Attention!

I’ve made no secret of the fact that when Audrey was born, that little face that showed she was “different” flooded my brain with negative thoughts.

Would people want to spend time with us? I assumed not. Would they whisper about us? Stare? Strangely I imagined her finding it hard to make friends. In fact, I thought everything would be hard for Audrey and for me.

In reality, she was a baby. A baby with a tube on her face, yes. A baby with an obvious “condition”, but she could still enjoy a coffee shop visit and baby group like any other baby. I had definitely underestimated humans in general, but I had an awesome NCT crew who were always there for me and were not phased in the slightest by Audrey having Down’s syndrome.

Inside I was still constantly surprised by how welcomed we were at baby groups, how it was never a big deal. I emailed ahead to book for baby massage, with a hard lump in my throat I would type “my daughter has Down’s syndrome and is on oxygen” and the reply was warm and… normal. My place confirmed, in fact I can remember the teacher’s words along the lines of “this class will be perfect for her…” and once there, she was fawned over like any cute baby.

Of course, we’ve had the odd strange incident, but it was less-so staring/nudging/whispering, more straight forward “My friend had one of those, couldn’t talk” or “What’s with the tube on her face?” – the bluntness was laughable. And of course she was (still is) small for her age, so you get a sympathetic head tilt or the question “Was she prem (premature)?” when discussing her age. She wasn’t premature (she was a few days late), but I found the confused look that followed that answer so uncomfortable, I would sometimes just say yes! Ha.

Once she was off O2, sitting up and joining in, quite simply the staring, the whispering, the attention: it was all there but not in the way I had dreaded. Audrey was (is!) a superstar. People are drawn to her because she is cute, friendly and funny. She was often a very enthusiastic participant in music groups, clapping, singing, head shaking. She says hello to anyone, asks people’s names, approaches children/babies when they are crying to see if they are ok. I’m more surprised now if people don’t stare, if they’re not interested in her, because she is interesting!

Since starting school, we’ve found a whole new audience. When we arrive at school, if we are early and waiting for the gate to open, I often see the nudges… older girls look at her like a living doll, they are like walking heart eye emojis gazing at Audrey. People shout “Hello Audrey!” when we are out and about and she gets presents/pictures/notes in her school bag from her friends at school. She marches into school with enthusiasm each day (often saying “Good morning” to the teachers at the gate) and she bounces out each afternoon and throws her arms around me. She is exceeding those low expectations I had of her in those early days (based on an outdated view), everyday.

I’ve actually written this because of a little Instagram post that sparked a few questions and comments from mothers of children with DS/other special needs who wanted to know more.

I know that our experience doesn’t cover everyone else’s – we are lucky in that her needs are not as complex as some, but we’ve had our moments. We’ve had to leave noisy parties and take time outs from events – sometimes I’ve felt uncomfortable in those situations, I’ve felt stared at. Those occasions are rare and the upside of the whole experience of having a child who is different is the immense joy we take in the little things she excels at and achieves,

I never knew that Audrey would have this way about her that would make me want to show her off to as many people as possible. I never expected to feel like I was accompanying a celebrity to the park! So, I say… bring on the stares!

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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!

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!

Why I know nothing about potty training

Potty training was always something I feared; I simply decided that for a child with a learning disability it was worth waiting for her to be older and have a better level of understanding before even attempting such a task… but also I hoped she might just magically figure it out for herself.

Before she was two, Audrey started to shuffle off to corners of the room to poo in her nappy. She often signed for a nappy change. We were attending Whoopsadaisy around this time and Audrey was learning to stand and walk, they encouraged sitting on the potty and subscribed to a different method to me – get them on the potty early and chance a pee here and there, hopefully she’ll get the idea. Well she did a wee on the potty a couple of times by chance, but it didn’t make sense to me work at it so early on.

I guess found it odd to encourage a child that couldn’t walk or stand to use a potty and once she was two and a half, Rex was born and the last thing I wanted to do was potty train! A discussion with a helpful health visitor made me feel better about that – she said “do not try to potty train whilst dealing with a newborn”. So I didn’t.

Time went by. Pull up nappies were used, potty books were read… it felt like we had so much time (since we deferred Audrey’s school start). Yet she started school in nappies.

We had many wee successes, but she was wasn’t consistent. I knew she didn’t need to be in a nappy all day because she could go hours without a wee, but I wasn’t convinced she actually knew when she needed a wee. I had some discussions with healthcare professionals about her being constipated quite a lot and they said this could mean she feels “full” all the time and that it wouldn’t be as easy to identify needing a wee.

With little effort, it wasn’t long before we switched the pull ups to knickers because Audrey decided to hold her wee all day – she would just do a wee  in her nappy in the morning and a wee on the toilet at home before bedtime. Great that she was dry, but unhealthy and stressful for me (worrying about urinary tract infections!) and she also had a couple of accidents at school, wetting herself when falling over.

We’ve had the Christmas break and suddenly Audrey has been really getting it. Asking to go for a wee (even out about) in the morning and afternoon and successfully having a wee. Oh how we celebrated! She’s been back at school over a week and they’ve only seen one wee from her…! And so we are back to where we are started, but at least she is consistently dry.

Well, I have a second child. Did I mention? Ha. He is 3 next month. And… I know nothing about potty training!! Rex requested to wear big boy pants and I thought “Wow, it could be this easy, maybe I don’t need to actually do anything to potty train this one either…” – that was before 3 wee accidents and a quick return to nappies.

He does hide in a corner to poo (in his nappy!), he responds well to rewards, so we could be on our way, however he doesn’t seem to quite “get it” yet and the thought of wee every where just puts me off. Both are in nappies at night time. I thought that was fairly common, but after a chat here and there with other mums, I find many have nailed the night time training too by 3 or 4 years old.

Advice I have heard…

  1. “Don’t leave the house for a week.” Not an option. Rex is feral at home, we’d go mad.
  2. “Take in a potty about 10pm and put the sleepy child on for a nighttime wee.” This maybe in our future, BUT, Audrey is very sleepy and I’m not sure she would wake enough to wee, Rex is the opposite and I fear we’d wake him up and not get him back down.
  3. “Take them to the toilet every 15 minutes.” Well this is practical if we follow advice number 1. But if we want to live a normal life, going outside, doing things… I just don’t know how I would get Rex to the toilet that much.
  4. “Reward them with chocolate/a sticker for every successful toilet visit.” Ahh yes the bribe. This one is interesting as Audrey had a chocolate button for a wee for a while and Rex would get one too (or face his wrath!) and now it’s his turn, he doesn’t actually seem that fussed. I suspect that off the back of Christmas-let’s-have-chocolate-everyday he doesn’t feel he has to work for it.
  5. “Put pants on with a nappy over the top.” We did actually try this one with Audrey for a bit, but she didn’t seem to care that she was wet and she got sore. I think Rex would get confused by the double.
  6. “Let them run around with nothing on their bottom half.” A great one for summertime. Rex would gladly do this, but I’m also sure he’d wee everywhere!

Part of me feels like it really doesn’t matter once both my children “nail” this toileting malarkey, another part of me feels huge pressure to get them there. Both are really great (chatty!) communicators and they are both very aware of the process of toileting (we have an open door policy!), but I am lost in the world of potty training.

This could be the secret of course; do very little and the kids get it anyway. Fingers crossed.

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.

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.