What would Trudy do?

Four years ago, I started writing this blog because of Patrick, Trudy’s big brother. Because seeing Trudy through his eyes meant that we saw the girl and not the disability. He helped us to understand what we needed to do to accept our little girl.

Today, he said something which summed this all up. It reminded me of why blogging about him and his journey was as important as documenting ours and hers.

Patrick really wanted to try Taekwondo and I’d booked a trial lesson for him. We were heading that way when he told me he was nervous. He said that he wasn’t like Trudy, that he couldn’t just go up to people he doesn’t know and talk to them.

In that instant, he recognised one of Trudy’s main strengths, the strength to go through life not giving a damn about what people think of you, the confidence to initiate a conversation (albeit in her own way) and the lack of judgement to talk to absolutely anyone.

We talk a lot about what Trudy can’t do because we are constantly assessing her support. We help her every day with whatever she needs. We have to put things in place with regard to her independence, her education, her health and her well-being to make sure that she lives a full and happy life.

But this little gem of observation, this wee reminder that Trudy has something that WE might need flipped everything on its head. What if we learned from people like Trudy? What if they were here to teach us something, about ourselves, about each other and about the world we want to live in?

When my husband and I went to see a band together, everyone was seated and there was nowhere to dance. It was such a shame as the music was so good! I remember thinking ‘what would Trudy do?’ and we got up and danced like noone was watching in the space next to the fire exit!

So, maybe next time, when you’re doubting whether you should talk to that person, dance to that song or start that new club, think ‘what would Trudy do’!

Why do I feel like I have to say ‘thank you’?

It’s the same feeling everywhere I go, at the park, at the pool, in cafes or at the supermarket.

If someone is nice to our daughter, doesn’t walk away, lets their children play with her or lets her take everything off the shelves in Tescos, I feel inclined to say ‘thank you’.

Thank you for allowing her to be herself, thank you for making my life easier, thank you for including her in your games.

Trudy is heading for her first year of primary school and I find myself feeling incredibly grateful that her mainstream school will accept her. Despite the reams and reams of legislation and rights-based discourse that I know like the back of my hand, I still want to say ‘thank you’.

Why is that? Is it because I know too much about what has gone before, when people with disabilities were shut away, disabled and disempowered? Is it because there are thousands of cases across the UK where children with learning disabilities are still not accepted into mainstream on the misguided assumption that they will be ‘detrimental to their peers’? Or, if they are accepted, it is with reluctance and lack of understanding. A child with DS was wearing a hi-viz jacket in one mainstream school because he was a flight risk. He may as well have ‘watch out for me’ written all over him, and not in a good way.

We are so eminently glad that Trudy’s rights to an equitable education are being upheld but I wonder when we are going to stop feeling grateful. Grateful for the opportunity to be part of society when her brother just is. Grateful for the chance to learn with and from her peers. Grateful to have peers.

I’ll remember to write again when I no longer need to say ‘thank you’, when her journey to acceptance is not shrouded in worry and doubt. Let’s hope this and so many other stories end well, that our children grow up as integral parts of our diverse and rich communities of people.

How a typical child develops (from observation, experience and a little background knowledge!)

Watching a typical child develop is a bittersweet reminder of how Trudy’s development differed and differs.

Trudy and Patrick now have a little sister, a lockdown baby who has never seen anyone except her immediate family and grandparents, and knows her buggy much better than her car seat!

I watch her develop every day, learning to gain command of her limbs, the cogs in her typical brain turning to bang and hit and grasp her toys. She moves her body to discover what she can and can’t do, and what she still needs to learn.

It reminds me of Trudy’s first years, a floppy, hypotonic baby whose brain struggled to process everything at the same time. She would babble away (because Trudy loves to chat), but her physical development would stall.

She sat up on her own at 1, stood up independently at 2 and a half and walked at 3. Trudy is 5 now and she’s running.

Her baby sister will probably crawl before she’s 1 and be walking before 2.

And this is not that large a gap compared to some children but it reminds us of the difference between the way Trudy learns and how she will never follow a typical development pattern.

Trudy’s sister will learn through osmosis, through a combination of watching and learning, her innate faculties processing every little thing subconsciously then acting upon them with conscious and deliberate movement. She bangs herself on the head with a toy, she does it a second time and then doesn’t do it again.

A typical brain will absorb the concept of consequences much more easily than a child with learning difficulties, even if the child hasn’t experienced the consequence, so that the typical child will not wander far from home or run across a car park.

Most consequences we talk about are largely linguistic in that respect, “don’t climb too high or you’ll fall”, “don’t run across the road or you’ll get run over”, “don’t put your fingers in the fire or you’ll get burnt”. You say something like that to Trudy and all she hears is “put your fingers in the fire”!

Trudy will always need support to understand what she should and shouldn’t do, but with the right use of language, she can begin to process the world on a subconscious level, to inherently learn to be safe and independent of us.

There is research happening all the time on how to develop our young people’s independent living skills and ultimately make them less vulnerable. To make them safe, healthy and happy: Such simple aims to which we all have a right, and it should never be forgotten that some of us have the natural privilege to be.

