They’re a talking point, colourful, and fun to see. I’m just not too sure they are really about me.
Rename them ‘lots of socks’ if you prefer, instead of calling them odd. The thing is, I’m neither odd nor plural. There is only one of me.
Ah but socks look like Chromosomes you’re keen to explain.
Yes they do, so true, yet you also have those. Minus one of course, but otherwise you’re just the same .
Both should rhyme with humanity.
Oh please don’t feel got at…I’ve worn mine too! I’m always up for some fun, often much more than you!
It’s just you gave me some last year, and the year before that.
And I’ve noticed a pattern forming. A habit; one that leaves me a bit flat.
These socks keep coming, year after year. That’s nice… but there are other things I’d very much prefer.
When I’m older, I might like a job; will you help me find suitable employment? Or invite me to your parties, welcome me, enhance my enjoyment?
Include me at your meetings, give me a seat at the table. See me as your equal and perfectly able to contribute to the conversation in whatever way I can. Whatever the subject may be, especially, no –always – if the subject is me.
Support research into my health so I can live well, like you. Stand up for my rights, remove all taboo.
Help me learn new skills, give me roles to fulfill. I’m very keen to be active and not forced to sit still.
Just imagine – with nothing to do, your days spent at home; you’d get bored very quickly and feel quite alone.
Don’t stay silent when others say my life has no worth. Their influence is strong; complicit in deciding the fate of others like me, well before birth.
Champion me, not only with socks, but with all you can muster. Stand up for me, defend me, be a myth buster.
Give those who will love me all the help they may need To nurture me, teach me, help me succeed.
Don’t abandon them or leave them – at times -feeling so alone. Give them all the support you are able; help set the tone.
So wear the socks if you like; the bright colours I love and am happy to see. So long as you then take them off and walk barefoot with me.
The DSRF are the UK’s only Down’ Syndrome Research Charity. Their vision is a long, healthy, happy life for people with Down’s syndrome (DS) and their families. The Foundation is a charity born out of a parent’s love and a passion for the very best evidence-based interventions. You can donate to their work if you wish here.
I have a nostalgia for certain 80s & 90s American TV sitcoms. The moment I hear the opening few bars to, say, Cheers, for example, my mood lifts, however I’m feeling at the time.
Set in a bar in a Boston, the regulars and the workers all share their lives and experiences with each other. The highs, the lows; the trials, the triumphs. If, like me, you stayed the course of 11 years and 275 episodes, you got to know and love each character. The bar, the decor, the stories, the romances, the heartaches, the people. That theme song:
Sometimes you want to go
Where everybody knows your name
And they’re always glad you came…..
I felt sad the day Cheers ended. Of course it had to end. Everyone was getting older for one thing. Nothing stays the same. Life moves on. Still, I was sad.
This week, my daughter, Hazel, moves on from the only school she’s ever known. She’s been there nearly eight years; since she was two months old.
It’s her school but to us it’s so much more. It’s a place that has not only nurtured, cared for and educated her but us too. A family centred school.
It’s the place that scooped us up and surrounded us with support in those early, traumatic days when she was a poorly baby. The days when we struggled to come to terms with her diagnosis of Down’s syndrome and of what we mistakenly thought that meant for her future, for our future. I was very focused on that diagnosis back then. Unhealthily so. Hazel’s school is the place where I learnt that her diagnosis was not nearly as important as I first thought. It’s the place that helped us find, adjust to and embrace a new ‘normal’ in the midst of all the uncertainty and upheaval that we were facing. It’s the place where I found hope for a new kind of future; a joy-filled one.
A practitioner from the school came to visit us when Hazel was around nine weeks old – barely just home from the hospital NICU – to invite us to join their baby group. At that point I was still in a state of shock and unprepared to be thrust into a world of disability and special needs, let alone specialschools. I remember asking her about the other children in the group. What were their diagnoses? What did they have? What was wrong with them? And though I may not have used those exact words, it’s what I was thinking. I’m so ashamed of those questions now.
Her upbeat answer surprised me: Oh, I don’t know!
Actually, I’m sure she did know, but the children’s conditions were not foremost in her mind. Their names, however, were. She knew them by their names. Harry, Ruby, Jacob, Louise*……children. Each with a name, not a diagnosis.
This school is a place where everybody knows your name.
And they’re always glad you came.
Mainstream education, or indeed society, has much to learn from a school like this. There should really be no need for a policy on ‘inclusion’ when your starting point is the child’s name and not their disability.
This school is a place that has grown so familiar to us. It is our safe place. Our refuge in the tougher times when we’ve needed a shoulder to cry on. Our happy place when there has been so much to celebrate. A place where many new friends have been made.
So many joy-filled days.
Hazel’s happy place.
And as we now must say goodbye to this beautiful, caring, extraordinary, award winning school, we are sad; though we know it is time for Hazel to move on. We are filled with gratitude for Hazel’s teachers, therapists and support staff; past and present. Whenever I see the word excellence I think of them. People who continually go above and beyond their official duties and who are, without doubt, the reason my tube fed, disabled daughter can now walk a few steps or even eat some actual food. People who have crafted and shaped a hope-filled future for Hazel. People who care deeply about all the children in their school and who constantly look for ways to bring out their full potential.
I love how Stephen Kelly, writing about Cheers in the Guardian in 2018 puts it,
“Cheers, after all, always knew how to recover from setbacks. It was sturdy, consistent, familiar – a place where everybody knows your name.”
Thank you to every single person at Hazel’s exceptionallyspecialschool.
We’re so very glad we came.
“Every child, every person needs to know that they are a source of joy; every child, every person, needs to be celebrated. Only when all of our weaknesses are accepted as part of our humanity can our negative, broken self-images be transformed.” ― Jean Vanier, Becoming Human