As Down syndrome awareness month (October) is almost upon us, I thought it might be the right time to write about telling Audrey she has Down’s syndrome (-by the way for anyone who doesn’t know, Down’s and Down syndrome are both acceptable ways of writing her condition, the latter being more common in the US).
I have no great insight or advice for anyone wondering when or how to tell their children, but this is our experience…
The fact is, Ted and I really weren’t sure when to tell her or her brother. I kept thinking “Well here I am hashtagging her, sharing, chatting, raising awareness… but I haven’t really made her “aware” she has Down’s syndrome” and that seemed a bit odd. But also: she is at a mainstream school, with friends who are ‘typical’ children and they are all playing together and accepting of each other, pointing out her difference seemed a bit counter-productive.
Then the summer ended and I realised Rex would be at the same school as his sister, alongside lots of older children who may well know that Audrey has DS and what that means… I felt I wouldn’t want either of them to be completely baffled if someone mentioned it.
As a family, we have briefly alluded to it here and there over the years, kids can be hilariously disinterested when you attempt to get deep or explain complex things to them, so we don’t think anything ever sunk in. Generally these discussions would come to explain why Audrey was older than a certain child, but couldn’t walk like them. Because the ‘difference’ noticed has usually been physical, I’ve relied on ‘low muscle tone’ as an explanation.
Over the years I have seen children her age or older, with that look that says “What is she on about?” when she’s being silly (over excited usually) or doing something they might consider strange, but at the same time kids generally just accept stuff and move on.
Rex of course has always known Audrey as his big sister, with no expectations of what that might mean (should she be cleverer, faster, stronger or bossier than him? Shouldn’t she be out of night time nappies?). I know that in time, it’s likely he will start to feel like the older sibling, he will notice the differences between Audrey and her peers, but currently, it’s not something that needs highlighting. It’s a truly wonderful time for them to be siblings, with no “difference” being highlighted or acknowledged. But, that said, subtle differences are already creeping in. He knows he’s faster at running. He knows he can climb when she can’t. He may have thought it strange he nailed pooing on the toilet before she did. So the time came that we needed to tell them both that Audrey has Down’s syndrome…
We took an opportunity when running was being discussed again and said, “Well, Audrey has something called Down’s syndrome that makes it a bit harder for to run as fast as you, but she’s very flexible and good at yoga because of it”. We repeated this again a couple of days later and got the classic kid response “I know, you already told me”. But shortly after I heard Rex telling Audrey “You have Down’s syndrome Audrey, so you can’t run fast” and then Audrey replying “It means I’m super flexible!”. And that was that.
At present, with Rex just starting reception, it’s a short window whilst she knows more letters and words than he does, that she can read books and write sentences… but I can see it won’t be long until he’s caught up with her. I hope that we can always instil that sense that although Down’s syndrome brings challenges, there are positives to her condition. She wouldn’t be the child she is without it and we wouldn’t want her to be anyone else.
Ok, so this is quite a niche blog post! But I thought it might be useful to anyone with a constipated child, considering Movicol, using Movicol, about to use Movicol… I’m certainly not an expert or medical professional, but this is our poo story… or rather Audrey’s (age 7).
I think Audrey started to experience constipation around age 4/5 ish. She had been through a short fussy eating stage, but on the whole, her eating habits had become pretty good – she now happily eats a variety of vegetables and lots of fruit, but our problem is: fluids.
Audrey will sip a little water in the morning with her toast, a little bit more later and then throughout the day (with encouragement) drink a bit more. There are days when I could see she had pretty much only had a small cup’s worth of water the entire day! Using a straw seems to help her drink more and she does enjoy a juice box, but literally the only liquid I have ever seen her “down in one” is a 60ml portion of chocolate flavour Movicol!!
But back to the start of our journey. Audrey’s constipation presented itself very traditionally as several days without pooing. She would be in a very bad mood and 99.9% of her poos were in her night time nappy. To be completely honest, not worrying about poos in the daytime (being out and about and finding a toilet etc) was convenient. She progressed to pants age 5 and it was nice that we didn’t get those kind of accidents. We just gave her a spoonful of Califig most days and hoped for the best, she generally had a bowel movement every other day and we would find a poo in her nappy at night (that we would discover before we went to bed and change as she slept) or a poo greeting us in her nappy in the morning.
