THE BLOG

Dear Past Generation Mum of a Child With Down's Syndrome

24/10/2014 13:05 BST | Updated 24/12/2014 10:59 GMT

Dear past generation Mom,

I note with respect the hurdles you have faced.

I accept with sadness the lack of support you were given.

I understand the shame that must have once came with the stigma of difference, for attitudes when your child was born nearly 50 years ago were crude, and voiced so much more vociferously.

"Put him away and forget about him and try again for a healthy baby," was the standard line, the accepted way to 'resolve a (perceived) problem'. Or so I am told.

"He's a mongol, isn't he?" was the incorrect terminology used.

While families like mine receive emotional support and early intervention to help our children reach their potential, find their independence, know their worth and how they contribute to society, you faced stares and whispers and were coldly told, "He may never walk or talk. He'll struggle to be continent. He'll die young." Even, "He's ineducable."

And right there, your expectations for your precious baby died too.

Your husband was old school, a reflection of the times. His 'stiff upper lip' was his way of holding you afloat, carrying on regardless, never mentioning the topics you so needed to discuss, for fear of sinking you all. You were the sole captain at the helm of this particular ship.

So, in place of acceptance, of learning together, of acknowledging the individual differences we all possess, a dark and resentful guilt took hold in your heart.

Guilt that came with many of the decisions you have made over the years. A vulnerable child seperated from his family, isolated from society, hidden from view, not given the chance of good education, even ignored or mistreated by others. But you were not alone in your choices. And you were doing your best to swim upstream, against the flow of perceived wisdom.

In place of self esteem and confidence, your child instinctively knew that you and the 60s world saw him as a burden. He knew he was not accepted.

He reacted in the only way he knew how,as any of us would if we were in his shoes. Feeling your unspoken thoughts instinctively, he fully understood what it is like to never be loved unconditionally, to never have anyone feel proud of him, to never hear the words, "Thank you just for being you."

In turn you labelled him needy, exasperating, difficult, childlike, a millstone around your neck. The downward spiral was set in motion.

The worry consumed you, you feared what you could never be in control of. When he was 'out of sight and out of mind' was when you felt most relieved. Yet deep down, you knew you were his best protector.

I've seen you in the Supermarket, crossing the street, between the pages of a newspaper. Your grown up son is always one step behind you, sometimes holding your hand, sometimes not. And you have the anxious gaze of someone wanting to run free, someone not at ease, someone who has too long been on red alert. But who knows where any of us would be if we had walked your walk.

You both have your heads bent low, to avoid our gaze, so used have you been to 'trying not to exist', for although you love your son, you wish in equal measure that he'd never been born.

I cannot judge you, though many do. For you are one of the few that braved the storm, paved the way, created change for those of us who came later, whether you realise it or not. Your resolve has taken a battering, you cannot let go of the dream of a simpler life, yet it is precisely this lack of acceptance that has pushed you to your very limits.

But you can look up now. Please lift your head and meet our gaze. We are looking in your direction to share a smile with you. The world is a different place today and our children are growing up with outcomes that are worlds' apart from those on offer when your son was born. Behind the walkway you beat down, a smoother path has been paved; one of inclusion and acceptance.

Please look up and see. Give our children, young and grown, the rights they are due. Please join hands with younger generations today and don't drag us back to the hardships and prejudices you experienced. Please help us change the world and don't advise other future Moms based on what has gone. Don't pass forward your bitterness. We share more common threads than you know dear past generation Mom.

Please look around you now and see a different way for you and your son. It isn't too late to accept and love him for exactly who he is and to show the world the value that you place on him.

Now is the time to listen to his voice.

The words of playwright and 'past generation Mom' Sue Bessell are so very apt. Sue is the creator of Up Down Boy which was co-written and acted by her adult son Nathan, who has Down's syndrome;

I have an extra chromosome - I stand out from the crowd.

And of me I know - My family are very proud.

I have an extra chromosome - Some people think that's sad.

But that it makes me who I am - I am so very glad.

I have an extra chromosome - Please don't stare and pity me.

For I like you for who you are - See, acceptance is the key.