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!

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Why I Still Love Christmas (having lost both parents)…

Christmas was once the most excruciatingly exciting time of year. From age 3 to 13ish it was the highlight of  life, from the build up (decorations going up, rifling through the wardrobe for presents, the BIG shop that included fizzy pop and chocolate) to that fateful night where the anticipation is just too much and you cannot sleep to that morning (eek I am sure we were up at 4am sometimes!) where the presents were ripped open and the day was pure joy and chaos.

We had big family Christmases, I think at their peak there was around 12 for dinner. My dad’s parents were not around (aside from his stepmother but she wasn’t with us Christmas Day), but my mother’s parents were close (Granddad was hilarious and a must-have for family games), I had three siblings, two old enough to have partners/kids, sometimes my uncle would join us with his wife, I think we had a great nan around too. We had one of those extendable tables and garden chairs with cushions were added into the mix.

I always had a mince pie for breakfast. We always played charades and various games in the evening. We always ate too much. I would have a Christmas Day outfit planned (a velvet dress generally, ooh I remember a year with ski pants and a roll neck!). My mother would embarrass me with her interest in flashing Christmas themed earrings and knitwear. My dad made me ‘snowball’ cocktails (don’t worry, mostly lemonade).

Sometime in the early nineties I accompanied mum to the local garden centre to finally update our hideous Christmas decorations. For years we had dragged those sparkly pink, purple, blue, silver… (you name it) foil garlands and lanterns (that hung from the centre of the room to each corner) down from the loft. We had a toilet-roll-holder-type-angel for the top of the tree. We revamped things that year and switched to green and red traditional stuff and ditched the tinsel. It was a big change back then.

It was in my late teens/early twenties that it really hit me that Christmas would never be the same again. I was no longer filled with that crazy level of excitement, our numbers had diminished a little, but most of all we were all grown up. Only a single nephew remained “young enough” for true Christmas excitement… for me, mum’s novelty stocking fillers became eye-rollerable rather than excellent (and she was an absolute stocking-filler-pro! Pre-internet we had lots of personalised items with our name or initials on, as well as very bizarre stuff like chocolate shaped like sardines in a tin, I LOVED my stocking in its heyday).

By the time I had met Ted and we tried that Christmas juggling you do when you are first a couple and want to spend Christmas together, but also do not want to leave your traditional family Christmas behind… I was ready to accept that Christmas had changed for good.

I think that made it easier for me to live with the fact that now, Christmas is very far away from that of my childhood. I have no parents, I have lost one sibling (and the connection to her two grown up children is weaker), My eldest brother is… well that’s difficult to describe, let’s just say he’s ‘a problem’ and my other brother battled cancer this time last year. I have one grandparent left, but she doesn’t know who I am and she is in a nursing home.

Yet none of this has ruined my enjoyment of this time of year. It has definitely affected it, you can’t escape the sadness loss brings, but that’s life. Naturally every emotional Christmas advert sets me off. Every Christmas song. I am either smiling or crying or both. But I’m a grown up now, it comes with the territory.

My mother was also a fan of Christmas. She liked to complain (in more recent years) about the stress and the effort, but she still had two Christmas tress and a crazy amount of decorations. She would still stuff the cupboard with nuts, chocolates and crisps even if only a few people were visiting, hey even if no one was visiting! Now I am in charge of creating the magic (hiding the presents not rifling through the wardrobe to find them!). Now I want to wear stupid Christmas jumpers and hats, now I see the fun in the tat.

And of course Audrey and Rex bring a whole new level to Christmas. We have their innocence and joy to surround us and their happy faces at what will be (in the scheme of things) quite simple presents. I took Audrey to an eye test last week and in the car she was singing along to Wham’s “Last Christmas” (she catches on to familiar tunes quite quickly and she’s definitely enthusiastic, if not in key), it was lovely.

The thing is, I like to think that everyone is in a better mood in December. So what’s not to like about that? A couple of weeks ago, a friend posted on Instagram about Kindly and the project they were running for people to write a letter for someone who is isolated at Christmas time. So I signed up immediately and within hours I had an email confirming I would be writing to a woman called Sheila (which was my mother’s name). I mean, obviously I was in tears but I was also so wonderfully uplifted by this tiny coincidence. That same day, I had stopped to donate to an old man collecting for the Youth Cancer Trust in our local Tesco and we had a very long chat. He was perplexed by the amount of people who completely ignored him saying “Good morning” and I told him about Audrey and how she loves to say hello to people but often they are just in their own world (or on their phone/listening to something on headphones). It’s part of life now to be zoned out and not in the moment with the other humans around you.

