Let them be little?

Audrey turns nine in July and she still loves CBeebies (for any non-UK readers, this is a preschoolers TV channel, aimed at babies up to around age six or seven). She still loves dolls. She loves her toy kitchen. She doesn’t choose to read independently (unless it’s her assigned reading book from school), but she loves to read picture books from memory and be read to.

I am aware she is always going to be “younger” than her actual age. It’s not an issue for us and hasn’t really been a big deal, since having a younger brother has “allowed” her to continue to enjoy younger pursuits… In the same way that a lot of children with older siblings will find themselves interested in things considered “too old” for them. But who’s to say what’s for a six year old and what’s for an eight year old?

We were in a great Brighton park recently, an enclosed play area with a gate, big slide, variety of swing types, a climbing frame, sand pit… I guess I would say it is skewed towards smaller kids slightly, but still plenty to do for my two at eight and six. Rex got playing with a boy his age and the man with him (who made it clear he was a guardian but not a relative) started saying “I think you’re too old for this park now, it’s a bit boring isn’t it? I think we should stick to Preston Park.”. The reason this annoyed me was because it was the adult deciding, the kid was having a perfectly good time and didn’t say that the park wasn’t good enough. My two enjoyed themselves and I felt no need to question the targeted age of the park.

At home, Audrey’s love of (almost) all CBeebies television shows continues. Rex is very happy watching most of her choices too, but he rarely asks for them (he has moved onto CBBC shows, but prefers Netflix). For the first time in months Audrey chose to watch Bing and my instinct (probably because I’m not a fan) was to say “I think you might be a bit old for Bing now?” but of course I corrected myself and said of course, if that’s what you want to watch that’s fine. Even Rex sat watching it happily.

Audrey does enjoy TV targeted at her age as well as the mountain of much younger stuff, so why does it matter? It’s not that she can’t follow a plot or enjoy a more “grown up” show, she just still enjoys the young shows. That said, I’ve noticed she really does prefer mild stuff. She doesn’t mind a bad guy and a bit of conflict, but would prefer it to be very gentle. Shows for older kids can get very frantic, loud and full on – an assault on the senses at times! This is not Audrey’s vibe (Rex however – loves that).

Of course I understand encouraging kids to grow up and do things for themselves, but do we also have to start telling them what books/TV/toys are ok to enjoy? I mean, we excitedly read them Harry Potter, getting four or five books in before realising it really gets too old for them and they were bored/not really following what was going on. I’m relieved to be currently reading the Amelia Fang books which are much lighter in subject and length! And we still read two picture books a night because I love picture books (and so do they).

I remember I was in Year 7 (aged 11) when catching up with friends and we were talking about our Barbies. One of my friends said she wasn’t into them anymore, everyone agreed and so that was that, I got home that day and packed mine away. They had been declared uncool and too young. How much longer would I have happily played with them I wonder?

Audrey has asked for a picnic party at home for her birthday with traditional party games (musical statues etc) and I’m already worrying about whether her friends will be rolling their eyes and cringing at the choice to still play games. I don’t know what is acceptable fun for a group of eight-nine year olds!! I guess they are just going to have to accept what Audrey finds fun.

Anyway, I’m not sure where I am going with this little vent. I guess I just want everyone to consider whether you need to push your child onto the next level, the older thing, the more grown up thing… or let them decide when they are ready? I get you might not want them using a dummy at school age or dragging a teddy into college, but there is something to be said for letting kids take the lead. And for letting them be little for that little bit longer!

Audrey with the doll’s pram she got Christmas 2021 (aged 8)
Audrey with one of her many, many dolls! This is LuLu, she was 50p from a charity shop.

Mother’s Day 2022

Is it me or is every holiday, awareness day, celebration, commercial nonsense etc now much bigger than they used to be? World Book Day is like Halloween, Halloween is like Christmas and Christmas is… well it’s still Christmas but it starts in November.

