Down’s syndrome Awareness Month 2019

Whenever the Down’s syndrome awareness days/months/campaigns come around I generally feel like I’m banging on about the same old stuff, it’s all been said before and people are wondering why I’m still doing this.

I will never tire of writing about how great Audrey is and that’s a fact. Beyond that, when I try to think what the Down’s syndrome community wants to achieve with awareness campaigns, I remember why it’s important to keep banging the drum. Because surprisingly not everyone knows that people with Down’s syndrome can live a full and happy life. That they can achieve and learn and contribute to society. We may be very early in our journey (Audrey is only 6), but she is continually learning, progressing and she is full to the brim with love and kindness. She is an asset to our family, not a burden.

9 out of 10 women in the UK who receive a prenatal diagnosis of Down’s syndrome choose to abort. Would the stats skew so high if perceptions of Down’s syndrome and disability were changed?

We are (supposedly) living in a liberal and inclusive world, yet I continue to encounter those who fear disability or don’t fully understand it. Hey, I’m not perfect and I’m learning on the job, but I’ve had some uncomfortable conversations with people, even though they are aware I am the mother of a child with “special needs”:

A mother I know once chatted to me about her 10 year old daughter’s friend who is autistic; “She wants her to come for a play date and I’ve said no and I don’t know how to explain to her that we don’t know how she might react to certain things…”. I would absolutely hate to think a parent might not have Audrey for a play date through fear of her condition, I would much rather they suggested a play with me there (to see how things go) or asked me directly if she might be able to come for a play and if so, if there is anything they might need to know. In any case, a mother of a child with extra needs wouldn’t just pack them off for a play date without knowing that they will be ok. If anything, I tend to be overly protective about Audrey and her abilities, she often surprises me with what she can do independently. I wish I had said all this at the time, but I was so stunned that she was telling me this, I didn’t say anything!

Another example from a couple of years ago, I had a chat with a dad about about how fab CBeebies is at inclusion and he really didn’t get my stance, his response was along the lines of (eye rolling): “Yeah they’ll always get an ethnic kid in a wheelchair in there”, it felt very much like “the world’s gone PC mad!”. Again I wish I hadn’t stayed silent. Because every time you eye roll at a disabled child/same sex parents/family of colour shown on TV, remember that those of us represented by that “shoe-horned difference” are not eye rolling, we’ve got a fuzzy feeling inside. We get to feel like we matter enough to be included with all the “typical” families. People will start to realise that disabled people live in the real world too, with families, jobs and hobbies just like everyone else.

I am absolutely thrilled to say that Audrey is going to be in a TV advertisement over Christmas on Channel 4. I’m not even sure that the team behind it know how much it means to us and the Down’s syndrome community that she was chosen. In it, she’s a little girl opening a Christmas present. She just happens to have Down’s syndrome. And when I’m hanging around with her in a big house in London watching her being filmed it’s just another crazy thing Audrey has gotten me into! Audrey having Down’s syndrome has opened doors, not closed them!

I’ll be posting on Instagram (as usual) for Down’s syndrome awareness month. I am no expert on Down’s syndrome (medical stuff, facts about how the condition affects each person – I’ve read minimal amounts to be honest), but I’m an expert on my kid. If you’re looking for a poster girl to explain how Down’s syndrome can make you adorable, kind, thoughtful, stroppy, stubborn, loud, quiet, easy-going, challenging, clever… well Audrey is the one! If there’s one thing I’d want people to remember about Audrey or anyone with a disability; it’s quite simply that they are human. She deserves love and a chance to thrive just as much as anyone else.

 

Poster girl

Part of sharing positive moments of our life is to ensure there is a balance to what people see when it comes to life with a child with Down’s syndrome. When society tells you to “screen” for Down’s syndrome and you love someone born with DS, you want to share your experience of that love to show it’s not a negative thing that needs eradicating.

It’s because of this that sometimes when life isn’t rosy and Audrey is being a pain in public, I feel huge pressure for her to be good. I want to prove people wrong, I want to show them our life is full of fun and happiness. That said, I’m also honest, so I aim to talk about and share the tough stuff too. Unfortunately life with kids is not entirely straight-forward.

Yesterday, I wanted to go for a run, so Ted did the bedtime stories. Rex was feeling particularly clingy and as I got ready to leave the house he was crying and screaming my name, Audrey however was perfectly calm and happy, “Goodbye Mummy!” she said cheerily as she settled into her bed. Meanwhile Rex was at the kiddy gate rattling it and turning red in the face. Yet he is my “typical” child and she has “special needs”!

The day before, at the park, we arrived at our car to return home. Stood just a couple of metres away from the car door Audrey refused to walk across the long grass. Rex was calmly standing by the car, waiting to get in. Audrey was refusing to move. I was negotiating (begging), but to no avail. As I made the decision to pick her up and force her into the car, a pregnant woman walked by. I kept my head down, got the kids in the car and got ready to leave, but really I wanted to turn to her and say “She’s normally lovely!”.

The fact is, I am always nervous around pregnant women when Audrey is with me. Suddenly she is the poster girl for Down’s syndrome. She is the sole representative – a make or break impression for someone making a decision about screening and termination.

