This girl can

There are two magical moments that I did not capture with a photo this holiday that shows that this girl really can.

There are plenty of moments that we don’t capture, that people don’t see but which are part of family life with Trudy.

We were recently on holiday in Balmedie, north of Aberdeen. Fifteen miles of beach which the poodle loved, and Patrick and Trudy returned to their roots to explore the sea and the sand, having grown up by the beach. Trudy ran and didn’t stop running, splashing in the waves and squeezing the wet sand between her fingers whilst our baby squirmed at the alien feeling of sand in her toes.

I’ve never seen her run so well, with solid ankles that took so long to straighten and required special boots for support, with straight legs that have become stronger and less hypotonic. She was in her element, literally.

But the moment that trumped all moments and shows how far she has come is when she tobogganed down the dunes. Yes, I said toboggan. We came across some children who were having a party in the dunes. Alex spoke to one of the dads who explained why they all had toboggans, and incidentally why there was one outside our holiday cottage. They were heading to the dunes to slide down them.

My heart was in my mouth as she ran across to the steepest dune, a good 20 metres off the ground and with a 85% gradient down to a puddle in the basin. We all stopped the consider the height, the steepness with our brains which fear and calculate risk so efficiently but stop us from ever doing anything. Trudy, all impulse, launched herself at the bottom of the dune and began to scale the heights. She scrambled against the sand until she got to the top. Meanwhile, we all started thinking she wouldnt get there, that it was impossible for a 6 year old with Down’s Syndrome to manage that. But when she did, Patrick ran up after her, Alex in tow to help her. Did she need help? Not in the slightest. She stood at the top, she managed the risk, watched her brother have a go then slid down on her bottom. Squeals of delight echoed across the dunes. She had achieved so much right then and she didn’t even need us to praise it. She was just glad she’d done what everyone else was doing

This is why this girl can, why so many underestimated young people can despite the assumptions we make based on their perceived ability. The desire to be part of a group can be strong motivation indeed to overcome the greatest of challenges.

A ‘thank you’ to a community

Almost four years ago, my friends and I decided to publish a book. It started with an innocent conversation in our local bar about a really frustrating book I had just read to Patrick, to help him come to terms with having a sister with Down’s Syndrome. I won’t mention the book to protect the identity of the author, but it was negative despite an overall positive message. The father was in tears because their baby had DS, the sister thought she would never be able to do anything with them, you get the picture. Instead of reassuring Patrick, it sparked a hundred questions that, at the time, I was not ready to answer.

My friends and I talked about a book which would encourage children not to fear difference as it is this fear which has led to so many examples of discrimination in adults. Bridget (writer and illustrator) and I had worked with people with learning disabilities of various kinds, and had experienced firsthand the type of injustice which exists because people are too quick to judge. As parents, we have also experienced the looks and the sideways glances, the uncomfortable questions. We talked about a book which accepted every stage of development. If Trudy wasn’t walking yet, it was okay. She’d get there. If she wasn’t talking, we were all learning to sign to help her on her way.

Bridget went away and wrote a poem which encapsulated everything we wanted to say. It would educate, inform, give top tips for how to explain DS to young children but, above all, present life as normal. We needed photos because we didn’t want a caricature of a child with DS taking away the authenticity of the poem. Jo (photographer) took photos of Patrick and Trudy. We spent many an afternoon trying to get them in the right position! Bridget has then spent the last few years illustrating the poem, in spite of a global pandemic and home-schooling, with beautiful scenes of Portobello, Edinburgh where our children spent the first few years of their lives.

Portobello was the town that welcomed us and took us in. It was where Trudy was born, where a good friend looked after Patrick whilst I went to the hospital with premature labour pains, only to give birth a couple of days later. It was the place that surrounded us with offers of help as we juggled life in hospital. It supported us gently as we got used to having a child who developed so slowly we didn’t know whether she would ever walk or talk. I have so many memories of Trudy shuffling up and down the prom at Portobello before she could walk, exploring the sand in the only way our little sensory being can do and dancing her heart out in her heavy-soled Piedro boots to the live music at the Big Beach Busk.

