Audrey at 8 years old!

My baby girl turned eight this summer.

Ok, so I have been neglecting the blog, I still use Instagram as my main daily/weekly outlet for what’s on my mind and what’s going on with us day to day. It’s not that I don’t often have a lot to say, it’s just that I don’t set aside the time to write all the thoughts down…

And so, I drafted something for Audrey’s 8th birthday in July and forgot about it. I like to document her achievements and changes, so I am still going to write something, especially as it’s now October and therefore Down’s Syndrome Awareness Month.

At eight years old, Audrey is still small for her age. A lot of people have asked recently if Audrey and Rex are twins (he is five). Her favourite TV shows are Rainbow Ruby, Justin Time, Muppet Babies, most of CBeebies and Bluey. So much Bluey. Her favourite colour is rainbow (all of the colours ❤️). She likes cats, imaginative play, yoga, dance, cookery, kicking a ball and being on the swings. She can confidently sit on the ‘big’ swings, she is regularly asserting herself, refusing help and doing more for herself (like getting dressed, brushing her teeth etc).

Rex and Audrey fight a lot. She is easily upset by minor things, but they also simply like to push each other to their limits. On the other hand, she is very protective and loving, which is partly why they fight as Rex hates that! Even though they tend to fight and not play together that well, Rex often asks to sleep in her bed and I know that they will both stick up for each other when needed.

I have a reason to tell her I’m proud of her every day and I am often in awe of what her little something extra has done for us as a family. Her writing, reading and maths are all progressing and she still is very happy to go to school everyday (even if she refuses to do work when she’s there!). She loves Fridays because it’s PE day and fish and chips day.

Audrey never really asks for much (unlike Rex who wants every toy he’s ever seen) and at the moment she is really enjoying her baby doll again, being a mummy, reading her stories and giving her milk. He little doll’s pram broke recently (it finally collapsed when a full sized eight year old sat in it) and I’ve managed to find a yellow pram for Christmas via eBay that I know she will absolutely love. £15 well spent and honestly, I know if that’s all she got, she would be thrilled. Audrey can really make you understand simple pleasures.

Audrey’s enthusiasm for life continues to shine and long may it continue! We are so lucky she has a voice and boy can she use it – early in the morning her and her brother can talk and talk at a very loud level!

Check out our Instagram for lots of DS Awareness Month posts as I am taking part in Positive About Down Syndrome’s daily posts.

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!

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!

 

 

We Have a Runner!

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:

  1. 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.
  2. 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.
  3. 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!

 

A Strong Reception

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!

School of hard knocks

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?

Audrey at school
Audrey at school

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).

Audrey drinks her juice from a straw
Audrey getting refreshed after dance class

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.

Party on

I mentioned on Instagram the other week about a clunky moment when a pediatrician asked if Audrey was being invited to birthday parties. I found it quite odd. Audrey has been going to birthday parties since birth. A friend made me realise this was the doctor’s way of measuring that Audrey is being included and has formed friendships at school.

Funnily enough, just recently we have had loads of birthday parties. Audrey loves a good party, however sometimes the bouncy castle is too busy for her. Sometimes the general ambiance is too loud for her. Sometimes she’s just not in the mood. But mostly she enjoys all that comes with sort of event; party music, dancing, party food, pass the parcel… and of course, the wonderful cake moment singing ‘Happy birthday’ – she does this with huge enthusiasm and joy. On your birthday, if Audrey is there, it’s like having your own personal cheerleader.

Last Saturday we went to one of those parties that just wasn’t her thing. We arrived and the hall was loud and chaotic with her school friends running around, making a lot of noise, but she was ok. It was such a pleasure to see her hugging her friends, holding hands, running around together, it was a great feeling watching her being part of the gang.

Then the entertainer arrived. Uh-oh. It started well, Audrey sat laughing along with her friends and I was sat back on a chair, thinking how well she was doing and how far we had come… when she started to look for me with her bottom lip protruding. She came to sit on my lap “Can we go home Mummy? I don’t like it, he’s scary, it’s too loud”. She asked to go to the toilet (a cunning way to leave the loud room) and she did do a wee (hurrah!), but we ended up waiting in the hallway and then the kitchen, because she was too upset by the noise in the main hall. Once the entertainer finished, there was a party tea (which she didn’t eat) and a brief moment with music where she ran around with her friends (and my goodness 5 year olds are raucous), but I was relieved and thought we’d see this party through… when the entertainer came back to do his closing set. So we left early.

