The Shield

I wanted to tell you about the photograph at the top of this blog.  It was taken, by me, some time ago now, when I was on a holiday with some other families whose children also have Down’s syndrome.  What I wanted to imply, when I chose it for the header, was not so much a sense of doing the same things differently (we are riding on recumbent bikes – more strenuous than you would think, and more difficult to perform a handbrake turn with than we imagined), but the idea of the journey.

When I started writing, I wanted to tell you about the journey into parenting that we have taken; the similarities with the ordinary population, and where we differ.  I wanted to share with you both the joy, and the pain, that comes along with Down’s syndrome, to bust some myths and, maybe, to help someone who was a little further behind.

You can read my advice for new mothers here.

Something that I began to realise, pretty early on in the life of this blog, was that what I had to say was particularly relevant to educators.  I was so often mis-interpreted by them, so often shut out because of misunderstanding.  As with the children we teach, we teachers behave differently towards parents when we have more of a clue about where they are coming from.  First impressions give way to knowledge.

You can read a post on what it felt like to be shut out of Sam’s education here.

You can read a post on the difference having a child of my own, and that child having a learning disability has made to me as a teacher here.

You see, the thing that many people don’t understand, because they have not had this experience, and because experiences around childbirth are shrouded, private (posts on loss here and here, and my story of what it was like when Sam was born here), personal and unshared beyond the coffee morning and the toddler group, is not only the effect of traumatic birth, but the aftershocks of being told that there is something wrong with your baby an how these shudder through your life.  They ripple through everything, especially in the early years, and in those I include the years of primary school.

Now, I’m not saying that this is peculiar to Down’s syndrome.  I share many experiences with women I have met who tell of the rollercoaster that is childbearing.  But there is something about it, there is something about the road we travel that I see echoed again and again; a reclamation of joy, a declaration that their baby is not a monster or a risk, but a baby.  A person.

The thing about it though, is that we all travel at different rates, and we all have different skills and attributes (as do all parents) that help or hinder us on our way.  For me, I was physically weak for a long time after Sam arrived.  I had home visits from a lot (A LOT) of health professionals checking that I was OK, that Sam was OK.  We were on first name terms.

We got on great – but I knew why they were there and it wasn’t out of the goodness of their hearts.  Traumatic birth + health problems with baby + a load of other things is a recipe for post-natal depression.  I was cared for, protected, watched over – and I am grateful.  Sam and I were able to pick ourselves up and get on with enjoying life, in part, because they were there, shielding me.

They allowed me to construct my own protection, to blow a bubble around my family that kept the cold hand of fear away.  Would he ever walk?  Would he ever call me mummy?  Could we ever have a conversation?  Would he need heart surgery, tube feeding; would he die?  I put these questions behind a cell-thick wall, and there they stayed.  For years.  The future was not known, said I.  I stamped it into the pavements and the footpaths near my home.  I’d smash anyone’s crystal ball.  Fortune telling?  There ain’t no GCSE in that.

Some people felt it was wrong.  I was setting myself up for disappointment, for a fall.  I ought to know the truth of the matter and they regularly, or so it seemed, pricked my bubble.  They reduced the thing of beauty that I had constructed, not tough like a tortoiseshell, but fragile, iridescent and shimmering, almost a mirage, to stinging tears.  I would find myself in a state of unprotected rage while I painstakingly blew it again, while I calmed the storms and got on with life.

Others seemed to think that I should somehow live in the bubble forever, that I should be permanently trapped within the assertion that it isn’t so different, that once his needs were met and adjustments made there was no reason why he couldn’t go to Oxford, or, as in Australia, that somehow he might be ‘cured’, or grow out of it.  The implication being that his congenital condition is minimal, negligible, as if, somehow, his needs and diagnosis could be separated, like the threads in twine; that mothers like me should have to justify those needs again, and again, just in case he was faking it.

I haven’t written about the day I was made his appointee, because I am still trying to come to terms with it.

Now, though, I find that I am not blowing bubbles any more.  This is not to say that I don’t need the protection – I do.  Life with Down’s syndrome is just as fearful, just as challenging, more so in many ways, as it ever was.  But now, my energy is not so much given to the carefully constructed walls of the protective bubble as the walking of a tightrope.

You see, I still believe that the future is not fixed.  So that I can get up in the morning, and make the packed lunches, check the teeth are brushed, and all those other things that mothers do before the working day begins, I need to believe in change.  I, like every other mother, need hope; for today and for tomorrow.

But I am not a fool.  I know that hoping isn’t enough.  I know that, while I celebrate the individuality of my son, his beautiful smile and his infectious laugh, he lives his life within the confines of a syndrome.  He cannot escape it.  It cannot be denied.  He needs help and so do I.

My friend Sarah calls it Putting On the Big Girl Pants.  You can read her wonderful blog here.  A while ago, when we were discussing responses to Sally Phillips documentary, you know, the one that asked whether we want a world without Down’s syndrome in it, we talked about the action that we want to see for adults with disabilities – and not just those with Down’s syndrome.  We talked about the difference between the glossed early days of hope and the pierced today of sixteen years later.

You can read about what fear of the future feels like here and here.

When you look at the future from where I am standing, the importance of early intervention, of support in place right from the start, an assessment based on stark facts, informed by a medical diagnosis, rather than cynically taken from behind the bubble, looms large.  Waiting and seeing and crossing your fingers isn’t good enough.

But, you know, she, that young mother with the baby on her hip, she doesn’t need to do that.  She doesn’t need to walk the tightrope, to perform the eyes wide open, heart in the mouth balancing act between gritted acceptance and fierce hope.  What she needs, as the mother of a baby, is those who have walked before; she doesn’t need the deceiver.  She needs the shield.

img_4856I’ll leave this here while we think about the realities of Down’s syndrome, and what this means, practically speaking.


4 thoughts on “The Shield

  1. Superbly written and yes, so important that we are honest and that support is what we seek, not false narratives. I just can’t get my head around the #justaboutcoping hashtag because it seems to rub the faces of the many of us who aren’t coping at one time or another (all of us) in something. Loving life and doing our best at it, whilst hoping for improvements to support i what I hope for. H x

    1. I know what you mean. There is a fine balance to be had between celebrating the positives and being so jolly about it all that it negates the difficulties – which then makes it difficult for us to get the support we need.

      That’s the difficult thing, for me: telling stories that are real and true and don’t either do the inspiration thing or the pity thing! Argh!

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