It seems perfectly fitting that this book was written and illustrated in this place where so much acceptance happened, where we learned that support can take many forms; from the lady in the jewellery shop, the man in the grocery store, Bob the butcher and the library, to name but a few. They know who they are.

So, once again, our community are coming to our aid and a local Portobello graphic designer is helping us put together the digital version of the book so that we can self-publish. On the eve of World Down’s Syndrome Day 2022 and with so much that has happened over the last two years, we celebrate achievement for people who are different and recognise the huge amount of support that families like ours have received from the doctors and nurses who kept our daughter alive to the butcher who never forgot to say hi to her.

A rare moment of sibling appreciation

There are few more precious moments than when a brother says openly and unreservedly how much he loves his sister. These statements don’t come easily so I’d better write this one down!

We have been on holiday this week and it has been a great opportunity for Patrick and Trudy to play together and discover each other again, along with their baby sister.

Playing with Trudy can be frustrating because she is hugely repetitive. She gets hold of an idea then clings to it like a limpet until it’s fully assimilated in her brain. This is much like most children but with Trudy, this process is longer. Trudy will repeat the same role-play with anything; cars, dolls, fruit, pebbles, you name it.

It goes something like this: “Hi, what’s your name?” “Car [or pebble depending on the object” “Play?” “Okay” “Park?”

It is pretty brief but, looking at this on paper, it seems to cover all the basic elements of a friendly interaction: greeting, question, invitation to play.

We all went slightly mad with Trudy’s monologue at the river which required some response from us. That went something like this: “Daddy, look!” “What’s that, Trudy?” “A potato. No, daddy, not a potato. A rock!” She must have said that at least 20 times when we were throwing stones in the river, or was she throwing potatoes? Who knows! It was funny the first time but the humour wore off as we had already heard the punch line!

For Patrick, he’s got to be patient, he’s got to be understanding, he’s got to care about the safety and well-being of his little sister ALL the time because we rarely take our eyes off her.

But there are those wonderful moments when Trudy transfers her play to the real world and asks every passer-by “what’s your name?”, and she will invariably get the reply “what’s yours?”.

We have met Steve and Rob who were walking to Ribbleshead, Mowgli the dog, whose owners have a narrow boat in Skipton, Glynn who was going up Buckden Pike the wrong way. I could go on.

Trudy inspires friendships and pushes interactions you might never have without her and there is a silent recognition from us all that we owe these to her.

So in one brief moment, Patrick, with his ability to get straight to the heart of the matter, stated quite plainly and unprompted that he likes his sister’s Down’s Syndrome, that Trudy wouldn’t be Trudy without it.

Her ‘condition’ was not something he wanted to take away, he wasn’t wishing for something else unattainable. He was grateful for it. I’d like to say that he was grateful for the confidence it brought her, for her eminent likeability because we were all benefitting from it.

So let me savour this moment, describe it, document it, relish it, because some days are tough and these precious moments of gratitude are hard won but worth every battle.

What is disabling our daughter?

It is a powerful word, ‘disabling’. By its own definition, it would mean that someone who is ‘disabled’ lacks the ability to do anything. That is quite a frightening prospect for anyone.

But it is the process of ‘disabling’ which really interests me. Someone or something must have been the source of the disability. Is it the condition itself that forces the person in a wheelchair, or the rampless bus which the person can’t board, or is it the people who stare at the limbless man, the almond eyes, the slurred speech? What or who is disabling?

Our daughter, Trudy, had low muscle tone when she was younger, a condition associated with that extra chromosome which keeps rearing its ugly head. She couldn’t sit in standard wooden high chairs (popular in restaurants and pubs) without sliding through it like jelly and there was no chance we were going to feed her safely. So, we had to phone ahead to make sure that they had a plastic high chair with a cushioned insert and a bar between the legs. These were specific requests but, if they didn’t have one, we couldn’t go.

Trudy wanted to start gymnastics but we had to get a letter from her paediatrician to say that it was safe for her (appointments with paediatricians are not easy to get). She wanted to do dance classes but she had to wear tap shoes. Has anyone tried to get a hypotonic ankle into a tap shoe?! We started swimming lessons but the instructor said that we couldn’t go in with her because she was in the higher age group. I stated quite politely that she would drown if we didn’t go in with her. Needless to say, he let me in then. And then there’s childcare. We can’t just send Trudy to a holiday camp or a babysitter without having an in-depth conversation first in which we dissect and analyse Trudy’s needs.

