Alike, But Different.

On Wednesday night I woke around 1am to find myself being sick on and off through until 8am. It goes without saying that Thursday was not a great day for me. Thankfully Ted worked from home and my children offered me plastic cups of “medicine” and gave me hugs and kisses (that I should have fought off due to my potential contagiousness!), they also whined a lot and ran around arguing. Being ill as a grown-up with kids is the worst. The best time to be ill is when you are a kid and a parent looks after you.

Brighton Pride 2018

Anyway, I felt a lot better on Friday and we had a good day with the kids (some top secret modelling, but will share more about that at some point!), we took them to the park in the afternoon and met a lady with a 4 year old son who has special needs. We got chatting and we found ourselves in a position we’ve been in before – struggling to empathise with someone who thinks you can. She sees another “special needs family” and shares her story, but we feel, well, like we occupy a different space; Audrey isn’t “severely” special needs, but she’s not typical either. She sits in a space in between the two. I’m not denying Audrey has special needs, she definitely does and you only have to spend time with other 4-5 year olds to know that she is “different”. However we often find ourselves chatting to someone who is offloading about their child (with some form of special needs) constantly waking in the night, struggling to communicate, challenging behaviour, interacting with other children (hitting, tantrums)… for the most part I can only really apply some of these challenges to Rex!

This lady said she was surprised we had chosen to have another child after our first had special needs! Ha! How we laughed about that one on the way home. All children are hard work and of course, children with special needs present a different set of challenges, but Audrey made us feel very comfortable about doing it all again. Rex, however, well and truly scuppered plans for any more kids!

That evening I was very much looking forward to a decent sleep (as even Thursday night I was restless). As discussed with the lady in the park, Audrey is a good sleeper, but Rex sometimes shouts in his sleep.

Around 2am the dreaded sound of Audrey retching reached my ears – I was out of bed like a shot. There she was, sat upright, sick in her bed and bright and chatty “Sorry Mummy” she said as I wiped up the sick. And after vomiting in the bucket I held for her, “Phew! That’s a lot of sick!” She said, brushing her hair back.

She literally couldn’t get any better. After returning to bed and several more leaps back out to her aid with the bucket, I decided it would make more sense for Audrey and I to sleep in the spare bedroom together. So I scooped her up and laid next to her in the double bed, bucket at the ready.

As soon as I laid in the dark with her, I felt around to find her face and gently stroke it. She did exactly the same and stroked my face. She whispered that we were in “Uncle Graeme’s bed” (because he stayed in our spare room for a week during his chemo this year). She has a snotty nose at the moment, so within minutes she was asleep but snoring like, well, like her Uncle Graeme. I realised that I was really going to struggle to sleep, but do you know what? I strangely didn’t care. I could smell her sicky breath, but I could also feel her warm body right next to me and I felt so lucky to be her mummy. To be her protector.

In the morning I was awoken by many things (Audrey’s feet kicking me, the light coming through the half-closed blind, Rex thrashing about in his cot), but it was magical to wake to the sound of Rex saying “I want Audrey back!”.

Advertisements

Person-First Language is Important

I’m writing this to elaborate on a quick post I did on Instagram explaining/reiterating (I’m sure I’ve said it before) that Audrey is Audrey first; a child with Down’s syndrome second. So she is never a “Down’s kid” she isn’t a “Down’s syndrome girl” she is a child who happens to have Down’s syndrome. My little Instagram rant stemmed from the following…

I arrived for the open evening at Audrey’s school on a sunny summer’s evening, listening to Desert Island Discs, feeling excited about my little girl’s future in mainstream school.

I joined a queue to buy school uniform, chatted to some mums I had met before and gleaned information from these pros (with kids already attending the school) on what to expect.

I sat down clutching the welcome pack with Audrey’s name and class on the front and by chance sat behind the mother of one of Audrey’s nursery friends – (I could see the name and class on her welcome pack) and I could see they were in the same class. Everything was falling into place.

The teachers spoke at the front of the assembly hall and took us through the basics; uniform, PTA, after school club, forest school (so on trend). And then we all got up and filed into our specific classrooms to mingle and meet our child’s future teacher.

For some strange reason, I was quite focused on meeting Audrey’s teacher, but the thought of her 1:1 had barely crossed my mind… at least I thought it hadn’t, but I realise now I had already pictured her – in her 20s, enthusiastic, dedicated to children with special needs, passionate about it, a Makaton pro, a bit quirky.

So I guess it was a surprise to meet the lady who was older and not physically the picture I had in my head. And then, as surprisingly as she’d appeared; she made a bad impression. I asked about her experience and she told me how she had been working with a “Down’s boy” at the school and then she’d been at a special school a few miles away which had “loads of Down’s kids”. Outside I was smiling and nodding, inside I was crushed. How could this be someone passionate about people with Down’s syndrome? She doesn’t even know how to speak to me without offending me! She doesn’t understand person-first language. How can this person be the chosen 1:1 for Audrey? It made no sense.

I was awkward and made some comments about regretting not preparing with questions and I moved to the queue to meet the teacher.

The 1:1 popped up again, asking me about Makaton signing and why Audrey’s nursery had corrected her (she showed me the sign, I corrected her too). Such a minor “hiccup” you might think, but at this point I was getting anxious inside, imagining Audrey bonding with a woman who was seemingly getting everything wrong.