Once we entered lockdown, we ran out of Califig and our local pharmacy didn’t have it. I made a special trip to the big Tesco to get it, but we realised that if we were going to tackle things properly and get her on a daytime poo on the toilet schedule, now was the time to do it. So at her annual review, I discussed it with the GP (over Zoom) and we received the prescription for Movicol. I had been reluctant to “medicate” before, simply because she is on no other medication and Califig is “natural”, but I regret that now. I am the sort of person who suffers a headache for a couple of hours to avoid the use of paracetamol, but I am learning to just take the meds when needed!
With Movicol everyone warned us the dosage had to be right. It’s all anyone said when the mere mention of Movicol came up. We were advised to start on one sachet a day and scale up or down, depending on her reaction. My expectation was: it will have no affect (and the dose should be increased) or it she’ll have diarrhea (and the dose will be decreased). It was much more complicated than that.
Within a couple of days of taking it (just one sachet a day), we had seen two poos on the toilet and were doing happy dancing and thinking all was solved. How simple! [Side note: thank god I use local charity Amaze for advice on Audrey’s disability living allowance claim, as I was filling in the form that week and made it sound like the Movicol had magically cured her constipation and that was that, but I was advised by their guru it was too soon to make any such declaration and I downgraded the info to “she suffers from constipation and has recently started Movicol for this”]. How right they were… within days Audrey was wriggling and grumpy and doing “micro poos” (basically: sharts) in her knickers throughout the day. I was suddenly in a world of six or more pairs of pants a day and a constant washing cycle! And our happy Audrey was now a grump most days and not pooing other than the strange small amounts! Naturally, we lowered the dose (thinking it was causing her to soil herself) to half a sachet. But no, nothing changed. So we took a break and the night time poos returned. Then the gaps between poos returned (up to 5 days!), so we went back to half a sachet, but nothing changed.
I considered morning and evening – did the timing affect things?
We went back up to a sachet a day…. but after another 4 day gap of no movement, I remembered something mentioned on a toileting forum (yes, I’d been on a toileting forum!!) and went to trusty Dr Google to find more info on disimpaction. It basically described Audrey’s symptoms (the discomfort she seemed to be in, fidgeting, the micro poos in her pants all day, the lack of any real bowel movements) and advised we needed to “flush out” a blockage from her bowel with high amounts of Movicol. It also said to not to leave the house as you’ll have to deal with watery poos for days in order to get this sorted! Yikes. As the UK was gripped by a heatwave (and we do not handle heat), I figured this was the time to get things going and started the regime. 2 sachets a day, then 3, then 4… by day 8 we were on 7 sachets of Movicol with pantyliners in her knickers to help with minor accidents (she hated being told to wear nappies again!). I am pleased to say that aside from a couple of absolute corker accidents (I threw some pants away), she was doing really well and going to the toilet when needed. I was analysing her bowel movements waiting for the “brown watery” stage and once I felt we had reached that (this was day 9 I believe), we went back down to 1 sachet a day.
Audrey’s stomach changed. The round hard bloat she often had really went down. I feel so bad for leaving it untreated for so long. She has now, for the last 3 days, achieved “normal” stools on the toilet with no soiling in her pants and no night time nappy poos! (Though she has woken me at midnight and 1am to go for a poo!).
We will keep the one sachet a day routine for now and see how we go, I just really wanted to write this to remember what we went through and also to help anyone else in a similar situation as I am a little baffled the GP didn’t warn us about the disimpaction to be honest.
I am so very proud of her because it has been a strange journey to reach age 7 and rarely have actually pooed on a toilet. I know part of that was through fear (pain passing the stools) because she told me as much. It feels like a big milestone to be here with her in pants, able to tell me she needs to go (and don’t get me wrong, I still have to be very strict making her have toilet visits for wees otherwise she would just hold it in all day!). Children with Down syndrome may find that through the low muscle tone they don’t feel the signals for toileting like others and also, the constipation will have caused her a lot of confusion over the years too.
