One minute you’re willing your disabled child to learn to walk, then you’re willing them to have the energy to walk to school… the next thing you know they are running off in random directions and you can’t keep up!
My beloved good girl Audrey has discovered the fabulous feeling of freedom. Of running off alone, ignoring pleas, shouts, begs, stern-voice nos… she just keeps going.
I am fully aware that this is a common trait for children with Down’s syndrome (running off). I’ve met many a parent explaining their need for reigns/buggy straps/confined spaces for safety and throughout this I’ve been able to say, “Hmm, Audrey doesn’t really do that”. However she spends a lot of time at school now and not much time outside in open spaces with just me in charge, so maybe there hasn’t been much of an opportunity for the running? Well, she is taking the opportunity now!
This school holiday has barely started and the running off is becoming an issue. There are several reasons this phase is really hitting me hard:
My lack of authority is now obvious. Both children do not seem to respond to me saying no. It’s incredibly frustrating when you try to discipline your children and they either ignore you or find your stern voice hilarious. Everything feels like it is escalating to crazy threats “No more television, ever!” or that a rage builds up and I’m growling at them and dragging them by the arm. Hideous.
Her special needs are now obvious. I’m definitely upset by this “special needs” trait popping up. I hate the thought of anyone seeing me run after her (shouting her name as she ignores me), thinking “That poor woman, life must be so hard with that disabled child”. I just want people to remember that any snippet you might see of anyone’s life is just that – a snippet. So yes, she is being a challenge at the moment out and about, but on that same day she also approached a crying child to check they were ok, she also sat happily and ate her ice cream whilst her typical brother ran riot in the cafe. She also settled at bedtime stroking my face telling me I’m a good girl.
My ability to parent two children feels questionable. This one gets me. If I can’t take my two children out and about without having to chase after one of them, potentially abandoning the other one, then how an earth am I allowed to be their parent? It creates anxiety around every activity I plan and I’m constantly wondering how on earth other mums cope (with two or more moving children)?
Audrey and I have discussed the running off that happened (a lot) yesterday. She has said she is sorry and she knows she needs to do good listening and stay near her mummy. We’ll work on it, but I know it’s going to be hard. It feels like she is changing and I’m struggling with that. I always describe her as a child who like to play by the rules, which remains true in some respects (shoes off indoors, wearing a school uniform), but also she kind of makes up her own rules!
As the summer holidays are in sight and Audrey is 6 (today!) I thought it might be a good time to write about Audrey’s life at mainstream school so far, because here we are, nearly finished with her first year in reception!
I mysteriously didn’t write (even a little) blog post about Audrey turning 5 (I checked back), but here we are welcoming the big 6 at the end of her first year of mainstream primary school and we have a summer break of (hopefully) fun times ahead.
By now I am sure you know I am so proud of my beautiful, clever, friendly little girl. We have come so far since that hot July day in 2013, when she was presented to me and all I saw was Down’s syndrome. What felt like a cruel blow now feels like the best thing that ever happened to us! We’ve had a fun and exhausting weekend celebrating her birthday, she got a doll’s house, her first “Ken” doll (she has mountains of female dolls) and as always, Audrey gave us amazing feedback saying “This is my best present ever” when she saw the dolls house and eagerly introducing Ken to “her girls” (the other dolls).
So I dropped my 6 year old off at school this morning and now I can share with you my thoughts on how things have gone for us, having a child with special needs attending a mainstream setting.
I had many fears about her starting school (even with a deferral making her one of the eldest, rather than youngest in the class), but I also knew that there was a big chance Audrey would thrive in the setting. All the adults that “worked with her” (key person at nursery, therapists, inclusion service etc) would say what a sociable, outgoing child she is and that she’d have no trouble making friends and that reception was all about making friends.
My main worries were “she’ll get crushed to death” – she is small and her low muscle-tone makes it harder for her to navigate obstacles/stay on her feet when getting knocked around. I also wondered if the whole environment might just be too loud and full-on for her.
As I am slowly learning, she is often more resilient than I expect her to be.
She did indeed get knocked about a fair bit at the beginning of school. Things you couldn’t anticipate (tripping on a trolley, getting hit by a rogue ball in the playground) will simply happen in a busy school environment. It is heart-stopping to get the call that your child has had a bump to the head, but she’s survived and I think everyone is aware now that she’s a bit more fragile than some of the other kids.