Which is why it is important to remember that Christmas is a time to connect with people. I had little wobble the other day when our ridiculous bumper pack of Audrey’s school pictures arrived and I thought; wow, we really don’t have that many people to give these to. But then I remembered that we do. We still have lots of family left and we have many friends who are “aunties” and “uncles” to our children. We have a wonderfully wide network and I am so grateful for that.

Every Christmas will be different, it may have felt like pure light as a kid and now it has darkness too, but I can handle that, because now my children are building their Christmas memories and they only see the light.

Merry Christmas one and all x

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

Behind the squares

If you are reading this you probably know I share our life on Instagram and I also blog here. I am always open and honest, but there are many times that when I am enjoying “likes” and comments on an Instagram post about my beautiful children I am also watching them hit each other. Life is full of ups and downs, Instagram has it’s name for a reason; it’s tiny instances shared and you don’t always show the whole story in an instant.

I like to think that I share more reality than those monochrome “perfect” accounts filled with succulents and expensive candles.

However, right now, behind those squares of my smiling children, coffee shop visits and shiny new trainers: there is cancer. Again.

I myself cannot believe how often I have been “touched” (punched in the gut more like) by cancer. My father died of cancer in 2010. My father-in-law-to-be died from cancer in 2011. My sister died from cancer in 2012. My mother died from cancer in 2017. And now… my brother battles cancer in 2018.

Me and my big bro.

It always made me a bit uncomfortable, sharing too much of this sort of thing on social media, but this time I feel so utterly thrown by it, I want to acknowledge it. I want to make sure people are always aware what’s behind the squares.

Just before Christmas, my brother found out he had ‘operable’ cancer. So it was upsetting, but apparently easily sorted. I took him for the operation on 27th December. After that, you’d have hoped it was all onwards and upwards, but he had another niggling pain. So, (after the obligatory painkillers from the GP), there were more scans, mores tests and yes, the cancer had spread.

Today he is in hospital having his first round of chemo. Week on week it has been news that has uplifted us and punched us in that gut again. They can’t quite decide how bad this cancer is. I have continued my weeks on autopilot. Much like when my mum was diagnosed with cancer and when she died, I had to “go on” with an invisible dark cloud over my head.

And so I sit and sing “Wheels on the Bus”, I make small talk with other mums over tea and biscuits “How are you?”, “Fine, fine and you?” I placate squabbling children, make dental appointments, grill fish fingers and function as a normal human being whilst in the back of my mind I am thinking about my brother. Constantly. About how he is young (43), that he’s one of the best people I know and that he doesn’t deserve this. How the kids adore him, how he adores them and how I just can’t take anymore of this darkness. Pain, suffering, death, I’ve had enough.

Sometimes when the kids are resisting their coats or fighting over a plastic egg, I want to scream at them; “Uncle Graeme has cancer! That’s more important than this crap!” but of course I don’t.

It’s pretty crazy to think about all the people “functioning” right now. I mean, I was in TK Maxx at 6pm on Wednesday night buying pants, socks and a jumper for my brother (as he was unexpectedly kept in hospital after an appointment about his scans). As I queued up and subsequently paid, with all the standard niceties “Have a nice evening”, “You too”; I wanted to scream “My brother might be dying! I need to get these clothes to him in hospital!”. And as I walked in the rain from my car to his ward, crying because I just don’t want this to be happening, I actually wanted someone to ask me: “Why are you crying? Are you ok?”, which is odd considering my “Fine” stock response to friends.

I suddenly became very aware that each and every person you pass on the street might well be dealing with something. The harmless old “Cheer up love, it might never happen” feels like such an unbelievable over step of the mark, because stuff happens . We are all dealing with dark stuff, all of the time. Break ups, miscarriages, redundancies, illnesses, deaths, depression, you name it; someone is putting a brave face on over something.

I can only remain hopeful that all will turn out fine (how else can I go on?), but I guess I want to end on two cheesy words that are said a lot right now, but sum up how I think we can make the world a better place and as a reminder that you never know what someone is going through behind the squares/their smile/their ability to say “I’m fine” (when that is, in fact, bullocks);

BE KIND.

x

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: