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.

What If?

What if children had time to spend with their family? What if there was no one else to play with, and they had to turn to whoever lived in their house – parent, carer, uncle, aunt, brother, sister?  Do you think they would learn to be nicer, more adaptable, recognise their emotions more easily, or just be kind because they have to? What happens when we remove their social network and give them their family?  Do family bonds become stronger or does it all just fall apart?

What if children were given the time to play, to stop when something intrigues them, like a moth or a butterfly?  To get involved with mud on a wet day, or splash in puddles?  Do you think they would start to create worlds of mud, or make chocolate cake and coffee out of sand and water?  Do you think they would make potions or perfume out of crushed flower petals, just to give to mummy if they were provided with a few old rusty pans and kettles?

What if children were allowed to get bored, not to resort to tablets or TV but to get genuinely bored?  Would they read books, and pretend they were Dick Whittington off on an adventure?  Or Indiana Jones hacking his way through long grass to find treasure? 

Would they have fun?  And I don’t mean playing tig on a playground made of tarmac with lines for hopscotch.  I mean getting their old clothes on and going down a slide that is soaking with rain.  I mean running around the garden butt naked, jumping through a sprinkler.  I mean splashing so hard that the mud reaches their face.  I mean putting the music up so loud and dancing in the kitchen like no one is watching.  Because no one is.  I mean experimenting with flour and water and blue colouring, just to see what happens.  I mean climbing a tree or balancing on a log or eating marshmallows over a fire in the woods.

What if children were given the chance to see what has to happen in a house? All the chores, the tidying, the cleaning, the washing, the cooking.  What if they were enlisted to help, and they learned those all important life skills that, dare I say it, may be more important than learning French (and I’m a French teacher!). 

Lockdown due to Covid-19 has not only given us a chance to develop our relationships with our families, to play, have fun and help, but also for children to be children.  It has given us opportunities to mix age groups, to explore the outdoors, to get creative, to get bored.

Our daughter has Down’s Syndrome and has thrived in lockdown because the pressure is off her to learn in the traditional way, sat down in front of a teacher, looking at a board she can’t see and listening to language she doesn’t understand.  Our daughter is learning through play, through seeing her big brother attempt things she didn’t know she could do, like crawl through a tunnel or into a bush, or climb a ladder into a treehouse.  She has been given the time to learn how to dress herself, to get in and out of a bath and to use a knife and fork because we have sat at a table and eaten with her 3 times a day.

We recognise that this has not been the case for many families in the UK and beyond. In fact, we are likely to be the exception rather than the rule. The very definition of ‘additional support needs (ASN)’ is that our children need more support and parents can’t leave their children alone to work independently without the support and sometime specialist support of an adult or health professional. Many of our families have not had access to this because of public health measures and the risk to their own children’s health.   

Nevertheless, we would hope that some good has come out of this and that our schools can adapt to what we have learned in lockdown. They can see the benefits of spending time outside in a natural environment and how this can improve a child’s health and well-being. They can see the advantages of focusing on life skills within the curriculum so that every child knows how to handle flour and water or knows the shape of an egg.  They can see how they could adapt their teaching to genuinely include children with additional support needs by giving them time to play and develop social skills and for other children to develop empathy and kindness. 

According to Angela Morgan’s review in Scotland this year, children with ASN now make up 30% of the population in Scottish schools.  Support for Learning teachers should be sat at meetings and given due consideration in decision making when we return to school. It is time that we start understanding how we can adapt to our children’s individual needs and not how they should adapt to us, particularly when every household in the UK and beyond will have had their own, unique experience of lockdown depending on their circumstances, fears, achievements, losses and gains.  It is more important than ever that education is responsive, child-led and focused on health and well-being rather than league tables and numbers.

  

Being a parent

I’ve been thinking a lot recently about what it is like to be a parent of a child with a disability, as I am preparing a talk for the staff at my school about this. It’s a tough one, because most of the time we don’t see our child as having a disability, and it is hard to remember what it was like before we had her. I’m not sure the two different versions of me are even comparable. I’ve changed, Alex has changed and I’m sure to an extent her brother has changed in his 5 years. We have all adapted to life with Trudy and it is hard to be explicit about that.

