special needs

Audrey Starts School!

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Audrey holding a picture of me at primary school

I’ve just dropped off a piece of me in a classroom with lots of people I don’t know. The little lady has started reception at primary school.

My daughter is friendly, kind and gentle. She loves imaginative play and reading books. She likes routine. I have no doubt that she will enjoy school, I’m just not sure how much I’ll enjoy her being there!

Anyone who knows me that I will cry at TV programmes, songs that come on the radio and a fleeting thought about someone’s sad situation, so it was a huge surprise that I didn’t cry today dropping Audrey off at her first day of school.

Several factors helped – school drop off is not a romantic, sound-tracked moment.; it’s carnage! We went as a family, with a child in a buggy and one on the loose, we battled through a crowd of legs and shouting and hugging and hellos and goodbyes to get to her class. Also, Audrey was very excited. She managed to (almost) walk all the way there (major achievement) and she jumped, sang and hugged her way down the road, she was genuinely happy to be going to school. It’s tricky to feel the true emotion of a momentous occasion when you are in it. It’s actually easier for me to be tearful anticipating it or reflecting on it.

And so, here I am in a cafe. Ted and Rex are off shopping (typical boys!) and Audrey is in her school classroom, with her teachers.

Of course I can’t help but reflect on 5 years with her. 10 months of maternity leave of just us, followed by a mix of us and nursery, us bump and nursery, us Rex and nursery… and now Audrey has her own thing, she is a schoolgirl!

“They” say it goes in a blink of an eye. I don’t know if  I feel quite like that, but I do feel immensely proud of Audrey and how far we have come from tiny baby on oxygen to confident 5 year old.

As I analyse my feelings, I can see what is creeping in… I felt it during maternity leave with Rex. She had her nursery days and we went to groups but I was suddenly a different mum, I was seemingly a mum of one typical child but that was not my whole identity. She is a part of me, a part of me that I am truly proud of and it can feel very strange to be out and about without her. What a mix of emotions this brings and a new chapter for us all – I have handed in my notice at work and plan to work on freelance writing. I am very lucky to have a supportive husband allowing me to take this leap and it also means that I can be there to drop off and pick up Audrey from school.

Happy September and good luck to everyone in their “firsts”, I love autumn and I’m feeling so very happy that its crisp and sunny outside and the leaves will soon be crunchy under our feet. My favourite time of year.

Alike, But Different.

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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!”.

Person-First Language is Important

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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.

Getting a school place

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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.

(Belated) World Down’s Syndrome Day 2018

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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

Stuff! And Things!

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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).

If I Could Go Back…

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It’s Down Syndrome Awareness Month (predominantly in the US, but happy to embrace it as I always do), so what better time to direct you to a short film I had the pleasure of contributing to.

I have mentioned The Specials before (an online series that also aired on OWN in the US), they have been a fabulous, fun part of our journey with Down’s Syndrome.

I used to work for a company that sold documentaries internationally and we represented The Specials before I was pregnant with Audrey.

It was quite a moment for me, when, back at work visiting colleagues with my small baby, I bumped into Katy (producer of The Specials) and for the first time, I felt excited to tell someone that my baby had Down’s Syndrome! I knew that she would get it.

Anyway, the company I worked for went into liquidation, time passed, but I thankfully remained in touch with Katy because she’s just one of those lovely-type-people you stay in touch with.

She asked if we (my family and I) might be interested in being filmed for some content for The Specials website. They were interested in representing a different part of the Down’s Syndrome journey – the early part with a little one like Audrey.

Of course I said yes, I am always thrilled at the prospect of showing off Audrey and reaching people with our story – showing what life is like.

Katy started filming us the summer Audrey turned 2 and continued into the winter when I was heavily pregnant with Rex.

I’m pleased to be able to share with you a short film that came from some of that filming: a project called “If I Could Go Back…” that has given a voice to a variety of parents of children with Down’s Syndrome, explaining what those early days are like and what we’d like to say to ourselves if we could go back…

Click here to view on YouTube

It’s a perfect film to share during Down’s Syndrome Awareness Month and one that I hope will be useful to new mothers, fathers, grandparents… basically anyone who fears what it might be like to have a child with Down’s Syndrome in their life. What we thought “then” and what we know “now” = just wow. I could literally talk all day about what I thought it would be like to have a child with Down’s Syndrome and what it is actually like.

Audrey makes me so happy, so proud and she continues to surprise me every day with what she is learning and has achieved. So different to the fear in my heart that moment I first looked at her face.

More links to come no doubt, but for now, I hope you enjoy this one, it’s certainly emotive!

Late for school

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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 

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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.

Talking to midwives; Tell it Right

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In the last few months I have had the pleasure and privilege of speaking to midwives about the language used when a baby is born with Down’s Syndrome. The Down’s Syndrome Association arrange “Tell it Right” training days where parents of children with DS can share their experiences (good and bad).
The first time was in April at the Eastbourne campus of the University of Sussex, speaking to student midwives and then more recently, (this month) at the Royal County Sussex Hospital, speaking to qualified midwives and those involved with the screening process.

At both talks I gave a raw and honest account of my feelings when Audrey was born, how those feelings changed and what life is like for us as a family today. As I came away both times feeling like I’d missed certain details, I’m writing this post to cover everything I said and also everything I wanted to say. I hope this proves useful for anyone (NHS professionals, friends and family, new parents…) involved in the birth of a baby with Trisomy 21 (ooh I don’t use that term much, it’s the medical name for Down’s Syndrome).

