“What makes you different makes you beautiful”

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“It’s Oscar. Hi Oscar,” I heard a little voice shout over the noise of the preschool room. We’d just walked through the door and the boy who’d noticed us walk in came over and he and Oscar greeted each other with a big hug. It was a lovely exchange and made me smile. I realised though that I hadn’t seen the little boy in the preschool room before and considering his size I decided he was probably just starting in that room, and knew Oscar from when they used to be in the younger children’s room. As I left them to it, I also noted that it had been a long while since Oscar had been greeted that way. I mean sure, he always gets a warm welcome from the staff but it dawned on me that the kids his own age, the kids all fast approaching school age, didn’t seem that fussed by Oscar anymore. Not like they used to be anyway.

And don’t get me wrong, it appears Oscar couldn’t care less. He always strolls in confidently and happily, hangs his coat and bag on his peg (with my help, of course) and then off he goes. He doesn’t seem phased in the slightest that none of the other kids are in the least bit bothered by him being there… It’s just me. Over sensitive, over protective me. Because here’s the thing; while I know Oscar has friends, I can also sense a shift in those friendships since his mainstream typical peers have started to grow up and Oscar, although doing well in so many areas, has in some areas started to lag behind.

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I’ve heard the phrase “Our kids are more alike than different” a lot recently. It’s in reference to the fact that children with Down Syndrome are much like their mainstream typical peers. I think this is true in a lot of ways. Oscar is cheeky just like most other (almost) 4 year olds. He’s inquisitive and adventurous, caring and sensitive to how you’re feeling, determined but defiant just as much as the next kid. But in a lot of ways, he so very different from his typical peers and of late I can’t help but pick up on this.

I’m not saying always, but sometimes, he acts differently than the others kids do. When he’s upset or unsettled he chews on his fingers and cries. When he’s excited, he runs in circles doing his breathing in and out of his nose thing. When he’s cross he head butts doors (seriously, I won’t bore you with it now but the head-butting thing is a whole other issue for another day). When his brother Alfie falls over, instead of helping him up, like other 4 year olds might, he drops to the floor dramatically himself. He doesn’t always act like a “typical” little boy and that’s because he’s not.

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You see, I kinda feel like we’re at this in-between stage. When he was younger, other kids his age had no idea he was any different to them, but now he’s older and friends his age have become more aware, it’s suddenly really obvious to me that they see him differently.
The other day at a friend’s house, Oscar, a couple of his friends his age and a 19 month old were playing in the kitchen. The oven was on and knowing a certain someone was not to be trusted, I walked in and told them that perhaps it’d be a good idea if we all went to play in the living room instead. To which one of the little boys (Oscar’s age) turned to me and said “Yes, the babies aren’t allowed to play in here either.” And just like that, I realised that he was referring to the 19 month old but also referring to Oscar as a ‘baby’. In his eyes, because Oscar’s not able to talk to him like his other friends can, he’s classed as a baby. Simple as that.

And I get it. To an almost 4 year old, when a child that’s a little bit smaller than them in stature, still in nappies and doesn’t have the capability to engage in conversation about the latest Paw Patrol episode they watched, in their eyes, of course they’re younger than them.

When Oscar and his friends are all playing together, sometimes he plays beautifully but other times he might decide to tip the entire contents of the toy box onto the floor because he knows it makes a great big noise that he quite likes. When this happens the other kids his age, just look on in bewilderment. And when Oscar decides that he’d quite like to join in the girl’s role play game at nursery, when they all lie in their makeshift bed, with heir blankets over them, sometimes Oscar decides to take off all the blankets and run away with them, laughing to himself. When this happens Oscar is met with shouts of “Nooooooo Oscar. Stop it. I was playing with that first”. And every once in a while, when Oscar decides to give his friend a hug because, well, he’d quite like one, he just goes in for the tightest longest hug imaginable, leaving his friend looking at me, with a “Please save me” look in their eyes, because it’s kinda squishing them. You see, Oscar doesn’t always get that tipping the contents of the toy box on the floor is just annoying. And stealing the girls blankets? Yeah, so not cool. Oh and the tight hugs? Oscar hasn’t quite grasped the whole personal space/boundaries thing yet. We as adults get all of the above but to an almost 4 year old, although they might like him and find him loveable at times, at the moment, mostly I think they find him kind of annoying.

It’s not just the 4 year olds though. Oh no, even Alfie, my two year old has started looking at me slightly puzzled at some of the stuff Oscar does. And he’s only frickin 2 for goodness sake. And the truth is, I don’t blame them. I don’t blame any of them. I totally and utterly get why they’d react that way. Hey, when Oscar does some of the things he does, I myself raise an eyebrow too.

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It’s interesting though because the other day we were in the park and some older kids, I presume around 7/8 years old took a shine to Oscar. He stood there watching them play for a while, then started laughing at them because they were jumping off the climbing frame. The more Oscar laughed, the more they played up to him. The jumps became bigger. The pretend falls to the ground became more melodramatic. And the more Oscar dissolved into fits of giggles, the more attention they paid him. They helped him as he climbed up to join them and talked to him and even though he couldn’t talk back, they didn’t seem to mind. They accepted him just as he was, regardless and as we moved away, I heard the two kids say to each other: “Aaaaahhhh he was so cool and funny wasn’t he?”
“Yeah so cool”

My point being, when kids are a bit older, they might “see” different, but they’re ok with that.