We had a parents’ evening at the beginning of school and it was so uplifting. We had fantastic feedback about her settling in, making friends, being part of the class and her positive attitude (she arrives every morning saying “Good morning guys!”). Our second parents’ evening was much the same, aside from one tiny comment about how Audrey wouldn’t be reaching her Early Learning Goals. It’s not like I expected her to be performing at the top of the class of typical children, it’s just that I had forgotten that she wasn’t on the same level, I had forgotten because we are so often focused on all that she can do. You can sort of put yourself in a protective bubble, where you look at your child through rose-tinted glasses because they, to you, are perfect. This was just a reminder that our child, measured against “typical” standards is “delayed”.
Put academic measurements aside, look at the bigger picture and you’ll see Audrey attending mainstream school has been a success. She’s made brand-new friends, she’s learned how to write her name (just about), she can sound out and read all kinds of words and she can tell me details about her day. She has progressed physically and mentally just from interacting and learning alongside her typical peers.
Audrey has school lunches – this may have contributed to an improvement in her eating at home too, as she now eats lots of vegetables and is happy trying new things. She always tells me what she’s had for lunch (macaroni cheese and fish and chips are her favourites!) and explained recently that the children line up for a “squirt” before lunch; yes, I was confused at first, but when she mimed it out I realised she meant hand sanitiser! It’s tiny details like this that really show how far she has come with her communication.
The thing is, I can put myself in the position of a parent of a typical child starting reception… you learn there is a child in the class with “special needs”; they need a 1:1. Being brutally honest I do think it would have raised concerns for me. I would wonder: “Will their behaviour be challenging?”, “Will their needs affect the class as a whole?”. So I was also nervous of the the other parents and their attitudes. I wanted to be able to tell them all that they would soon see what an asset she is.
I’m hoping it didn’t take long for people to see that. Audrey’s presence in the class is not a drain on resources. It’s not a waste of time for her to be there learning with her typical peers – it’s a success story and a positive experience for all concerned. She learns through copying, so typical children propel her education and she provides them an insight into disability. She has her challenges and I’m sure sometimes the other kids wonder what on earth she’s on about(!), but also they’ll see she is kind and thoughtful and likes lots of the same stuff they do. I also like to think her 1:1s are an asset to the class because, yes, they are there specifically for her, but they will no doubt help other children when needed.
Everyone has been welcoming and Audrey has made some great friends. We’ve had birthday parties and play-dates a plenty. She’s been on school trips to the local library to see a puppet show, to the zoo, she took part in sports day, harvest festival at the church and she performed in the nativity as an angel. Audrey was recently chosen to be “Star of the Week” (along with other children), getting a certificate and a little box allowing her to take something into school for “show and tell”. My heart is filled to the brim with pride that she is taking part in all these school activities.
She does get very tired at school, she can exclaim “Not again!?” when I tell her it’s another school day, but mostly she bounds into school full of enthusiasm and bounds out ready to tell me she had so much fun.
I know that sending your child off to school can be nerve-wracking for anyone – suddenly your child is spending a lot of time with people you don’t know very well. But it didn’t take long for her to be well-known throughout the school and I have no doubt that Audrey will have many happy years at this school.
And so on to Audrey’s second year of primary school (confusingly; year one). She enters with a knowledge of the school routine, a good group of friends and her can-do attitude! But for now, a bit of summer time fun and a break from the school routine… a welcome break but also a terrifying stretch of days ahead entertaining my two active children… wish me luck!
Accidentally updated this post thinking it was a draft from 2019, turns out it was published (and now republished!).
I’ve made no secret of the fact that when Audrey was born, the little face that popped out looked “different” and my brain flooded with negative thoughts.
Would people want to spend time with us? I assumed not. Would they whisper about us? Stare? Strangely I imagined her finding it hard to make friends. In fact, I thought everything would be hard for Audrey and for me.
In reality, she was a baby. A baby with a tube on her face, yes. A baby with an obvious “condition”, but she could still enjoy a coffee shop visit and baby group like any other baby. I had definitely underestimated humans in general, but I had an awesome NCT crew who were always there for me and were not phased in the slightest by Audrey having Down’s syndrome.
Inside I was still constantly surprised by how welcomed we were at baby groups, how it was never a big deal. I emailed ahead to book for baby massage, with a hard lump in my throat I would type “my daughter has Down’s syndrome and is on oxygen” and the reply was warm and… normal. The teacher confirmed my place and in fact I can remember her words along the lines of “this class will be perfect for her…” and once there, she was fawned over like any cute baby.
