Special needsĀ 

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.

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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.

General update

So much to write, so little time.

I just wanted to check in and say; we are surviving. Still get hit with the “my mum’s gone” slap in the face every now and then, mostly pretending she’s still here.

Job on the horizon. Weather too hot. Short break away with friends coming up. Trying to put my positive pants on and not be a wreck.

Audrey and Rex both thriving. So much talking! And climbing! And singing! And whining! I’m exhausted and struggling, but they are the best and I wouldn’t change a thing.

Good grieving ?

Me and my mum, end of 79/early 1980

Around 2 weeks after finding out my mother had 2 months to live, she died. The decline was fast, you could say “at least she didn’t suffer any longer” or you could say “how cruel that she was taken from you so quickly”, either way, we lost our much loved mother, grandmother, aunt, sister, daughter and friend on 3rd April 2017.
The funeral was on Friday, which was 25 days later. People say “That’s a long time to wait” and “Oh I’m sorry it’s not sooner” but I liked the time. I don’t understand the rush. Between death and funeral there is a sense that you have not yet let that person go. Once the funeral is over, it’s all over. And yet it’s not.

I’ve been functioning normally. We had to move house and I’m currently job hunting. We have two children under four, so functioning was the only option. Yet friends were concerned, was I really ok? Was I bottling it all up? 

It felt like there was a movie moment expectation that I should be a bawling mess on the floor. But I was having coffee and singing nursery rhymes with the kids. I was clearly not ok because I was seemingly ok.

So what is the answer? Should I be in tears half of the day and should I ensure that’s when someone is around to see it? I actually started to wonder if I was grieving properly… But look, I’ve done this before, I’ve lost important people, but I didn’t have children then. You can certainly afford yourself more wallowing time when you don’t have two children under four. And anyway, grief is different for everyone.

You can pause it a bit. I guess you could say that amongst the singing nursery rhymes and answering job interview questions I’ve had my “moments”. Random tears, random staring into space as stuff runs through my head. She really has gone. 

When we first found out Mum was dying I had decided that at 3 and a half, Audrey would forget her and that would make life easier. No explanations, no upset. However, I’ve realised that actually, Nanny can “stay alive” a little longer in order for Audrey to lock her in. She recognises her picture, she knows her voice (I still have some voicemails on my phone) and she knows her house. We arrived for the funeral and the kids were hanging out at Mum’s old house with Bibi (paternal Grandma) and some friends whilst the ceremony took place. Audrey looked around the living room; “Mummy? Where’s Nanny?” a poignant moment and of course it brought forth a tear, but honestly I was pleased. My clever little girl knew where we were (Nanny’s house) and she asked a reasonable question. I don’t need to keep telling her Nanny is gone. Because Audrey will keep her alive for me. As will Rex. The next generation. Their Nanny-inherented-eyelashes fluttering at me everyday.

My distractions.

Mother


As the UK celebrates ‘Mothering Sunday’, a plethora of cards are being opened (my mum likes the ones with long cheesy poems in, the more words the better) and flowers are being plonked into vases.

Maybe you’re having a roast dinner. Or some afternoon tea. Mostly likely you aren’t talking much about motherhood. You may even have found yourself saying it’s “commercial rubbish”; a day dreamt up by card companies to make more money.

As a mother of two under the age of four, in motherhood terms I feel I’m right in the thick of it. At least I think I am, oh god, tell me there isn’t a more difficult stage?!? And you see, becoming a mother makes me think about my own mother. It makes me look at her differently.

My mum has always seemed nutty to me. Sometimes in a nice way, sometimes in a frustrating oh-you-are-paranoid-because-you-read-the-daily-mail type way. When we were kids she used to sing a song about being carried off to the funny farm, oh what a silly mummy we had! But of course now I see. Now I know. The funny farm song has loomed for me on more than one occasion and my kids are both still under 4! I was the youngest of four. At some point she had two teenagers, a 4 year old and a tiny newborn. Now that is mental health worry territory! But wait, that’s not even the whole story…

When I was born, my mother had breast cancer. I was induced a little early so she could have a mastectomy and some radiotherapy. I was cared for by my (turning 98 years old this year!) Nan, my mother couldn’t breastfeed me, she couldn’t even hold me when she’d had her radiotherapy. I find it baffling that this rocky start never affected our relationship. That is to say, as a child, teenager and grown up, I always felt bonded to my mum, even if I did like to mock or scold her for being crazy/paranoid/irrational! But what she must have been through physically and emotionally in the first year of my life is difficult to imagine, as well as the rest of the family. I was unaffected by this traumatic time because I was just alive, sleeping, eating and pooing, unaware that Mum nearly died. She must have gone through hell.

Beyond this incredibly difficult time in her life, which we all got through, my mum then had to raise two small kids and two in their late teens as a part-time single parent; we moved to the coast and my father worked in London, staying there Monday-Friday, coming home on weekends. I used to think Mum was being dramatic saying she was practically a single parent, but of course now I know how much I appreciate adult company and assistance every evening- the countdown to 6pm each day. I can now see why she was a little bit nuts.

Since I’ve become a mother I’ve probably spent less time with my own. She’s gotten older, stopped doing things and I’ve been massively distracted by two little people to keep alive. The days of meeting for a shopping trip and a bowl of cappuccino in Costa have long gone, now it’s more a monthly meeting where I try to talk to her whilst every so often stopping to say “No Rex, be gentle!” Or “Don’t eat that!”.

My mum is ill. Well, it started as ill. It soon became scans and hospital appointments. Then it was potentially treatable cancer. Now it’s terminal cancer. So after being my original benchmark for what happens when you have cancer (you survive), she’s now become like the others, a cancer sufferer, not a survivor.

So we are celebrating Mother’s Day knowing it’s likely to be her last (I’m not sure celebrating is the word).

People say I’m strong, I don’t feel it. Truth is, I have to park this. Put it in a box on a very high shelf. Zip it up. Stash it away. I cannot let the feelings flood in because I have to function. I have my own little family now. We’re moving in a few weeks and I’m filling in job applications, but aside from these ‘big’ things; I simply have to drink tea, wipe bums and microwave sweet potatoes, because life goes on. 

I’d actually quite like to smash some things. Punch some walls. I’d like to run until it hurts and fall down on the ground breathless and sobbing. However I recognise that won’t help my mum. Sheila doesn’t need me to break, she needs me to be that strong person people think I am.

Happy Mother’s Day to you and yours. Maybe hug a little longer, maybe talk about what those early days were like for your mum. Because they are tough for me, they were tough for my mum, but I know it’s all worth it.

Mum and Dad in their dinner dance days.
On my wedding day.