‘I don’t have an extra chromosome; you’re missing one.’

People, for the most part, are incredible. The attention Oscar gets when we go out attracts far more positivity than negativity. If I had a pound for every person who struck up a conversation with me or spoke to him, I’d be mega rich. I love that about our life. Before I had Oscar, I’d get into a lift and there would be that awkward silence. No one would talk, no one would smile. Now we get in a lift and we miss our floor because we’ve started chatting to someone that’s been taken by Oscar. Now, there are lots of smiles and I REALLY love that.

"Lots of smiles"

“Lots of smiles”

My main aim when starting the blog, was to talk openly about my life with Oscar. The ups and of course the occasional downs. I never wanted to sugar coat anything and people have said they enjoy my honesty. Life is pretty amazing but sometimes it can be pretty cr@p! I hope, the blog challenges the hurtful, ‘disability as tragedy’ myth, which in my experience is far more damaging and life-inhibiting than any disability. The blog is all about positive awareness but also I hope it helps people who might take comfort in the fact, that actually our lives, although busy, are pretty “normal” compared to the next person. If it also happens to reach out to any medical professionals that might stumble upon it, I’m asking that they remember that Oscar (and others like him) is a person and not just a hospital number. My main point though, was to diminish any outdated perceptions people might have about bringing up a child who has DS. It was never my intention to get on my soap box and preach but every once in a while, I feel it only right I put the record straight (in my humble opinion of course).

Shopping with my baby brother, Alfie

Shopping with my baby brother, Alfie

Here goes…

I can’t take full credit for the blog this week. I actually read a blog post written by a lady in the States, who also has a little girl with that magical extra chromosome. She talked of well meaning compliments from people that she comes across in day to day life, that drive her round the bend. I couldn’t help but laugh out loud and agree knowingly, as it sounded all too familiar to my life with Oz. And I’ve added a few more into the mix for good measure.

“They’re always so loving and happy!” – Just today I had a lady from Carers Support come round to the house. As I’m a registered carer (which seems a little ridiculous, as at the moment I’m just like any other mummy looking after her toddler), they needed to have a meeting with me to tell me what was on offer- help wise. Trips to Windsor or lunches at Pizza Express apparently. Not altogether sure I’ll be taking them up on their generosity, as don’t feel I qualify as someone who needs help in that way, but it was nice to have been included in the invite. Anyway the lady came in and immediately introduced herself to Oscar. Oscar did his usual, “I’m going to stare at you for a while til you prove to me that you’re nice,” and then breaks into the biggest smile imaginable. And so that happened. She then turned round to me and said, “Aaaahhhhh isn’t he lovely? What a beautiful smile. You know, I’ve worked with a lot people with DS and they’re always so loving, so happy.”
First of all, really? They’re loving and happy- ALWAYS? I mean Oscar’s pretty happy most of the time but some days he’s a complete grouch bag. And I mean super unhappy, moody, tired, wants his own way. On those days, he’s not in the slightest bit loving. In fact I’d even go to say, as we witnessed last week when he was having a meltdown in the shopping centre, that on occasion he’s an actual nightmare (albeit a lovely one). You get the gist though.
So lovely lady of carers support, thanks for your offer of garlic dough balls and a calzone pizza but actually saying people with DS are ALWAYS loving and happy really is quite annoying and I can assure you first hand, it actually isn’t the case.

"Tears and tantrums"

“Tears and tantrums”

“He’s a gift from god!” – Hhhhhmmmm? I’ve said it before, I’m not deeply religious and I’m sure I could go off on one, as could we all, about my personal views. But gift from god? Don’t get me wrong, I feel truly, truly blessed to have Oscar. He’s amazing. But I’m sure people just say he’s a “gift from god” to try and make you feel better. That by saying you’ve been chosen because you’re special enough to receive this gift, means that they think you’ll feel better about it. I don’t believe it. I’m no more deserved or special than the next person… Now, luck? I do believe in luck. I guess I’m one of the lucky ones. ;0)

"I do believe in luck"

“I do believe in luck”

“Only lovely people seem to have children with DS!” – Following on from the previous post, sure I’ve met some wonderful people who have been. Friends, that I know will be in my life forever… But equally not everyone who has a child with DS are “nice” people. That would just be a massive generalisation, surely?