How our daughter with Down’s Syndrome changed my outlook

As I lay in the bath (yes, hear me out..), I watched the little islands of bubbles attach themselves to each other, and I was reminded of how simply a life and lives can be altered when just one chromosome decides not to divide. It’s amazing what you think of in the bath!

The process is called meiosis, from the Greek meaning ‘lessening’ and I love to know the origins of words! During meiosis, cells divide to produce gametes which can be the sperm or the egg. The egg contains unpaired chromosomes in its nucleus and these pair ever so romantically with the matching chromosome in the sperm to form a typically developing embryo.

Down’s Syndrome occurs when the 21st chromosome fails to separate in either the egg or the sperm, and approaches the encounter as a pair already, creating three 21st chromosomes. And we all know three is a crowd…

Like the bubbles in the bath clinging to each other, those 21st chromosomes had refused to divide and, from its conception, had created an imbalance in the egg that would turn into a child who would never develop in any typical way but grow uniquely and surprisingly. She would carry the traits of a child with Down’s Syndrome; the low-set ears, the flat nose and the almond shaped eyes. She would take her time to learn to walk and find it difficult to use language, although she would be sensitive to tone and intonation like nobody else I know.

This one random event in the development of an embryo has distorted the development of a life and affected us in ways I would never have imagined.

Being the parent of Trudy has its challenges but having her has changed me for the better.

First of all, there is writing. I used to write for writing’s sake, creative pieces and lots of nonsense, and now I have a reason to write.

Academic achievement has always been important to me and I would always want the same for our children because I have derived so much pleasure from study and learning. But what happens when an academic path is not available to one of our children? Having Trudy has forced me to reevaluate not only what is important for her but also what is important for all our children. And learning does not only occur in academia. The pleasures and small joys of life like sitting around the dinner table with family or friends, learning from them and learning from the great environment around us are enough to allow us to live full and contented lives, and isn’t this what we are all striving for?

I realised today that I had high hopes for our children. I want them to make great change, to affect other people’s lives in unique and interesting ways. And you don’t necessarily need degrees to do that!

Trudy may not learn to write extensive essays or solve multiple equations, but she will, with our help and support, learn to be a genuine part of society, earning her own money and living as independently as is possible.

Despite some confidence now, I was always quite shy as a girl and the prospect of having a child who makes the most noise in the playground, who talks to anyone and everyone, who wears her condition so unashamedly on her face and in her mannerisms, would have filled me with dread.

So, has this one random event of chromosomal nondivision made me a better person, a better mother? Well, I think it has.

I have more manageable expectations of our children, of myself. I take pride in the smallest of achievements and don’t sweat the small stuff. I revel in her uniqueness and our uniqueness as a family as a consequence.

These children and people are indeed ‘special’ but not for reasons of difference or impaired ability, but because they impact our lives in ways nobody else does. They force us to challenge fastheld opinions about how we should and shouldn’t behave and change our lives for the better.

We all know how Down’s Syndrome (Trisomy 21) occurs but nobody knows why. I’m not sure if these things happen for a reason but we make the best of our situation and sometimes what seems devastating at a time can be turned to an advantage.

Being Trudy’s brother

What are you thinking when we say, ‘We get it. We understand’? Do you think we do? We probably don’t get it. What parent does? How can we possibly begin to understand what it’s like to have a sibling with Down’s Syndrome when we have never experienced it ourselves?

I know it’s confusing when we ask you to help her then we tell you off for doing too much. When we demand that you take her to the toilet and then yell at you for pulling her trousers down when she’s screaming at you. Because she just wants to do that bit herself. When we ask you to help her with the iPad then tell you off for answering the questions because we won’t ever know what she understands otherwise.

Trudy needs, above all, to learn to be independent but sometimes she needs some support to get there. We know that, but do you? Do you know why we appear totally contradictory at times? Can we expect you to understand the fine line between helping and doing things for her?

You’ve been stuck with your sister in lockdown for what seems an age now, and we keep saying that at least you have a playmate. But does it sometimes seem infuriating that she isn’t exactly the playmate you would have wanted? I am sure most siblings across the country feel like that.

But just as you might be thinking, wishing you could see your own friends again, Trudy comes down the stairs in your pants or dresses up in the bear’s sunglasses with an army hat on and a hi-viz jacket, and we all burst out laughing. Or when her feet join us at the dinner table as if there were another person hiding under her chair. Trudy is hilarious and undoubtedly the most unpredictable human being I know. She is a creature of impulse, licking the snow to see how it tastes, digging it up with a spade because that’s what we do with sand, don’t we? She plays endless games of hide and seek with anything she can find, toys, people, dinosaurs, or cafes with leaves and twigs on anything she can sit on.

We try to understand but we probably won’t. Life with Trudy is like no other life just as you can’t compare an apple with a pear or a life with any other, but it’s a crazy whirlwind of spontaneity and imagination. We can’t choose our family but each member of it offers an angle we would never achieve by ourselves and our lives would now be incomplete without them. So, we don’t ask you to be grateful because you’re 7 but bear with us as we try to offer the best possible life to you both.

Your mum and dad

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.