World Down’s Syndrome Day 2019

It’s been a year since my list published on Mother of All Lists and reached a new audience with “our story” for World Down’s Syndrome Day. We’ve also been featured in magazines Best and Take A Break, on blogs like Mental Mutha and Gas & Air. Basically that’s an aim for me – not only to reach someone who needs us (a new mother to a child with Down’s syndrome or someone with a prenatal diagnosis), but also to find those who have no knowledge or connection to Down’s syndrome. To open their eyes and make them think. For them to see that Audrey is a human being with a right to live her life to the fullest.

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You see, on World Down’s Syndrome Day I often feel overwhelmed by the content. Videos, articles, stories, clips, blogs – all devoted to raising awareness of Down’s syndrome. The community is trying to make people aware that this is not a condition we need to eradicate, but it is something we need to learn more about and one we can celebrate not mourn.

I know that we are incredibly lucky with Audrey and her abilities. I also know that had we sat her down in a corner and ignored her (true description from a mother of how her baby with Down’s syndrome was treated at a nursery in the 1960s), she would not be doing so well. She thrives with love, care and attention and with a place in the world among her typical peers and her family.

It pains me to think that someone might receive a prenatal diagnosis of Down’s syndrome, be at a crossroads as to what to do and decide to terminate based on dated information, lack of support or because they aren’t given any other option. Medical professionals and organisations that are there to assist with a prenatal diagnosis can be surprisingly callous or biased when offering up ‘options’, imagine receiving the news that your unborn child has Down’s syndrome and immediately being asked “When would you like to book in your termination?”. I’ve heard stories of women being continually asked “Are you sure you want to continue with this pregnancy?” after they have made their position very clear.

Just to explain for anyone who doesn’t know – babies prenatally diagnosed with Down’s syndrome can be terminated up to TERM. Because the UK Abortion Act 1967, states that there “is no time limit on the term of the pregnancies” when there “is a substantial risk that if the child were born it would suffer from such physical or mental abnormalities as to be seriously handicapped.” “Seriously handicapped” is then not further defined, so this loose term can allow mothers to terminate based on a cleft palate or a missing arm – if you can argue a child will “suffer” due to a disability, you can abort on your due date if you choose to.

I write this from a perspective of someone who believes in a woman’s right to choose – I believe in a woman’s right to have control over her own body and her pregnancy. But also as someone who thinks that it is madness to control the lives that enter this world based on how “perfect” or “imperfect” they might be. Especially when we don’t know how to measure that. What on earth is perfection anyway?

Well I had no idea what true perfection meant until Audrey entered my life.

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Happy World Down’s Syndrome Day 2019!

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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 Good Stuff not in the Guidebook

Last week I had a rare full day alone with Audrey (as we are in the school holidays and Rex was at nursery). We went in the car to a lovely play park and cafe by the beach. We picked out our best pebbles and I told her how I used to go to the beach with my mummy and collect the best shells. Audrey has a wonderful way of interacting, she’s supportive and interested; “Oh wow, with your mummy? That’s great!”.

We had a play in the park, we shared scrambled eggs and toast in the cafe. Audrey bossed me around a bit, she bossed around others too (telling a mum to “Calm down” when she was telling off her toddler!), we got back in the car and headed to the supermarket.

She flatly refused to get out of the car when we go there – told me she wanted to stay put. I tried to be as gently as possible in convincing her, but I was getting no where fast. I eventually had to man-handle her out and then distract her with news that the trolley had a ride-along buggy board! Fun! It worked.

At home we were both tired and sat watching a film until I thought it best to head out again (or we’d easily watch TV all afternoon) and we walked to our local park.

None of this is a big deal… but it was a big deal. For Audrey to walk to the park and back and not ask to be carried, for her to interact and play with other children once we got there, for her to stop sensibly to cross the road and hold my hand – things one might take for granted in a typical 5 year old – I do not take for granted. I revel. I praise. Oh wow… she is going to have such an inflated ego!

Because none of this simple stuff was expected, because her default position is a condition that “limits”; I am constantly lifted and amazed by her. As we walked to the park, having a conversation, I thought back to the leaflet we were given when she was born. It’s intention is not negativity, it aims to give you a fair account of what to expect of a child with Down’s syndrome; but they have to cover everything. So the list goes on; language delay, possible hearing problems, possible sight problems, speech may be difficult to understand (if they master speech at all), a long list of health issues, challenging behaviour, the autism spectrum, food problems, thyroid issues…. it goes on and on.

To be honest we hid the leaflet away and didn’t return to it. Sometimes something will get mentioned by a professional “Of course you are aware that children with Down’s syndrome can be prone to…” and I think “No, I wasn’t aware of that” and it doesn’t matter.

I know that knowledge is power. I know it is good to be prepared. I also like that my child leads the way a bit. There was no leaflet with Rex; we just muddled our way through.

I know that for some, that negative list in the leaflet is a reality and they aren’t walking to the park with their 5 year old with DS chatting about flowers and “Oh look that’s where I had my birthday party…”, I know we are so lucky. I feel lucky every time she calls me “Mummy”, every time she holds my hand, holds it to her face and then kisses it.

Our life is not without stress – several bouts of diarrhea for the kids last week, the two of them fighting, stropping, running off, challenging me… but I want to remember all the good stuff. Actually, I want to focus on it! Because how else do I get through all the crazy days with these kids?! My magical, crazy and surprising kids, that have no guidebook.

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.