Rex’s words and general hello

I started writing this post in May (!) and listed Rex’s words;

Mama

Dada

Up

Tumble

Milk

Yeah

No

Down

Ball

Dog

Bird

Audrey (Audrew)

Dum Dum

Teeth

Duggee

Hat

At least half of which were combined with Makaton signs. Yes he’s basically a genius.

Since then he has mastered Mummy and Daddy and basically attempts to repeat any word you throw at him. He’s started singing Baa Baa Black Sheep a lot as well as the circle time song that Audrey used to plague us with a year ago (she still sings it now and again, but wow was that on repeat for a while). It’s November now and he has lots of sentences and is a very chatty young man.

This is a bragging post because I’m proud of him, but also because I want it to be known that it doesn’t really matter. Most of Rex’s milestones have been annoying to be honest, crawling, standing, walking, climbing… it’s just more to worry about. Talking you’d think was all good, however it does give him a chance to say “no” and to ask for things he can’t have. It’s a challenge to explain things to a 16 (now 20) month old.

Anyway, he’s doing well and we’re really pleased about that, but we were and still are, really pleased with how Audrey is progressing.

In fact, I remember my time alone with Audrey as an 18/20 month old as not very different. No walking of course, but I feel like we had our little chats and she made choices, yet I know she wasn’t at the Level Rex is now at. I guess I’m just saying that you can be content with your child and their development even when it’s delayed/tough going.

Life is still very challenging with two small humans, they test me daily, but it’s also wonderful. Their little voices! The chats they have with each other! The cuddles! The fights! The tantrums! Losing my mind! All life is here.

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If I Could Go Back…

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

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.

Nursery times 2

Today I went back to work after 18 months of maternity leave (well, the cold, hard fact is, I was made redundant whilst on maternity leave, but let’s ignore that). 

As I walked home (that’s right, no dodgy commute, just a meander through leafy Hove), I felt so incredibly emotional. I’m a cry baby anyway (I’m sure I’ve mentioned my tearful John Lewis advert moments/sniffles at people dying on Neighbours/sobbing to La La Land?), but this felt like such a mix of feelings. Rex spent an entire day cared for by nursery staff! – You see he’s only spent time with friends and family before, this was a big deal. 

Audrey is a nursery pro – she started at 10 months and save a few tears at pick up (when she realised we left her!), she’s always been an easy-going sort; she took to it like a rubber ducky to kids’ bath time and we never looked back.

Rex has been a bit more clingy in general and at 16 months he’s at a trickier age than she was, but, nursery settling sessions went well. So I wasn’t crazy-nervous about him starting and to be honest second time around you’re much more willing for your kids to fly or fall. But when lunchtime arrived I realised I was keen to check in and hear from nursery that he was having a good time (which he was).

Once the day came to an end I was excited to get home to see my family. It was a good feeling because it is so rare that I get to miss Rex. Audrey has been going to nursery twice a week and on those days I get very excited for her to come home… clearly every day I cannot wait for my husband to get home, but for Rex… well we just don’t get very long breaks from one another to miss each other. What a novelty. I missed him. Amazing.

In many ways I’m one of those mums that complains about how I’m always with my kids and that I have no time for me, but then doesn’t let others look after them. I fear leaving them, it’s a control thing and I’m working on it. Walking down the street alone on a mild summer evening was pretty awesome. I started daydreaming about dates with Ted, maybe going for a run; just time without kids that I haven’t “allowed” myself before.

Getting home (5 minutes before my crew), I really got the “sight for sore eyes” phrase. Wow. My beautiful children arrived home with their Daddy, full of smiles and lots of shouting “Mummy!!”, it was wonderful. Rex was very clingy, but in such a lovely way and I got lots of cuddles and kisses.

For anyone wondering if working (and this is only part time to be clear) after having children is a good idea… thinking; will you feel guilty? Will it be difficult to do something other than wipe bums and faces? Will my children suffer? Well, in my experience, working or just having a regular activity away from your children is a great idea (insert thumbs up emoji here). I just feel like I’ve had a boost and that both my children seemed lovelier because I didn’t spend the day with them! Ha. 

Check them out in pics below – Rexy got for a balloon on his first day and he loves balloons!

Talking to midwives; Tell it Right


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).

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.