I have never lied about my age (well I obviously have, but to be older and go clubbing), my mother raised me to understand that it was pathetic to pretend to be younger because it’s nicer to look younger than your age or indeed look your age, than lie and have people thinking how you look much older.
Like all the women that have gone before me, I just don’t feel forty. I remain confused that I have come to a point in my life where I am unquestionably a grown-up, have children that rely on me, a husband, a home, a car, bills to pay… but I could still happily live off a diet of ice cream and repeats of Friends.
I am a hoarder and so, when recently attempting to clear out some remaining boxes of my stuff still stored at my parents’ old house (to be sold this year I hope), I found a fabulous piece of writing by my 11 year old self, describing my life at 40, complete with a drawing!
Now, part of this was definitely written with the teachers in mind (I never wanted to be Prime Minister) and clearly most of it is a child’s idea of successes (houses, yachts), but I’m pleased that I know now that my achievements in life are not “things”, it’s not even that I managed to get married and have kids. What I’ve achieved amounts to something very simple: happiness. Of course I don’t mean I’m happy all the time, living a perfect life… and god knows I’d still love a house in America with dogs and a swimming pool (and yes, recycling bins!), but I found the love of my life and we made two amazing children. That’s not too shabby.
And… I’m going to say it even though it makes me feel sick; I didn’t get cancer. You see, if my mother was here, she’d be able to recount giving birth forty years ago. She was 35. She could tell you the names of the nurses that made her laugh. She could tell you what it was like to be induced so that the baby was out and her cancer treatment could begin. She would survive a further 38 years.
She could also recount how at forty, she had a divorce long behind her, a second husband and four children and (I’m pretty sure) that we all moved from London to Littlehampton on her 40th birthday, arriving in the evening to find the previous owner had taken all the light bulbs. We had to get supplies from the corner shop and we had corned beef sandwiches.
So I guess what I am saying is that I don’t care that I am older. I don’t really feel funny about the significant birthday at all. But I do feel strange that my parents aren’t here with me. It’s absolutely mind-blowing to have reached an age where I remember my mother so clearly – she was always 40 something to me as a kid and she was always old. And I’d like to laugh with her about that.
Since Audrey started school last September I have had quite a few texts and calls relating to her falling at school. Sometimes she trips, but often than not she is knocked over by other children running or playing nearby.
Yesterday I had one of those calls. I had just calmed Rex from a grumpy car nap wake up and I was preparing lunch when the call came. The school nurse calmly explained there was nothing to worry about, but that Audrey had recently been in to see her, having fallen in the playground, onto her face. Cutting her lip. Hitting her tooth (which doesn’t seem loose, don’t worry). She’s fine now. She also got quite wet so could I bring a coat at pick up? Eek.
I did my bit. The equivalent of smiling and nodding but down the phone (“Mmm, ok, ok”). I hung up. And then I cried. I went through what I assume are cliched phases – upset (cry cry), angry (why wasn’t someone stood right by her?!), acceptance (but they said she was ok) and helplessness (imagining her so far away from my arms, hurt and crying).
I pulled myself back together and sat with Rex to watch Peter bloody Rabbit for the tenth time this week and eat lunch.
If you don’t know; it is torture to hear your child has been hurt. “Some older boys were running past and they knocked her…” Did they notice? Did they care? Did she scream? Sob? Ask for me? Did someone cuddle her? Did she bleed?
Yes, torture. I still can’t quite get over how long the school years are. How many more of these calls will I take?
Interestingly I also had a call from Audrey’s speech and language therapist (SALT), to discuss her progress ahead of her education, health and care plan. She expressed how Audrey could benefit from her 1:1 taking a step back to allow her to play with her peers. It made me see more clearly (because at that point I was stupidly wondering why her 1:1 wasn’t basically holding her hand, stood exactly next to her like a bodyguard to prevent her getting knocked over!). There are times to be involved and times to step back. Obviously she can’t really have someone protecting her at all times. Plus she does need to have a full life experience (bumps, bruises and all).
The SALT was full of good things to say about Audrey’s progress and abilities, which was a nice uplifting call to take after the horror injury call!
