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!!

Stuff! And Things!

Hello! Yet again real life and raising children somewhat takes over from blogging. So here’s another quick update on anything and everything I can think of.

They both had haircuts and behaved so well:

The other week Audrey was feeling poorly with a high temperature, laying on the sofa under a leopard print blanket. I came down having got dressed and she said “Mummy, you’re the same as the blanket!” I was initially confused, I explained I was wearing a cardigan, not a blanket… when I realised my t shirt was leopard print! How proud I am of Audrey and these simple moments.

The winter has already meant a steady stream of germs, but there is no escaping it when they both go to nursery and we spend our lives at play groups and music groups with dirty toys.

Audrey’s current favourite song is ‘Hocus Pocus’ by Focus. It’s worth noting as we’ve been through various favourites;

‘Black Magic’ by Little Mix

‘Ice Ice Baby’ by Vanilla Ice

‘Sorry’ by Justin Bieber

‘We Built this City’ by Starship

They both currently respond well to Hot Chip.

We watch ‘Trolls’ at least three times a week, but just a month ago it was ‘Moana’ a go go, so who knows what they’ll be onto next?

Rex is currently obsessed by cars, lorries and fire engines. Audrey is very keen on books and dolls. They both love handbags.

I am starting to appreciate them both more and more. Just looking and listening and seeing how wonderful they are. This is when they are not fighting over a toy or throwing a tantrum over something incredibly minor.

They both love Christmas (the build up) so far and I’m excited to enjoy it with them.

Audrey was recently a poster girl for a local charity (Amaze), which we were thrilled to see.

Will try not to leave it too long before my next blog post, we have a lot going on (Down’s Syndrome Awareness wise and in general).

Late for school

This week you will no doubt see pictures of beaming children in their school uniforms for the first time all over your social media feeds. Unless you don't know anyone with school age children. Or you're not on social media.

But there will be no picture of Audrey in her uniform.

Just six weeks dictated Audrey would be one of the youngest in her school year, instead of one of the oldest. So when school selection time came around (and the formulation of an Educational Health and Care Plan), we weighed up our options. The new system for summer born babies and children with special needs allows you to apply for a deferral; so that your child is the oldest in Reception and progresses through school in that class. Since Audrey is both a summer baby and a child with special needs, we knew we had a great chance of getting a deferral to start Audrey in September 2018.

We made a list of pros and cons and to be honest the only pro to Audrey going to school this year was a saving in childcare costs! More important than that was the chance for Audrey to "catch up" a little with her typical peers (since we have chosen mainstream schooling). She isn't potty trained, she hasn't really been walking unaided for a year yet and she still needs assistance in many areas… She's also very small and quite delicate, the thought of her in a class of typical 4-5 year olds is pretty scary!

I should consider ourselves lucky in that we know she can progress and close a gap (even if only a little), but for some children with special needs, a year might not make a difference to their ability to settle into mainstream school. Mainstream might not even be an option. So yes, we are lucky, but here we are, watching her NCT and nursery friends go off to school and I do feel emotional about it. It's a huge step, a big change and we've dictated that it's not her time. We've changed the path. I think I'm struggling a little with the fact that this is a different path from the one I had expected "our child" to take, like mourning the loss of an expected reality.

The thing is, I am excited about that first school uniform picture of Audrey, I am excited about her starting school, but I also know that starting now is not right for her, she isn't ready.

So another year of nursery. Another year of music classes. Another year of swinging in the park. This reality is not a loss for me I guess, but a gain…

Good luck to all the September 2017 school starters!

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.

Audrey turns 4!

I can hardly believe it, but I now have a 4 year old daughter!

I'm also wondering why mothers aren't always a blubbering mess on their kids' birthdays. I started reminiscing days before her birthday and it's started to blow my mind that Audrey and Rex both grew inside my body. Woah.

We had a rocky start with Audrey popping out all "extra-chromosomey" so the love we have and the way she is now is extra sweet.

Our next big hurdle is potty training, which she's been potentially ready for for someone (a year maybe!) but I've been putting off and putting off… but once we've nailed that, wow, onwards and upwards for our grown-up girl.

It's a funny time because Audrey's typical peers will be starting school in September (we have deferred her to be the oldest in her year next year), so it's strange that we aren't moving forward in that way. But Audrey needs the extra time and when I look at how far we have come since her 3rd birthday I know it's the right thing to do.

Yesterday we had a great party (a BBQ at home), it rained half the time but we were ok inside. I made a chocolate peanut butter Hey Duggee cake and Daddy cooked lots of meat and made burger buns. Audrey got lots of lovely presents and was out like a light at bedtime, exhausted by a very fun day… the same couldn't be said for Rex unfortunately, he seems to get wired, but he fell asleep eventually.

Happy birthday beautiful clever girl.