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.

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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!”.

Person-First Language is Important

I’m writing this to elaborate on a quick post I did on Instagram explaining/reiterating (I’m sure I’ve said it before) that Audrey is Audrey first; a child with Down’s syndrome second. So she is never a “Down’s kid” she isn’t a “Down’s syndrome girl” she is a child who happens to have Down’s syndrome. My little Instagram rant stemmed from the following…

I arrived for the open evening at Audrey’s school on a sunny summer’s evening, listening to Desert Island Discs, feeling excited about my little girl’s future in mainstream school.

I joined a queue to buy school uniform, chatted to some mums I had met before and gleaned information from these pros (with kids already attending the school) on what to expect.

I sat down clutching the welcome pack with Audrey’s name and class on the front and by chance sat behind the mother of one of Audrey’s nursery friends – (I could see the name and class on her welcome pack) and I could see they were in the same class. Everything was falling into place.

The teachers spoke at the front of the assembly hall and took us through the basics; uniform, PTA, after school club, forest school (so on trend). And then we all got up and filed into our specific classrooms to mingle and meet our child’s future teacher.

For some strange reason, I was quite focused on meeting Audrey’s teacher, but the thought of her 1:1 had barely crossed my mind… at least I thought it hadn’t, but I realise now I had already pictured her – in her 20s, enthusiastic, dedicated to children with special needs, passionate about it, a Makaton pro, a bit quirky.

So I guess it was a surprise to meet the lady who was older and not physically the picture I had in my head. And then, as surprisingly as she’d appeared; she made a bad impression. I asked about her experience and she told me how she had been working with a “Down’s boy” at the school and then she’d been at a special school a few miles away which had “loads of Down’s kids”. Outside I was smiling and nodding, inside I was crushed. How could this be someone passionate about people with Down’s syndrome? She doesn’t even know how to speak to me without offending me! She doesn’t understand person-first language. How can this person be the chosen 1:1 for Audrey? It made no sense.

I was awkward and made some comments about regretting not preparing with questions and I moved to the queue to meet the teacher.

The 1:1 popped up again, asking me about Makaton signing and why Audrey’s nursery had corrected her (she showed me the sign, I corrected her too). Such a minor “hiccup” you might think, but at this point I was getting anxious inside, imagining Audrey bonding with a woman who was seemingly getting everything wrong.

The thing is, people get person-first language wrong all the time and most of the time it doesn’t bother me that much. I don’t like to be pedantic (ok, I kind of do) but hey, I was made that way… in the same way that a cafe might list “sandwich’s” for sale and I will despair (but not run in asking them to correct the laminated menu), I despair a little over someone saying “a Down’s kid” but rarely take the time to correct them.

However. This was meeting a professional in a school. Someone who has clearly worked with children with Down’s syndrome for years and someone who has been employed to spend a lot of time with my daughter. So in this scenario, I should have said something, but because awkward conversations are not my thing, I ranted at other mums, had a rough night’s sleep, ranted a bit more to friends the next day and finally sent an email to the Head of Inclusion at the school to explain what happened.

What really gave me the confidence to write to the school, was the support I had from mum friends (those with typical children), who agreed this language was not on. They made me feel like I wasn’t over reacting.

This all happened last week and having had some time to calm myself and reflect, I had a meeting at the school this morning and I’m pleased to say I feel reassured that this was an unfortunate mistake and that they (the school) are more than versed in the correct language and will be ensuring all the teaching assistant are reminded of the correct terminology.

It was also helpful to hear that the 1:1 had come to the open evening off her own back because was excited to meet me, because she is excited to be Audrey’s teaching assistant. I can step back now and know that she does care, she will learn from this and that this bad experience can help the school, parents and teaching assistants learn something moving forward.

In fact I’m already discussing with another mum from the T21 crew (who was my immediate “What would she have done?” thought when I was faced with the dodgy language) a way of using this experience to create a “going to school pack” that can help schools and families learn from this dodgy experience.

Hopefully no one is reading this wondering what all the fuss is about, but if you are, then please just know that words are important. Audrey is so very precious to me and I want her to have the best start at school as she can possibly have and this begins and ends with her being treated as an individual.

Party time

The first time Audrey was invited to a birthday party (by a child who’s parents we didn’t know – a nursery friend), it was a real example of how she was accepted and liked by her “typical” peers. It was a big deal.

When we went to the party, we all had a good time overall but Audrey did show signs of being “different”. She wouldn’t eat (and the food on offer was the stuff of dreams: crisps, blueberries, chocolate cake, sausages…) and she asked to go home. She wasn’t crying, distressed or upset, she was just… uncomfortable.