“I could never do what you’re doing, I think you’re amazing!” – What’s that then? Being a mummy? Why would that make me amazing? Seriously guys, I’m just trying to figure all this out, step by step, just as much as the next mummy. Just because I have a child with DS doesn’t make me “amazing”. When people say, I couldn’t do what you’re doing… Do they mean, if THEY’D had a child with DS they’d have given them up because they couldn’t do it? No, I doubt they’d mean that. You just don’t know what you can handle until you’re faced with it. Did I ever think I’d be someone that would have a child who had DS? No I didn’t. Would I have thought back then that I’d have been able to cope? No way. But I AM coping. Not always well. I get some stuff very wrong. But you get on with it, don’t you. That doesn’t make me amazing. This. Is. Life.

"This.is.life"

“This.is.life”

“He doesn’t look like he has Down syndrome. Or if he does he looks “mild” compared with others don’t you think?” – I’ve even had a friend, who I love dearly, saying you must be pleased that Oscar’s beautiful. Don’t get me wrong, I’m thrilled he’s cute BUT he definitely looks like he has DS. And that’s ok. I’m honestly really ok with that. While there are certain characteristic physical features that set people with Down Syndrome apart, people with Down Syndrome resemble their families more than they resemble one another I reckon. We actually always say Oscar looks like my dad, Barry… Not that we think my dad looks like he has Down Syndrome ;0) Mini Barry! And Dad assures me he couldn’t be happier with his mini me.

My lovely Dad and his mini me!

My lovely Dad and his mini me!

“He doesn’t understand, does he?” – So here’s the thing. The myth. People who have DS are definitely not stupid. I teach a whole bunch of 7-10 year olds and I can assure you each and every one of them is very much switched on. Just because a child has Down Syndrome, it does not mean they are unable to be well behaved or follow directions. Oscar’s pretty smart, it takes him a few minutes to recognise expectations… hhhhmmmm… I say minutes, I’m probably being quite generous there (but he gets there for the most part). But, when he does, he recognises what is required of him. It’s his call as to whether he chooses to comply. He’s almost two and is most certainly NOT stupid and just because he can’t vocalise as well as his peers, he understands a lot more than he lets on. Do not be fooled.

"Who you callin stupid?"

“Who you callin stupid?”

“He will never know he is different.” – When I first had Oscar, a few people said this to me. At the time I agreed. Here’s the thing though, most older kids and adults with Down Syndrome are aware they have Down Syndrome. Sure Oscar has no clue at the moment, but one day I’m sure he’ll ask me what it’s all about… And I really hope he does. I never want him to feel sad about it or make an issue out of it. It’s just a small part of him. It definitely doesn’t define him.

“Adults with Down Syndrome are perpetual children.”- Actually, they’re not. They are adults, and they happen to have Down Syndrome. I will never forget, when Oscar was very small, talking to a lady who had a newborn son with DS herself. She spoke openly about her fears for the future and how the thing she was most devastated about, was the fact that she’d never be able to have a “proper conversation” with him, unlike her other children. At the time I sat and pondered it and knowing very little, let her comment eat away at me. It took me very little time to figure out the actual truth though. It was teaching my class of children, who made me snap out of it very quickly. Kids and adults with Down Syndrome have much to say. They have thoughts, ideas, and enjoy meaningful conversations. I realised in that class, we talk about their holidays, their likes, their dislikes, their school… Hey, we even have deep and meaningfuls about One Direction with some. So I urge you all, the next time you meet someone who has DS, take the time to listen and be a friend to them. They really do have so much to say.

