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 21st 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.

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.

  

What I would like to say to our Educational Psychologist.

We have had two child planning meetings now with Trudy in her new setting.

In the first meeting, you asked us what we thought about special education. I explained that we were well informed as I was a specialist teacher working in a special school with children with a range of needs, and Alex was a mainstream primary school teacher. We acknowledged the importance of reviewing Trudy’s progress and making an informed decision about where she would go. At present, nursery is a play-based environment and perfectly suited to the needs of a child with a learning disability. We see no issue in having her in a mainstream school, particularly whilst her brother is also there.

At the first meeting, nobody had met Trudy. We explained that the pile of paper we gave them was not going to tell them about the kind of person Trudy was. They would have to meet her.

Since then, Trudy has been successful at making her own friendships, integrating into the nursery environment, respectfully listening to instructions and learning to potty-train. Staff were hesitant at first because they had never had a child with Down’s Syndrome before. I respected their honesty and we have worked together to make sure that they get the right information at the right time. They had the right inherent attitudes to work with a child who is different, embracing diversity instead of withdrawing from it.

At the second meeting, you brought up special education again, against anything that is written in legislation and policy about the presumption of mainstreaming for young people with additional support needs and when we had been very clear about what we want for Trudy. I don’t want to have to cite all the Acts, but I will.

It is wholly inappropriate to discuss something that we do not think is relevant at Trudy’s time of life, when they might be the only years when Trudy is able to be a genuine part of her community.

We will be the first people to recognise the signs when Trudy’s life is miserable in mainstream school and we hope that this will never be the case because we believe that she is able enough to partake in mainstream life. Research around DS from around the world acknowledges that children with DS are achieving more in mainstream settings because of the exposure to children who are developmentally more advanced than them. Child planning meetings are set up so that we have the opportunity to review the suitability of the school as well as her progress. Staff will let us know when they believe that Trudy is no longer achieving in their setting, and they should be empowered to do so. Trudy herself will show signs of not wanting to go to school and will have the capacity to explain to us how she is feeling.

I work with children with a range of complex needs, including complex communication needs and there is not one child who is incapable of expressing their opinion. It might not be in a conventional way, but it is clear when a child is not happy.

This is by no means attaching stigma to special schools. I believe that children need to be in the right setting for them and the school I work in is the right setting for its pupils, with access to the specialist support that they wouldn’t otherwise get in mainstream. We are happy to move Trudy across to a specialist setting if we feel the time is right. Not at the age of 4.

Please refrain from discussing options to parents who are not considering them, as it implies that there is agenda behind the words. We are well aware that Local Authorities are considering alternatives to mainstream settings as the system is currently unsustainable. However, as far as we are concerned, our little girl should not be subject to the changing tides of the education system but be at the heart of all decisions around her future.

Inclusion, is it working or is it just me?

Our daughter, Trudy, has just started a mainstream pre-school and I went to see their ‘Scottish Celebrations’ show today. I was not expecting to see the little pre-schoolers so was caught slightly off-guard.

I watched the curtains open to reveal the little darlings in all their tartan, and sounds of ‘aww’, ‘look!’. As I stood with my heart in my mouth, stretching to see Trudy, I couldn’t see her.

My immediate thoughts were, “they decided not to let her on stage”, “why would they do that?”, “that’s not inclusion”, “I will have to go and speak to them after this”, all in the space of about 2 minutes until I saw our daughter’s radiant smile at the edge of the crowd of pre-schoolers. She might not have been singing along, but she was certainly signing as it is a signing school. She was beaming as she copied her little friends singing and gesturing to ‘You cannae shove your granny off a bus!’.

She loved being there.

Despite my misgivings and fears around whether Trudy will be properly included in her new school, she was there, happy and proud to be part of a community and sharing experiences with her peers, all in the name of inclusion, whilst mama bear was stood, ready to react to anyone who said, “oh, look at that little Downs girl”!

Do we need paperwork?

It’s not the most exciting content for a blog post but bear with me.

We all fear the dreaded word, ‘paperwork’ in work and in life, but so much more when you live with a child who needs so much more ‘paperwork’ than the average person. The question is and one that I have been pondering is, do we need it at all?

I think we call this ‘life admin’ now, which is probably just a nicer way of talking about paperwork for the home. Why have we suddenly needed to coin this phrase? Do we have more admin than we had before?

Most parents we know joke about having a Personal Assistant to deal with all the admin that comes with a child who has a disability. Some parents already have one! It begins with the dreaded but incredibly beneficial-in-all-senses-of-the-word DLA form (Disability Living Allowance). This is discussed when our children are just 9 months old depending on the diagnosis and whether this will affect physical development or care needs.

We could start this process early as Trudy had been diagnosed at birth and this gave us access to help from numerous charities. A Family Support Officer sat with us while we tried to remember what life was like before we had Trudy and how much it had changed. We had done so much work ourselves on accepting her diagnosis that it felt like a backwards step to even consider a ‘sliding doors’ version of our life now. How different would it have been if we hadn’t had Trudy, or if she hadn’t had Down’s Syndrome? Nobody knows the answer to that question, but we had to put some version of it in the form.

Forms, form and more forms. We’ve had all manner of forms, from detailed descriptions of Trudy to one small box to summarise the entire developmental impact of Down’s Syndrome. I think I just put an asterix and wrote ‘see end of form’. I then proceeded to outline the implications of that extra 21st chromosome for our daughter, absolutely refusing to write ‘Trudy has Down’s Syndrome’, as that doesn’t mean a thing.

We have had to fill out forms for access to support, which means using negative language around Trudy’s ‘condition’, but also for access to so-called ‘normal’ classes, which means focusing on Trudy’s strengths and ability to integrate. It’s a linguistic minefield.