Mother’s Day for me was always a time my family got together because we usually got together for a roast on a Sunday anyway. The only difference would be bunches of flowers and boxes of chocolates for Mum (she liked colourful arrangements and the smell of freesias, walnut whips and cards with ridiculous cheesy poems in).

Now the Mother’s Day machine is so big I get a an email from retail companies a month in advance asking my if I want to opt out of the barrage of gift options. It’s nice I can opt out (not having a mother or a mother in law), but it’s also annoying receiving those emails as a reminder of that.

My last Mother’s Day with my mum… I think I actually saw her on the Saturday. I think that was the day a lot of family came to gather around her bedside. She was at home, in a bed in the living room, dying of cancer. Just over a week later, she died. That was 2017.

You would think I’d be over it by now. I tell myself; well, if she was alive you’d still be holding the phone away from your ear when she tells you a long and pointless story and won’t let you speak. You’d still be annoyed when she expects you to have watch Britain’s Got Talent/Coronation Street and get ready to discuss it. And she wouldn’t drive down to visit you anyway as she’d grown fearful of driving “far” in her old age.

But that’s not the point. I still struggle with the why? It just feels so crazy to me that my sister had her mother her entire life, because her life ended at 45. And likewise my mum had her mum her entire life, but that’s because she died at 73 and good old Nan died at 101, three years later. My sister and my own mother never felt the pain of losing a mother, but I felt the pain of losing them.

I went to town on my own to watch Steven Spielberg’s West Side Story when it came out (it was wonderful). I expected to be a big sobbing mess because it was my mum’s favourite film and we played “Somewhere” at her funeral. I had a few little cries, but I made it through without becoming a mess!

Weirdly, I only realised at the moment it started that my mum would never see it, she would never even know they remade it so beautifully and that made me sad. I don’t normally dwell on what she’s missing out on, I’m usually more focussed on my kids and what they’ve been robbed of – the special grandparents experience that I had. Ultimately I was uplifted by watching this film that meant so much to my mum. When Tony sang “Goodnight, goodnight, sleep well and when you dream, dream of me…” I suddenly remembered how my mum used to sing that to us all the time at bedtime. A tiny thing that was part of our childhood and something I can’t tell my mum I remember and still treasure.

Mother’s Day is at least mine now. I am the mother of the day. And I know I’ll see lots of lovely posts about those of us who don’t have their mothers, are not mothers ourselves, have a difficult relationship with our mothers and so on… and I have the joy of my two magical children to help me through, but it will still be a day tinged with sadness for me.

Of course once it’s out of the way there will be plenty of Father’s Day opt out emails flooding into my inbox to contend with.

Are things getting easier or am I getting braver?

Half term is done and dusted. Like many parents, as half term approached, I was torn between the feeling of relief that we don’t have to rush around to be at school on time and despair that I have to come up with ways to entertain two small children for a week, whilst squeezing in work.

Train travel!

I’m often quite slack at filling a school break with daily activities, but I like to have at least a couple of things booked in. Lockdown was certainly a time where we all realised that we could survive (just about) without having places to go or things “booked in”, suddenly we just had to make do with local outdoor space, our own company and home activities. Having a child like Audrey meant that home was actually an easy place to be – but Audrey’s brother is more like a puppy – he needs his daily exercise or he tears the place up!

I always have to remind myself that with children you go through phases – where some of what they do makes them ‘easy’ and other aspects are hard. Like when a newborn doesn’t sleep well, but at least they don’t move. With a child who has additional needs, it’s harder to second guess when they’ll be “easier” and when they’ll be “harder” to deal with. For example, Audrey wasn’t mobile until she was 16 months old (when she bottom shuffled) and once she was able to walk, she wasn’t immediately the sort to wander off or purposefully run away – that came around age 5/6 ish when it made outdoor life much more tense. She was definitely what I’d call a relatively easy child when she was small. She’s more complicated now.

Beach time.

