Mum's Down Syndrome Day story

Today is World Down Syndrome Day 2023 and please read this wonderful blog by mum Clare.

Her daughter Willow, who has Down Syndrome, recently got to meet Keri Fickling, SAS Macmillan Clinical Effectiveness Lead North, and given a tour in one of our ambulances.

Read Clare's and Willow's story below;

What can I do better?

In the summer, my wonderful sister-in-law asked me a question no one had ever asked me before.

She said, “What can I do better?”

It was a question that moved me more than I’d realised, and I thought I’d share some of the answers I gave her and some I’ve since thought about, as perhaps being in the healthcare profession, you too, are wondering…

#1 𝘼𝙨𝙠 𝙦𝙪𝙚𝙨𝙩𝙞𝙤𝙣𝙨 🦋

Before Willow was born, I had a very limited understanding about what having Down Syndrome meant. I mean, is it even Down’s Syndrome or Down Syndrome?! (As it turns both are correct and allowed, I tend to omit the ‘s, which is just my preference!) And suddenly, I found myself diving into an unknown and beautiful world, swimming around learning as much as I can.

I know that’s because I’m in it. Down Syndrome was now in our everyday life because I love and live with someone who has Down Syndrome. So naturally, I want to soak up as much knowledge and understanding as I can. The thing is, I don’t expect you to go swimming: that’s my job!

However, don’t be afraid to ask questions to the patient, or about your patient. Don’t be afraid to ask in case you feel it’s silly - it’s not, I’m sure they’re questions I asked too, and it might be something I haven’t thought of and may be relevant for your medical knowledge. and therefore, be helpful to you for their treatment. Don’t worry you’ll offend me - you won’t, I’ve a thick skin and I’m pretty sure I still don’t get things right; I’m trying though and that’s all I can ask of you.

The reality is, this will show them, the parents or care givers that you’re genuinely interested in learning and understanding them or their child; to enable them to get the best – and right – care. This will really mean a lot and actually, will force them or their parents/care givers to calm down a little more in a potentially scary situation, as they’re talking about something they’re an expert in.

So, ask us and tell us you want to know as much as you can to help them or their child, as anything that helps you gain more of an understanding and acceptance about the individual patient, and Down Syndrome, is really so valuable.

So please, just ask 💕

#2 𝘽𝙚 𝙤𝙪𝙧 𝘼𝙡𝙡𝙞𝙚 🦋

Once you ask the questions, you’ll, hopefully, have more confidence in your knowledge about Down Syndrome. Having this knowledge is like having the key to a magical world you didn’t know existed, and beyond, and wonder why you weren’t part of it before. Knowing what you know, seeing things from a different perspective, now gives you the gift to pass it on and remember each person walking into your ambulance, or your ward, are individuals in their own right. The hope is you’ll part with this knowledge, or more importantly, gently correct any misinformation/preconceived thoughts you hear from other patient, colleagues and other healthcare professionals, when we can’t.

Bluntly, when I’m not there; I’m asking you to speak up for Willow.

When people, well intended or otherwise, are derogatory/say something you now know to be outdated about people with Down Syndrome or disabilities; I’m asking you to speak up for Willow. The more you do this, the more naturally you too, will speak about people with Down Syndrome and with disabilities.

When people aren’t privileged to know Willow tell them about her and how life isn’t all about getting to a set destination, it’s about the journey getting there. It’s about slowing down, seeing the little things and celebrating each and every one of them, however different it may seem. It’s the journey.

The wonderful, marvellous, funny, intense, rollercoaster of a journey.

And we need you to ride it with us 💕

#3 𝙎𝙖𝙮 𝙞t

I feel there have been times when people are scared to say the words ‘Down Syndrome’ and ‘disability’ out loud. For me, speaking of Willow’s diagnosis to us is pretty important. Not to say this is to be in every conversation, because it doesn’t define her, yet having a conversation and hearing you saying the words, ‘Down Syndrome’ and ‘disability’ actually means a lot, and I’ll tell you why.

The word ‘disabled/disability’ has a stigma attached to it. Negative connotations. I get it, I had it too. I didn’t see that Willow had a disability either, so I didn’t like to use the word. However, now I know better.

The word ‘disability’ means; ‘a physical or mental condition that limits a person’s movements, senses or activities’.

Now I understand she does have a disability and it’s not a dirty word to use; it’s not offensive or an embarrassment. Having Down Syndrome is not something to be feared. Having a disability is not something to be embarrassed about. I think for me, it was more to do with a lack of understanding and a subconscious bias that our abled society has towards being disabled. It’s not anything about the actual person having a disability, it’s more how society view disabilities as ‘less’. Remember, go kindly towards people and families with Down Syndrome because their experience of this world will be very different to yours.

So, by saying these words, and always using person first language; ‘a baby with Down Syndrome’ rather than, ‘they’ve Downs’ or ‘a Downs baby/man’ or ‘a Down Syndrome baby/adult’, it will stop being or feeling like a taboo. The more natural it’ll flow in conversations and it will show you accept Willow in her entirety. It shows you don’t view her as less which means she’ll be treated as a person, not purely a person who has Down Syndrome. It shows a willing to learn, to understand and to love her wholeheartedly, for everything she is. For all the different, wonderful, magical and mischievous things that make her Willow.

Please don’t be afraid. Be brave and say the words and say it correctly.

It would mean a lot. 💕

#4 𝙈𝙖𝙠𝙖𝙩𝙤𝙣 🦋

From the day Willow was born, I used Makaton with her. Makaton is a way to communicate using sign and speech. It’s different to BSL, although some signs can overlap, the difference is Willow is able to hear and speak, she just isn’t able to form her words articulately yet to enable you to understand her needs.

