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.

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Getting a school place

Our little Audrey starts school in September. She “should have” (under the usual system) started in September 2017, but, thanks to a change in the rules, we were able to defer her for a year so that she enters reception as the oldest, rather than one of the youngest.

We have chosen a school near us, which is mainstream (for typical children) and happens to be a church school. Children with an Education, Health and Care Plan (that’s our Audrey) are allocated a place first. They the go through various other criteria (living in the catchment, worshipping at the church, having a sibling at the school etc).

Despite Audrey being at the top of the list as it were, I was a little nervous (and I guess confused) by the system.

I waited like everyone else for my email confirmation that Audrey had her place at our chosen school, (despite the fact I had already been in a meeting with a member of staff from our chosen school, discussing Audrey’s future there as if it were a given). But on school admissions email day… Nothing came. Instead, on the day people were notified what school their child was allocated, I was copied in on an email from the local authority to the Head of Inclusion at the school, basically saying “please let us know if you cannot meet Audrey’s needs”.

This did not make me feel secure. Especially when the response was that they would “make a decision after visiting her at nursery”. So we had gone from top of the list to a decision being made after the announcement day for everyone else!

I am pleased to say that a week later than everyone else, I received an email that confirmed they will be accepting Audrey at their school in September. Phew.

I’m also pleased to say that when I dropped off the required paperwork for Audrey’s application, the lady on the school reception said they had no other Audreys. And I just know that everyone will know her at this school. That feeling of pride that I regularly get from seeing her chat away to new people – I shall experience that en masse as she settles into the school routine.

I also went to a “transitioning to school” coffee morning last month, for parents of children with special needs. It was another eye-opening discussion where I realise that many children have more complex needs than Audrey, although I also felt very aware that she does have special needs. She will love school, but will find some of it challenging. However, (as cheesy as this is), the headline motto from this meeting was that there is not need for your child to be “school ready”, rather that the “school needs to be ready for your child”.

And despite Audrey not currently being potty trained (something I had hoped/expected us to have nailed before school), I feel confident that she is ready and that the school is ready for her. Putting aside the unbelievable gaping hole she will leave behind in my weekday life, I’m excited for this new chapter in her life.

Party time

The first time Audrey was invited to a birthday party (by a child who’s parents we didn’t know – a nursery friend), it was a real example of how she was accepted and liked by her “typical” peers. It was a big deal.

When we went to the party, we all had a good time overall but Audrey did show signs of being “different”. She wouldn’t eat (and the food on offer was the stuff of dreams: crisps, blueberries, chocolate cake, sausages…) and she asked to go home. She wasn’t crying, distressed or upset, she was just… uncomfortable.

We had a couple of other party invites and basically decided it was important to always get out of her comfort zone and see how she got on (rather than say no and miss out through fear). Again, we saw Audrey not eating (despite the selection of food being perfect), asking to go home or complaining it was too loud, but we never let it stop us trying, because she often enjoyed a little dance and she always left happy.

And then it happened- she ate at a noisy party. She joined in. She didn’t complain. We had a great time.

Now both our kids live for parties! (Because they love music, presents and cake).

So we were pumped last weekend to be offered a chance to go to Big Fish Little Fish at Stanmer Park for a – wait for it – family drum n bass/jungle afternoon rave. As we set off to drive up the road we realised that (yet again), we had left the kids’ ear defenders. We have them for events just like this and we literally never remember to take them, so the kids just have to make do and deal with the noise.

We arrived on a very sunny day to the amazing marquee of bubbles and play tunnels and a very loud sound system and I admit, I was a little worried. But Audrey (and Rex) bossed it. They came in, ran about exploring and got stuck in. Audrey showed a wobble initially when she had no interest in having some apple juice (funny this is a measure of how uncomfortable she is, but it is!), once she had settled she took a sip and I knew we were ok.

She showed enthusiasm for the face painter, again, something I shamefully would associate as something she “might not like because she has special needs”, but I knew she had dabbled a little at nursery and she seemed keen, so we queued up. When I sat her in the chair, the face painter asked me if Audrey had had her face painted before and she was just very considerate and gentle with her. Audrey was a really good girl and the face painter was so fast that before I knew it, I was looking at the most beautiful tiger in the world!