Because of my tendency to fret about the little things that could make a trip with children stressful, I usually aim to “play it safe” and take my two to places we have been to lots of times or to meet with others so I have more hands/eyes on deck. I’m usually worried about parking, distance to a toilet, their stamina for walking distances… some of this can be planned for, but general whining or dislike of the place can (and too often does) come out of the blue. You can’t always plan for a child’s mood.

So it feels a shock for me to say that this half term was a success. In the past I’ve had some disastrous days; like Audrey completely disappearing for approximately 15 minutes and me calling 999 or Rex stacking it on concrete 30 seconds into a park trip… but this week I have told my children everyday “thank you so much for a lovely time today and for being so good” and meant it! I mean, what is going on?! It had made me sit and think: are they getting easier or am I getting braver? I guess it’s a combination of the two.

In many ways, with Rex aged 5 and I’d say, quite grown up for his age and Audrey at nearly 8 but “delayed”, at times it is much like I would expect dragging twins around would be. Audrey often makes the rules, as it can be her stubbornness that dictates where we go and when we leave, although likewise she has a kind and generous streak which allows her to be convinced to give in to her brother’s demands.

This week I did things that would normally scare me (like going on a train alone with the two of them, with no buggy) and we didn’t just survive – we had a good time! We went to the cinema and Audrey wanted to go to the toilet three times during the film(!), but with a friend sat in the row behind us, I didn’t have to convince Rex to join us. In all honesty, I trust him much more to stay still or stick with me than I trust Audrey, so it was a relief she was the frequent toilet visitor and not him!

At the beach, Audrey was happy sat making sand castles for a lot longer than she usually would be. Rex adores the sea and could probably stay all day if it’s warm, but on this occasion it was a bit chilly, so he was happy to leave when Audrey was (about 90mins in). This is an improvement (it’s always a disappointment if you’ve dragged everything but the kitchen sink down there for one of them to whine and want to leave after 15 minutes!). Naturally, Audrey needed the toilet and had I been alone with them, we would have had to pack up all out stuff (blanket, water bottles, jackets, buckets… laden across the sand) and hiked back over the pebbles to visit the toilets before dragging it all back. Thankfully a friend came along with us and watched Rex whilst I took Audrey off to the loo. There’s definitely safety in numbers when you have a child with SEND (or even in fact, just if you have children)!

Ice cream fun.

Audrey still tests me of course, sneakily creating a bit of distance in the park or running off ahead around a big garden visit and she often decides she needs a wee once we are as far away from the toilet as we can be… but we got by, we had no accidents and I kept close to her without needing to sprint or feel stressed… and it’s made me look forward to the summer holiday ahead. I’m hopeful that the combination of my bravery and their progress will make for fun times all round!

Children’s picture books that deal with loss and death.

I usually like some sort of alliteration or pun in blog post title, it but in this case, like some of my favourite books about loss and death, I thought I’d be more direct.

Ted and I have lost a lot of loved ones and know that we will lose many more, because, hey that’s life (and death). We definitely both feel that losing our parents before the age of 40 was too soon, but the real shame is the children no longer having any grandparents.

Both grandfathers passed away before the kids were born, but our mothers died having known both Rex and Audrey and I was keen to find stories that would in some way explain what happened or at least let them explore the concept of loss.

When my mum died, Audrey was three and a half and Rex just one year old. I headed to our local children’s bookshop to ask them for books they would recommend and I came away with our first title on the subject, The Memory Tree (a couple of other titles were offered, but I’m an artwork snob to be honest) . A few others were searchable on the internet or mentioned by friends (or even kindly bought for us by thoughtful friends), but as our picture book collection grew, I realised there are several that you wouldn’t necessarily know tackled this subject.

This list is by no means exhaustive, but I am confident you’ll find a title or two you hadn’t heard of before. I also think these are great books just to start a conversation about loss and death that we might otherwise avoid having until it’s absolutely necessary. In my experience, small children are incredibly brutal and matter-of-fact about death, so in a way, it’s good to catch them at this age when they have no fear and ask a lot of questions!