As I say in my talk, I do not seek to represent the views of other parents as we all look at things in different ways, much like our children! I am also presenting this caveat here, although I would be so pleased if this post goes some way to supporting other parents’ voices. This is because I see myself in many of the parents I work with, in their strength to stay calm when things are not going their way, strength to stand up for their child when they do not have a voice and strength to keep going when the odds are against them. I see their extraordinary capacity to listen and learn when professionals use big words they’ve never heard before, and I see the day they start using those words themselves, forgetting they once never knew what they meant.

I don’t see myself as any different to how I was before but I know I have changed because I see myself in them. I recognise their elation at the slightest progress, and their pain and frustration at having to fight again. I know our story has changed me fundamentally into the person and professional I am today.

So, I will attempt to describe what it is like to be Trudy’s mum. There are crucially two different journeys that we have taken in having Trudy: The first is having a sick baby, and the second is managing and accepting a diagnosis.

Having a sick baby was tough, devastatingly traumatic and has long-lasting effects on how we manage as a family even now. The first and most traumatic event in my experience was not bringing my baby home. It is still difficult for me to hear of parents that get to bring their baby home. Both our children were on the neonatal ward and Trudy needed an ambulance. I won’t let my children make nee-naw noises or spot an ambulance now without acknowledging that there is a sick person inside. Nothing prepares you for blue lights.

There were lots of people involved in her care at the beginning and lots of people always talking around us, sometimes to us but not always. It felt intrusive, chaotic and I felt a huge loss of control.

Then there was the worry, the worry that things weren’t going to turn out well as we saw patient after patient being discharged. Then the day came that we were discharged, but that worry never left us. It became a different worry, a worry that it could happen again. And it did for the first year of Trudy’s life.

Her health has got much better since then as her little body has learned how to fight infections.

The second journey is managing and accepting a diagnosis, and we may not be fully there. I mentioned the poem by Emily Kingsley, ‘Welcome to Holland’ in my last post. This resonated with me.

So, the first part of this journey was accepting that it was difficult to go to ‘normal’ baby groups. There were too many looks and questions that I just wasn’t ready for. I remember one group where we went around the circle and mums spoke about their babies and the issues they were having with sleep. I had just got out of hospital with Trudy. Sleep was the least of my worries. And Trudy couldn’t do what other children could do at the same age. It was too easy to compare Trudy with other children in the beginning. I hadn’t accepted that she was different.

Then professionals would turn up at our door and they had jobs I never knew anything about. This felt intrusive and it took up time, coordinating appointments and making sure Trudy wasn’t too sleepy. We had endless letters in the post. I used to hate seeing ‘Parent of…’. I knew it would be another appointment. I saw roles and not people back then.

As Trudy has grown, it has become more about provision for Trudy and what is available. The crucial thing is whether the provision is right for our child. We had to decide between mainstream or specialist provision from nursery, and this would influence how Trudy progressed through school. We had to decide on extra hours for Trudy and how to use financial benefits to her full advantage. Sometimes it would be about celebrating her strengths and achievements, but sometimes it had to be about explaining her differences so we could access what she was entitled to. It has become about partnerships and not ‘service providers’, and we acknowledge that mainstream provision at the moment is right for Trudy and it is working.

It has also become about people and not roles, so that I no longer see a group of professionals around a table, but I see Isla, Laura, Janice and so on. We have a relationship of trust so that if it doesn’t work for Trudy, I trust the people working with her to be able to resolve it with reason and expertise. We have all grown in confidence and the people working around Trudy have shared a journey with us, just as I, as a professional, share a journey with our pupils and families.

Being a parent of a child with a disability is about opening yourself up to let people in. I have come to the conclusion, as a parent and as a professional, that people and relationships have the greatest impact on the child. If we didn’t have the people, including the support from family and friends, or the relationships we have with the professionals around Trudy, we wouldn’t be where we are today. I am and will forever be eternally grateful.