Trudy has just started a dance class and there is no form for that. This could either be an unnecessary evil that has been done away with for being of no benefit, or the tell-tale signs of a confident practitioner who deals with the child first and the information later, someone who deals in (the buzz-word in education right now) ‘relationships’. The form for gymnastics, however, put us back 6 months because we had to get a letter from Trudy’s Paediatrician to say she was fit to participate in gym (at the age of 3).

On the one hand, forms can get us what we are entitled to, as well as give people vital information about what support our children might need. On the other, they can really take away from the child’s innate capacity to form their own interactions and relationships with somebody else, as well as the professional’s ability to judge and assess a child’s need without recourse to paperwork.

I recently accessed an online course by ‘The Inclusion Academy‘ on IEPs for parents and professionals with Genia Stephen and Erin Sheldon, practitioners and authors of ‘Inclusion’ in the States. They were discussing the importance and role of the IEP (Individual Education Plan) in assessment of a pupil’s needs. In Scotland, the IEP is not legislation but an example of good practice. I wondered whether this carries too much of a risk as there is no legal obligation to produce this document and no standard practice of what this document should include. Genia answered my dilemma by reminding me that there can be excellent practice and no or little evidence of paperwork, as well as the best paperwork but no or little evidence of good practice.

I know which one I would rather see.

 

 

 

Being a parent

I’ve been thinking a lot recently about what it is like to be a parent of a child with a disability, as I am preparing a talk for the staff at my school about this. It’s a tough one, because most of the time we don’t see our child as having a disability, and it is hard to remember what it was like before we had her. I’m not sure the two different versions of me are even comparable. I’ve changed, Alex has changed and I’m sure to an extent her brother has changed in his 5 years. We have all adapted to life with Trudy and it is hard to be explicit about that.

As I say in my talk, I do not seek to represent the views of other parents as we all look at things in different ways, much like our children! I am also presenting this caveat here, although I would be so pleased if this post goes some way to supporting other parents’ voices. This is because I see myself in many of the parents I work with, in their strength to stay calm when things are not going their way, strength to stand up for their child when they do not have a voice and strength to keep going when the odds are against them. I see their extraordinary capacity to listen and learn when professionals use big words they’ve never heard before, and I see the day they start using those words themselves, forgetting they once never knew what they meant.

I don’t see myself as any different to how I was before but I know I have changed because I see myself in them. I recognise their elation at the slightest progress, and their pain and frustration at having to fight again. I know our story has changed me fundamentally into the person and professional I am today.

So, I will attempt to describe what it is like to be Trudy’s mum. There are crucially two different journeys that we have taken in having Trudy: The first is having a sick baby, and the second is managing and accepting a diagnosis.

Having a sick baby was tough, devastatingly traumatic and has long-lasting effects on how we manage as a family even now. The first and most traumatic event in my experience was not bringing my baby home. It is still difficult for me to hear of parents that get to bring their baby home. Both our children were on the neonatal ward and Trudy needed an ambulance. I won’t let my children make nee-naw noises or spot an ambulance now without acknowledging that there is a sick person inside. Nothing prepares you for blue lights.

There were lots of people involved in her care at the beginning and lots of people always talking around us, sometimes to us but not always. It felt intrusive, chaotic and I felt a huge loss of control.

Then there was the worry, the worry that things weren’t going to turn out well as we saw patient after patient being discharged. Then the day came that we were discharged, but that worry never left us. It became a different worry, a worry that it could happen again. And it did for the first year of Trudy’s life.

Her health has got much better since then as her little body has learned how to fight infections.

The second journey is managing and accepting a diagnosis, and we may not be fully there. I mentioned the poem by Emily Kingsley, ‘Welcome to Holland’ in my last post. This resonated with me.

So, the first part of this journey was accepting that it was difficult to go to ‘normal’ baby groups. There were too many looks and questions that I just wasn’t ready for. I remember one group where we went around the circle and mums spoke about their babies and the issues they were having with sleep. I had just got out of hospital with Trudy. Sleep was the least of my worries. And Trudy couldn’t do what other children could do at the same age. It was too easy to compare Trudy with other children in the beginning. I hadn’t accepted that she was different.

Then professionals would turn up at our door and they had jobs I never knew anything about. This felt intrusive and it took up time, coordinating appointments and making sure Trudy wasn’t too sleepy. We had endless letters in the post. I used to hate seeing ‘Parent of…’. I knew it would be another appointment. I saw roles and not people back then.

As Trudy has grown, it has become more about provision for Trudy and what is available. The crucial thing is whether the provision is right for our child. We had to decide between mainstream or specialist provision from nursery, and this would influence how Trudy progressed through school. We had to decide on extra hours for Trudy and how to use financial benefits to her full advantage. Sometimes it would be about celebrating her strengths and achievements, but sometimes it had to be about explaining her differences so we could access what she was entitled to. It has become about partnerships and not ‘service providers’, and we acknowledge that mainstream provision at the moment is right for Trudy and it is working.

It has also become about people and not roles, so that I no longer see a group of professionals around a table, but I see Isla, Laura, Janice and so on. We have a relationship of trust so that if it doesn’t work for Trudy, I trust the people working with her to be able to resolve it with reason and expertise. We have all grown in confidence and the people working around Trudy have shared a journey with us, just as I, as a professional, share a journey with our pupils and families.

Being a parent of a child with a disability is about opening yourself up to let people in. I have come to the conclusion, as a parent and as a professional, that people and relationships have the greatest impact on the child. If we didn’t have the people, including the support from family and friends, or the relationships we have with the professionals around Trudy, we wouldn’t be where we are today. I am and will forever be eternally grateful.

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

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

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.