Category: Down’s Syndrome

Why we have written our book, ‘Trudy And Me’

I am going to try to capture in this blog what our daily social media posts are trying to say about why we have written our book, ‘Trudy And Me’. There is currently a crowdfunding campaign to fund the printing of this book which has 9 days left. I want to describe the process to you so far of how the idea came about and why we have ended up with a campaign, particularly if you have been unable to come to either of our talks at Portobello and in Lanark.

It started way back at the beginning when Alex and I realised that messaging was really important to us. I had given birth to Trudy, and nobody had said ‘congratulations’. Admittedly, this was tainted by blue lights and worried paediatricians, but it dawned on us after all this that we had not heard those ubiquitous words so easily uttered to new parents of typical, healthy babies.

A week later, a thoughtful doctor finally said this to us and handed us a pack donated to the hospital which stated quite clearly, ‘congratulations on the birth of your new baby’ and a beautiful picture of a healthy, happy baby with Down’s Syndrome.

This was a positive statement and clear message that it was not all to be doom and gloom but that we were actually incredibly grateful that she had survived her first weak months in this world. It became apparent to me that this needed more leverage.

Alex has since spoken to midwives and health professionals about the importance of positive messaging at the beginning and I continued to look for this in other areas of life.

I was keen to explore children’s stories that represented children as children and not disability to read to Trudy’s brother, Patrick. There is very little representation of children with disabilities in literature and moreover very little positive representation.

I spoke to my friend Bridget about this, endless chats at the playground of frustrations around attitudes towards disability. Bridget had worked as an Occupational Therapist with adults with learning disabilities and had witnessed some of the negative and disabling behaviours we were discussing.

Bridget came back one evening with a poem, which captured the points perfectly – points about accepting and celebrating people for their differences, recognising that all people have their ups and downs and that people with Down’s Syndrome are not always happy!

She then began the mammoth task of illustrating the poem in watercolour. We chatted for a long time about the need for Trudy to look like Trudy and not a caricature, however brilliant the artist is. So, we enlisted the support of Jo Tennant, professional photographer and friend who took all the photos on this blog. We spent many a happy hour taking photos of our kids to use in the book. I’ve popped some at the bottom of this post.

The book was taking shape with the three of us learning from each other and building on each other’s strengths. We tried to approach publishers, but this was lockdown and publishers were taking fewer and fewer submissions, perhaps due to an increase in supply – who knows.

Five years after the birth of an idea, the book was ready to be printed. We started to explore the possibility of printing it ourselves so we could remain in control of the design, message and layout. Bridget spoke to a fellow parent at the line of a football pitch whilst watching their kids play and he mentioned that he was a graphic designer. Craig McIntyre then offered to digitalise our book so that we could get it to print. He sourced a printing company that could offer their services at a reasonable price.

We had all the necessary components, we just needed to fund the print costs as well as expenditure for postage, an ISBN number and fees. Our aim has always been to distribute this book to as many new parents, charities, libraries, schools and families as possible to reassure, inform and teach people about celebrating difference. We set the target at £20,000 to cover the printing of 2,500 copies as this was our only chance to print.

If you have read this far, we are absolutely overwhelmed by the donations and support offered to us by our friends and family to whom Trudy, Patrick, Bridget and her two children mean so much, but we want to make this project a reality and we need everyone’s help to do this.

Please check out our website: http://www.trudyandme.com and you can pledge your support at: https://www.crowdfunder.co.uk/p/trudy-me-a-picture-book-celebrating-difference.

This has been a long labour of love and commitment to making the world a more positive place for all.

Thank you.

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An incredible performance by Julia Hales

I know I haven’t posted for a while and Trudy has started school so there is lots to say but, as usual, I am trying to navigate the political tightrope which is having a daughter with a disability in mainstream.

Nevertheless, I went to see a performance last night. It was a great performance about Home & Away and Down’s Syndrome and I have to tell you about it.

I wasn’t sure what I was expecting. A woman with Down’s Syndrome had written and was performing her play at the Edinburgh International Festival. I so badly wanted this to be a show which paraded acting talents and didn’t focus solely on disability and it did, in spades.

But it did not hide from the fact that the writer and performers had Down’s Syndrome. It celebrated what Down’s Syndrome has to offer. There was Julia, who knew how to command an audience with presence and confidence, Josh who really knew how to dance and others in her entourage who spoke well, painted, who had understood the true reason we are all here, to love and be loved and, above all, to have fun doing it!

