The elephant in the room

So here’s a question for you, do you tell people your baby/child has Down’s Syndrome (obviously you don’t if they don’t have DS!)?

It’s certainly not my opening line when meeting new people, but I do tend to casually throw it in there just to clear the air and acknowledge the obvious.

Even though Audrey looks less and less “downsie” (our choice of phrase, one used to be cute, not offensive) to me everyday, I do know that she has the characteristics and strangers will either clock this and know, or at least wonder.

We actually do sometimes start to think it’s not obvious, but then we look at other babies with DS and she is quite clearly in their crew. It’s funny because it means we often look on other babies with extra “ahhhs” because they look like our baby.

Our first experience of a stranger actually acknowledging Audrey’s DS before we’d said anything was a barmaid (early 20s?) in a pub we were celebrating my Nan’s 95th birthday in. She just said “Down’s Syndrome babies are extra cute aren’t they?” And to be honest I felt a little surprised for a second (only because I hadn’t heard anyone just come our and say it like that) but I just smiled, said yes and moved on. But it did feel strange. Oh so they can see it…!

Another time, we were at a friends’ BBQ where lots of families we didn’t know were milling about. A child of around 6 was playing near Audrey and asked me why her tongue was sticking out. I just said she was dribbly and teething and it was just something she does. But at the time I had a little moment where I realised I was so used to Audrey’s tongue sticking out, it hadn’t occurred to me that this might be ‘something different’ about her that others would notice.

One of many strange worries I had in the early days, was of someone recognising her DS and saying something very unpleasant. Perhaps asking me if she was ‘retarded’ or a ‘mong’, neither of which have cropped up at this early stage. As time went on, I did start to chastise myself (“What decade did you think we are living in?!?”), but actually had a mum of a 3 year old boy with DS confirm someone did once ask if he was a ‘mongoloid’. I was stunned, but she said it was a very old lady and she was actually very nice, she just used a dated word and meant no offence.

In our short 15 months in this world, we haven’t had a lot of negativity to deal with. In the early days, there were some people who struggled with what to say and made some comments that were… Awkward… But mostly well-meaning and not nasty. People just saying how ‘devastated’ we must be or how ‘awful’ the news was… Which, once you’ve moved on and embraced the baby you’ve been given, is not they way to describe the happy event of having a baby.

My uncle also had a classic line… When we were discussing sleep and night feeds (which every one is obsessed with when making baby small talk), I referred to our NCT group and said we were lucky as some of the babies were waking a lot more than Audrey… To which he said (somehow thinking I was taking about a group of babies with DS and that some of them were ‘worse'(?) than Audrey); “Oh yes, some of them can be very disabled, can’t they?”. Yeesh.

In fact that was probably the main crux of any early negativity – misunderstanding that 90% of the time I was entering into a discussion about babies in general, not specifically babies with DS. Telling my mum we had started baby sign; “But she’s not deaf, I know some of them can be, but you can tell she can hear”. Cue discussion about baby sign being useful for all babies.

Mostly I worry that it my own insecurities/defensiveness that makes me read innocent comments as negative. When people ask about the possibility of us having baby number 2, I always feel as though they are surprised when we say we do want more children or I feel the question is worded as “So do you think you’ll have any more children?” and the end of the sentence (that is unspoken) is “…after what you’ve been through with this one?”. Yes, I’m reading into this too much!

One of the strangest places to encounter negativity (which was really just someone being honest, but made me uncomfortable), surprisingly came from another DS mama. I was at our pre-school DS group when Audrey was probably only around 5 months old and I was keen to meet a lady who had chosen a nursery near us for her little boy with DS and I wanted to know what the nursery was like etc. She came to the group with her new baby boy (without DS) as her oldest was at nursery that day.

She told me I was lucky Audrey kept her tongue in her mouth (things have changed a bit since then!), because the tongue hanging out “did not look good”. And then she told me how they had the amniocentesis for their second child as they “definitely didn’t want another child with DS”. Hmmm, I think I said nothing at that point. I asked about the nursery and she said they picked it because they had lived on the same street… so that wasn’t the glowing reference for the place I was hoping for. I haven’t actually seen her since, but it was certainly interesting meeting someone who felt that having a child with DS meant they had to take screening that bit further to ensure they didn’t have another. Ted and I have said that if we are lucky enough to have another baby, it’s probably not worth bothering with the screening as what difference would it make? We wouldn’t abort and although a bit of warning might help us prepare, we had no warning with Audrey and that turned out fine! Ha, well, better than fine – awesome!