So I’m wondering at what age should the whole DS thing be brought up? A while back I thought it’d be much later down the line, but I’m thinking now it might be earlier. Some people might be of the opinion that nothing needs to be or should be said. Some think the sooner the better and others might say wait til they ask. There is a part of me that thinks, children Oscar’s age are just these small, little people who couldn’t possibly understand but then there’s the other side of me, the side that hears a child refer to Oscar as “Naughty Oscar” that feels it might be best to sit them down there and then and explain that it’s not that he’s naughty, just that it takes him a little longer to understand.

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A few weeks back it was World Down Syndrome Day and on that particular day, a whole bunch of us were going round to a friend’s house for lunch. My friends had suggested we all wear our mismatched socks including the kids and as I arrived I was so incredibly touched that all of them, every single one, had remembered to put their brightly coloured socks on. I had wondered though, had the kids not questioned why they were being asked to put on odd socks that day? Did they not think it was ridiculous and want an explanation? I asked my friends. A couple said that their kids hadn’t even noticed. Another said that she made a game out of it and said: “I know, wouldn’t it be really funny if we all wore different socks today?” Which was met with a giggly “ok”. But then there was one other. The little girl who I’d have said would be the kid who’d have questioned such silly antics. So when her mother said that they were to wear mismatched socks today, her response was of course: “but why, mummy?” “Because it’s World Down syndrome day and Oscar and his family celebrate it.” She thought for a while and then she asked, “What’s Down syndrome?” Her mummy, a very dear friend of mine, is more than capable of explaining it to her little girl but said rather than launching into it there and then, deflected the question and said to me she’d wanted to check with me first, as to what I’d like her to say.

So here’s the thing… What DO I want her to say? What do I want any of my friends to say to their children? What do Chris and I say to Alfie and Flo when they’re old enough? What do they then say it their friends when they’re asked the question, “How come your brother looks, talks and acts that way?” At what point do I want them to say it? Today? Next month? Next year? In a couple of years? I’m not sure. Some children, like the little girl who was puzzled by the mismatched socks might be ready for that chat now, others may not understand yet.

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When the time’s right though, I think I want them to say that Oscar is a little boy just like them. He’s a little different to you and me but that that’s ok. I want them to say that just because he acts the way he does at the moment, they must try not to get cross and try to be patient if they can. That things just take him a little longer to understand, but that he’ll get there in the end. I’d like them to tell them that he may find some things harder than other people do but that perhaps there are some things they might find difficult in their lives too. Not everyone’s going to be good at everything after all. What I would love them to tell them though, is all about Oscar’s strengths. That he’s brilliant on the trampoline and on his scooter. That he can run super-fast just like they can. Oh and when they’re feeling sad, Oscar will notice and he’ll give them the biggest hugs. And finally, that just because he can’t talk to you at the moment, doesn’t mean he never will. One day hopefully he’ll be able to tell you exactly what he thinks of Paw Patrol.

I’m guessing my worries are heightened because later this year Oscar will be starting school. I know he’ll be supported well, as thankfully we have the 1:1 hours he needs, but I worry about friendships forming. Will he make friends? I know in his own unique way he’ll be able to communicate with his classmates but will they have the patience to persevere? All any mother wants for their child is for them to be liked. A friend and I were talking recently and we said that none of us can tell our children who to be friends with or who to like. They’re going to make up their own minds… Even at the grand old age of 4. All we can do is hope that they find their own way in life. She also said she hoped Oscar would be in her daughter’s life always. I said I hoped so too.

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A few nights ago my sister Clare sent me a photo of my niece Bella standing next to a poster. The poster had on it some of the images of the photographs taken at the “This is me” exhibition (the charity we belong to had put on as part of WDS Awareness Week) and amongst those images was a photo of Oscar. Bella had asked my sister if she could have the poster. Clare had said, “of course but why do you want it?” To which Bella replied “Because I want to put it up in my room and show all my friends my cousin Oscar”. When I read the message from my sister my eyes welled up with tears… Bella is 4 years old. Not so long ago I asked my sister Clare if Bella understood about Oscar not being able to talk that well (yet) and she replied with the following…
“She often now notices people who have Down Syndrome and will say, he or she is just like Oscar aren’t they Mummy?… And when I say, yes and what is it that Oscar has, she doesn’t say Down Syndrome, she always says “magic” because he’s just that extra bit special isn’t he?”

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I’m not sure she completely understands the whole DS thing but what I do know is that she loves him despite the fact that he ruins their games sometimes, takes a toy off of her that she’d been playing with or gives her hugs that are just that little bit too tight. In spite of all those things, she truly, truly loves him. We CAN’T tell our kids how to act, feel or who to like (and I would hate for them to feel forced to be friends with him) but I hope that one day, his peers will understand just what he’s about. A little boy more like them, than different, sure… But someone that they want to be around, regardless.

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