What it actually means to be an almost 4 year old with a learning disability.

“She’s got a developmental age of a 2 year old” is a common misconception of what it is to be an almost 4 year old with a learning disability.

It is so easy to see our children at an age which explains their delay in language or physical development. Trudy’s language is delayed and she probably has a word-bank that equates to that of an average 2 year old. But, have you ever met an average 2 year old? I certainly haven’t.

This was highlighted to us when we observed her playing with her cousin (who is 2). She might have the language of a 2 year old (in fact, she had far fewer words than him), but she has been on this Earth for almost 4 years. That means that she doesn’t have the tantrums of a 2 year old nor does she have their attention span. She can wait her turn and understand a queue. She can spend a long time at a table colouring in or having lunch because she has experienced these for almost twice as long.

This is something the outside world forgets but, for those of us working in the weird and wonderful world of ASN/SEN, we recognise that a 16 year old cannot be treated like a 2 year old despite their apparent disability. It is what we refer to as a ‘spiky profile’. Where language might be delayed, a child might learn to walk or climb or jump because, at that time, jumping is the most important thing to learn.

All children are motivated by what they desire to learn, and that is no different for children with a learning disability. They might just need more time to focus on each skill. Trudy has just been yelling at ‘Alexa’ to get her to play ‘Row, row, row your boat’. I am in no doubt that she will learn to say ‘Alexa’ very soon.

In education, we are moving away from harmful phrases like this which can perpetuate misunderstandings about disability and ability. With greater research in this area, we understand that it is no longer appropriate to say that a child is less able than another without considering all areas of their development, and what we learn from children with additional support needs can help us understand the differences and quirks in all children.

Some of the books I have read recently have informed my opinion of this:

Dewey, J. (1916) Democracy and Education. New York: Macmillan.

Florian, L., Black-Hawkins, K. and Rouse, M. (2nd ed) (2014) Achievement and Inclusion in Schools. London: Routledge.

Hart, S. (2004) Learning Without Limits. Oxford: Oxford University Press

Universal Design for Learning

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

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.