Covid-19 – Trudy

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

Jan 26, 2021Jan 26, 2021 by trudyscrumptious15 Categories: UncategorizedTags: ASN, Covid-19, Disability, Down's Syndrome, Parenting, WouldntChangeAThing 1 Comment

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 21^st 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.

Oct 28, 2020 by trudyscrumptious15 Categories: UncategorizedTags: Covid-19, Disability, Discrimination, Down's Syndrome, Equality, Pre-natal screening Leave a comment

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.