And when I went to collect Audrey (expecting a gaping wound in her lip), she was fine. A graze on her lip (barely noticeable), still full of beans and thrilled to see me, definitely not scarred for life in any sense.
Yet still I found myself picturing the moment over and over. As I was brushing my teeth that night, I imagined her getting knocked over and a full shudder ran through my body and my stomach flipped. I felt sick. My sweet fragile little girl. I now completely understand why my mother used to describe as as her “precious jewels” (we thought she was such an embarrassing loon).
And so, today was another dance class trial. One where I should drop her off (but they allow you to stay for the first session, so of course I stayed!). But I guess I have to take a step back and start allowing her to get on with things, in the same way I do dropping her off at school.
I watched her today, filled with pride as always. She was like Phoebe Bouffay “I’m totally doing it!” and that was awesome.
I mentioned on Instagram the other week about a clunky moment when a pediatrician asked if Audrey was being invited to birthday parties. I found it quite odd. Audrey has been going to birthday parties since birth. A friend made me realise this was the doctor’s way of measuring that Audrey is being included and has formed friendships at school.
Funnily enough, just recently we have had loads of birthday parties. Audrey loves a good party, however sometimes the bouncy castle is too busy for her. Sometimes the general ambiance is too loud for her. Sometimes she’s just not in the mood. But mostly she enjoys all that comes with sort of event; party music, dancing, party food, pass the parcel… and of course, the wonderful cake moment singing ‘Happy birthday’ – she does this with huge enthusiasm and joy. On your birthday, if Audrey is there, it’s like having your own personal cheerleader.
Last Saturday we went to one of those parties that just wasn’t her thing. We arrived and the hall was loud and chaotic with her school friends running around, making a lot of noise, but she was ok. It was such a pleasure to see her hugging her friends, holding hands, running around together, it was a great feeling watching her being part of the gang.
Then the entertainer arrived. Uh-oh. It started well, Audrey sat laughing along with her friends and I was sat back on a chair, thinking how well she was doing and how far we had come… when she started to look for me with her bottom lip protruding. She came to sit on my lap “Can we go home Mummy? I don’t like it, he’s scary, it’s too loud”. She asked to go to the toilet (a cunning way to leave the loud room) and she did do a wee (hurrah!), but we ended up waiting in the hallway and then the kitchen, because she was too upset by the noise in the main hall. Once the entertainer finished, there was a party tea (which she didn’t eat) and a brief moment with music where she ran around with her friends (and my goodness 5 year olds are raucous), but I was relieved and thought we’d see this party through… when the entertainer came back to do his closing set. So we left early.
Where we (society) have come so far is that Audrey was even invited. She is part of a mainstream school class and she is treated the same as her typical peers. Also, everyone is understanding. No one is asking “What’s wrong with her?” (because she doesn’t like the entertainer, but every other child does), people are not making us feel weird. It’s fine that she’s not feeling it and off we go.
One thing I know, Audrey will always be invited to birthday parties. Yes, the kids will start to cherry pick their favourite friends and everyone should have that right, but I am confident that my kind, gentle, fun little girl will be considered an asset to a party by lots of children.
We have another school friend’s party in February. I know it involves a big bouncy castle and maybe some soft play, I suspect it won’t be her thing, but we will go. Because we have to try. Audrey has been to the cinema, bowling, she has seen live bands, watched parades, been on a Ferris wheel – there are many things I’ve been concerned she might not like… but we tried anyway. Because sometimes she loves things that we might have been told she would hate. Knowing she has special needs means we are aware of some of the challenges she may have, but nothing can predict your child’s personality and their preferences, you just have to live your life and discover together, one party at a time!
Potty training was always something I feared; I simply decided that for a child with a learning disability it was worth waiting for her to be older and have a better level of understanding before even attempting such a task… but also I hoped she might just magically figure it out for herself.
Before she was two, Audrey started to shuffle off to corners of the room to poo in her nappy. She often signed for a nappy change. We were attending Whoopsadaisy around this time and Audrey was learning to stand and walk, they encouraged sitting on the potty and subscribed to a different method to me – get them on the potty early and chance a pee here and there, hopefully she’ll get the idea. Well she did a wee on the potty a couple of times by chance, but it didn’t make sense to me work at it so early on.