Oscar with Ella and Lance... 2 of his very best friends, that I hope will be in his life forever xxx

Oscar with Ella and Lance… 2 of his very best friends, that I hope will be in his life forever xxx

“They DO work you know… there’s a lady with DS working at our local Sainsbury’s.” Firstly, I’m often approached by people who tell me their cousins, husbands, sisters, niece has Down Syndrome. While I love hearing people’s stories, it makes me laugh how we all know of someone, who knows someone with DS. It’s then that I’m bombarded with comments like the above. In knowing one person with DS does not mean you then know the temperament/capabilities of them all? Not all kids/people with Down Syndrome are the same. They are all individuals, all of them, regardless of how many chromosomes they have. Oh… And just because there’s a lady working in Sainsbury’s who happens to have DS, doesn’t mean that’s the benchmark for what’s achievable in their world (although I DO know you bringing it to my attention is like you saying, ‘see Oscar’s going to work when he’s older,’ So thank you for that). In fact though, individuals with Down Syndrome are breaking stereotypes all over the place — from running restaurants, to becoming councillors in their local towns, to qualifying as teachers… my friend even told me she’d read about a man who has DS, qualifying as a doctor recently (thanks Letitia). Hey, If you don’t know someone with DS in your life, you’re most definitely missing out… So I guess it’s good that you know your cousins, husbands, sisters, niece after all! ;0)

image

As I said, I really do know that all these comments only come from a nice place. Most of the time people are trying to help, to make me feel better (which I might have needed a while ago, but now, I promise I’m ok). When people make the effort to talk to Oscar and I, to engage him in conversation, or talk to me about how he’s getting on, it warms my heart. There is so much positivity out there and by having Oscar, I am thankful I have been exposed to that warmth and love.

Back in January this year, when I first started writing, I wrote about the ridiculous things people say. There’s of course still the odd comment, where someone might not say the right thing but I now try to educate and to put myself in the place of the other person, who like me, may not have known what to say. I openly invite conversation and questions.

On Saturday, I had whizzed into town and was rushing home, when I saw a lady walking towards me with her teenage son. She was holding his hand and he was shouting “hello” to passersby, obviously trying to get their attention. I could see people avoiding his gaze or worst still, literally jumping out of his way, seemingly afraid of him. The boy and his mother approached me. “Hello,” he said, “Hi, how are you?” I replied. He looked shocked someone had actually spoken back to him, “I’m from Sussex,” he said. It was completely irrelevant and really nothing to do with my question, but nevertheless, I replied with, “Are you? I’m from Surrey”. He smiled, a massive smile and walked on. I’m guessing he had some kind of learning difficulty, who knows? What I do know, is that it saddened me that people had avoided him and his mother that morning. That people felt they couldn’t just say hi back. Because, take it from me, a relatively new mother with a son who has additional needs himself… By far, the worst thing you can say to a mother of a child with Down Syndrome, is nothing at all.

 

"Love"

“Love”

8 comments

  1. Margaret Jarman   •  

    A very interesting blog, I love Oscar he is so cute, as of course is his brother Alfie. I look forward to seeing their little faces every day on Facebook xx

  2. The Future's Rosie   •  

    This is the best post I’ve read in an absolute age! So brilliantly put. Congratulations on your MADs shortlisting, I really hope you get it and look forward to meeting you on the evening 🙂 Thanks again for such a great post which is so extremely open and honest.

    Tom x

  3. Lilian   •  

    Hi Sarah you write so beautifully definitely another vocation amazing. I always think I am saying the right thing and realise from your blog that I make some of the same mistakes. I have done the same as you did with the boy with learning difficulties and have loved the response especially from the mother. Keep on writing and I do hope I can catch up with you and your handsome boys at sometime. Lots of love Lilian xxxxx

  4. Auntie Nixy   •  

    Amazing blog #so proud

  5. Chris   •  

    Well done buns, lovely read.

    Proud parent and Husband

    X

  6. debby   •  

    Yes. Totally get it. @debrakannan- instagram.

  7. Downs Side Up   •  

    Brilliantly put and yes, I sat and nodded at each and every point.
    Hayley x

  8. åsa   •  

    Dear Sarah! I’m so glad that I found you’re blog and your Facebook page. You really write about things /people I have to meet every day. My son was born in September 2014 with Downs syndrome. So far, he’s almost just like my other 3 kids. Maybe a bit “later ” with some things. He has a weak (don’t know If you say like that in English ) back.
    I have met people saying to me, like every day, that it doesn’t show that he has Downs. It does! And I’m proud of it.

    I’m thinking about starting a blog about my son and you and your family is so inspiring.

    Thank you and keep up the good faith!

    Love from Åsa in Sweden.

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