Travelling with Trudy

After a few posts about screening and inclusion, it is time to write about something a little more light-hearted!

We have just come back from a holiday on the Isle of Mull (West Coast of Scotland, if you’re not sure) – a stunning location with must-see views and food to die for. But for a 3-year-old with a death wish, this was an opportunity to fall off a boat and get lost in Tobermory.

We set off from Oban, a busy seaside town with large ferries to watch but no barriers in sight. A quick risk assessment of the area led me to believe that chances of survival for Trudy were slim. She is on her feet now and is drawn to whatever object or person takes her fancy. She has no concern for where she should go or more accurately, where we want her to go.

After saying ‘hello’ to everyone, she saw a big watery expanse and wanted to take a closer look, yelling ‘splash’ ‘splash’! Leaning precipitously over the edge put my heart in my mouth and my brain into overdrive, and I don’t think it slowed down much more than that over the whole week. She has uncanny way of finding trouble everywhere with the nonchalance of a 2-year-old but the sheer stroppiness of a 3-year-old. As I’ve said before, children with Down’s Syndrome have a spiky profile! I like to ignore phrases like, ‘she’s got a developmental age of a …’ as I don’t think these are an accurate representation.

We managed to keep her away from the water’s edge and got on board the ferry – an equally risky endeavour. Although, the ferry catered nicely for small bodies leaning over and through railings, which were like prison bars on the top of the boat. Thank you, Calmac ferries! It allowed for a little respite for mummy and daddy.

Docking at Craignure, we drove to Calgary Bay which was a delightful little small holding with a cafe and an Art Walk. Perfect for little legs with intriguing art in the shape of giant pea-pods carved out of wood and willow dens. The kids loved it! Friendly staff who didn’t seem to mind that our children had no volume control or enjoyed wearing their cake and hot chocolate.

A day out in Tobermory ended with mummy looking like this (stressed emoji). Another harbour with a drop to the sea and a busy high street with no pavement between the road and the harbour edge. We had cleverly remembered the backpack and the harness but Trudy was having none of it. She has just discovered walking and wants to do it all the time, every day, everywhere and on her terms. Coffee was dangerous, lunch was messy but the aquarium was ace. A modest-sized room kitted out with tank upon tank of catch of the day, to be released after a few weeks. The children were captivated by the staff who delivered the touch-pool sessions where they got to touch starfish, urchins and crabs. Patrick loved it, Trudy did laps of the aquarium, making friends with any child of her height and dropping in on the plankton man at least 10 times.

Needless to say, we have returned with both children in one piece and a little better for the fresh sea air and time together. It’s a great place to visit but it comes with a health warning: 3-year-olds will eat fish, touch fish and try to be fish. Watch out, Mull!

Including Trudy

It has never been straightforward to just ‘include’ Trudy. Patrick moved seamlessly up to the next class in nursery, or from parent and toddler classes to being on his own. There was never an issue with him, never a debate.

Trudy, however, took a different path. Nursery had this all in hand with initiatives in Scotland such as Getting It Right for Every Child (GIRFEC) and the child’s plan. This meant that we had regular discussions about when it was right for Trudy to move up and what support she would need, if any. We had eight professionals involved in the decision-making process. We got access to 1:1 funding but she hasn’t needed a dedicated member of staff, as she soon got lazy and well aware that the member of staff was solely there for her! In collaboration with the nursery, we used the funding for training all the nursery staff to use Signalong or to have an extra pair of hands when out and about.

We were offered smaller gym classes for children with disabilities or volunteers with tabards but these didn’t seem appropriate for Trudy. The last thing I want to see is my child accompanied by someone in a tabard! Trudy learns better when she is copying her peers who are bigger, faster, more able than she is, when she is given the time and space she needs. The gym coaches soon got to know her and treated her like she was just another kid. It was solely down to their confidence and expertise that Trudy was included in her mainstream gym class. A huge thank you to Edinburgh Leisure for being a shining example of how inclusion can be facilitated through a little discussion and a ‘can-do’ attitude.

So, we then started to observe a different model of inclusion; one which was not based on singling out the child, but one which permeated the entire staff, children and families, enhancing skills and encouraging compassion. Our speech and language therapist worked in small groups of Trudy’s friends, using songs and simple signs that the other children could try. Gradually, Trudy has become her own little wonder with her own skillset. She is surrounded by little friends who want to communicate with her, to support her. Her little friend, Paddy, is very keen to tell me where she is when I go to pick her up!

I have done my own research around inclusion for my professional development and to be able to work with the young people at my school. I have learned that the landscape for inclusion is still changing. The focus is no longer on mainstreaming, but on providing the right support at the right time. Research has informed policy and the guidance is very much in favour of an inclusive society where children with disabilities are accepted and celebrated. Thank goodness we have moved on from the days of the ‘ineducable’ and the ‘sub-normal’! A study done in 1978¹ found that educational opportunities and early intervention might be extending the intelligence levels of children with Down’s Syndrome. Professor Lani Florian², who is a great advocate for inclusive practices in education, suggests moving from labelling so-called ‘normal’ children and children with additional support needs to a focus on individual differences in all children.

I cannot imagine that this is anything but a good thing, for everybody. How lucky we are that we live in a world where our children are accepted! Including Trudy will have its challenges but we must always remember that the world has come a long way in its fight for justice and equality.

But one question will continue to hound me as a parent and a professional: How close are we now to achieving true inclusion of children with disabilities and additional support needs?³

¹Conolly, J.A. (1978) ‘Intelligence levels of Down’s Syndrome Children’

²Florian, L. (2017) ‘Achievement and Inclusion in Schools’

³https://www.tes.com/magazine/article/inclusion-all-laudable-dream-reality-stark

Holland Versus Italy

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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.