Some of these things have to be in place to make sure our daughter is safe, like the paediatrician’s letter and the pre-activity chats. But the smart-looking high chair that doesn’t support the baby or indeed the backless swing at the park lead us to a swift conclusion: We can’t go out.

We can’t go to the playground because our child will just have to sit there watching the other children play, and that’s not fair. Have you ever wondered why there are few disabled people in parks? Lack of accessible equipment is a major factor.

We can’t go to the cafe because they don’t have the right equipment to feed our child safely.

We can’t go to that concert because our children can’t queue or stand the noise.

Or very sadly, we can’t go out because they’ll stare.

So, what is disabling our daughter? Well, it’s a combination of things. Her Down’s Syndrome prevents her from understanding, which means basic excursions are a challenge. The wrong equipment or the crowded places are an issue. But for the people who stare, who don’t understand that she is finding it difficult to wait or really doesn’t want to move, well, they’ve really no excuse in my opinion.

A person feels disabled when they can’t access the most basic of places such as the bus or the shops. So the buses have ramps and the shops have wheelchair-friendly trolleys, but not always. Blue badge users can park closer to shops but, who hasn’t been guilty of parking in a disabled spot when in a hurry?

A person feels disabled when there are too many barriers to doing what they want to do, like dance or gymnastics or swimming. Parents give up because there are just too many forms to fill in and nobody seems to read them anyway.

A person feels disabled when normal avenues are not available to them such as mainstream education or employment. Children are turned away from schools because they will be ‘detrimental to other children’*. Adults can’t get jobs because it requires just too much effort to adapt the workplace for a wheelchair user or a person with learning difficulties.

There is some great work out there and some great legislation around disability rights but, perhaps if we started considering the possibility that people are not ‘disabled’ but ‘enabled’, we might not assume what they can’t achieve and start concentrating on what they can.

*Standards in Scottish Schools Act, 2000

What would Trudy do?

Four years ago, I started writing this blog because of Patrick, Trudy’s big brother. Because seeing Trudy through his eyes meant that we saw the girl and not the disability. He helped us to understand what we needed to do to accept our little girl.

Today, he said something which summed this all up. It reminded me of why blogging about him and his journey was as important as documenting ours and hers.

Patrick really wanted to try Taekwondo and I’d booked a trial lesson for him. We were heading that way when he told me he was nervous. He said that he wasn’t like Trudy, that he couldn’t just go up to people he doesn’t know and talk to them.

In that instant, he recognised one of Trudy’s main strengths, the strength to go through life not giving a damn about what people think of you, the confidence to initiate a conversation (albeit in her own way) and the lack of judgement to talk to absolutely anyone.

We talk a lot about what Trudy can’t do because we are constantly assessing her support. We help her every day with whatever she needs. We have to put things in place with regard to her independence, her education, her health and her well-being to make sure that she lives a full and happy life.

But this little gem of observation, this wee reminder that Trudy has something that WE might need flipped everything on its head. What if we learned from people like Trudy? What if they were here to teach us something, about ourselves, about each other and about the world we want to live in?

When my husband and I went to see a band together, everyone was seated and there was nowhere to dance. It was such a shame as the music was so good! I remember thinking ‘what would Trudy do?’ and we got up and danced like noone was watching in the space next to the fire exit!

So, maybe next time, when you’re doubting whether you should talk to that person, dance to that song or start that new club, think ‘what would Trudy do’!

Why do I feel like I have to say ‘thank you’?

It’s the same feeling everywhere I go, at the park, at the pool, in cafes or at the supermarket.

If someone is nice to our daughter, doesn’t walk away, lets their children play with her or lets her take everything off the shelves in Tescos, I feel inclined to say ‘thank you’.

Thank you for allowing her to be herself, thank you for making my life easier, thank you for including her in your games.

Trudy is heading for her first year of primary school and I find myself feeling incredibly grateful that her mainstream school will accept her. Despite the reams and reams of legislation and rights-based discourse that I know like the back of my hand, I still want to say ‘thank you’.