I guess found it odd to encourage a child that couldn’t walk or stand to use a potty and once she was two and a half, Rex was born and the last thing I wanted to do was potty train! A discussion with a helpful health visitor made me feel better about that – she said “do not try to potty train whilst dealing with a newborn”. So I didn’t.
Time went by. Pull up nappies were used, potty books were read… it felt like we had so much time (since we deferred Audrey’s school start). Yet she started school in nappies.
We had many wee successes, but she was wasn’t consistent. I knew she didn’t need to be in a nappy all day because she could go hours without a wee, but I wasn’t convinced she actually knew when she needed a wee. I had some discussions with healthcare professionals about her being constipated quite a lot and they said this could mean she feels “full” all the time and that it wouldn’t be as easy to identify needing a wee.
With little effort, it wasn’t long before we switched the pull ups to knickers because Audrey decided to hold her wee all day – she would just do a wee in her nappy in the morning and a wee on the toilet at home before bedtime. Great that she was dry, but unhealthy and stressful for me (worrying about urinary tract infections!) and she also had a couple of accidents at school, wetting herself when falling over.
We’ve had the Christmas break and suddenly Audrey has been really getting it. Asking to go for a wee (even out about) in the morning and afternoon and successfully having a wee. Oh how we celebrated! She’s been back at school over a week and they’ve only seen one wee from her…! And so we are back to where we are started, but at least she is consistently dry.
Well, I have a second child. Did I mention? Ha. He is 3 next month. And… I know nothing about potty training!! Rex requested to wear big boy pants and I thought “Wow, it could be this easy, maybe I don’t need to actually do anything to potty train this one either…” – that was before 3 wee accidents and a quick return to nappies.
He does hide in a corner to poo (in his nappy!), he responds well to rewards, so we could be on our way, however he doesn’t seem to quite “get it” yet and the thought of wee every where just puts me off. Both are in nappies at night time. I thought that was fairly common, but after a chat here and there with other mums, I find many have nailed the night time training too by 3 or 4 years old.
Advice I have heard…
“Don’t leave the house for a week.” Not an option. Rex is feral at home, we’d go mad.
“Take in a potty about 10pm and put the sleepy child on for a nighttime wee.” This maybe in our future, BUT, Audrey is very sleepy and I’m not sure she would wake enough to wee, Rex is the opposite and I fear we’d wake him up and not get him back down.
“Take them to the toilet every 15 minutes.” Well this is practical if we follow advice number 1. But if we want to live a normal life, going outside, doing things… I just don’t know how I would get Rex to the toilet that much.
“Reward them with chocolate/a sticker for every successful toilet visit.” Ahh yes the bribe. This one is interesting as Audrey had a chocolate button for a wee for a while and Rex would get one too (or face his wrath!) and now it’s his turn, he doesn’t actually seem that fussed. I suspect that off the back of Christmas-let’s-have-chocolate-everyday he doesn’t feel he has to work for it.
“Put pants on with a nappy over the top.” We did actually try this one with Audrey for a bit, but she didn’t seem to care that she was wet and she got sore. I think Rex would get confused by the double.
“Let them run around with nothing on their bottom half.” A great one for summertime. Rex would gladly do this, but I’m also sure he’d wee everywhere!
Part of me feels like it really doesn’t matter once both my children “nail” this toileting malarkey, another part of me feels huge pressure to get them there. Both are really great (chatty!) communicators and they are both very aware of the process of toileting (we have an open door policy!), but I am lost in the world of potty training.
This could be the secret of course; do very little and the kids get it anyway. Fingers crossed.
Christmas was once the most excruciatingly exciting time of year. From age 3 to 13ish it was the highlight of life, from the build up (decorations going up, rifling through the wardrobe for presents, the BIG shop that included fizzy pop and chocolate) to that fateful night where the anticipation is just too much and you cannot sleep to that morning (eek I am sure we were up at 4am sometimes!) where the presents were ripped open and the day was pure joy and chaos.