In the time that Audrey and I spent at music groups and play groups, she was always welcome and more often than not I would be tearful not because it’s all going wrong/people are being cruel, it was because I was emotional about the fact that she was “fitting in”. When I went to a choir for parents (where the grown ups sing pop songs and all sorts while the kids just play), Audrey would often stand at the front and mimic the teacher, where the other kids had absolutely no interest in what the grown ups were singing, Audrey wanted to be involved and she wanted to conduct the choir!
Of course, we’ve had some incidents, but it was less-so staring/nudging/whispering, more straight forward “My friend had one of those, couldn’t talk” or “What’s with the tube on her face?” – the bluntness was laughable. And of course she was (still is) small for her age, so you get a sympathetic head tilt or the question “Was she prem (premature)?” when discussing her age. She wasn’t premature (she was a few days late actually), but I found the confused look that followed that answer so uncomfortable, I would sometimes just say yes, she was premature!
Once she was off oxygen, sitting up and joining in, quite simply the staring, the whispering, the attention: it was all there but not in the way I had dreaded. Audrey was (is!) a superstar. People are drawn to her because she is cute, friendly and funny. She was often a very enthusiastic participant in music groups, clapping, singing, head shaking. She would say hello to anyone, asks people’s names, approach children/babies if they are crying to see if they are ok. I’m more surprised now if people don’t stare, if they’re not interested in her, because she is interesting!
Once she started school, we found a whole new audience. In reception, if we were early and waiting for the gate to open, I would see the nudges… older girls looking at her like a living doll, – they would look like walking heart eye emojis gazing at Audrey. People shouting “Hello Audrey!” when we are out and about and she regularly got presents/pictures/notes in her school bag from her friends at school. She would march into school with enthusiasm each day (often saying “Good morning” to the teachers at the gate) and she would bounce out each afternoon and throw her arms around me. She is exceeding those low expectations I had of her in those early days (based on an outdated view), everyday.
I know that our experience doesn’t cover everyone else’s – we are lucky in that her needs are not as complex as some, but we’ve had our moments. We’ve had to leave noisy parties and take time outs from events – sometimes I’ve felt uncomfortable in those situations, I’ve felt stared at. Just recently she wouldn’t hold my hand in town and I was gripping her by the wrist as she pulled away and got angry with me, I felt very much like the mother of a special needs child, gaining sympathetic eyes or even those stares that seem to say “I could never handle a child like that”. But those occasions are rare and the upside of the whole experience of having a child who is different is the immense joy we take in the little things she excels at and achieves.
I never knew that Audrey would have this quality that makes me want to show her off to as many people as possible. I never expected to feel like I was accompanying a celebrity to the park. Of course now, she is a (albeit low level) celeb as we’ve appeared on the CBeebies show, Our Family. Which has meant a few people have asked if she is in fact the Audrey off CBeebies and I love that typical kids will have watched her and enjoyed her episodes, without a thought given to her being “different” or weird. She’s just another kid featured in Our Family doing fun things.
Audrey is turning nine very soon and I having said she still gets attention, I have noticed that it has quietened down as she’s gotten older. She is less of a living doll now she’s a bit bigger. My thoughts have certainly started to turn to when she’s expected to be independent, but she won’t be.
I need to rant about buggies/strollers/prams and general small-kid mobility. I suspect this will be quite a dull blog post for many, but read on if you fancy hearing about our experience with many buggies…
We went shopping for our first pram when I was pregnant with a baby we knew nothing about (which is how it works for most people). We still joke about when we were approached by a salesperson in Mothercare, offering us options I said “We’re not Bugaboo people”, because I thought £500 was a ludicrous amount to spend on a buggy. As it happens, we did decide to buy a Bugaboo Bee. It remains my favourite buggy to date, because it was light, easy to steer, Audrey was very snug in her cocoon and just as happy when it adapted for her to face the world, it served us well.
What’s “funny” (incredibly annoying) about the buggy situation is that we chose one that didn’t have a carrycot option, so if Audrey was asleep in the Bugaboo and I wanted to go home to our first floor flat, I had to carry the entire buggy up a set of external steps, a couple more in the hallway and then a double flight to our flat door. Oh and did I mention I’d had a c-section? And that she had an oxygen tank attached? Ha ha, yeah not that funny. I may have picked an option with a carrycot had I have known Audrey was going to be such a good buggy sleeper… but then again it may have been the cocoon on the Bugaboo Bee that she loved (many of our friends had babies unhappy in carrycots), I guess we’ll never know.
Anyway, Audrey absolutely loved sleeping in her buggy, so it was incredibly frustrating to me that I could rarely sleep when she slept, because I couldn’t get the whole thing into our flat without a lot of heavy-lifting and risk of waking her. But we didn’t know much about baby naps when we made the purchase. We borrowed a Babybjorn sling which was great too and when the time came to return that to my friend (who was having twins), we purchased an Ergo which goes up to age 4.
