WHAT DO YOU SEE?

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additional needs, creative, down syndrome, down's syndrome, equality, family, inclusion, independent, love, music, pre natal, pregnancy, special needs

A few years ago, a headline run by The Independent completely took me aback. It made my heart stop and I felt confused. The paper ran with “M&S to feature disabled boy Seb White in their TV Ad”

Disabled?? DISABLED boy?? Whaaat? The headline made my cheeks flush hot, I was actually horrified by it. My son isn’t disabled, is he? And how could the word disabled be more important than his name? Ironic too, seeing as the whole point of him being in the advert was to see past his “disability” and see what a typical kid he is.

If you aren’t the parent of a disabled child then you are probably thinking I am delusional. Of course Seb’s disabled you’re thinking….. But, here’s the thing. Yes, technically Seb is disabled. On paper he is disabled. He has Down’s syndrome. But I genuinely don’t see it. I just see Seb. Seb that is full of magic and mischief, Seb with a razor sharp wit, Seb who has a tendency to run off, Seb with stunning big blue eyes, Seb with a lust for life l could only dream of.

But it hasn’t always been that way. 24 hours after my precious first baby arrived earth side, we were told of concerns that he had Down’s syndrome. My world literally fell apart. My ABSOLUTE worst nightmare. MY child? Disabled? Not just “different” to look at but a learning disability too. Somehow the learning disability aspect was the hardest thing to stomach of all. I remember a midwife giving me the Mencap contact details and I felt sick. How could I have a disabled child?

As I frantically devoured text book after text book, desperate to take an element of control in a hopeless unchangeable situation, I would check off each physical characteristic as I looked at his precious face and body.

Sandal gap – tick

Upslanting eyes – tick

No nasal bone – tick

Flat features – tick

Broad stature – tick

I would look at Seb’s beautiful face, with a heavy heart, mentally photoshopping his “features” away. Imagining what my baby would look like if he didn’t have Down’s.

All I could see was “Down’s syndrome” – and I was too scared to even contemplate what the learning disability would “look” like as he got older.

Bit by bit the hurt began to lift as I fell in love with Seb. My baby, my boy. Over time the diagnosis became less and less, his personality came to the fore, and Down’s syndrome became just a very small part of who he is. That’s not to say I am in denial or pretending he is anything other than who he is. I am not ashamed at all of my son having Downs syndrome, in fact these days I am rather proud of it and how it has shaped me as a person.

So, I forget. I FORGET that he has Down’s syndrome. At times I have to remind myself, when I have had a particularly infuriating day of him running off, dashing in front of a car, refusing to move or listen or acting as though he has downed a bottle of vodka on the way to the supermarket. Because I forget. I often feel really guilty that my patience is so thin with him, because I’ve fogrtotten that he doesn’t see or understand the world in the same way that I do, or his siblings do, he is not being malicious or deliberately naughty. As his wonderful school often explains, all behaviours are for a reason.

I don’t see his “features” either. I happen to think Seb’s button nose and massive blue almond shaped eyes are what makes his face so beautiful. I would love to take credit for them but these are how that extra chromosome has added to Seb’s unique genetic make up.

Last week we went to visit some lovely friends over the Easter break. Their house is something out of a dream. It backs onto acres and acres of woods. A paradise for children, adults, walkers and dogs alike. A beautiful, fresh Spring day made for a perfect opportunity to go and clear some cobwebs away. We put on our wellies and set off.

If you have read many of my previous posts, you will know that Seb LOVES dogs. Whatever journey we take, we engage with every dog we pass. We even joke Seb is a little like a dog – boundless energy, lights up a room, needs walking daily and will do anything for a biscuit! We have taught Seb to ask if it is ok to stroke the dogs he meets, just in case they are not child friendly.

For every dog we meet, we enjoy the most wonderful interactions. On the beach, also over Easter, we played for 10 minutes with several dogs on the beach. Each owner introduced their dogs, let Seb throw balls, let him hold their leads and even gave him treats to treat them. One lady taught Seb to get the dog to raise his paw, which he loved. And once, a few weeks back, we got talking to two homeless men on the streets of Bath. The engagement happened because Seb asked if he could stroke their dogs. They chatted for a while about our cat Moomin, and the cartoon of the same name. As we walked away one of the men said to me “You’ve got a diamond there. Really precious” and I set off swollen with pride and the biggest lump in my throat when I thought about how much magic Seb spreads wherever he goes.

Back in the woods, it wasn’t so. Yes, we had seen many, many dogs. It was the woods after all. A great Dane, a few mixed breeds, black dogs, terriers. Each owner beaming at the interaction. It made our “walk” very slow and quite tiresome at times as we had to stop and chat each time, but as ever it was a wonderful thing to watch and I have no doubt that each life Seb brushed past was lifted a little that day.

And then we walked into a clearing in the middle of the trees. An affluent looking lady, about my age, perhaps a few years older, was walking her pedigree breed of some sort up a hill. It was a medium to large sized dog, on its lead. Brown, with shaggy fur. The lady had two boys with her too. I would guess their ages at about 10 and 12.

Seb ran up the hill towards the dog. I knew what was coming so casually followed after him.

“Exxxxcuse me” he stuttered, something that always tugs at my heart, sweetly looking up to catch her eye.

“Please can I s-s-s-s-trrroke your dog?” he added.

The lady quickly glanced across him but then refused to make eye contact, she ushered the dog quickly and told her kids to hurry up.

He said it again. Same response.

I quickened my pace to try and catch up with him. My heart was breaking into a million pieces.

“Come on Nellie!” she sternly said to the dog and pulled it’s lead to fasten it’s pace. Wow, I thought.

“Hellooooo Nellllie” Seb said in a cute, high pitched voice, the one he saves for his baby sister and pets.

Nothing.

The woman reacted as if she was being hounded by a knife wielding maniac, riddled with a contagious, tropical disease, and I could feel the hurt rise and rise up inside me. My beautiful, beautiful boy, who consistently sees the best in everyone, being out and out snubbed by this stuck up woman. Even if she was short of time and in a hurry, she could have easily said “Sorry young man, we have to be quick, we are off home” or similar.

I could not fathom a single reason why she would be like this. And then it hit me. Oh my god. He is disabled. She is scared. She is uncomfortable. She sees disability. Worse than that, LEARNING disability – and she is running for the hills as if she is going to catch it. She is panicking that my son is going to taint her “perfect” existence. All she could see was a label. She couldn’t see the boy who lays the table, or the boy who gently strokes my head when he comes into my room in the morning. She couldn’t see the grandson, or the cousin, the nephew, brother or the friend. She couldn’t see the boy working tirelessly to learn his maths, or improve his writing. She couldn’t see the boy who reads Topsy and Tim books to his little sister. She couldn’t see the little boy who is a whizz on his scooter, or the child who likes to eat Vanilla ice cream, always Vanilla.

All she saw was Down’s syndrome. Yet in that 5 seconds I saw so very much of who she was. It stayed with me all day.

But today, a few days later, I pity her and her outlook. To be so blind, to live such a blinkered, smooth existence.

But maybe, I could have been her, had I not been given the chance to learn.

Imagine that? How awful.

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6 thoughts on “WHAT DO YOU SEE?”

  1. Hi – a really interesting and insightful read; Seb sounds a great little fella who brings such k lot to your life and that of those around him. I’ve written my first ever blog post(s); I’d love to compare and contast, and mainly share, our experiences of having a child with DS.

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    • HI there, so sorry for the delayed response. Thank you so much for your kind comments and lovely insight into your own experience. I would love to read your blog!! Please do share. All the best, Caroline

      Like

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