It’s not just the “bad” behaviour that concerns me, sometimes when she is quiet or seemingly not engaged, I worry about people thinking she has nothing going on in her brain. I worry they will be judging her on conversational responses (or lack of) and think she is stupid. Yet if Rex was suddenly mute at a stranger’s question, I would dismiss him as shy and move on, I wouldn’t expect him to be judged solely on that interaction.

It would be nice to say we have nothing to “prove”. She is a multifaceted human being who can be happy and sad, easy-going and stubborn, good and naughty – but sometimes the perceptions of people with Down’s syndrome put them in a box of one or the other. They are either considered to be loving, cuddly and amenable… or unpredictable, hard to control and challenging – it’s rare to think of them as having the ability to be all those things and more. Or none of those things!

What we forget when we group people together (as if they were a different species to us) – is that within the similarities there are also many differences. And stereotypes sometimes fit, but sometimes don’t. Just as not every red head is feisty and not every American is loud – people with Down’s syndrome have stuff in common, but they are individual humans.

Audrey is more polite than your average kid. She’s better at sharing than any other kid I’ve met. She’s chatty and confident, she likes to laugh but she doesn’t like to see people get covered in gunge! She works really hard at physical challenges, but can sometimes lack confidence in that area. She’s a great eater, sits at the table like a dream but can be stubborn and wants to be fed by us sometimes! She doesn’t like lots of bubbles in her bath. She settles down at bedtime to sleep very happily.

And I can tell you about her “typical” brother Rex, he isn’t great at sharing, but is excellent at climbing and running. He can be shy, but once he warms up he’s great at making friends. He’s an extremely fussy eater and likes to eat with his fingers, whilst on the move. He doesn’t mind bubbles in the bath, but will help get rid of them for Audrey. He rarely wants to go to sleep at bedtime, he wants to keep playing… they both have my long eyelashes (which I got from my mother) and they both seem to have inherited my mother’s ability to chat!

The two of them have given me a very varied experience of motherhood just by being different kids with different personalities and the fact is, at this stage, Audrey’s Down’s syndrome plays a pretty small part in what makes her different to her brother.

Those of us with children who have Down’s syndrome may feel the pressure to be the model example of how it can all be ok, but we should also be allowed to show it’s not always ok – because that’s life with any child.

 

 

We Have a Runner!

One minute you’re willing your disabled child to learn to walk, then you’re willing them to have the energy to walk to school… the next thing you know they are running off in random directions and you can’t keep up!

My beloved good girl Audrey has discovered the fabulous feeling of freedom. Of running off alone, ignoring pleas, shouts, begs, stern-voice nos… she just keeps going.

I am fully aware that this is a common trait for children with Down’s syndrome (running off). I’ve met many a parent explaining their need for reigns/buggy straps/confined spaces for safety and throughout this I’ve been able to say, “Hmm, Audrey doesn’t really do that”. However she spends a lot of time at school now and not much time outside in open spaces with just me in charge, so maybe there hasn’t been much of an opportunity for the running? Well, she is taking the opportunity now!

This school holiday has barely started and the running off is becoming an issue. There are several reasons this phase is really hitting me hard:

  1. My lack of authority is now obvious. Both children do not seem to respond to me saying no. It’s incredibly frustrating when you try to discipline your children and they either ignore you or find your stern voice hilarious. Everything feels like it is escalating to crazy threats “No more television, ever!” or that a rage builds up and I’m growling at them and dragging them by the arm. Hideous.
  2. Her special needs are now obvious. I’m definitely upset by this “special needs” trait popping up. I hate the thought of anyone seeing me run after her (shouting her name as she ignores me), thinking “That poor woman, life must be so hard with that disabled child”. I just want people to remember that any snippet you might see of anyone’s life is just that – a snippet. So yes, she is being a challenge at the moment out and about, but on that same day she also approached a crying child to check they were ok, she also sat happily and ate her ice cream whilst her typical brother ran riot in the cafe. She also settled at bedtime stroking my face telling me I’m a good girl.
  3. My ability to parent two children feels questionable. This one gets me. If I can’t take my two children out and about without having to chase after one of them, potentially abandoning the other one, then how an earth am I allowed to be their parent? It creates anxiety around every activity I plan and I’m constantly wondering how on earth other mums cope (with two or more moving children)?

Audrey and I have discussed the running off that happened (a lot) yesterday. She has said she is sorry and she knows she needs to do good listening and stay near her mummy. We’ll work on it, but I know it’s going to be hard. It feels like she is changing and I’m struggling with that. I always describe her as a child who like to play by the rules, which remains true in some respects (shoes off indoors, wearing a school uniform), but also she kind of makes up her own rules!

 

A Strong Reception

As the summer holidays are in sight and Audrey is 6 (today!) I thought it might be a good time to write about Audrey’s life at mainstream school so far, because here we are, nearly finished with her first year in reception!

I mysteriously didn’t write (even a little) blog post about Audrey turning 5 (I checked back), but here we are welcoming the big 6 at the end of her first year of mainstream primary school and we have a summer break of (hopefully) fun times ahead.