When I was pregnant with Rex, I bought a secondhand cheap Maclaren stroller to use on “nursery runs”. Because Ted was able to do drop off, I figured he could take Audrey in and I could use the other single with Rex. I also panic bought a double Phil and Ted’s (quite an old model) from a friend, ready for trips out with both of them. So we had three buggies and a sling! We had moved to a house with no steps at the entrance – I was very much looking forward to wheeling my sleeping baby in so I could nap!
As it turned out, Rex hated buggies. He would scream and cry and eventually fall asleep but if the buggy stopped then we were screwed, he’d wake up and start crying again. So he was on my body pretty much all the time.
My life was sling and single buggy, but when I attempted the double Phil and Ted’s double I absolutely hated it. The kids heads would bash against unpadded metal bars, the hood was absolutely useless and didn’t cover the child on top, the child below had no cover (other than the kid sitting on top of them), it had a stiff metal foot brake and the steering was terrible. It’s safe to say I was immediately stalking other secondhand buggies on eBay.
We sold the dodgy Phil and Ted double, sold the Bugaboo and bought a secondhand Baby Jogger City Select – a fantastic double (but quite bulky so difficult to get in our small car’s boot). I also bought a (new) Baby Jogger Vue (for buggy training days with Rex whilst Audrey was at nursery) and this left us with 3 buggies in rotation! Ted was beginning to think I was some sort of buggy collector. The Vue was good because it’s like a Maclaren stroller, but can be used from birth with a facing you option.
Eventually Rex got used to buggy life and we sold the old Maclaren. We we down to just two buggies (closer to a normal amount of buggies?!), I figured we’d keep this all going until both kids showed more promise of walking further, but unfortunately the double buggy broke (the main frame) and it pushed us to make a decision and try life with a single buggy and buggy board.
Wow this really is a thrilling tale.
We’ve been doing fine without the double, but not great. Usually Audrey is sat in the buggy and Rex is walking or scooting until he gets tired and then he is on the board. If we have the scooter it’s quite a balancing act for me – I feel much like a cart horse as I push them and all our bags etc, the scooter slipping off the buggy frame, usually with someone complaining.
Yesterday morning Rex decided he wanted to sit in the buggy, so Audrey walked for a short while (she can get almost to school, almost!), but she hates the buggy board and so it was stressful convincing him to let her sit for the last bit. I basically forced him onto the board and he cried and whined until we got to school, where he then wanted to walk to preschool whilst I pushed the empty buggy.
It won’t be long until they are both too big for a double buggy anyway, so I have to learn how to get by and in a new twist – we have a special needs buggy coming our way today!
Audrey saw the physiotherapist and occupational therapist last week and in discussing her stamina with walking, we were told that after she turns 6, we cannot apply for a special needs buggy, they would provide a wheelchair! Which is definitely not necessary, so I’m pleased we had that meeting as we were able to apply for and receive a special needs buggy that will be big enough to cover this time and on wards whilst she is a little bit too big for a standard buggy, but clearly not “disabled enough” for a wheelchair.
I was actually prepared to just “muddle through” with a single buggy and a board, but since doing the drop off and pick up this week I am unsure it is going to work. There is no escaping that the board is not for Audrey – she doesn’t have the balance or core strength. It was something Rex loved (novelty value), but now he is unwilling to be the one who is always relegated to the standing position.
Yesterday he was sat in the buggy and unwilling to give up his seat. Audrey walked for a very short while before complaining and as I stood begging her to give the board a try – just to the end of the road, pleeeease, Rex simply climbed out of the buggy, silently walked around and stood on the board. It was a huge relief that he helped me out for once. We got half way home before he started complaining and he got the seat whilst Audrey walked, all the time whining and saying she wanted to be carried.
I had taken it for granted that they would both simply get used to walking further, but unfortunately a tiring day at school/nursery just doesn’t lead to energy and enthusiasm for walking home. Dare I suggest I panic buy of a double buggy?!? Ted will be over the moon to try out yet another model…!
It’s been a year since my list published on Mother of All Lists and reached a new audience with “our story” for World Down’s Syndrome Day. We’ve also been featured in magazines Best and Take A Break, on blogs like Mental Mutha and Gas & Air. Basically that’s an aim for me – not only to reach someone who needs us (a new mother to a child with Down’s syndrome or someone with a prenatal diagnosis), but also to find those who have no knowledge or connection to Down’s syndrome. To open their eyes and make them think. For them to see that Audrey is a human being with a right to live her life to the fullest.