We had big family Christmases, I think at their peak there was around 12 for dinner. My dad’s parents were not around (aside from his stepmother but she wasn’t with us Christmas Day), but my mother’s parents were close (Granddad was hilarious and a must-have for family games), I had three siblings, two old enough to have partners/kids, sometimes my uncle would join us with his wife, I think we had a great nan around too. We had one of those extendable tables and garden chairs with cushions were added into the mix.
I always had a mince pie for breakfast. We always played charades and various games in the evening. We always ate too much. I would have a Christmas Day outfit planned (a velvet dress generally, ooh I remember a year with ski pants and a roll neck!). My mother would embarrass me with her interest in flashing Christmas themed earrings and knitwear. My dad made me ‘snowball’ cocktails (don’t worry, mostly lemonade).
Sometime in the early nineties I accompanied mum to the local garden centre to finally update our hideous Christmas decorations. For years we had dragged those sparkly pink, purple, blue, silver… (you name it) foil garlands and lanterns (that hung from the centre of the room to each corner) down from the loft. We had a toilet-roll-holder-type-angel for the top of the tree. We revamped things that year and switched to green and red traditional stuff and ditched the tinsel. It was a big change back then.
It was in my late teens/early twenties that it really hit me that Christmas would never be the same again. I was no longer filled with that crazy level of excitement, our numbers had diminished a little, but most of all we were all grown up. Only a single nephew remained “young enough” for true Christmas excitement… for me, mum’s novelty stocking fillers became eye-rollerable rather than excellent (and she was an absolute stocking-filler-pro! Pre-internet we had lots of personalised items with our name or initials on, as well as very bizarre stuff like chocolate shaped like sardines in a tin, I LOVED my stocking in its heyday).
By the time I had met Ted and we tried that Christmas juggling you do when you are first a couple and want to spend Christmas together, but also do not want to leave your traditional family Christmas behind… I was ready to accept that Christmas had changed for good.
I think that made it easier for me to live with the fact that now, Christmas is very far away from that of my childhood. I have no parents, I have lost one sibling (and the connection to her two grown up children is weaker), My eldest brother is… well that’s difficult to describe, let’s just say he’s ‘a problem’ and my other brother battled cancer this time last year. I have one grandparent left, but she doesn’t know who I am and she is in a nursing home.
Yet none of this has ruined my enjoyment of this time of year. It has definitely affected it, you can’t escape the sadness loss brings, but that’s life. Naturally every emotional Christmas advert sets me off. Every Christmas song. I am either smiling or crying or both. But I’m a grown up now, it comes with the territory.
My mother was also a fan of Christmas. She liked to complain (in more recent years) about the stress and the effort, but she still had two Christmas tress and a crazy amount of decorations. She would still stuff the cupboard with nuts, chocolates and crisps even if only a few people were visiting, hey even if no one was visiting! Now I am in charge of creating the magic (hiding the presents not rifling through the wardrobe to find them!). Now I want to wear stupid Christmas jumpers and hats, now I see the fun in the tat.
And of course Audrey and Rex bring a whole new level to Christmas. We have their innocence and joy to surround us and their happy faces at what will be (in the scheme of things) quite simple presents. I took Audrey to an eye test last week and in the car she was singing along to Wham’s “Last Christmas” (she catches on to familiar tunes quite quickly and she’s definitely enthusiastic, if not in key), it was lovely.
The thing is, I like to think that everyone is in a better mood in December. So what’s not to like about that? A couple of weeks ago, a friend posted on Instagram about Kindly and the project they were running for people to write a letter for someone who is isolated at Christmas time. So I signed up immediately and within hours I had an email confirming I would be writing to a woman called Sheila (which was my mother’s name). I mean, obviously I was in tears but I was also so wonderfully uplifted by this tiny coincidence. That same day, I had stopped to donate to an old man collecting for the Youth Cancer Trust in our local Tesco and we had a very long chat. He was perplexed by the amount of people who completely ignored him saying “Good morning” and I told him about Audrey and how she loves to say hello to people but often they are just in their own world (or on their phone/listening to something on headphones). It’s part of life now to be zoned out and not in the moment with the other humans around you.