We had a couple of other party invites and basically decided it was important to always get out of her comfort zone and see how she got on (rather than say no and miss out through fear). Again, we saw Audrey not eating (despite the selection of food being perfect), asking to go home or complaining it was too loud, but we never let it stop us trying, because she often enjoyed a little dance and she always left happy.

And then it happened- she ate at a noisy party. She joined in. She didn’t complain. We had a great time.

Now both our kids live for parties! (Because they love music, presents and cake).

So we were pumped last weekend to be offered a chance to go to Big Fish Little Fish at Stanmer Park for a – wait for it – family drum n bass/jungle afternoon rave. As we set off to drive up the road we realised that (yet again), we had left the kids’ ear defenders. We have them for events just like this and we literally never remember to take them, so the kids just have to make do and deal with the noise.

We arrived on a very sunny day to the amazing marquee of bubbles and play tunnels and a very loud sound system and I admit, I was a little worried. But Audrey (and Rex) bossed it. They came in, ran about exploring and got stuck in. Audrey showed a wobble initially when she had no interest in having some apple juice (funny this is a measure of how uncomfortable she is, but it is!), once she had settled she took a sip and I knew we were ok.

She showed enthusiasm for the face painter, again, something I shamefully would associate as something she “might not like because she has special needs”, but I knew she had dabbled a little at nursery and she seemed keen, so we queued up. When I sat her in the chair, the face painter asked me if Audrey had had her face painted before and she was just very considerate and gentle with her. Audrey was a really good girl and the face painter was so fast that before I knew it, I was looking at the most beautiful tiger in the world!

Aside from dancing, drinking juice, climbing through tunnels and rolling out play dough, there was also the fabulous outdoor space filled with “rustic” climbing frames and slides for the kids.

Audrey was unsuitably dressed for this in her fabulous Tootsa McGinty dress and Next tiger wellies, but oh how she surprised me with some supreme climbing! Rexy too (but it’s extra tough for Audrey with her low muscle tone).

As someone who regularly sticks to routine, taking the kids to the same groups/parks/cafes that I know “work” for us, it seems a little crazy to be saying this, but it’s good to step out of your comfort zone sometimes. Kids love routine and it can be hugely stressful if you do something new and they hate it or misbehave, but you’ll never know unless you try.

Last Sunday we went to see my Nan (the kids’ Great Grandma), which I thought would probably be stressful/chaos, but was actually great. She has just been moved to an old people’s home and she is almost 99 – Audrey’s middle name is Emily, after this nan. Emily lit up seeing Audrey and Rex, but so did all the other old people in the home, they looked so happy to have children running around, it was great. The kids loved the piano there (and made quite a bit of noise, but no one minded).

That same day, we were going to the seaside, the kids were excited (because, despite living by the sea we rarely go down there). I thought that would be a really fun activity, but instead, the sun disappeared as soon as we pulled up (literally, a weird sea fog arrived and the temperature dropped). We got down onto the sand and Audrey’s nose was running, the cold wind was blowing and no one was having any fun, we were all shivering. But at least we tried!

Next week are trying a new dance class at the marina. Watch this space!!

(Belated) World Down’s Syndrome Day 2018

I always think this day comes around so quickly and that here I am again (eye roll) talking about World Down’s Syndrome Day… but then I realise that every day is #WDSD for me. So for those of you not regularly “exposed”, let’s learn a few things. Firstly, it’s 21st March and I didn’t finish this post in time (forgive me).

This year I threw myself in a little bit more than usual- we were in a printed magazine!

A piece came out in Take a Break:

This came about from The Specials “If I could go back…” video we took part in, (writing a letter to myself to talk about what I wish I had known when Audrey was born).

I also submitted a list to Mother of All Lists. An honest “Instamum” I am a fan of. I actually found it quite hard to write as I found myself getting quite ‘ranty’ (aka passionate?) when talking about DS. However once it was out there I had such a fantastic response, I was really pleased to have done it. It’s scary exposing your personal story (especially one that touches on Down’s syndrome screening and abortion), but it was a great way to reach an audience of mums who might otherwise have no knowledge of where society is with screening for DS or that humans like Audrey exist; being fabulous.

We had a party the weekend ahead of WDSD with Brighton and Hove families. Soft play, a disco, party food, music man, a raffle… great fun but exhausting. At the party a child was using Audrey as a step-up (climbing on her!!) and Rex threw himself in the way saying “That’s Audrey!”. I mean, he would happily climb on her himself, but he will also defend and protect her when needed! So lovely.

Audrey’s next EHCP meeting was looming, school in September seems close and scary. She’s seen an episode of Topsy and Tim and seems to think she’ll get a bike and a helmet to go to school with! She cracks me up. Once we had the meeting however, I felt so much better about it all. The SENCO was lovely and it felt… doable. I could imagine her at a mainstream school and not start to feel sick!