By now I am sure you know I am so proud of my beautiful, clever, friendly little girl. We have come so far since that hot July day in 2013, when she was presented to me and all I saw was Down’s syndrome. What felt like a cruel blow now feels like the best thing that ever happened to us! We’ve had a fun and exhausting weekend celebrating her birthday, she got a doll’s house, her first “Ken” doll (she has mountains of female dolls) and as always, Audrey gave us amazing feedback saying “This is my best present ever” when she saw the dolls house and eagerly introducing Ken to “her girls” (the other dolls).

So I dropped my 6 year old off at school this morning and now I can share with you my thoughts on how things have gone for us, having a child with special needs attending a mainstream setting.

I had many fears about her starting school (even with a deferral making her one of the eldest, rather than youngest in the class), but I also knew that there was a big chance Audrey would thrive in the setting. All the adults that “worked with her” (key person at nursery, therapists, inclusion service etc) would say what a sociable, outgoing child she is and that she’d have no trouble making friends and that reception was all about making friends.

My main worries were “she’ll get crushed to death” – she is small and her low muscle-tone makes it harder for her to navigate obstacles/stay on her feet when getting knocked around. I also wondered if the whole environment might just be too loud and full-on for her.

As I am slowly learning, she is often more resilient than I expect her to be.

She did indeed get knocked about a fair bit at the beginning of school. Things you couldn’t anticipate (tripping on a trolley, getting hit by a rogue ball in the playground) will simply happen in a busy school environment. It is heart-stopping to get the call that your child has had a bump to the head, but she’s survived and I think everyone is aware now that she’s a bit more fragile than some of the other kids.

We had a parents’ evening at the beginning of school and it was so uplifting. We had fantastic feedback about her settling in, making friends, being part of the class and her positive attitude (she arrives every morning saying “Good morning guys!”). Our second parents’ evening was much the same, aside from one tiny comment about how Audrey wouldn’t be reaching her Early Learning Goals. It’s not like I expected her to be performing at the top of the class of typical children, it’s just that I had forgotten that she wasn’t on the same level, I had forgotten because we are so often focused on all that she can do. You can sort of put yourself in a protective bubble, where you look at your child through rose-tinted glasses because they, to you, are perfect. This was just a reminder that our child, measured against “typical” standards is “delayed”.

Put academic measurements aside, look at the bigger picture and you’ll see Audrey attending mainstream school has been a success. She’s made brand-new friends, she’s learned how to write her name (just about), she can sound out and read all kinds of words and she can tell me details about her day. She has progressed physically and mentally just from interacting and learning alongside her typical peers.

Audrey has school lunches – this may have contributed to an improvement in her eating at home too, as she now eats lots of vegetables and is happy trying new things. She always tells me what she’s had for lunch (macaroni cheese and fish and chips are her favourites!) and explained recently that the children line up for a “squirt” before lunch; yes, I was confused at first, but when she mimed it out I realised she meant hand sanitiser! It’s tiny details like this that really show how far she has come with her communication.

The thing is, I can put myself in the position of a parent of a typical child starting reception… you learn there is a child in the class with “special needs”; they need a 1:1. Being brutally honest I do think it would have raised concerns for me. I would wonder: “Will their behaviour be challenging?”, “Will their needs affect the class as a whole?”. So I was also nervous of the the other parents and their attitudes. I wanted to be able to tell them all that they would soon see what an asset she is.

I’m hoping it didn’t take long for people to see that. Audrey’s presence in the class is not a drain on resources. It’s not a waste of time for her to be there learning with her typical peers – it’s a success story and a positive experience for all concerned. She learns through copying, so typical children propel her education and she provides them an insight into disability. She has her challenges and I’m sure sometimes the other kids wonder what on earth she’s on about(!), but also they’ll see she is kind and thoughtful and likes lots of the same stuff they do. I also like to think her 1:1s are an asset to the class because, yes, they are there specifically for her, but they will no doubt help other children when needed.

Everyone has been welcoming and Audrey has made some great friends. We’ve had birthday parties and play-dates a plenty. She’s been on school trips to the local library to see a puppet show, to the zoo, she took part in sports day, harvest festival at the church and she performed in the nativity as an angel. Audrey was recently chosen to be “Star of the Week” (along with other children), getting a certificate and a little box allowing her to take something into school for “show and tell”. My heart is filled to the brim with pride that she is taking part in all these school activities.

She does get very tired at school, she can exclaim “Not again!?” when I tell her it’s another school day, but mostly she bounds into school full of enthusiasm and bounds out ready to tell me she had so much fun.

I know that sending your child off to school can be nerve-wracking for anyone – suddenly your child is spending a lot of time with people you don’t know very well. But it didn’t take long for her to be well-known throughout the school and I have no doubt that Audrey will have many happy years at this school.

And so on to Audrey’s second year of primary school (confusingly; year one). She enters with a knowledge of the school routine, a good group of friends and her can-do attitude! But for now, a bit of summer time fun and a break from the school routine… a welcome break but also a terrifying stretch of days ahead entertaining my two active children… wish me luck!

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!

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!

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.