You see, on World Down’s Syndrome Day I often feel overwhelmed by the content. Videos, articles, stories, clips, blogs – all devoted to raising awareness of Down’s syndrome. The community is trying to make people aware that this is not a condition we need to eradicate, but it is something we need to learn more about and one we can celebrate not mourn.
I know that we are incredibly lucky with Audrey and her abilities. I also know that had we sat her down in a corner and ignored her (true description from a mother of how her baby with Down’s syndrome was treated at a nursery in the 1960s), she would not be doing so well. She thrives with love, care and attention and with a place in the world among her typical peers and her family.
It pains me to think that someone might receive a prenatal diagnosis of Down’s syndrome, be at a crossroads as to what to do and decide to terminate based on dated information, lack of support or because they aren’t given any other option. Medical professionals and organisations that are there to assist with a prenatal diagnosis can be surprisingly callous or biased when offering up ‘options’, imagine receiving the news that your unborn child has Down’s syndrome and immediately being asked “When would you like to book in your termination?”. I’ve heard stories of women being continually asked “Are you sure you want to continue with this pregnancy?” after they have made their position very clear.
Just to explain for anyone who doesn’t know – babies prenatally diagnosed with Down’s syndrome can be terminated up to TERM. Because the UK Abortion Act 1967, states that there “is no time limit on the term of the pregnancies” when there “is a substantial risk that if the child were born it would suffer from such physical or mental abnormalities as to be seriously handicapped.” “Seriously handicapped” is then not further defined, so this loose term can allow mothers to terminate based on a cleft palate or a missing arm – if you can argue a child will “suffer” due to a disability, you can abort on your due date if you choose to.
I write this from a perspective of someone who believes in a woman’s right to choose – I believe in a woman’s right to have control over her own body and her pregnancy. But also as someone who thinks that it is madness to control the lives that enter this world based on how “perfect” or “imperfect” they might be. Especially when we don’t know how to measure that. What on earth is perfection anyway?
Well I had no idea what true perfection meant until Audrey entered my life.
A couple of small spots appeared on Audrey’s back last night, roughly 2 weeks since Rex had chicken pox. This morning they were much more like blisters and so we knew this was another (still seemingly mild) case of chicken pox.
Rex went merrily off to nursery with Daddy (by this I mean he was wrestled kicking and screaming into the buggy) and Audrey and I got ready at our leisure before heading to the beach.
It’s been a glorious sunny day, so I packed up the chocolate brownies (I had saved to take into work for my colleagues), got a takeaway coffee and Audrey and I sat on a blanket enjoying a morning picnic in the sun in February!
She sang and chatted all the way in the buggy. We made our way across the pebbles, she was asking to be carried, but I said “No, I’ve got your hand and you can do it” and she did. She was in fact very proud to walk across the pebbles to the sandy part of the beach. On the way back up, she climbed the mountain of big pebbles herself and celebrated with one of her classics; “I did it!”.
We met a friend (with a child she would like to get chicken pox) and sat on the beach again for a bit, playing with the sand. It was calm, because Audrey can be quite happy to sit (I mean, sorry Rex, but you tire me out!).
When we walked home, we were passing the shop where I got Rex a little Paw Patrol balloon the day before for his birthday. I stopped outside, bent down to Audrey and whispered “Would you like a balloon like Rexy’s? They have PJ Masks, Peppa Pig… you can choose?”. Audrey got a little grump on and said no. I wheeled her in to look at them anyway and she picked out the Princess Poppy from Trolls. She must have said thank you to the ladies behind the counter about 5 times during the transaction, they were melted of course, like all who meet her.
I pushed her home as she held Princess Poppy high in the sky, singing and chatting all the way. I love to feel smug about how something so simple can bring a child so much joy. As we were nearing home, I tuned into what Audrey was singing and I joined in. And so we were belting out “Doe a deer, a female deeeer!” together in the sunshine before we arrived home for lunch. She ran in and introduced Princess Poppy to her dolls.
Last night when the spots appeared I was a bit stressed out by it, I had work to do, a meeting for Audrey’s EHCP (education, health and care plan) and plans ahead and chicken pox was not part of that plan…. but I took a couple of work calls and sent emails whilst Audrey enjoyed a sandwich and some Cbeebies. As is always the case, a day with one child feels like a breeze once you’ve had more than one!
Without the pox I never would have had such a lovely morning in the sun with her.
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.