We are doing our monthly table tennis sessions thanks to our local T21 group (Trisomy 21 is the medical name for Down’s Syndrome) and loving it. Naturally the kids don’t really play table tennis, but they have a good runaround in a community space and it’s an inspiring place to be (given that they have 3 coaches with DS there – the only 3 qualified sports coaches in the world with DS!).

I’m always full to the brim with things to say about Audrey, about Down’s Syndrome, although I feel I’ve neglected the blog a little lately (which I’ll try to rectify!), but just know that this little human of ours is doing really well and we #wouldntchangeathing

Mental Health and Mumming

Once upon a time I was a happy-go-lucky human who couldn’t get their head around how people who felt depressed couldn’t just think about happy stuff and snap out of it. Yep I was that naive.

This was before kids. Before 3 members of my close family died of cancer. Before I realised that sometimes it can all just become too much.

After my mum died last year I would find myself sat in the mornings feeling unable to motivate myself to get dressed and do stuff with the kids. I would stare into space. I would feel despair. I would feel “what’s the point?” And I’d feel scared by those feelings.

The first time I ever had these kind of depressing thoughts were actually after having Rex. The sleep deprivation and his general unhappiness as a baby made me feel like we had ruined our happy family by introducing this child. But I was functioning, showering, seeing friends… and I didn’t want to die. I didn’t want Rex to die. I just wanted it all to be fixed.

And so according to the test “they” (doctors, health visitors) get you to take; I didn’t have post natal depression. Clearly I was depressed, but not badly enough for any intervention.

This actually leads me to another example of why I get so frustrated by those who talk about the “suffering” of a sibling if you choose to continue with a pregnancy after a Down’s Syndrome diagnosis – that you are willingly choosing to bring a child into the world that will require more attention and cause your other “typical” children to be neglected in some way. We had a lovely child with Down’s Syndrome, she had all the love and attention she could want. We gave her a typical sibling and yikes, he was needy! Audrey’s needs were on the back-burner. She watched CBeebies a lot. And even though we’ve come through dealing with a very needy baby, Rex is still very much the one who causes upset. He’s the one that needs more attention in general.

At bedtimes there have been many times when magical cuddles with Audrey have happened to a soundtrack of Rex having a tantrum over socks or some other nonsense. He has much more of a temper than his sister, he likes to push boundaries and in fact, he has started pushing and hitting and Audrey does so back. She has learnt a lot of bad habits from him – she never would have climbed on the coffee table pre-Rex and she never would have hit me. She had never attacked the toilet tissue before Rex showed her how it’s done! Having a child with special needs can be tough, but having kids is just tough anyway.

They are now both perfect siblings – holding hands and plotting together one minute, crying and fighting over a piece of cardboard the next. Lovely, exhausting little… angels.

And so, with the level of adulthood I have now reached (bills to pay, important people to mourn, feral children to discipline), I find myself in therapy. I am attending counselling sessions, which is actually great. I find it particularly strange that it started about grief and soon became “good god my kids are driving me insane” and is now “please help me figure out how to be confident and do something with my life”. Well, at least we are progressing!

What you learn in therapy (or rather what I’m learning), is that “me time” is crucial to mental health. Doing what you love or doing something that makes you happy, regularly, will keep you sane.

I am fully aware that if I am lacking in “me time” it’s usually my fault. I still find it difficult to not think of the kids as entirely my responsibility. So whenever I leave them with someone (even my husband!) I feel guilty or like a clock is ticking and I need to get back to my job as mum. Crazy but true!

To briefly summarise the journey of a mother: pregnancy gives you a passenger/parasite to deal with, dramatic body changes and hormones. The baby then remains a parasite of sorts and your body is still different and very much not yours. Once they finally become a walking, talking more separate human, they create a lot of stress and mess and you perhaps still don’t feel like you can be yourself. I put on a new dress last week and by the afternoon Audrey had jumped on me and knocked my (thankfully not hot) tea all over me. I regularly find play doh on my jeans. This morning I was applying eyeliner in the bathroom whilst two children attacked my legs. I very often wee whilst being harassed by them both; “Mummy! Mummy? Do you need tissue? Are you finished? Wash your hands! Dry your hands! Mummy!”. It can feel all-encompassing and unescapable at times. How can I find the time to be me and not “Mummy”?

Thankfully, we have good settlers and our evenings are our own. I need to prioritise more time for things that keep me sane and also remember that although my day is peppered with stress and lunacy, it’s also full to the brim with beauty and love. I mean; look at them: