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.

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.