Where we (society) have come so far is that Audrey was even invited. She is part of a mainstream school class and she is treated the same as her typical peers. Also, everyone is understanding. No one is asking “What’s wrong with her?” (because she doesn’t like the entertainer, but every other child does), people are not making us feel weird. It’s fine that she’s not feeling it and off we go.

One thing I know, Audrey will always be invited to birthday parties. Yes, the kids will start to cherry pick their favourite friends and everyone should have that right, but I am confident that my kind, gentle, fun little girl will be considered an asset to a party by lots of children.

We have another school friend’s party in February. I know it involves a big bouncy castle and maybe some soft play, I suspect it won’t be her thing, but we will go. Because we have to try. Audrey has been to the cinema, bowling, she has seen live bands, watched parades, been on a Ferris wheel – there are many things I’ve been concerned she might not like… but we tried anyway. Because sometimes she loves things that we might have been told she would hate. Knowing she has special needs means we are aware of some of the challenges she may have, but nothing can predict your child’s personality and their preferences, you just have to live your life and discover together, one party at a time!

The Down Syndrome Diary

Back in 2014(!) I remember vividly that I was walking Audrey around in her buggy when I received a message from Jamie to see if I’d be interested in writing in a “physical diary” about Down’s syndrome – to put pen to paper and tell our story. I was very flattered and of course said yes straight away.

Audrey cuddling the Down Syndrome Diary

I had found so much comfort from Instagram accounts and blogs that I found (relating to DS) in those early days. I was inspired to share our family life and so adding to a travelling diary seemed like a great idea.

Jamie started the diary and began to send it around the world to gather family’s heartfelt stories, but I don’t think anyone could have know how long this might take or that so many people would want to be involved; she’d have to send off lots of other diaries to meet demand!

Once the diary finally arrived my house (I was definitely feeling scared to have it) I thought I’d add my entry and pass it on to the final contributors. Simple. Maybe a week to turn it around?

But, just like everyone else, it took me a while to get going with the writing. I needed to read the other entries. Then I needed some pictures of it with Audrey… but she wasn’t playing ball and oh how precious a real book of heartfelt stories is, I couldn’t let the kids have free-reign with it!

Finally I put pen to paper and wrote my entry (slightly disappointed by my handwriting!), but I must admit the words didn’t come as easily as I’d have liked. I felt a lot of pressure not to repeat what other families had written and also not to repeat things I have written in my blog over the years.

I’m very proud to have taken part, added our entry and pictures of Audrey, but of course I feel like I could have done more. Poured my heart out more, stuck in the best photographs, said something deep. And I forgot to take pictures of my entry and/or type up my words, so I can’t even tell you exactly what I wrote! Oops. Oh well, it’s with the penultimate contributor now, before hopefully winging its way to a (famous) advocate to write the forward to what will hopefully be a published piece of work!

One thing I do know, is that writing makes me happy. Advocating for Audrey and people like her makes me happy. As she begins her new journey from toddler life to schoolgirl (!), I too shall be start my new journey to pursue my writing. To devote time and energy to it, but also have the flexibility needed to work around Audrey’s school life. So far (fingers crossed), Audrey loves school and is throwing herself into it all will full enthusiasm and making me proud like she always does.

Audrey Starts School!

Audrey holding a picture of me at primary school

I’ve just dropped off a piece of me in a classroom with lots of people I don’t know. The little lady has started reception at primary school.

My daughter is friendly, kind and gentle. She loves imaginative play and reading books. She likes routine. I have no doubt that she will enjoy school, I’m just not sure how much I’ll enjoy her being there!

Anyone who knows me that I will cry at TV programmes, songs that come on the radio and a fleeting thought about someone’s sad situation, so it was a huge surprise that I didn’t cry today dropping Audrey off at her first day of school.

Several factors helped – school drop off is not a romantic, sound-tracked moment.; it’s carnage! We went as a family, with a child in a buggy and one on the loose, we battled through a crowd of legs and shouting and hugging and hellos and goodbyes to get to her class. Also, Audrey was very excited. She managed to (almost) walk all the way there (major achievement) and she jumped, sang and hugged her way down the road, she was genuinely happy to be going to school. It’s tricky to feel the true emotion of a momentous occasion when you are in it. It’s actually easier for me to be tearful anticipating it or reflecting on it.