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Stuff and things 3 collides with special needs…

We went to a wedding reception in Hackney on Friday night. It was quite a big deal to be leaving Audrey with Bibi (Grandma Sarah) for the night, first time Ted and I had both stayed away without her. Sometimes I find it hard to relinquish control over Audrey… I never thought I’d be a routine mum, but I majorly am! I have decided to blame those first months when I was told not to leave Audrey longer than 4 hours without a feed… In those early days the pressure to “grow her” rested heavy on my shoulders and the slow, disappointing weight gain felt like my failure (since it was my breast milk trying to work its magic).

But I digress… Our hotel was… scary, weird, cheap, but thankfully reasonably clean and very close to the wedding venue. It was a trendy London brewery, with free beer, so Ted was of no use to me from around 11pm that night to around 12pm the next day!

We returned via Arundel to collect the little monkey (who had been happy and fine with Bibi, of course) and our return journey to Brighton was a debacle. Cancelled trains led to a brutal all-round-the-houses 2 hour trip on the 700 bus from Littlehampton to Brighton.

Audrey of course slept for much of the journey, but she was also fed her (emergency purchase!) Ella’s on the bus.

At the front of the bus (as close to the driver as you could hope for), were two young male adults with special needs talking loudly and regularly checking in with their guardian, Holly, by shouting back at her across the bus. One of the lads proudly declared he was driving the bus and they were definitely enjoying the journey more than anyone else.

Pretty much every time we passed through a new town/village, they would get super excited;

“I know this place!!”
“This is where Frankie’s nan lives!”
“We’ve been here before!”
“Does anyone need Durrington station? Can you hear me? DURRINGTON? Anyone? We’re helping the bus driver!”

The highlight of this commentary being the moment we arrived in Shoreham and they saw a other bus they recognised;

“I know that bus very well. I know everything about that bus. We went on that bus all the way to Southsea…”
Holly: “Not with me, I’ve never been to Southsea.”
“No, we went with Frankie and she said ‘Never again'”.

This had half the bus in stitches.

Around this time a large, partially sighted young man got on the bus and sat near us. It became apparent he too had special needs and he started up a conversation, saying “I hope you don’t mind, I like to chat to people”. We were very obliging and he asked us lots of questions about where we worked, what songs Audrey listens to at nursery, where we’d been that day… But the main focus was Clark’s (his name was Clark) diving practice. He had been diving off the diving board most of the day and is gearing up to jump from the highest board.

He wanted to know what would we do if he was to dive from the highest board?

“We would cheer and clap.”

He then explained that he always shouted as he dived; “123 – UNIVERSITY!”.

The conversation was often a test of our intelligence and memory….

Clark: “What will you hear when I dive?”
Us: “123 – university!”
C: “First you’ll hear the ‘boing’ of the diving board, then you’ll hear me say ‘123 – UNIVERSITY!’, then you’ll hear a splash. What will you hear when I dive?”
Us (catching on): “The ‘boing’ of the diving board.”
C: “Then what?”
Us: “123 – university!”
C: “Then what will you hear?”
Us: “Splash!”
C: “Then what will you do?”
Us: “We will cheer and clap.”

Clark helped us pass the time between Shoreham and Brighton and finally we were home.

The presence of these people with special needs on the bus didn’t teach us an amazing life lesson – this story doesn’t have a climactic ending… It’s just that; of everyone on that journey, they were by far the ones having the most fun. Between me (practically in tears as we rushed to get food for Audrey, because I was so upset with myself for not being prepared and for her routine being thrown – I try to be casual, I fail!)… the woman who had a go at every train guard and for some reason was travelling all day and hadn’t eaten, but had no money to buy food… the people queuing in the road obstructing the bus… basically all of that stress – there were these journey companions who were bloody loving it! And a little bit of that enthusiasm did rub off – everyone had a giggle.

Oh to be a bus lover.

Unsurprisingly, no photos were taken during the above trip, but here is Audrey being red cheeked but beautiful today…

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