Holland Versus Italy

jtp_8892_180606_trudy

On the eve of World Down’s Syndrome Day, it is apt to shine a light on a wonderful essay (in my opinion) written by Emily Kingsley in 1987, called ‘Welcome to Holland‘. It sought to explain what it felt like to have a child with any kind of disability or additional need, or quite simply what it was like to have a child you did not expect to have. This analogy has been used again and again by organisations and associations for new parents coming to terms with a diagnosis or to help others understand what we go through. So, here it is in my own words:

You set off for Italy, guidebook in hand, full of excitements for sun, pizza and duomos, only to find that you are not Italy. You got on a plane to Holland. You’ve never been to Holland before. You’re nervous, unsure, worrying about what happened to Italy. It takes time, but you begin to explore the tulips and the museums with some help from some very nice people. You discover some cool things to see, you get to know some Dutch folk and you sit amongst the tulips. You begin to see the beauty in Holland. You might still think of Italy but those feelings fade over time and depending on how much fun you’re having in Holland.

We are lucky because Holland for us was easy to love. There have been few complications with Trudy and she is making remarkable progress, but a lot of that is down to the fact that we have worked very hard to forget Italy. We did this because it was the best thing to do for our child, for her to feel loved, nurtured and deserving of a place in this world.

That’s not to say it has always been easy and it is harder for some than for others. As a teacher of children with SEN/ASN, I remind myself every day that some parents may be sitting amongst the tulips, but still pining for Italy. Holland cannot be ignored or avoided, and we must make the best of what we have. So, let’s not focus on what we could have had but what we have in front of us: a healthy, happy little girl.

Happy World Down’s Syndrome Day 2019.

It’s not a race

After having a child who has learned everything so quickly, it was very strange to then have Trudy. I was used to having no worries about whether my child would meet his milestones. With Trudy, I am always worried about when she will get to the next one. I call them my Hare and my Tortoise, and I truly believe that slow and steady will win in the end.

Patrick learns things so fast and will work at something until he has mastered it, but then he moves onto the next thing. Trudy does not have that luxury – she needs time. I have never seen so much patience and perseverance in someone striving to get up a slide or master the stairs. She observes, she tries, then she tries again. Sometimes, her body can’t do it but she parks it until she is ready. The majority of us have the advantage of relying on our bodies to do what we want them to do. Trudy’s body always seems to be lagging behind. I wanted to get her a t-shirt that said, “doing the best with the body I have”. I think that would probably be true for a lot of us. So, it is remarkable when I hear stories of people with Down’s Syndrome swimming the English Channel (please look up Karen Gaffney) and competing in gymnastics in the Special Olympics (look up Scotland’s own Andrew MacIntyre), to name but a few.  Karen Gaffney said that “life prepared her for her swim”, that the defeats she had experienced in her life gave her the strength to complete the race. Trudy was not learning how to get up a slide, but to keep on trying. She was learning resilience, she was working out how to do things in a different way – she was learning to problem solve. It is high time we started to focus on and celebrate these so-called ‘soft skills’.

We do so much, so fast, like we want life to pass us by. We are always in a hurry to get to work, to get to school, to get to the next appointment, when we need to spend more time in the moment. Our daughter has taught us that, not to worry about the future and her future, but to enjoy having her and her brother now, fit and healthy and happy. And, after all, that’s what counts.

Screening – the beginning of being political

I have never been political. I was hardly able to understand the difference between the Tories and Labour really, except for the fact that it was not cool to be a Tory when I was at school. I didn’t know when elections were held, hustings sounded like a disease and I thought the Cabinet must be a very important piece of furniture in Parliament.