These are in no particular order and FYI when I write about each book below, please expect spoilers, not that I expect anyone to be precious about the plot of a children’s picture book, but just in case!

The Memory Tree by Britta Teckentrup:

A simple story about a fox who falls asleep (forever) and a tree that grows in his place, as his woodland friends recount stories of time they spent with fox. This is a gentle book and it certainly made me feel better about my own loss – focusing on the legacy someone leaves behind and all the lives that person (or in this case fox) touched.

Duck, Death and the Tulip by Wolf Erlbruch:

Duck Death

Recommended by friends, I love how this book represents death as a skeleton and is much more direct than other children’s books. It’s simple and tender and it made my children ask some interesting questions. Death is always there and when you get to know him, he seems quite nice.

Looking for Yesterday by Alison Jay:

This one was a gift from a good friend who spent the day with Audrey and bought her some books. The good news is: no one dies! It’s about a boy who wishes he could relive his best day and his grandfather explains why you shouldn’t go chasing after yesterdays, you should be looking forward to other wonderful days to come. A story that shows what a life well-lived is all about – dancing, ice cream, mountain climbing, love…

Waiting for Wolf by Sandra Dieckmann :

Waiting for Wolf

So when I say there were some classic stories about loss and death that I chose not to buy because the illustrations didn’t appeal… well this one has the kind of artwork I was hoping for.  A beautiful, gentle tale about two friends (a wolf and a fox), wolf is older and leaves fox with the line “Tomorrow I’ll be starlight” and when fox can’t find her wolf friend, she pulls the blanket of stars around herself and spends some time in darkness. A book to treasure.

Up the Mountain by Marianne Dubuc:

Up the Mountain

This was a lovely find from my mother-in-law, who no doubt saw the relevance of the story when she bought it for the kids. An older badger meets a young cat on her usual trek up the mountain and they start a friendship, which leads to many more visits, until badger starts to become too old and tired for visits up the mountain and cat has to go alone… A tender ‘circle of life’ story.

The Goodbye Book by Todd Parr:

A very simple and colourful book about the emotions when someone has gone (in this case a goldfish has lost a goldfish friend). A good chance to discuss all the different feelings a child might experience with loss.

Sad by Michael Rosen:

Michael Rosen’s book deals with death, but also sadness for all kinds of reasons and why being sad doesn’t always look or feel the same. My two (perhaps a little young) didn’t show much interest in this book, but I think in time it will become very useful for tackling feelings.

Grandad’s Island by Benji Davies:

Bright and chirpy illustrations, this one is a bit subtle. Grandad leaves for an island and even sends a postcard? It’s sweet, but almost too gentle. I don’t think the kids really thought this was about losing someone, more about someone going on holiday.

Heart in a Bottle by Oliver Jeffers:

Perhaps a little bit more abstract for small children (but my two do like it), but then Oliver Jeffers simply knows what he is doing with children’s books. It’s definitely had me in tears. It’s about how losing someone can make you close yourself off to happiness and life experiences.

If All the World Were… by Joseph Coelho:

If All the World were

Illustrations that I love, lots of magic between a girl and her grandfather. “If all the world were memories, the past would be rooms I could visit and in each room would be my granddad”. Lovely.

Rabbityness by Jo Empson:

Rex’s preschool kindly let us borrow this book when my mother-in-law (Sarah, the kids called her Bibi) died suddenly. It’s about how we touch others’ lives and the things we leave behind/teach others and it tells this through paint splattered crazy illustrations.

The Lonely Tree by Nicholas Halliday:

Another one from preschool, as a picture book fan (and snob), I thought this one looked awful. Computer generated images of trees!? Urgh. But it does convey a message of the circle of life and it was useful for us.

Forever by Beatrice Alemagna:

For

A book about how things end, float away or disappear – and it’s beautiful. It doesn’t tackle death directly, but introduces the concept of things going away and it is lovely and funny with tracing paper pages to make things appear and disappear.