I look at Makaton like giving a summary because you sign the key words while speaking the sentence. Makaton has helped Willow out of tricky situations so many times (like getting the flu vaccine up her nose and we practiced signing certain signs) where she could, understandably, have become over stimulated and lost control. Instead, she either signed her need, or I signed to her asking if this is what she needed and I could tell from her response if I was correct or not, using ‘when’ and ‘then’ signs really support her too and 9/10 all this helps her.

I think when something has happened, and a person with Down Syndrome and their family have found themselves in the back of your ambulance or on your ward, in the moment, where words are too much, emotions are high, quiet voices with gentle hand movement is a quick and easy way to engage, which enables understanding and management of the situation better. You don’t have to know a lot of signs, just the basic things – and the sign chocolate and teddy, that’s always an ice breaker!

Having hypertonia, Willow struggles to manipulate her mouth and tries so hard to try and form words, and she does so well, and for now, we rely heavily on Makaton. To understand how she feels, imagine you had a mouth full of marshmallows, and tried to communicate a need, or had a pain somewhere and the person you were communicating with didn’t understand what you were saying. How frustrated would you feel? How sad would you feel? How angry would you feel?

Now imagine those marshmallows still in your mouth but you had a tool you could use - Makaton. And imagine you used Makaton to sign your need or to express a pain, and now imagine the person you’re communicating with understands you and helps you straight away. How heard would you feel? How relieved and happy would you feel? How included would you feel?

This is why when I see people making the effort to learn a few basic Makaton signs for Willow, it really makes my heart swell. Because I know they’re learning it for her to understand you, and you her. I know you’re learning it because you want her to feel heard. And all this shows me you value her and want her to feel included. This alone, in an emergency room, is so powerful and it makes you feel so relieved and not alone.

Learn Makaton; print out signs, put them up in the back of your ambulance, in your emergency rooms, in the wards, in a book for people to point at and communicate their pain and needs. Doing this, you will find you actually are helping more people than you know.

#5 𝙀𝙙𝙪𝙘𝙖𝙩𝙚 𝙔𝙤𝙪𝙧𝙨𝙚𝙡𝙛 🦋

As mentioned already, we need you to be our allies. We need you to inform and guide those that don’t know. And it doesn’t stop there. Help us break the stigma about Down Syndrome, help us stop assumptions and categorising all people with Down Syndrome under one umbrella. Encourage every person to be seen and treated as an individual first.

So, if you’re a professional working with Willow; do the research. Educate and learn more about Down Syndrome so you can use your professional judgement with up-to-date knowledge. Don’t just assume – read the books, the articles and watch films that have a diverse range of characters and abilities. Ask the patient or families if they’re ok with the siren going on, or if it’s more helpful to leave it off. A few sensory toys that sparkle and swirl to help calm their bodies, as well as dimming the lights and having a soft cuddly teddy or doll is always a winner.

From this, have conversations with your colleagues about disabilities, about difference, because the more we talk about it, the less awkward and embarrassed people (adults) become and more importantly, the more knowledgeable you become. The more barriers are broken and society can see disabled people for just that; people. Just like the rest of us. Who deserve to be spoken to and about with the same respect, love and kindness you would any typical person that you treat.

And growing up in that society can only lead to people being confident to be their true selves; with no judgement.

But it starts with you.

Educate yourself, so you can provide the best possible care. 💕

#6 𝙏𝙝𝙚 𝙚𝙭𝙩𝙧𝙖 𝙢𝙚𝙣𝙩𝙖𝙡 𝙡𝙤𝙖𝙙 🦋

Willow is loved. Willow is accepted. Willow is also a beautiful menace!

I wouldn’t have her any other way, for everything she’s brought to me and my families lives, is truly a magical gift. If you just watch her, you’ll learn so much from her ✨

And yet I won’t lie, the mental load of living in a society with a child with a disability, is hard going. Not the mental load of Willow (mind you, she is such a rascal!) or Down Syndrome, it’s the constant being ‘on it’ and the constant ‘fight’ with professionals, with the public, with the government and with a society who aren’t fully embracing, or equipped, for my third daughter in the way they are for my big two, typically abled, daughters.

I’m constantly aware of the ‘just incase’ scenarios. The, ‘what if someone says something’; ‘what if they don’t’; situations that may occur and everything in between. It’s a heightened awareness I would never have know before. And some may say I don’t need to be that way, and to you I say I feel I have to be, because I have to be ready ‘just incase’.

I have to have responses ‘just incase’. And I have the ensure these responses are kind, empathetic and understanding because my usual Mumma Bear role has jumped tenfold into this new and adapted Mumma Bear role where people will accuse you of ‘going on’ or ‘preaching’ or being ‘over sensitive and anxious’ so it’s important I try hard to get the right balance of correcting kindly - even if that person is being a dick. And it can be exhausting. Some days more so than others.

What I’m trying to say is, because my love for my daughter is deeply everlasting, because I absolutely wouldn’t change her for the world, and just because I love sharing her and her antics to show what our lovely lives with Down Syndrome look like, doesn’t mean the additional societal load isn’t heavy.

And sometimes, it’s nice for people to see this part. Because sometimes, it’s a lot.

So if you are treating a patient with Down Syndrome, know when they, or their parent or care-giver tell you something, please respectfully listen, and take it on board. They are their child’s expert.

And when you reply, go kindly, go with thought. Today might be a fighting day and they need you on their side.