, a collection of tales by people with a learning disability, there are many types of success and they come in many forms.
A Mother's Words
You can follow George's story over on Facebook here at I am no Poster Boy. But for now, it's over to Tatty to put it into her own words:
|George with his parents. "We are just a regular family."
"I have long felt that most of what I have read on social media over the years celebrates the most able in the Down’s syndrome community.
Don’t get me wrong, I am completely happy to celebrate these people and their achievements and I will continue to do so with great pride that they are our trailblazers, changing perceptions and raising awareness! They deserve all the publicity they get.
As Chair of a local charity for families who have children with Down’s syndrome, I often visit new parents with their gorgeous little babies in their arms, and the early shock and fear in their eyes, and I do not tell them about George. George is just not the person they want to hear about. It is too soon. So when they ask me about my own son I skirt the subject and talk about the other wonderful children with Down’s syndrome I know and how well they are doing, which indeed they are.
You see I also teach children with DS, so I know! New parents need to hear the positives and the successes - as indeed I did when George was born. But even so, I began to wonder whether I could write about George’s challenges honestly, but with my innate positivity on social media – the way things really are for us.
You see we are just a regular family
At times I admit we are pretty exhausted and maybe we have more than our fair share of tears and worries. But on Judgement Day I will say hand on heart that we had a good life.
|I am No Poster Boy: "Life is full of difficulties, differences and joy."
There must be a way of writing about George which tells the truth: the difficulties, the differences and the joys without doing a disservice to the advocates working so hard within DS community. Unfortunately it took years for me to actually get to this point and now that my boy is almost 18 I have decided to do it.
So recently I started his page ‘I am no poster boy’ on Facebook and Instagram, and I am his voice because of course in reality he actually can’t speak. I wanted to give him that voice. The one he’s never had. And I wanted him to speak for all the families out there who are so like ours.
I hope I’m doing it well and that I’m doing credit to the beautiful boy that he is and I hope that people will see that life with my son, who may well be non-verbal, have dual diagnosis Down's syndrome/Autistic Spectrum Disorder and need help with everything, is indeed a fulfilling, valuable, happy life, full of love.
And it is love which matters more than anything. It is love that conquers all 💛