Are you Sad, Little Bear by Rachel Rivett:

Audrey found this one in the library (she has a habit of unearthing the right book at the right time!) and it’s a sweet and traditional book about a bear asking questions after his grandmother dies. What is it with woodland creatures and dying stories though? They definitely dominate the market on this subject!

The Invisible String by Parice Karst

Another one we found in the library, this is more about love and being connected whether we are together or apart (good for anxious school starters). The twins in this book do ask if the invisible string can reach their uncle in heaven and this concept could be useful for children to feel a connection to someone who has passed away.

Badger’s Parting Gifts by Susan Varley

Recommended by many, again, I was put off by it’s dated look, but it’s actually very upfront “…dying meant only that he would leave his body behind… his only worry was how his friends would feel when he was gone.” I feel the Memory Tree may have been inspired by this classic.

Always and Forever by Debi Gliori

I am not a fan of her illustrations, so had ignored this one for a while too! It’s another woodland creatures-lose-a-friend-and-recount-stories tale, of which there are a few and if I am honest I would rather chose one of the others over this one!

That’s all I have for now and I hope this collection is useful to someone and I would be happy to hear of any other recommendations – I cannot imagine ever stopping buying children’s picture books, I love them so much!

Telling Audrey she has Down syndrome.

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…

Sister and brother asleep
My two peas in their pod (Audrey’s bed!)

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.

Little girl does the splits on an arm chair
Flexibility demonstrated

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.

Our Movicol journey…

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!

 

 

Lockdown life

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).

We made rainbows to display on our window the day Audrey’s school closed.

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.

Tiny play house in our tiny garden.

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!

Rex’s lockdown fringe and ice cream happiness.

Audrey’s ice team happy face.

World Down Syndrome Day 2020

Nothing is currently as expected.

Today we would have been attending a party with other local families who have someone in their life with Down syndrome. Just a couple of weeks ago, I thought we’d carry on as normal… but the Coronavirus has stepped up and moved on and now the schools in the UK are closed, everyone (who can) is on work from home mode and all parties and gatherings have been cancelled.

To say the times we are living now are bizarre is an understatement.

Audrey has an educational health and care plan, which does actually mean she could continue to attend school, however, since her brother Rex’s preschool is closed and Ted and I are able to work from home, we would much rather have her with us.

And so here we are, “social distancing” is our current mode. Staying at home, perhaps popping out for some fresh air, but avoiding group meet-ups and physical contact where we can. We hope to Face-time and stay in touch with friends and family as best we can. We hope Rex won’t climb the walls (and us) too much.

The biggest stress for me by far (yes, above the thought of catching the virus) has been the pressure (social media, friends chats etc) focused on homeschooling and activities. Everyone is being extremely helpful sending links, resources, accounts to follow, apps to download, things to print… I cannot fault people for trying to ensure we can all help our kids learn, but what it results in is a seemingly mountain high pile of stuff you feel you have to do. I am overwhelmed by the thought of doing my actual job (communications for a charity), doing my mum job (entertainment, food, referee, wiping bums etc) and now being their teacher! It feels like too much to handle on top of the fact that all four of us will be at home together for months. Even if we get to escape the house for fresh air it will be short lived and it won’t really be with other people. Intense!

There is a funny part of me that thinks “you wished for this”! Because often in the mornings, during the stressful period of “Put your shoes on, Where is your book bag? Don’t take your coat off! Please can we get in the car now?”, I find myself wishing we didn’t have to do that morning routine 5 days a week.  Now of course I am desperately sad that I don’t know when we’ll do that routine again.

Anyway, bringing it back to today… World Down Syndrome Day raises awareness (and funds) for various charities relating to DS, there will still be a lot of online campaigns and videos. The central campaign involves “lots of socks” which I (and many others) actually don’t like! It gets confused with odd socks (for anti-bullying) and muddies the water to “we are all different” when we are often striving for people to understand that having DS doesn’t make you so different to typical people.