Aside from dancing, drinking juice, climbing through tunnels and rolling out play dough, there was also the fabulous outdoor space filled with “rustic” climbing frames and slides for the kids.

Audrey was unsuitably dressed for this in her fabulous Tootsa McGinty dress and Next tiger wellies, but oh how she surprised me with some supreme climbing! Rexy too (but it’s extra tough for Audrey with her low muscle tone).

As someone who regularly sticks to routine, taking the kids to the same groups/parks/cafes that I know “work” for us, it seems a little crazy to be saying this, but it’s good to step out of your comfort zone sometimes. Kids love routine and it can be hugely stressful if you do something new and they hate it or misbehave, but you’ll never know unless you try.

Last Sunday we went to see my Nan (the kids’ Great Grandma), which I thought would probably be stressful/chaos, but was actually great. She has just been moved to an old people’s home and she is almost 99 – Audrey’s middle name is Emily, after this nan. Emily lit up seeing Audrey and Rex, but so did all the other old people in the home, they looked so happy to have children running around, it was great. The kids loved the piano there (and made quite a bit of noise, but no one minded).

That same day, we were going to the seaside, the kids were excited (because, despite living by the sea we rarely go down there). I thought that would be a really fun activity, but instead, the sun disappeared as soon as we pulled up (literally, a weird sea fog arrived and the temperature dropped). We got down onto the sand and Audrey’s nose was running, the cold wind was blowing and no one was having any fun, we were all shivering. But at least we tried!

Next week are trying a new dance class at the marina. Watch this space!!

(Belated) World Down’s Syndrome Day 2018

I always think this day comes around so quickly and that here I am again (eye roll) talking about World Down’s Syndrome Day… but then I realise that every day is #WDSD for me. So for those of you not regularly “exposed”, let’s learn a few things. Firstly, it’s 21st March and I didn’t finish this post in time (forgive me).

This year I threw myself in a little bit more than usual- we were in a printed magazine!

A piece came out in Take a Break:

This came about from The Specials “If I could go back…” video we took part in, (writing a letter to myself to talk about what I wish I had known when Audrey was born).

I also submitted a list to Mother of All Lists. An honest “Instamum” I am a fan of. I actually found it quite hard to write as I found myself getting quite ‘ranty’ (aka passionate?) when talking about DS. However once it was out there I had such a fantastic response, I was really pleased to have done it. It’s scary exposing your personal story (especially one that touches on Down’s syndrome screening and abortion), but it was a great way to reach an audience of mums who might otherwise have no knowledge of where society is with screening for DS or that humans like Audrey exist; being fabulous.

We had a party the weekend ahead of WDSD with Brighton and Hove families. Soft play, a disco, party food, music man, a raffle… great fun but exhausting. At the party a child was using Audrey as a step-up (climbing on her!!) and Rex threw himself in the way saying “That’s Audrey!”. I mean, he would happily climb on her himself, but he will also defend and protect her when needed! So lovely.

Audrey’s next EHCP meeting was looming, school in September seems close and scary. She’s seen an episode of Topsy and Tim and seems to think she’ll get a bike and a helmet to go to school with! She cracks me up. Once we had the meeting however, I felt so much better about it all. The SENCO was lovely and it felt… doable. I could imagine her at a mainstream school and not start to feel sick!

We are doing our monthly table tennis sessions thanks to our local T21 group (Trisomy 21 is the medical name for Down’s Syndrome) and loving it. Naturally the kids don’t really play table tennis, but they have a good runaround in a community space and it’s an inspiring place to be (given that they have 3 coaches with DS there – the only 3 qualified sports coaches in the world with DS!).

I’m always full to the brim with things to say about Audrey, about Down’s Syndrome, although I feel I’ve neglected the blog a little lately (which I’ll try to rectify!), but just know that this little human of ours is doing really well and we #wouldntchangeathing

Behind the squares

If you are reading this you probably know I share our life on Instagram and I also blog here. I am always open and honest, but there are many times that when I am enjoying “likes” and comments on an Instagram post about my beautiful children I am also watching them hit each other. Life is full of ups and downs, Instagram has it’s name for a reason; it’s tiny instances shared and you don’t always show the whole story in an instant.

