A rare moment of sibling appreciation

There are few more precious moments than when a brother says openly and unreservedly how much he loves his sister. These statements don’t come easily so I’d better write this one down!

We have been on holiday this week and it has been a great opportunity for Patrick and Trudy to play together and discover each other again, along with their baby sister.

Playing with Trudy can be frustrating because she is hugely repetitive. She gets hold of an idea then clings to it like a limpet until it’s fully assimilated in her brain. This is much like most children but with Trudy, this process is longer. Trudy will repeat the same role-play with anything; cars, dolls, fruit, pebbles, you name it.

It goes something like this: “Hi, what’s your name?” “Car [or pebble depending on the object” “Play?” “Okay” “Park?”

It is pretty brief but, looking at this on paper, it seems to cover all the basic elements of a friendly interaction: greeting, question, invitation to play.

We all went slightly mad with Trudy’s monologue at the river which required some response from us. That went something like this: “Daddy, look!” “What’s that, Trudy?” “A potato. No, daddy, not a potato. A rock!” She must have said that at least 20 times when we were throwing stones in the river, or was she throwing potatoes? Who knows! It was funny the first time but the humour wore off as we had already heard the punch line!

For Patrick, he’s got to be patient, he’s got to be understanding, he’s got to care about the safety and well-being of his little sister ALL the time because we rarely take our eyes off her.

But there are those wonderful moments when Trudy transfers her play to the real world and asks every passer-by “what’s your name?”, and she will invariably get the reply “what’s yours?”.

We have met Steve and Rob who were walking to Ribbleshead, Mowgli the dog, whose owners have a narrow boat in Skipton, Glynn who was going up Buckden Pike the wrong way. I could go on.

Trudy inspires friendships and pushes interactions you might never have without her and there is a silent recognition from us all that we owe these to her.

So in one brief moment, Patrick, with his ability to get straight to the heart of the matter, stated quite plainly and unprompted that he likes his sister’s Down’s Syndrome, that Trudy wouldn’t be Trudy without it.

Her ‘condition’ was not something he wanted to take away, he wasn’t wishing for something else unattainable. He was grateful for it. I’d like to say that he was grateful for the confidence it brought her, for her eminent likeability because we were all benefitting from it.

So let me savour this moment, describe it, document it, relish it, because some days are tough and these precious moments of gratitude are hard won but worth every battle.

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’!

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

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.

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!

It’s not a race

After having a child who has learned everything so quickly, it was very strange to then have Trudy. I was used to having no worries about whether my child would meet his milestones. With Trudy, I am always worried about when she will get to the next one. I call them my Hare and my Tortoise, and I truly believe that slow and steady will win in the end.

Patrick learns things so fast and will work at something until he has mastered it, but then he moves onto the next thing. Trudy does not have that luxury – she needs time. I have never seen so much patience and perseverance in someone striving to get up a slide or master the stairs. She observes, she tries, then she tries again. Sometimes, her body can’t do it but she parks it until she is ready. The majority of us have the advantage of relying on our bodies to do what we want them to do. Trudy’s body always seems to be lagging behind. I wanted to get her a t-shirt that said, “doing the best with the body I have”. I think that would probably be true for a lot of us. So, it is remarkable when I hear stories of people with Down’s Syndrome swimming the English Channel (please look up Karen Gaffney) and competing in gymnastics in the Special Olympics (look up Scotland’s own Andrew MacIntyre), to name but a few.  Karen Gaffney said that “life prepared her for her swim”, that the defeats she had experienced in her life gave her the strength to complete the race. Trudy was not learning how to get up a slide, but to keep on trying. She was learning resilience, she was working out how to do things in a different way – she was learning to problem solve. It is high time we started to focus on and celebrate these so-called ‘soft skills’.

We do so much, so fast, like we want life to pass us by. We are always in a hurry to get to work, to get to school, to get to the next appointment, when we need to spend more time in the moment. Our daughter has taught us that, not to worry about the future and her future, but to enjoy having her and her brother now, fit and healthy and happy. And, after all, that’s what counts.

Expect the Unexpected

I have been deliberating over the content of these blog posts for a while as I knew I would have to start at the beginning. It is very hard not to comment on the difficult time that we had at the start of Trudy’s life. It wasn’t just about Down’s Syndrome when we had Trudy, it was about coping with the multiple medical issues that were associated with it. Life had become pretty rubbish at that point. People refer to this as “a grieving process” because you are mourning the child you expected to have. The crucial thing here is that nobody died. In fact, Trudy survived those first fragile weeks of her life. So, we just got a child with straight hair instead of curly hair like me, a shuffler instead of a crawler or quite simply a child we did not imagine we would have.

It is important for me to be able to take something from our experience which could teach people about a world we want our children to grow up in (because that’s the interesting bit). So, the beginning of our story becomes about expecting the unexpected, about coping with things when life throws us a curve-ball. In Dan Habib’s TED talk on ‘Disabling Segregation’, he talks about his child with Cerebral Palsy, about your grandma that might develop Alzheimer’s. Our instinct is to plan and to control but there are just some things that we can’t, and children are one of them. Children are always developing and learning, and there is nothing about Trudy which suggests that she will ever stop developing and learning. It will just take longer. I work with a diverse set of children all linked by some form of visual impairment, which, in itself, has such a range. They change from minute to minute, trying out behaviours to see if they fit. We can’t blame ourselves for this. It is how we react to this that counts, showing our children what it is to be understanding, letting them be who they need to be, letting them make their own mistakes and be their own little advocate.

This blog is about how Patrick has kept us grounded throughout the difficult times we have had with Trudy but how life has taken on a normality that might be hard to understand for some. Here are some of the remarkable photos that Jo has taken of our family to let you into a world where difference becomes the norm, to let you see what we see.