Written by Clare Fraser
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 with you some of the answers I gave her and some I’ve since thought about, as perhaps you too, are wondering…
#1 𝘼𝙨𝙠 𝙦𝙪𝙚𝙨𝙩𝙞𝙤𝙣𝙨 🦋
Before Willow was born, I had 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 ok, 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. And the thing is, I don’t expect you to go swimming: that’s my job! Though I would love you to come paddle with me once in a while and ask me questions about Willow, about Down syndrome. I’m sure you have some.
When you do this, you’re showing me a want to try to understand and learn more about Down syndrome, about my littlest baby, Willow.
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 to ask myself.
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, I love sharing this new-found knowledge and I love talking about my girls. So, anything that helps me, help you gain more of an understanding and acceptance about one of my girls specifically, is really so valuable to me.
So please, just ask 💕
#2 𝘽𝙚 𝙤𝙪𝙧 𝘼𝙡𝙡y 🦋
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. The hope is you’ll part with this knowledge, or more importantly, gently correct any misinformation/preconceived thoughts you hear from others when we can’t.
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.
When people aren’t privileged to know Willow; I’m asking you to speak up about her. 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 to me, 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, because now I have the knowledge of what it means.
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 offensive or 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 true knowledge and more of 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’.
So, by saying these words and talking the uncomfortable is the only way to get to the comfortable. Using person first language; ‘a baby with Down syndrome’ rather than ‘a Downs baby’ or ‘a Down syndrome baby’, will stop these embedded, hidden bias, being or feeling like a taboo. The more natural conversations will flow, and it will show you accept Willow in her entirety. It shows you don’t view her as less. 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.
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, she just isn’t able to form her words articulately yet to enable you to understand her every need.
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) 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, as well as signing ‘calm’ and then giving her time to process what’s upsetting her and 9/10 all this helps her.
I think in the moment, where words are too much, quiet voices with gentle hand movement is a quick and easy way to engage Willow, which enables her understanding and management of the situation better. Having hypotonia, manipulating her mouth is a struggle for Willow, and one that requires a lot of effort and yet she tries so hard to try and form words, and she does so well with this, yet 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.
So, if you’re her swimming teacher, ballet instructor, nursery teacher, friend or family, I’d love for you try Makaton, you’ll love it once you do!
…And if you’ve older children, you can use it to tell them off in front of their friends and their friends won’t realise and they listen to you way more – winwin! 😉
#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 the same 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.
If you’re someone who works with or is around young people or if you’re a parent – read books, articles, watch films that have a diverse range of characters and abilities. From this, have conversations with your children 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 that are broken and society can see disabled people for just that, people. Just like the rest of us. Who deserve to be spoken about with the same respect, love and kindness you would any typical person.
It’s the younger generation, our children, who are going to be the change, because they will grow from you and with you. They are going to put us to shame because they’ll, hopefully, grow up in a society that’s more knowledgeable, loving and genuinely accepting of everyone’s differences.
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 educate our youth 💕
#6 𝙏𝙝𝙚 𝙚𝙭𝙩𝙧𝙖 𝙢𝙚𝙣𝙩𝙖𝙡 𝙡𝙤𝙖𝙙 🦋
Willow is loved. Willow is accepted. Willow is a beautiful menace.
I wouldn’t have her any other way, for everything she’s brought to me and my families lives, is 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 known 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 on top of this, 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 with everyone 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 know a Mum who has children with additional needs, go kindly. Today might be a fighting day 💕