I mentioned in my Instagram feed this week that I actually learned something about Down’s syndrome this week thanks to COVID-19: I have pretty much consistently told people throughout Audrey’s life that “people with DS have a weak immune system” , but once this all kicked off I decided to fact check. Actually, it’s just that people with DS are prone to certain conditions (relating to their heart or lungs) and it’s those underlying health issues that can cause compromised immunity. So basically, Audrey is fine because she has no health issues. Plus (major plus), she has my immunity passed on from breastfeeding, yay!

 

Down’s syndrome Awareness Month 2019

Whenever the Down’s syndrome awareness days/months/campaigns come around I generally feel like I’m banging on about the same old stuff, it’s all been said before and people are wondering why I’m still doing this.

I will never tire of writing about how great Audrey is and that’s a fact. Beyond that, when I try to think what the Down’s syndrome community wants to achieve with awareness campaigns, I remember why it’s important to keep banging the drum. Because surprisingly not everyone knows that people with Down’s syndrome can live a full and happy life. That they can achieve and learn and contribute to society. We may be very early in our journey (Audrey is only 6), but she is continually learning, progressing and she is full to the brim with love and kindness. She is an asset to our family, not a burden.

9 out of 10 women in the UK who receive a prenatal diagnosis of Down’s syndrome choose to abort. Would the stats skew so high if perceptions of Down’s syndrome and disability were changed?

We are (supposedly) living in a liberal and inclusive world, yet I continue to encounter those who fear disability or don’t fully understand it. Hey, I’m not perfect and I’m learning on the job, but I’ve had some uncomfortable conversations with people, even though they are aware I am the mother of a child with “special needs”:

A mother I know once chatted to me about her 10 year old daughter’s friend who is autistic; “She wants her to come for a play date and I’ve said no and I don’t know how to explain to her that we don’t know how she might react to certain things…”. I would absolutely hate to think a parent might not have Audrey for a play date through fear of her condition, I would much rather they suggested a play with me there (to see how things go) or asked me directly if she might be able to come for a play and if so, if there is anything they might need to know. In any case, a mother of a child with extra needs wouldn’t just pack them off for a play date without knowing that they will be ok. If anything, I tend to be overly protective about Audrey and her abilities, she often surprises me with what she can do independently. I wish I had said all this at the time, but I was so stunned that she was telling me this, I didn’t say anything!

Another example from a couple of years ago, I had a chat with a dad about about how fab CBeebies is at inclusion and he really didn’t get my stance, his response was along the lines of (eye rolling): “Yeah they’ll always get an ethnic kid in a wheelchair in there”, it felt very much like “the world’s gone PC mad!”. Again I wish I hadn’t stayed silent. Because every time you eye roll at a disabled child/same sex parents/family of colour shown on TV, remember that those of us represented by that “shoe-horned difference” are not eye rolling, we’ve got a fuzzy feeling inside. We get to feel like we matter enough to be included with all the “typical” families. People will start to realise that disabled people live in the real world too, with families, jobs and hobbies just like everyone else.

I am absolutely thrilled to say that Audrey is going to be in a TV advertisement over Christmas on Channel 4. I’m not even sure that the team behind it know how much it means to us and the Down’s syndrome community that she was chosen. In it, she’s a little girl opening a Christmas present. She just happens to have Down’s syndrome. And when I’m hanging around with her in a big house in London watching her being filmed it’s just another crazy thing Audrey has gotten me into! Audrey having Down’s syndrome has opened doors, not closed them!

I’ll be posting on Instagram (as usual) for Down’s syndrome awareness month. I am no expert on Down’s syndrome (medical stuff, facts about how the condition affects each person – I’ve read minimal amounts to be honest), but I’m an expert on my kid. If you’re looking for a poster girl to explain how Down’s syndrome can make you adorable, kind, thoughtful, stroppy, stubborn, loud, quiet, easy-going, challenging, clever… well Audrey is the one! If there’s one thing I’d want people to remember about Audrey or anyone with a disability; it’s quite simply that they are human. She deserves love and a chance to thrive just as much as anyone else.