School return is just weeks away and luckily she has 1:1s who will help with her personal care, as the next stage is to teach her to clean herself safely and successfully!
It’s taken me a while to post this simply because I’ve felt a bit “meh”. I mean, who wants to hear about our lockdown when they are experiencing their own?
At times like these (yes I’m now humming the Foo Fighters and yes, the BBC version with a load of famous singers I’ve never seen before did make me cry), you can become overwhelmed. Which I have. I’ve been overwhelmed by lots of things these past weeks. General emotions, pressures of work/school work, thoughts of the weeks ahead, thoughts of others, thoughts of getting sick, thoughts of getting fat (I wish that was a joke), resources, memes, quotes, articles, educational activities – I am so grateful for everything that’s been available to us, but at one point the various What’s app groups were awash with this stuff and it didn’t make me think “Oh great, so much we can do, so much to refer to!” it was more like “Where do I start? Is everyone doing all the things? Am I the only person who doesn’t find this meme funny? Oh God I’ve seen that one 3 times already!” and “What should I do will all this information?!?”.
Things have calmed down a little now. Oh the kids are often feral, but I’ve learned to live with it better. Anyway on to my lockdown babble…
Audrey’s school closed 20th March and it was a gentle start of social distancing. We still went to the park on the Saturday, we still went for coffee, we just knew we shouldn’t get too close to other people and that was should wash our hands lots. It felt strange and we knew potentially things would become more restricted, but it all felt unreal.
By the Monday, it was no longer cool to hang out at the park or go for coffee. Advice for businesses was conflicted (people were being told not to go to pubs or restaurants, but pubs and restaurants were not officially told to close).
Pretty soon, we were in full lockdown mode. Kids at home, both me and Ted working at home, lots of TV, lots of drawing, lots of stir craziness, a smidge of school work and plenty of Zoom calls.
I work for a charity that helps families with children with special educational needs and disabilities, so I am aware that this kind of change has a massive impact on SEND families. For us, Audrey is the homebody, she likes cookery, TV, books, dolls and imaginative play. It’s her brother Rex, the typical child that needs to be walked like a dog. We are lucky to have a garden, but it is very small, so he dismantles the sofa everyday and throws himself around on it… it’s all a bit chaotic here.
Like many, we started with a vague routine planned; a relaxed Cbeebies morning, PE at 9am (sometimes Joe, sometimes Cosmic Kids Yoga, sometimes zumba), followed by snack, then a learning task or two, TV and lunch, kids choose afternoon (from various activities – baking, craft, lego, games, chalking etc) , well I reckon that lasted about a week. What a cliche we’ve become!
I found out Rex hates organised exercise (despite wanting to do nothing but bounce and jump all day), that Audrey loves this kind of exercise, but has to be in the right mood for most things and that school work may only be possible in 15 minute chunks. I learned that I’m not very patient, but that I can still get a lot of work done whilst listening to kids TV and having two small people constantly hound me for things… “Can I have “insert snack food here”?, Can you get this “lid off/bag zipped up/thing down from a high place?”, “I NEED A POO!” and so on. To get out of this happily, I have to attempt to free myself from wanting to “achieve” certain things each day. I realise that often I can feel really good about doing a lot work, but that will usually align with guilt that the kids have watched TV for hours and I’ve not interacted with them other than as snack opener and bum-wiper. On the flip side, if I have spent time, playing, teaching and interacting with them for hours, well, that usually means of course that I’ve done no work. So doing things in small chunks of time works best for everyone’s well-being.
So I cut my hours at work (it’s made things much more manageable), Ted is working full-time, shut away upstairs most days from 8am-6pm. I’ve allowed them to have days that are nothing but TV and play. I have braved taking them out on my own more (two small children being told not to be near people/touch things – it doesn’t always go well) and I’ve been running/drinking a lot more wine (though not at the same time, obviously).
