“I thought I would have to teach my child about the world. It turns out, I have to teach the world about my child.”

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It might be the January blues or it might be because I’m on a diet (which, I’ve decided, is quite possibly THE most depressing thing in the world) but of late, I’ve been feeling a little low. I’m not one to dwell on doom and gloom, preferring to look on the bright side of life, but sometimes, you can’t help the way you feel.

Chris and I can’t walk past our local playground these days without Oscar or Alfie shouting that they want to go and play, so as I walked past earlier this week, having only Oscar with me, I said we could go in. It also happened to be around the same time as the local primary school had finished for the day, so it was mega busy. Oscar burst through the gate, clearly delighted his wish had come true and proceeded to run around, asking me for help (albeit in his own way) when he couldn’t quite manage something. He was excited. Perhaps a little over excited and I’m going to say something now that I hope doesn’t offend anyone, but he was doing his “excitable Down Syndrome thing”. Now, I by no means mean that all kids with DS do this, but it’s just something that Oscar has always done. When he’s excited he breathes in and out of his nose really REALLY fast. As I said, he’s always done it, from a very young age… But now that he’s 3.5 years and other kids who are 3.5 years don’t act this way, it’s really obvious that it’s his “DS thing”. So he was doing this and all of a sudden I felt people looking at him. To be honest with you, I haven’t felt this for a long time (the looks, I mean) but I felt their stares. Groups of women were looking over. Some were smiling, some were doing that sideways look, where it’s like they’re pretending not to but they obviously are and don’t want to seem rude and then some were just blatantly staring. Perhaps they were intrigued, perhaps they’d never seen a child with DS in the park before but all of a sudden I felt very alone. Normally one to hold my head high, it seemed I couldn’t that day. Instead, after a few minutes (and because it was also absolutely freezing) we left. To add insult to injury, Oscar, who didn’t want to leave, did that “I’m going to go crazy” thing and wouldn’t go in the pushchair, ridged and defiant and all I was thinking, is that the women were thinking “aaaahhhh look at her with her special needs son… how sad”. And I hated that I was thinking that.

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Which leads me to the title of this piece – “I thought I would have to teach my child about the world. It turns out, I have to teach the world about my child.” Am I really going to have to spend the next however many years, explaining who my son is and why he does the things he does?

I was cross with myself that evening. Why had I reacted like that? I guess some days, regardless of how strong a person you normally feel you are, sometimes there’s no fight left in you. I think that day, I was tired (I blame the lack of sugar) but I was cross that I’d let others get to me.

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There is no doubt that Oscar’s communication is really coming on. We have had a few more words recently and his signing is evolving all the time, but as far as speech is concerned, he’s definitely an “I’ll do it in my own time” kind of a kid. It doesn’t worry me as such, as I’ve heard from others that some kiddies with DS had little or no speech at this stage and then once they started school, they took off… But I can’t help but feel sad from time to time when his frustrations come into play. The other day we had a few of Oscar’s friends round to our house. They’re all “typical” kids and have known Oscar for a while now. I take an interest in how they play. Some play in pairs. Some play alone. But sometimes I watch and see that Oscar tries desperately to join in but can get left behind. This particular time, one of the boys gave Oscar a toy to play with. It was a kind gesture so I said to Oscar, “Say thank you”. I always say “say” but for the most part he can’t actually “say” what I’m asking him to, more often than not, he’ll sign what I’m asking. In this case he did just that. But the little boy he was talking to turned to me, looked me straight in the eye and said “Oscar can’t say thank you because he can’t talk yet”. He was right. He can’t say “thank you” yet. And I guess in contrast to his other friends it would appear that he can’t say much at all. But that kid floored me. I mean, it was like a punch to the stomach. The cold hard truth delivered by a 3.5 year old. He was absolutely right in what he was saying but my god did it hurt.

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I’m guessing his Mummy, my lovely friend, had spoken to him about the fact that Oscar can’t say much yet. I’m guessing she did indeed “teach” him just that. I found myself that day reiterating what she had probably already told him, that he will talk one day, we hope, and that it’ll just take him a little longer. There I was again. Teaching the world (a 3.5 year old) about my child.