Why is that? Is it because I know too much about what has gone before, when people with disabilities were shut away, disabled and disempowered? Is it because there are thousands of cases across the UK where children with learning disabilities are still not accepted into mainstream on the misguided assumption that they will be ‘detrimental to their peers’? Or, if they are accepted, it is with reluctance and lack of understanding. A child with DS was wearing a hi-viz jacket in one mainstream school because he was a flight risk. He may as well have ‘watch out for me’ written all over him, and not in a good way.

We are so eminently glad that Trudy’s rights to an equitable education are being upheld but I wonder when we are going to stop feeling grateful. Grateful for the opportunity to be part of society when her brother just is. Grateful for the chance to learn with and from her peers. Grateful to have peers.

I’ll remember to write again when I no longer need to say ‘thank you’, when her journey to acceptance is not shrouded in worry and doubt. Let’s hope this and so many other stories end well, that our children grow up as integral parts of our diverse and rich communities of people.

How a typical child develops (from observation, experience and a little background knowledge!)

Watching a typical child develop is a bittersweet reminder of how Trudy’s development differed and differs.

Trudy and Patrick now have a little sister, a lockdown baby who has never seen anyone except her immediate family and grandparents, and knows her buggy much better than her car seat!

I watch her develop every day, learning to gain command of her limbs, the cogs in her typical brain turning to bang and hit and grasp her toys. She moves her body to discover what she can and can’t do, and what she still needs to learn.

It reminds me of Trudy’s first years, a floppy, hypotonic baby whose brain struggled to process everything at the same time. She would babble away (because Trudy loves to chat), but her physical development would stall.

She sat up on her own at 1, stood up independently at 2 and a half and walked at 3. Trudy is 5 now and she’s running.

Her baby sister will probably crawl before she’s 1 and be walking before 2.

And this is not that large a gap compared to some children but it reminds us of the difference between the way Trudy learns and how she will never follow a typical development pattern.

Trudy’s sister will learn through osmosis, through a combination of watching and learning, her innate faculties processing every little thing subconsciously then acting upon them with conscious and deliberate movement. She bangs herself on the head with a toy, she does it a second time and then doesn’t do it again.

A typical brain will absorb the concept of consequences much more easily than a child with learning difficulties, even if the child hasn’t experienced the consequence, so that the typical child will not wander far from home or run across a car park.

Most consequences we talk about are largely linguistic in that respect, “don’t climb too high or you’ll fall”, “don’t run across the road or you’ll get run over”, “don’t put your fingers in the fire or you’ll get burnt”. You say something like that to Trudy and all she hears is “put your fingers in the fire”!

Trudy will always need support to understand what she should and shouldn’t do, but with the right use of language, she can begin to process the world on a subconscious level, to inherently learn to be safe and independent of us.

There is research happening all the time on how to develop our young people’s independent living skills and ultimately make them less vulnerable. To make them safe, healthy and happy: Such simple aims to which we all have a right, and it should never be forgotten that some of us have the natural privilege to be.

How our daughter with Down’s Syndrome changed my outlook

As I lay in the bath (yes, hear me out..), I watched the little islands of bubbles attach themselves to each other, and I was reminded of how simply a life and lives can be altered when just one chromosome decides not to divide. It’s amazing what you think of in the bath!

The process is called meiosis, from the Greek meaning ‘lessening’ and I love to know the origins of words! During meiosis, cells divide to produce gametes which can be the sperm or the egg. The egg contains unpaired chromosomes in its nucleus and these pair ever so romantically with the matching chromosome in the sperm to form a typically developing embryo.

Down’s Syndrome occurs when the 21st chromosome fails to separate in either the egg or the sperm, and approaches the encounter as a pair already, creating three 21st chromosomes. And we all know three is a crowd…

Like the bubbles in the bath clinging to each other, those 21st chromosomes had refused to divide and, from its conception, had created an imbalance in the egg that would turn into a child who would never develop in any typical way but grow uniquely and surprisingly. She would carry the traits of a child with Down’s Syndrome; the low-set ears, the flat nose and the almond shaped eyes. She would take her time to learn to walk and find it difficult to use language, although she would be sensitive to tone and intonation like nobody else I know.