And so, here I am in a cafe. Ted and Rex are off shopping (typical boys!) and Audrey is in her school classroom, with her teachers.

Of course I can’t help but reflect on 5 years with her. 10 months of maternity leave of just us, followed by a mix of us and nursery, us bump and nursery, us Rex and nursery… and now Audrey has her own thing, she is a schoolgirl!

“They” say it goes in a blink of an eye. I don’t know if  I feel quite like that, but I do feel immensely proud of Audrey and how far we have come from tiny baby on oxygen to confident 5 year old.

As I analyse my feelings, I can see what is creeping in… I felt it during maternity leave with Rex. She had her nursery days and we went to groups but I was suddenly a different mum, I was seemingly a mum of one typical child but that was not my whole identity. She is a part of me, a part of me that I am truly proud of and it can feel very strange to be out and about without her. What a mix of emotions this brings and a new chapter for us all – I have handed in my notice at work and plan to work on freelance writing. I am very lucky to have a supportive husband allowing me to take this leap and it also means that I can be there to drop off and pick up Audrey from school.

Happy September and good luck to everyone in their “firsts”, I love autumn and I’m feeling so very happy that its crisp and sunny outside and the leaves will soon be crunchy under our feet. My favourite time of year.

Alike, But Different.

On Wednesday night I woke around 1am to find myself being sick on and off through until 8am. It goes without saying that Thursday was not a great day for me. Thankfully Ted worked from home and my children offered me plastic cups of “medicine” and gave me hugs and kisses (that I should have fought off due to my potential contagiousness!), they also whined a lot and ran around arguing. Being ill as a grown-up with kids is the worst. The best time to be ill is when you are a kid and a parent looks after you.

Brighton Pride 2018

Anyway, I felt a lot better on Friday and we had a good day with the kids (some top secret modelling, but will share more about that at some point!), we took them to the park in the afternoon and met a lady with a 4 year old son who has special needs. We got chatting and we found ourselves in a position we’ve been in before – struggling to empathise with someone who thinks you can. She sees another “special needs family” and shares her story, but we feel, well, like we occupy a different space; Audrey isn’t “severely” special needs, but she’s not typical either. She sits in a space in between the two. I’m not denying Audrey has special needs, she definitely does and you only have to spend time with other 4-5 year olds to know that she is “different”. However we often find ourselves chatting to someone who is offloading about their child (with some form of special needs) constantly waking in the night, struggling to communicate, challenging behaviour, interacting with other children (hitting, tantrums)… for the most part I can only really apply some of these challenges to Rex!

This lady said she was surprised we had chosen to have another child after our first had special needs! Ha! How we laughed about that one on the way home. All children are hard work and of course, children with special needs present a different set of challenges, but Audrey made us feel very comfortable about doing it all again. Rex, however, well and truly scuppered plans for any more kids!

That evening I was very much looking forward to a decent sleep (as even Thursday night I was restless). As discussed with the lady in the park, Audrey is a good sleeper, but Rex sometimes shouts in his sleep.

Around 2am the dreaded sound of Audrey retching reached my ears – I was out of bed like a shot. There she was, sat upright, sick in her bed and bright and chatty “Sorry Mummy” she said as I wiped up the sick. And after vomiting in the bucket I held for her, “Phew! That’s a lot of sick!” She said, brushing her hair back.

She literally couldn’t get any better. After returning to bed and several more leaps back out to her aid with the bucket, I decided it would make more sense for Audrey and I to sleep in the spare bedroom together. So I scooped her up and laid next to her in the double bed, bucket at the ready.

As soon as I laid in the dark with her, I felt around to find her face and gently stroke it. She did exactly the same and stroked my face. She whispered that we were in “Uncle Graeme’s bed” (because he stayed in our spare room for a week during his chemo this year). She has a snotty nose at the moment, so within minutes she was asleep but snoring like, well, like her Uncle Graeme. I realised that I was really going to struggle to sleep, but do you know what? I strangely didn’t care. I could smell her sicky breath, but I could also feel her warm body right next to me and I felt so lucky to be her mummy. To be her protector.

In the morning I was awoken by many things (Audrey’s feet kicking me, the light coming through the half-closed blind, Rex thrashing about in his cot), but it was magical to wake to the sound of Rex saying “I want Audrey back!”.