And yet, it is interesting how this all suddenly becomes important when it matters. We brought our daughter into a world that wanted to terminate her, where medical professionals were and are overtly suggesting that people like our daughter be screened out. The latest blog I read was that ‘‘People with Down’s Syndrome are an endangered species’‘! Sally Phillip’s programme, ‘A World without Down’s Syndrome‘ was in 2016, a year after our daughter had been born. She revealed that no one was being born with Down’s Syndrome in Iceland after the new pre-natal screening programme had been introduced. She interviewed scientists and people with Down’s Syndrome, and explored the ethical implications of having the new Non-Invasive PreNatal Test (NIPT) available on the NHS.

I couldn’t watch this without wondering why there would be such a fuss about screening for Down’s Syndrome, particularly when there are much more challenging conditions than that. When I look at Trudy, she certainly doesn’t seem to be suffering from anything except an occasionally heavy body and a strong will! This is a really difficult subject but I felt I had to make my case, so the Scottish Council on Human Bioethics helped me to write my first article, which was published in The Scotsman.

https://www.pressreader.com/uk/the-scotsman/20170523/282033327137132

I discovered in my research that a baby with a genetic disorder such as Down’s Syndrome could be terminated right up until birth. The very fact that this was the case for one of our children and not the other shocked and appalled me. I questioned the notion of choice when there were stories of mothers being encouraged to have terminations. In a society that is working so hard to celebrate diversity and inclusion, the revelation that we might be working at the same time to destroy it sent me reeling.

But there are some wonderful stories coming from all this since 2016. Mothers often mention to me that they had the test and they ignored the results! One mother told me in the playground that, when she was expecting her first son at the age of 18, she was told to terminate but she went ahead with the pregnancy anyway. Her son is now 27 and thriving. Incredible campaigns have begun such as Don’t Screen us Out and Saving Down’s Syndrome, which have challenged government decisions to roll this out without due consideration of its impact.

Like all grassroots movements, I hope that these and people’s growing acceptance of difference will allow new parents to make informed and independent choices about raising a child with Down’s Syndrome. As I said in my article, I fear that the objectives of a national screening programme such as this one are not to better equip parents for the future as I would argue that a diagnosis of Down’s Syndrome tells you nothing about the child you will have. But it gives parents the option of avoiding it, and all at the expense of a potentially wonderful and inspiring life. So, I write this blog in the hope that it gives people choice and insight into how life could be with a child with Down’s Syndrome, and what they could offer the world.

Expect the Unexpected

I have been deliberating over the content of these blog posts for a while as I knew I would have to start at the beginning. It is very hard not to comment on the difficult time that we had at the start of Trudy’s life. It wasn’t just about Down’s Syndrome when we had Trudy, it was about coping with the multiple medical issues that were associated with it. Life had become pretty rubbish at that point. People refer to this as “a grieving process” because you are mourning the child you expected to have. The crucial thing here is that nobody died. In fact, Trudy survived those first fragile weeks of her life. So, we just got a child with straight hair instead of curly hair like me, a shuffler instead of a crawler or quite simply a child we did not imagine we would have.

It is important for me to be able to take something from our experience which could teach people about a world we want our children to grow up in (because that’s the interesting bit). So, the beginning of our story becomes about expecting the unexpected, about coping with things when life throws us a curve-ball. In Dan Habib’s TED talk on ‘Disabling Segregation’, he talks about his child with Cerebral Palsy, about your grandma that might develop Alzheimer’s. Our instinct is to plan and to control but there are just some things that we can’t, and children are one of them. Children are always developing and learning, and there is nothing about Trudy which suggests that she will ever stop developing and learning. It will just take longer. I work with a diverse set of children all linked by some form of visual impairment, which, in itself, has such a range. They change from minute to minute, trying out behaviours to see if they fit. We can’t blame ourselves for this. It is how we react to this that counts, showing our children what it is to be understanding, letting them be who they need to be, letting them make their own mistakes and be their own little advocate.

This blog is about how Patrick has kept us grounded throughout the difficult times we have had with Trudy but how life has taken on a normality that might be hard to understand for some. Here are some of the remarkable photos that Jo has taken of our family to let you into a world where difference becomes the norm, to let you see what we see.