Which is why it is important to remember that Christmas is a time to connect with people. I had little wobble the other day when our ridiculous bumper pack of Audrey’s school pictures arrived and I thought; wow, we really don’t have that many people to give these to. But then I remembered that we do. We still have lots of family left and we have many friends who are “aunties” and “uncles” to our children. We have a wonderfully wide network and I am so grateful for that.
Every Christmas will be different, it may have felt like pure light as a kid and now it has darkness too, but I can handle that, because now my children are building their Christmas memories and they only see the light.
As we were sent a copy of Pop Reads to review, it inspired me to write this post about Audrey and Rex’s favourite books and songs (basically because I know I’ll forget and I want a record (no pun intended))!
Pop Reads books are by a Brighton dad – licensing Sony/ATV music in children’s book form – they are the only books of their kind and they have a Kickstarter which you should check out here.
We got “Perfect Day” and I have to be honest, the first time I sang it to Audrey, she got quite annoyed; “You can’t sing it!! You have to read it!” Ha ha. We had left the book on the coffee table and a friend read (sang) it to them whilst we were out; “That’s a surreal book isn’t it?” he commented when we got home. Apparently his singing was allowed… anyway after that Rex was singing “Perfect Day” and thrusting the book in my hand – a hit! Since then, I have tried reading the book to Audrey and she insists I sing it! Success! As singing and reading are two of our favourite pastimes, we think Pop Reads is a great idea – check out some of the other songs available; Can I Kick It?, ABC, Girls Just Wanna Have Fun, Race for the Prize and I Wish it Could be Christmas Everyday.
Audrey and Rex’s favourite songs include (I’m now wondering if any are Sony and potential future Pop Reads…):
Roar – Katy Perry
Audrey used to absolutely HATE this song and I really don’t know why. She would freak out if it came on the radio, saying “I don’t like it!”, but then one day, the lovely Singing Hands ladies did a Makaton signed version and whadayaknow? I now have to listen to this song at least three times a week.
Hocus Pocus – Focus
We were listening to tbe Baby Driver soundtrack and Audrey took to this straight away. Sometimes songs just reach into her soul and she loves them instantly. She would call this song “Lolly” (because of the yodeling), but soon got the real title thanks to our Google home thingy (“Hey Google! Play my Focus!”).
La Bamba – Richie Valens
This one is one of Rex’s favourites. We go to a weekly music group called Little Pickles, run by a guy called Dave, who peppers the standard ‘Wheels on the Bus’ moments with snippets of old and new pop songs. This one spoke to Rex and he likes to sing it and dance to it at least once a week.
The Lion Sleeps Tonight – Tight Fit
Again, one Rex fell in love with from Little Pickles, but one I think that stuck after some YouTubing with my mother-in-law.
Ice Ice Baby – Vanilla Ice
This was Ted’s entry to hip hop in 1990. So naturally he tried it out on Audrey and again, instant hit. She was OBSESSED by this one for a while, but it has died down recently due to Roar.
Uptown Funk – Bruno Mars
Audrey really loves the Carpool Karaoke with Bruno Mars, but this song is s stand out classic that both kids love a boogie to.
I Got the Moves – Habibi
We were listening to a friend’s radio show (Tuckshop Community Radio) when this came on and both kids (Rex was about 1, Audrey almost 4) danced and danced.
Wild – Emily Hughes
I stumbled across this in the Book Nook and instantly loved the illustration, partly because the feral little girl has an Audrey vibe. I had no hopes for the kids liking it as they are so unpredictable and make me read them lots of books I hate, but this one ‘spoke’ to them. They love her expressions – especially when she is angry and “enough was enough!”.
My Teacher is a Monster – Peter Brown
This was a gift for Audrey ahead of school starting, but strangely it was Rex who became fixated on this one and chose it every bedtime for weeks.
The Wolf, the Duck and the Mouse – Mac Barnett and Jon Klassen
Another sneaky Book Nook find that I just loved for me. Turns out that the kids and I share the same taste quite often because they love it too. They particularly like shouting “Charge!” and they call this one “Oh woe!” because of the wolf’s cries.