I have no super duper lockdown survival tips (because I don’t know how we are sometimes), but I can only say, that despite the moments of absolute despair, we have still found time to have fun. We can look on the bright side – we could still be in our old flat with a baby and no garden or our mums could be alive and having to isolate… so the timing isn’t so bad. At least we do all get on, can work from home and we all love movies and board games and dancing and things you can easily do at home.
I guess I am really writing this post for prosperity, I want to look back and remember that this time was hard. The kids were demanding, there were lots of tears and guilt and shouting, but there has also been lots of lovely moments – our first viewing of Harry Potter, altogether snuggled in the sofa enjoying a feast! Ted bought a pizza oven, so good pizza has been a weekly treat. Audrey has been pooing on the toilet more (as opposed to her night-time nappy) and has done some really super writing. Rex has already shown he can follow lines and shapes really well in a ‘first writing book’. They have both coped really well with the change to their routine and are good at talking openly talking about the virus.
In fact, in some ways this time has been “easier” than the summer holidays! Because there is literally zero expectation that I need to plan anything or take them anywhere. Sure, we all think a zoo trip will be the best day ever, but the reality is often much more stressful than the fantasy, so in many ways it is a relief that we are at home and a brief trip to the park is all they hope for.
This week the government announced changes as we try to get things “back to normal”. Everyone seems to be incredibly annoyed and “confused” by the advice to “stay alert” as opposed to “stay at home”. I’m not confused. It’s hard to keep a “stay at home” slogan when you are telling people they can go out more. They can stay out for longer periods of time. Go out not just for exercise but also just to sit. See friends, but at a distance. Some businesses are opening again. Restaurants can deliver… it’s a gradual process of returning to normality. Potentially a trickier time than when the guidelines were clearer and strict though. For those of us with small children or children with SEND, it’s not a massive change. I won’t be taking my kids on long walks as they can’t be trusted not to lick something on the way. And I can’t have them meet a friend at a “safe distance” because no doubt they’d like to lick that friend. I jest… but honestly you should see Audrey sucking her thumb after playing in the dirt and Rex hugging a lamppost, it’s constant!
The biggest announcement in the government’s recent changes to lockdown had to be that Audrey’s year may return to school 1st June – which seems way too soon. Again, if we as a family are still practicing social distancing, what is the point of then sending one of us into a building with around 300 other humans in it?? I know she would love to be at school and I would love her to be there… but not until it really feels like the virus is no longer a threat.
We haven’t been ill, so at this point I feel like we could manage to shield ourselves entirely from Covid-19 (am I dreaming?), but if we have to jump back in before the storm is over… I don’t know, I just feel like Audrey might get hit hard (she has no underlying conditions or respiratory problems, so maybe not), it’s probably just that I see her as more vulnerable because of her additional needs.
It’s certainly funny to think after all the stress of lockdown, that now there is an end in sight and a return to school date, I feel like it’s too soon!
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!
I’ve made no secret of the fact that when Audrey was born, that little face that showed she was “different” flooded my brain 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. My place confirmed, in fact I can remember the teacher’s words along the lines of “this class will be perfect for her…” and once there, she was fawned over like any cute baby.
Of course, we’ve had the odd strange incident, 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), but I found the confused look that followed that answer so uncomfortable, I would sometimes just say yes! Ha.
Once she was off O2, 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 says hello to anyone, asks people’s names, approaches children/babies when 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!
Since starting school, we’ve found a whole new audience. When we arrive at school, if we are early and waiting for the gate to open, I often see the nudges… older girls look at her like a living doll, they are like walking heart eye emojis gazing at Audrey. People shout “Hello Audrey!” when we are out and about and she gets presents/pictures/notes in her school bag from her friends at school. She marches into school with enthusiasm each day (often saying “Good morning” to the teachers at the gate) and she bounces out each afternoon and throws 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’ve actually written this because of a little Instagram post that sparked a few questions and comments from mothers of children with DS/other special needs who wanted to know more.
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. 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 way about her that would make 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! So, I say… bring on the stares!
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.