I like to think that I share more reality than those monochrome “perfect” accounts filled with succulents and expensive candles.

However, right now, behind those squares of my smiling children, coffee shop visits and shiny new trainers: there is cancer. Again.

I myself cannot believe how often I have been “touched” (punched in the gut more like) by cancer. My father died of cancer in 2010. My father-in-law-to-be died from cancer in 2011. My sister died from cancer in 2012. My mother died from cancer in 2017. And now… my brother battles cancer in 2018.

Me and my big bro.

It always made me a bit uncomfortable, sharing too much of this sort of thing on social media, but this time I feel so utterly thrown by it, I want to acknowledge it. I want to make sure people are always aware what’s behind the squares.

Just before Christmas, my brother found out he had ‘operable’ cancer. So it was upsetting, but apparently easily sorted. I took him for the operation on 27th December. After that, you’d have hoped it was all onwards and upwards, but he had another niggling pain. So, (after the obligatory painkillers from the GP), there were more scans, mores tests and yes, the cancer had spread.

Today he is in hospital having his first round of chemo. Week on week it has been news that has uplifted us and punched us in that gut again. They can’t quite decide how bad this cancer is. I have continued my weeks on autopilot. Much like when my mum was diagnosed with cancer and when she died, I had to “go on” with an invisible dark cloud over my head.

And so I sit and sing “Wheels on the Bus”, I make small talk with other mums over tea and biscuits “How are you?”, “Fine, fine and you?” I placate squabbling children, make dental appointments, grill fish fingers and function as a normal human being whilst in the back of my mind I am thinking about my brother. Constantly. About how he is young (43), that he’s one of the best people I know and that he doesn’t deserve this. How the kids adore him, how he adores them and how I just can’t take anymore of this darkness. Pain, suffering, death, I’ve had enough.

Sometimes when the kids are resisting their coats or fighting over a plastic egg, I want to scream at them; “Uncle Graeme has cancer! That’s more important than this crap!” but of course I don’t.

It’s pretty crazy to think about all the people “functioning” right now. I mean, I was in TK Maxx at 6pm on Wednesday night buying pants, socks and a jumper for my brother (as he was unexpectedly kept in hospital after an appointment about his scans). As I queued up and subsequently paid, with all the standard niceties “Have a nice evening”, “You too”; I wanted to scream “My brother might be dying! I need to get these clothes to him in hospital!”. And as I walked in the rain from my car to his ward, crying because I just don’t want this to be happening, I actually wanted someone to ask me: “Why are you crying? Are you ok?”, which is odd considering my “Fine” stock response to friends.

I suddenly became very aware that each and every person you pass on the street might well be dealing with something. The harmless old “Cheer up love, it might never happen” feels like such an unbelievable over step of the mark, because stuff happens . We are all dealing with dark stuff, all of the time. Break ups, miscarriages, redundancies, illnesses, deaths, depression, you name it; someone is putting a brave face on over something.

I can only remain hopeful that all will turn out fine (how else can I go on?), but I guess I want to end on two cheesy words that are said a lot right now, but sum up how I think we can make the world a better place and as a reminder that you never know what someone is going through behind the squares/their smile/their ability to say “I’m fine” (when that is, in fact, bullocks);

BE KIND.

x

Mental Health and Mumming

Once upon a time I was a happy-go-lucky human who couldn’t get their head around how people who felt depressed couldn’t just think about happy stuff and snap out of it. Yep I was that naive.

This was before kids. Before 3 members of my close family died of cancer. Before I realised that sometimes it can all just become too much.

After my mum died last year I would find myself sat in the mornings feeling unable to motivate myself to get dressed and do stuff with the kids. I would stare into space. I would feel despair. I would feel “what’s the point?” And I’d feel scared by those feelings.