The Tiger Who Came to Tea – Judith Kerr
My favourite book as a child. I loved the pictures and still remember loving the bit where they go out in the dark to a cafe! Wow. The kids love this one too but I think mostly because the tiger is exciting, going out to cafes is pretty standard for them.
The Paper Dolls – Julia Donaldson
Well, who am I kidding? They like tonnes of Julia’s books (Zog, Cave Baby, The Gruffalo…), but this one is my favourite. Audrey and I actually stumbled across this one in the library and it was her go-to bedtime story for a very long time.
Please Mr Panda – Steve Antony
This one was my mother-in-law’s discovery and we love the grumpy panda and his rude friends.
Superbat – Matt Carr
Audrey was going to a superhero-themed birthday when I discovered this book as a present and decided to get her a copy too. The characters have excellent names (Pat, Frida…) and when she’s older she will realise she is learning a lot about bats!
Where the Wild Things Are – Maurice Sendak
An absolute classic with beautiful illustrations, try humming Toto’s ‘Africa’ during the wild rumpus (it works for our two)!
I Dare You Not to Yawn – Hélène Boudreau
Another lucky library find; this is a great bedtime book as it definitely gets us all yawning and feeling sleepy, it’s also a lot of fun.
In truth, the book list could go on and on. They go through phases of choosing the same titles at bedtime over and over, but then a new favourite comes along… long may their love of books and music continue!
Last week I had a rare full day alone with Audrey (as we are in the school holidays and Rex was at nursery). We went in the car to a lovely play park and cafe by the beach. We picked out our best pebbles and I told her how I used to go to the beach with my mummy and collect the best shells. Audrey has a wonderful way of interacting, she’s supportive and interested; “Oh wow, with your mummy? That’s great!”.
We had a play in the park, we shared scrambled eggs and toast in the cafe. Audrey bossed me around a bit, she bossed around others too (telling a mum to “Calm down” when she was telling off her toddler!), we got back in the car and headed to the supermarket.
She flatly refused to get out of the car when we go there – told me she wanted to stay put. I tried to be as gently as possible in convincing her, but I was getting no where fast. I eventually had to man-handle her out and then distract her with news that the trolley had a ride-along buggy board! Fun! It worked.
At home we were both tired and sat watching a film until I thought it best to head out again (or we’d easily watch TV all afternoon) and we walked to our local park.
None of this is a big deal… but it was a big deal. For Audrey to walk to the park and back and not ask to be carried, for her to interact and play with other children once we got there, for her to stop sensibly to cross the road and hold my hand – things one might take for granted in a typical 5 year old – I do not take for granted. I revel. I praise. Oh wow… she is going to have such an inflated ego!
Because none of this simple stuff was expected, because her default position is a condition that “limits”; I am constantly lifted and amazed by her. As we walked to the park, having a conversation, I thought back to the leaflet we were given when she was born. It’s intention is not negativity, it aims to give you a fair account of what to expect of a child with Down’s syndrome; but they have to cover everything. So the list goes on; language delay, possible hearing problems, possible sight problems, speech may be difficult to understand (if they master speech at all), a long list of health issues, challenging behaviour, the autism spectrum, food problems, thyroid issues…. it goes on and on.
To be honest we hid the leaflet away and didn’t return to it. Sometimes something will get mentioned by a professional “Of course you are aware that children with Down’s syndrome can be prone to…” and I think “No, I wasn’t aware of that” and it doesn’t matter.
I know that knowledge is power. I know it is good to be prepared. I also like that my child leads the way a bit. There was no leaflet with Rex; we just muddled our way through.
I know that for some, that negative list in the leaflet is a reality and they aren’t walking to the park with their 5 year old with DS chatting about flowers and “Oh look that’s where I had my birthday party…”, I know we are so lucky. I feel lucky every time she calls me “Mummy”, every time she holds my hand, holds it to her face and then kisses it.
Our life is not without stress – several bouts of diarrhea for the kids last week, the two of them fighting, stropping, running off, challenging me… but I want to remember all the good stuff. Actually, I want to focus on it! Because how else do I get through all the crazy days with these kids?! My magical, crazy and surprising kids, that have no guidebook.