 

Poster girl

Part of sharing positive moments of our life is to ensure there is a balance to what people see when it comes to life with a child with Down’s syndrome. When society tells you to “screen” for Down’s syndrome and you love someone born with DS, you want to share your experience of that love to show it’s not a negative thing that needs eradicating.

It’s because of this that sometimes when life isn’t rosy and Audrey is being a pain in public, I feel huge pressure for her to be good. I want to prove people wrong, I want to show them our life is full of fun and happiness. That said, I’m also honest, so I aim to talk about and share the tough stuff too. Unfortunately life with kids is not entirely straight-forward.

Yesterday, I wanted to go for a run, so Ted did the bedtime stories. Rex was feeling particularly clingy and as I got ready to leave the house he was crying and screaming my name, Audrey however was perfectly calm and happy, “Goodbye Mummy!” she said cheerily as she settled into her bed. Meanwhile Rex was at the kiddy gate rattling it and turning red in the face. Yet he is my “typical” child and she has “special needs”!

The day before, at the park, we arrived at our car to return home. Stood just a couple of metres away from the car door Audrey refused to walk across the long grass. Rex was calmly standing by the car, waiting to get in. Audrey was refusing to move. I was negotiating (begging), but to no avail. As I made the decision to pick her up and force her into the car, a pregnant woman walked by. I kept my head down, got the kids in the car and got ready to leave, but really I wanted to turn to her and say “She’s normally lovely!”.

The fact is, I am always nervous around pregnant women when Audrey is with me. Suddenly she is the poster girl for Down’s syndrome. She is the sole representative – a make or break impression for someone making a decision about screening and termination.

It’s not just the “bad” behaviour that concerns me, sometimes when she is quiet or seemingly not engaged, I worry about people thinking she has nothing going on in her brain. I worry they will be judging her on conversational responses (or lack of) and think she is stupid. Yet if Rex was suddenly mute at a stranger’s question, I would dismiss him as shy and move on, I wouldn’t expect him to be judged solely on that interaction.

It would be nice to say we have nothing to “prove”. She is a multifaceted human being who can be happy and sad, easy-going and stubborn, good and naughty – but sometimes the perceptions of people with Down’s syndrome put them in a box of one or the other. They are either considered to be loving, cuddly and amenable… or unpredictable, hard to control and challenging – it’s rare to think of them as having the ability to be all those things and more. Or none of those things!

What we forget when we group people together (as if they were a different species to us) – is that within the similarities there are also many differences. And stereotypes sometimes fit, but sometimes don’t. Just as not every red head is feisty and not every American is loud – people with Down’s syndrome have stuff in common, but they are individual humans.

Audrey is more polite than your average kid. She’s better at sharing than any other kid I’ve met. She’s chatty and confident, she likes to laugh but she doesn’t like to see people get covered in gunge! She works really hard at physical challenges, but can sometimes lack confidence in that area. She’s a great eater, sits at the table like a dream but can be stubborn and wants to be fed by us sometimes! She doesn’t like lots of bubbles in her bath. She settles down at bedtime to sleep very happily.

And I can tell you about her “typical” brother Rex, he isn’t great at sharing, but is excellent at climbing and running. He can be shy, but once he warms up he’s great at making friends. He’s an extremely fussy eater and likes to eat with his fingers, whilst on the move. He doesn’t mind bubbles in the bath, but will help get rid of them for Audrey. He rarely wants to go to sleep at bedtime, he wants to keep playing… they both have my long eyelashes (which I got from my mother) and they both seem to have inherited my mother’s ability to chat!

The two of them have given me a very varied experience of motherhood just by being different kids with different personalities and the fact is, at this stage, Audrey’s Down’s syndrome plays a pretty small part in what makes her different to her brother.

Those of us with children who have Down’s syndrome may feel the pressure to be the model example of how it can all be ok, but we should also be allowed to show it’s not always ok – because that’s life with any child.