This one random event in the development of an embryo has distorted the development of a life and affected us in ways I would never have imagined.

Being the parent of Trudy has its challenges but having her has changed me for the better.

First of all, there is writing. I used to write for writing’s sake, creative pieces and lots of nonsense, and now I have a reason to write.

Academic achievement has always been important to me and I would always want the same for our children because I have derived so much pleasure from study and learning. But what happens when an academic path is not available to one of our children? Having Trudy has forced me to reevaluate not only what is important for her but also what is important for all our children. And learning does not only occur in academia. The pleasures and small joys of life like sitting around the dinner table with family or friends, learning from them and learning from the great environment around us are enough to allow us to live full and contented lives, and isn’t this what we are all striving for?

I realised today that I had high hopes for our children. I want them to make great change, to affect other people’s lives in unique and interesting ways. And you don’t necessarily need degrees to do that!

Trudy may not learn to write extensive essays or solve multiple equations, but she will, with our help and support, learn to be a genuine part of society, earning her own money and living as independently as is possible.

Despite some confidence now, I was always quite shy as a girl and the prospect of having a child who makes the most noise in the playground, who talks to anyone and everyone, who wears her condition so unashamedly on her face and in her mannerisms, would have filled me with dread.

So, has this one random event of chromosomal nondivision made me a better person, a better mother? Well, I think it has.

I have more manageable expectations of our children, of myself. I take pride in the smallest of achievements and don’t sweat the small stuff. I revel in her uniqueness and our uniqueness as a family as a consequence.

These children and people are indeed ‘special’ but not for reasons of difference or impaired ability, but because they impact our lives in ways nobody else does. They force us to challenge fastheld opinions about how we should and shouldn’t behave and change our lives for the better.

We all know how Down’s Syndrome (Trisomy 21) occurs but nobody knows why. I’m not sure if these things happen for a reason but we make the best of our situation and sometimes what seems devastating at a time can be turned to an advantage.

Being Trudy’s brother

What are you thinking when we say, ‘We get it. We understand’? Do you think we do? We probably don’t get it. What parent does? How can we possibly begin to understand what it’s like to have a sibling with Down’s Syndrome when we have never experienced it ourselves?

I know it’s confusing when we ask you to help her then we tell you off for doing too much. When we demand that you take her to the toilet and then yell at you for pulling her trousers down when she’s screaming at you. Because she just wants to do that bit herself. When we ask you to help her with the iPad then tell you off for answering the questions because we won’t ever know what she understands otherwise.

Trudy needs, above all, to learn to be independent but sometimes she needs some support to get there. We know that, but do you? Do you know why we appear totally contradictory at times? Can we expect you to understand the fine line between helping and doing things for her?

You’ve been stuck with your sister in lockdown for what seems an age now, and we keep saying that at least you have a playmate. But does it sometimes seem infuriating that she isn’t exactly the playmate you would have wanted? I am sure most siblings across the country feel like that.

But just as you might be thinking, wishing you could see your own friends again, Trudy comes down the stairs in your pants or dresses up in the bear’s sunglasses with an army hat on and a hi-viz jacket, and we all burst out laughing. Or when her feet join us at the dinner table as if there were another person hiding under her chair. Trudy is hilarious and undoubtedly the most unpredictable human being I know. She is a creature of impulse, licking the snow to see how it tastes, digging it up with a spade because that’s what we do with sand, don’t we? She plays endless games of hide and seek with anything she can find, toys, people, dinosaurs, or cafes with leaves and twigs on anything she can sit on.

We try to understand but we probably won’t. Life with Trudy is like no other life just as you can’t compare an apple with a pear or a life with any other, but it’s a crazy whirlwind of spontaneity and imagination. We can’t choose our family but each member of it offers an angle we would never achieve by ourselves and our lives would now be incomplete without them. So, we don’t ask you to be grateful because you’re 7 but bear with us as we try to offer the best possible life to you both.

Your mum and dad

Are we living in a risk-averse world?

There has recently been a resurgence of discussion around pre-natal screening for Down’s Syndrome because of Heidi Crowter’s current case at the High Court, defending the lives of people with Down’s Syndrome and their rights to equal opportunities before birth. 