It reminded me of an incredible cafe in Ilkley, West Yorkshire which I visited when Trudy was just born. This is a cafe run by adults with learning disabilities called ‘Outside The Box’. The great selling point of this cafe is that everyone talks to each other! You will get to know the people sitting on the table next to you. There is no judgement and social norms seem to be quietly set aside whilst we engage with real people.

This was the same with the theatre. We were invited to participate and I could sense everyone’s surge of fear as Julia asked people to come up to the stage. But there was no judgement, no expectation. Julia herself forgot her lines occasionally, but she accepted her stumble and didn’t judge herself for it. That gave us all hope that we could do whatever we felt we wanted to do.

So I went to find the cast, to tell them that they were utterly inspiring. Julia, in her show, talks about two hospitals in Australia that were shut down the year she was born. These hospitals entrapped adults like her and treated them like animals. This backdrop has affected us all and makes us fight harder, grateful for the extended kindness to include our young ones in life.

But Trudy won’t know any of this. She will just see people like Julia being part of the festival on her own merit and not because of her disability. She will see people with Down’s Syndrome on the TV, on radio and in jobs and expectations for her will change.

I will be eternally grateful for people like Julia who push and challenge boundaries every day. It is much more than I can ever do writing my blog so grateful, as ever, for your reading this but please go out and see shows like these. You will have a fantastic night out!

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What is disabling our daughter?

It is a powerful word, ‘disabling’. By its own definition, it would mean that someone who is ‘disabled’ lacks the ability to do anything. That is quite a frightening prospect for anyone.

But it is the process of ‘disabling’ which really interests me. Someone or something must have been the source of the disability. Is it the condition itself that forces the person in a wheelchair, or the rampless bus which the person can’t board, or is it the people who stare at the limbless man, the almond eyes, the slurred speech? What or who is disabling?

Our daughter, Trudy, had low muscle tone when she was younger, a condition associated with that extra chromosome which keeps rearing its ugly head. She couldn’t sit in standard wooden high chairs (popular in restaurants and pubs) without sliding through it like jelly and there was no chance we were going to feed her safely. So, we had to phone ahead to make sure that they had a plastic high chair with a cushioned insert and a bar between the legs. These were specific requests but, if they didn’t have one, we couldn’t go.

Trudy wanted to start gymnastics but we had to get a letter from her paediatrician to say that it was safe for her (appointments with paediatricians are not easy to get). She wanted to do dance classes but she had to wear tap shoes. Has anyone tried to get a hypotonic ankle into a tap shoe?! We started swimming lessons but the instructor said that we couldn’t go in with her because she was in the higher age group. I stated quite politely that she would drown if we didn’t go in with her. Needless to say, he let me in then. And then there’s childcare. We can’t just send Trudy to a holiday camp or a babysitter without having an in-depth conversation first in which we dissect and analyse Trudy’s needs.

Some of these things have to be in place to make sure our daughter is safe, like the paediatrician’s letter and the pre-activity chats. But the smart-looking high chair that doesn’t support the baby or indeed the backless swing at the park lead us to a swift conclusion: We can’t go out.

We can’t go to the playground because our child will just have to sit there watching the other children play, and that’s not fair. Have you ever wondered why there are few disabled people in parks? Lack of accessible equipment is a major factor.

We can’t go to the cafe because they don’t have the right equipment to feed our child safely.

We can’t go to that concert because our children can’t queue or stand the noise.

Or very sadly, we can’t go out because they’ll stare.

So, what is disabling our daughter? Well, it’s a combination of things. Her Down’s Syndrome prevents her from understanding, which means basic excursions are a challenge. The wrong equipment or the crowded places are an issue. But for the people who stare, who don’t understand that she is finding it difficult to wait or really doesn’t want to move, well, they’ve really no excuse in my opinion.

A person feels disabled when they can’t access the most basic of places such as the bus or the shops. So the buses have ramps and the shops have wheelchair-friendly trolleys, but not always. Blue badge users can park closer to shops but, who hasn’t been guilty of parking in a disabled spot when in a hurry?

A person feels disabled when there are too many barriers to doing what they want to do, like dance or gymnastics or swimming. Parents give up because there are just too many forms to fill in and nobody seems to read them anyway.

A person feels disabled when normal avenues are not available to them such as mainstream education or employment. Children are turned away from schools because they will be ‘detrimental to other children’*. Adults can’t get jobs because it requires just too much effort to adapt the workplace for a wheelchair user or a person with learning difficulties.

There is some great work out there and some great legislation around disability rights but, perhaps if we started considering the possibility that people are not ‘disabled’ but ‘enabled’, we might not assume what they can’t achieve and start concentrating on what they can.

*Standards in Scottish Schools Act, 2000

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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.

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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.

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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!

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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.

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