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, what hustings were and that the Cabinet was anything to do with politics, until relatively recently.

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.