As you know, I was shocked and appalled to learn that one of our children’s lives was valued more highly than the other when we had the option to terminate Trudy up to 39 weeks and Patrick not after 24.  This is not a discussion about abortion rights or whether we, as parents, are pro-choice for women, but rather a discussion about equality and discrimination when we presume to inhabit a progressive world which is committed to the inclusion of people with disabilities.

It has forced me to reflect on our current situation with Covid-19 and how we are so eager to eliminate risk to such an extent that we would be prepared to terminate the life of an unborn child on the basis that that life carries too great a risk.  My question would be and always has been: ‘what risk is that exactly?’ True – from a scientific perspective, children with Down’s Syndrome carry greater ‘risk’ of contracting Leukaemia for example, of being coelic, of suffering from respiratory or heart defects. Our child doesn’t have the genetic markers for Leukaemia (yes, they check for that) or coeliac and she does not have a heart defect. Yet, we would have potentially deprived ourselves of this joy of a girl on the grounds that she could have contracted one of these life-threatening conditions. Patrick also carries a risk: a risk of heart disease, of contracting cancer, of suffering from mental or general ill health. We all carry risk to a greater or lesser extent depending on who we are and where we come from. Despite our best efforts, we will never be in a position to eliminate this entirely.

It seems to me that this law which allows us the freedom to terminate the life of an unborn child at 39 weeks is merely giving us the feeling that we are exerting some kind of control over the uncertainty of having a child with a disability. Just as we do in teaching when we complete risk assessments, we acknowledge the risk and then put in control measures to mitigate at least some element of that.

Isn’t this what we are doing in our response to Covid-19 – a million and one rules for different regions, settings and people to mitigate the risks of catching it? We are trying our best to ‘control the virus’. I am, in equal measure, committed to protecting the lives of our most vulnerable but, despite my better judgement, I am wondering how much of this virus can be controlled when I think back to how much I could control when our midwife placed our little girl in our arms and told us she had Down’s Syndrome. By putting all these control measures in place, we are mitigating the risk of the virus spreading.  A noble cause and one which is appropriate to the context as our individual actions have huge consequence on society as a whole. Or are those in power merely protecting themselves from reproach so that they can hold their head up high and think ‘we did our best to “save lives”’, or was that to reduce the risk of death?

By actively encouraging terminations of children with disabilities through legislation as well as practice, we can content ourselves with the thought that we are also reducing the risk of premature or unnecessary death. What we are really doing is altering the statistics to suit our model: the fewer people with disabilities = the fewer cases of serious illness or premature death = the better our lives? It is just like kicking the naughty kid out of school so that the exam results look better and, believe me, that happens!

By no means do I wish to advocate a Churchillian response or indeed Trumpian response to the pandemic by saying that we should all just get over it and stop being so risk-averse. The 21st century is in no way comparable to a world war context when science and medicine was not half as advanced as it is now. With greater knowledge and progress, we are burdened with the desire to eliminate risk. We must not allow the figures to remain as they are: People must live longer, there must be fewer deaths and people cannot get ill. In education, children must not fail, there should be no difference between an affluent family and a disadvantaged family, pass rates should improve. But what are we going to do when pass rates are at 100%? How will we measure our children then? How do we choose who moves on in academia and who follows a different path? Failure often leads us in a much more appropriate and satisfying direction. What are we losing through the avoidance of risk and failure?

As much as I am the first person to want to exert some control over the situations I face, having a child with a disability has taught me so much about what I can realistically achieve and the satisfaction I can get in just getting by.  I wonder how long we can live in our risk-averse world whilst we slowly lose our ability to cope with uncertainty and situations that are out of our control. A GP friend of mine recently said that the only thing we really know for certain about Covid-19 is that the future is uncertain, despite our best efforts to understand it. Our wonderful health practitioners are on the frontline just doing what they can to protect lives with the weight of accountability on their shoulders. That should be enough for us right now and I leave you with this, written in my diary at a conference by Heidi Crowter herself: “Hiya Lauren! Stay happy and always look on the bright side!” No simpler but truer words have ever been said.