And I’ve promised myself not to do the whole comparison thing. I don’t know how many blogs I’ve written over the past two years, where I’ve given it the “I’m not comparing anymore” line, but how can a parent not? I feel like it’s been heightened even more recently, as since Alfie’s turned two, his speech is coming thick and fast. I mean obviously I’ve never had a “typical developing” child before (and believe me, I’m not saying Alfie’s the next Einstein) but my goodness, how the hell does he know all these words? I have sat with Oscar through endless therapy sessions, practised our words and matched our pictures. HOURS!!!! And then Alfie swoops in and just says things, just like that. Things that I haven’t even taught him to say. Like “moon”. We got out the car after nursery last night, he pointed to the sky and shouted “moooooon”. WTF? How?

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I’m pretty sure though, adding to my blues, is all the talk about the NIPT test (Non-Invasive Prenatal Testing) that is now being offered on the NHS. Don’t get me wrong, I can see that bringing in the test will save a lot of babies and give people the answers they have been wanting but equally it makes me sad to my very soul to think that babies like Oscar, will be aborted simply because there’s a lack of education and knowledge on what having a child with DS is actually about. It feels as though our kids have been targeted here and in some countries they’re expressing their bid to eradicate babies being born with DS. Just so unbelievable. Which begs the question, would it really be that bad to have a baby with Down Syndrome?

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Something I hadn’t been aware of before now, is that legally in the UK, if you are expecting a baby that has been diagnosed with Down Syndrome, you are entitled to an abortion up to 40 weeks. 4-0 weeks!!!!! Full Term!!!! I mean seriously? What does this say about having a child with DS? No wonder people are petrified if this is the message this country is sending out as being acceptable. It basically says that my sons life is worthless and holds no value. And that, I find completely heartbreaking

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Perhaps I felt sad in the park that day because of how the NIPT test has been portrayed in the media. I mean, had the ladies in the park heard the news and were now looking at us and feeling bad for us as a family, because if they were, they really mustn’t. I wanted to shout at those ladies watching my son play, that he’s just having fun and instead of being able to shout “Mummy look at me”, like their kids might be able to, he stands at the top of the slide and excitably does his “Down Syndrome thing”. They mustn’t pity us, they mustn’t pity him because he’s truly, truly loving life, as am I.

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I wrote recently about when it’ll be that I can stop worrying about Oscar running off, when he’ll understand the dangers, when he’ll just stand still. I follow other people’s blogs and sites who have kids with Down Syndrome, some that are that little bit older and there’s definitely a fine line between preparing yourself for what lies ahead and knowing just that little too much about what the future might hold for us… but truthfully I take comfort in those blogs, that we’re all in it together.

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What I do know, is that I have never come across another parent of a child with Down Syndrome who leads anything other than a normal, happy life. Sure, there are challenges but then there are in life regardless, right? And the quote’s right, I AM teaching the world about my child. I have to. I owe it to him to show others just how great a life he leads because had we got a prenatal diagnosis just over 3.5 years ago, I wouldn’t have been able to see how our lives would be because fear of the unknown would have gotten in the way. I guess I am still teaching him about the world too. Albeit slowly. He’ll get there eventually. But more importantly than teaching the world about my child, he’s teaching me things every single day… and for that i’m thankful.

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3 comments

  1. Sarah   •  

    Hi Sarah,
    Thanks for another beautiful piece. Everything you write resonates with me, but this particularly so. Not just because of the fact that I have a little person with an extra chromosome, but because I could just picture the park episode. It made me cry a wee bit.

    I feel I am just behind you on this new path life has given us, and I pore over all you post, I suppose to try and get a glimpse of what lies ahead. Because it’s all unknown. I’m scared that we have been safely cushioned so far because Odhran is still only 14 months, so the big bad world hasn’t really affected us yet. And we adore him so much.

    Sorry for babbling, but please don’t be blue. Oscar is adorable and beautiful and the mischief is just hanging out of him as we say over here. I love your posts. Keep up the good work. Xxx

  2. Orla McGrath   •  

    Your son is a cutie… I love the yellow wellies. This is a really interesting read, thank you for sharing.

  3. A great read!   •  

    This was really enlightening. People like you are changing the whole world little by little. Not a lot of people can claim to be doing that.

    Your children are really beautiful btw, Thanks for the post!

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