The first time I ever had these kind of depressing thoughts were actually after having Rex. The sleep deprivation and his general unhappiness as a baby made me feel like we had ruined our happy family by introducing this child. But I was functioning, showering, seeing friends… and I didn’t want to die. I didn’t want Rex to die. I just wanted it all to be fixed.

And so according to the test “they” (doctors, health visitors) get you to take; I didn’t have post natal depression. Clearly I was depressed, but not badly enough for any intervention.

This actually leads me to another example of why I get so frustrated by those who talk about the “suffering” of a sibling if you choose to continue with a pregnancy after a Down’s Syndrome diagnosis – that you are willingly choosing to bring a child into the world that will require more attention and cause your other “typical” children to be neglected in some way. We had a lovely child with Down’s Syndrome, she had all the love and attention she could want. We gave her a typical sibling and yikes, he was needy! Audrey’s needs were on the back-burner. She watched CBeebies a lot. And even though we’ve come through dealing with a very needy baby, Rex is still very much the one who causes upset. He’s the one that needs more attention in general.

At bedtimes there have been many times when magical cuddles with Audrey have happened to a soundtrack of Rex having a tantrum over socks or some other nonsense. He has much more of a temper than his sister, he likes to push boundaries and in fact, he has started pushing and hitting and Audrey does so back. She has learnt a lot of bad habits from him – she never would have climbed on the coffee table pre-Rex and she never would have hit me. She had never attacked the toilet tissue before Rex showed her how it’s done! Having a child with special needs can be tough, but having kids is just tough anyway.

They are now both perfect siblings – holding hands and plotting together one minute, crying and fighting over a piece of cardboard the next. Lovely, exhausting little… angels.

And so, with the level of adulthood I have now reached (bills to pay, important people to mourn, feral children to discipline), I find myself in therapy. I am attending counselling sessions, which is actually great. I find it particularly strange that it started about grief and soon became “good god my kids are driving me insane” and is now “please help me figure out how to be confident and do something with my life”. Well, at least we are progressing!

What you learn in therapy (or rather what I’m learning), is that “me time” is crucial to mental health. Doing what you love or doing something that makes you happy, regularly, will keep you sane.

I am fully aware that if I am lacking in “me time” it’s usually my fault. I still find it difficult to not think of the kids as entirely my responsibility. So whenever I leave them with someone (even my husband!) I feel guilty or like a clock is ticking and I need to get back to my job as mum. Crazy but true!

To briefly summarise the journey of a mother: pregnancy gives you a passenger/parasite to deal with, dramatic body changes and hormones. The baby then remains a parasite of sorts and your body is still different and very much not yours. Once they finally become a walking, talking more separate human, they create a lot of stress and mess and you perhaps still don’t feel like you can be yourself. I put on a new dress last week and by the afternoon Audrey had jumped on me and knocked my (thankfully not hot) tea all over me. I regularly find play doh on my jeans. This morning I was applying eyeliner in the bathroom whilst two children attacked my legs. I very often wee whilst being harassed by them both; “Mummy! Mummy? Do you need tissue? Are you finished? Wash your hands! Dry your hands! Mummy!”. It can feel all-encompassing and unescapable at times. How can I find the time to be me and not “Mummy”?

Thankfully, we have good settlers and our evenings are our own. I need to prioritise more time for things that keep me sane and also remember that although my day is peppered with stress and lunacy, it’s also full to the brim with beauty and love. I mean; look at them:

Merry Christmas 2017

Merry Christmas everyone.

The kids have had a fabulous December so far. They love Christmas lights and treats and music… and today they loved opening mountains of presents.

We celebrated at home with my mother in law, brother in law and brother. Our first Christmas without my mother, who died in April. So much making it a tricky time, but we kept the festive spirit alive and had a really lovely time.

At a Christmas carol concert yesterday Audrey was not only the star of the show “Hello everyone!” but also got to be Mary. She adores Mariah Carey’s ‘All I want for Christmas is You’ and she loves mince pies.

Rex is approaching 2, so is in equal measures adorable and horrific. Tantrums have reached a peak.

I have to admit that I was scared about how I might “get through” the holidays without my mum or my dad, but the kids really do make it.