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 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.

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