The thing is, people get person-first language wrong all the time and most of the time it doesn’t bother me that much. I don’t like to be pedantic (ok, I kind of do) but hey, I was made that way… in the same way that a cafe might list “sandwich’s” for sale and I will despair (but not run in asking them to correct the laminated menu), I despair a little over someone saying “a Down’s kid” but rarely take the time to correct them.

However. This was meeting a professional in a school. Someone who has clearly worked with children with Down’s syndrome for years and someone who has been employed to spend a lot of time with my daughter. So in this scenario, I should have said something, but because awkward conversations are not my thing, I ranted at other mums, had a rough night’s sleep, ranted a bit more to friends the next day and finally sent an email to the Head of Inclusion at the school to explain what happened.

What really gave me the confidence to write to the school, was the support I had from mum friends (those with typical children), who agreed this language was not on. They made me feel like I wasn’t over reacting.

This all happened last week and having had some time to calm myself and reflect, I had a meeting at the school this morning and I’m pleased to say I feel reassured that this was an unfortunate mistake and that they (the school) are more than versed in the correct language and will be ensuring all the teaching assistant are reminded of the correct terminology.

It was also helpful to hear that the 1:1 had come to the open evening off her own back because was excited to meet me, because she is excited to be Audrey’s teaching assistant. I can step back now and know that she does care, she will learn from this and that this bad experience can help the school, parents and teaching assistants learn something moving forward.

In fact I’m already discussing with another mum from the T21 crew (who was my immediate “What would she have done?” thought when I was faced with the dodgy language) a way of using this experience to create a “going to school pack” that can help schools and families learn from this dodgy experience.

Hopefully no one is reading this wondering what all the fuss is about, but if you are, then please just know that words are important. Audrey is so very precious to me and I want her to have the best start at school as she can possibly have and this begins and ends with her being treated as an individual.

Special needs 

Gemma Mount Photography

Most of the time I'm a mum. But sometimes I'm the mum of a special needs child. It's actually quite rare that I'm fully aware that Audrey has special needs. It doesn't impact our day to day life as much as you might think.

I recognise that she needs more help than her typical peers when it comes to various things (eating, navigating obstacles, potty training…), but I guess I'm just used to her progressing slowly and she just seems a bit younger. I don't really think of her as "special needs" child. 

Most of the time I want people to look at her. She's beautiful, funny and friendly, so I like to show her off. But every now and then…

Audrey and I went to a mum event last month. Run by MumstheWordOnline, it was a talk and book signing with Clemmie Hooper, the midwife, mother and blogger who is "instafamous".  I set off with Audrey in the sling, both giggly and excited by our alone time. Stopping to look at pretty flowers before we caught our bus to town. It's rare I can travel on a bus and sit Audrey next to me – sat up high so we can talk about what we can see out of the window. These are the parenting moments you drink in. Those perfect moments of excitement and happiness over the simplest things.

We met our friends Louise and Harry and walked to the hotel venue. Audrey was snuggled into me and I could tell she was a bit sleepy. 

We collected our name badges and then entered the room. It was then that I realised bringing Audrey was a mistake (bringing Rex would have also been a mistake but for slightly different reasons, but I digress!). The mum chat volume was high. The room was crowded and chaotic, it was warm and everyone was moving around in limited space to chat and get coffee. Audrey was instantly asking to go home. 

I thought that once we sat down to listen to Clemmie speak, Audrey might be content on my lap, but it soon became clear that wouldn't work – they had a PA system and Audrey covered her ears and said it was too loud. She started to cry. More than anything at that point, I felt so terrible having put her in this position. We moved to the play area but she didn't want to play with any toys, she just wanted to go home.

At the very back there was a room for buggies. This was furthest away from the noise, Audrey was much calmer in this room, but basically wanted to leave via the fire exit because she could see the street. After a bit of back and forth, I realised it would be easily solved if we left. A brief freak-out (on her part, obv!) as we left through the main noisy room and then we were in the hotel lobby; she was immediately fine. We popped into the large toilet right there and Audrey said "Phew!" And was back to her usual happy self. We left and she was all waves and smiles to the hotel reception staff.

We went to the library, then onto a cafe for lunch, Louise and Harry joined us, calm was restored. Lou tried to make me feel better by informing me Harry also asked to leave and handed her her handbag(!), but the fact remains he wasn't emotional, he wasn't stressed, just bored.

However it's moments when she's upset that I feel like a special needs parent. I feel eyes on me, I worry about pity, I think people see our life as hard. I feel like they see Audrey as difficult, as a burden and I hate that.

I accept that she is different. Our life will be different. But I hate the thought of anyone seeing a fleeting moment of stress as "the way things are".

These past few weeks have been tough. Not because Audrey has Down's Syndrome but because both my children have hit hideous phases of tantrums and tears and er, "wilfulness"! Two under 3 has been tough and despite the fact that Audrey is now 4, it's still very tough. The fact is, most of the time Rex is the main cause of stress, but he is typical and no one would bat an eyelid to his tantrums. Maybe no one bats an eyelid to Audrey's, but that's not how it feels when you are a special needs parent.

Calm restored in a fancy toilet.

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!

IMG_4457.JPG