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My pregnancy with Audrey was lovely. I had no morning sickness, felt relaxed and happy and just had a bit of heartburn to contend with. We had the nuchal fold screening at 12 weeks – our chance of a baby with Down’s Syndrome was “low risk” – 1 in 1,000. We received that news in a letter and thought nothing of it.

The day Audrey was born was a scorcher in July 2013, I had concerns over lack of foetal movement, so I ended up at the Royal Sussex County Hospital just after 6pm with my friend. I was hooked up so the baby could be monitored, they soon decided she was in distress and needed to come out, I was not in labour so the only option was an emergency caesarean. It was a very quick turnaround, this news was delivered to us at around 6.45pm when my husband walked through the door. Audrey was born at 7.51pm. 

My first sight of her was wrapped in a towel in Ted’s arms. I saw her eyes and I saw it then; Down’s Syndrome? She was laid on my chest for skin to skin and as soon as I had full view of her I knew; I said “This baby has Down’s Syndrome”. I felt sick inside. Ted went to speak to someone (even though he felt silly asking, because clearly our baby wouldn’t have Down’s Syndrome), but they said that indeed, there were “markers” – a hand crease, a toe gap, the eyes… but then she was whisked away to the baby unit for care and I was left to recover. We were shell-shocked. It was a bad dream… wasn’t it?

No one said anything stupid at that time. I say that because people do. I’ve heard lots of examples, from “he’ll never give you grandchildren” to “some of them even read nowadays”. These are not helpful statements. Ever. But certainly not in the minutes/hours/days since your baby has been born. How about we just treat this situation like we should; a human baby has arrived. One that has a condition that tells us a bit (but not all) of what they might be like, of what challenges they might face. No one is born with a life CV. Can you imagine getting a note with your baby that says “Will have a series of dead-end jobs, have two failed marriages, get fat, get diabetes and struggle with an alcohol problem”? Doesn’t sound like a baby you’d want to raise. But there are no gold star life guarantees with a baby. 

Whenever I revisit Audrey’s birth I cry. I want to go back and take away the fear, take away the dread and the denial. We had chosen her name before we knew she was in there, we had a name for our potential girl and a name for our potential boy. I put a “pause” on that when she popped out. I asked Ted if we could use our back up name. I felt this wasn’t my Audrey. She wouldn’t be pretty or delicate as I imagined, she was now something else. Something ugly. I’d have to have another daughter without Down’s Syndrome to name her Audrey… Thankfully Ted stood firm and made me realise; she wasn’t a second choice baby, she didn’t deserve a second choice name. She was our Audrey, we just hadn’t realised. And wow, is she more Audrey than I could ever have imagined! A child so beautiful and delicate – my heart swells with pride and joy everyday because of her and how she is. I never could have imagined in those troubled 24 hours just how lovely she would be, but more than that, how she would exceed our expectations and make us proud to be her parents.

Audrey needed oxygen (it’s thought due to a floppy larynx), for 6 months, but had no other health concerns and she breastfed (I’ve also heard stories about people being told babies with DS can’t breastfeed, but that isn’t true). Having her attached to machines, looking so helpless, well it kind of helped us gain some perspective. It was certainly better to have this baby with a condition than no baby at all – you can quickly push a syndrome aside when you are worried a baby might not live.


I’d like to add that having Rex gave me a new perspective on Audrey’s birth- because I felt a similar numbness, shock and confusion at the sight of him and he clearly didn’t have Down’s Syndrome. A woman who has just given birth is in a crazy place mentally – it wasn’t a rush of love and perfection for me at either birth. The Hollywood movies lie. Both times I was surprised by the baby I saw, I had somehow projected so far that I had pictured my baby and the moment they arrived and nothing could ever measure up to that expectation. What a bummer.

But I’m not trying to disguise the fact that having a child with special needs can be challenging. It was tough to have a baby in hospital for the first 3 weeks of her life. Of course we didn’t enjoy her being on oxygen for 6 months and I found it frustrating when she still wasn’t walking at 3, but that time and those struggles seem like a small blip now. 


We have a walking, talking almost 4 year old who likes books, dolls and music. She attends  mainstream nursery, which she loves. She squabbles with her younger like any other little girl would, loves chocolate cake and Mr Tumble. 

She comes out with some of the best phrases;

“Mummy’s making me happy”

“Take your shoes off!”

“Oh Mummy I love your jumper”

Just yesterday she told her daddy he was “Looking fresh!” and this afternoon she said (to a 17 month old who had visited us) “Goodbye! Thanks chunky legs!”.

She cracks us up!

So what do you say if a baby unexpectedly pops out with Down’s Syndrome? First, congratulations. Yes of course deal with/discuss any immediate health challenges, but if the baby is healthy, you could mention that they have a “naturally occurring chromosomal arrangement” (thank you Rose Mordi, President of the National Down Syndrome Foundation of Nigeria).

Then you could go on to say that you’ve met families with children with the condition and they had a lot of positive things to say, but above all, they loved and enjoyed their child. Their only regrets; that they could have known from the beginning that this wasn’t bad news, it was just different news. 


We adjusted to our new path quite quickly really, Audrey went from the worst thing happening to us at that moment, to being a baby, to being a baby we loved, to being this awesome child that we get to raise! Now we show her off at every opportunity and we marvel in all the things she is teaching her younger brother. We are so lucky to have two beautiful, wonderful children, both of whom are a challenge(!), but that make us  happy.

Sometimes the lows make the highs much sweeter – I truly love that I have gone from fretting about her lack of future (in those early days) to being excited by all that she can and will achieve.