Tag: Inclusion

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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This girl can

There are two magical moments that I did not capture with a photo this holiday that shows that this girl really can.

There are plenty of moments that we don’t capture, that people don’t see but which are part of family life with Trudy.

We were recently on holiday in Balmedie, north of Aberdeen. Fifteen miles of beach which the poodle loved, and Patrick and Trudy returned to their roots to explore the sea and the sand, having grown up by the beach. Trudy ran and didn’t stop running, splashing in the waves and squeezing the wet sand between her fingers whilst our baby squirmed at the alien feeling of sand in her toes.

I’ve never seen her run so well, with solid ankles that took so long to straighten and required special boots for support, with straight legs that have become stronger and less hypotonic. She was in her element, literally.

But the moment that trumped all moments and shows how far she has come is when she tobogganed down the dunes. Yes, I said toboggan. We came across some children who were having a party in the dunes. Alex spoke to one of the dads who explained why they all had toboggans, and incidentally why there was one outside our holiday cottage. They were heading to the dunes to slide down them.

My heart was in my mouth as she ran across to the steepest dune, a good 20 metres off the ground and with a 85% gradient down to a puddle in the basin. We all stopped the consider the height, the steepness with our brains which fear and calculate risk so efficiently but stop us from ever doing anything. Trudy, all impulse, launched herself at the bottom of the dune and began to scale the heights. She scrambled against the sand until she got to the top. Meanwhile, we all started thinking she wouldnt get there, that it was impossible for a 6 year old with Down’s Syndrome to manage that. But when she did, Patrick ran up after her, Alex in tow to help her. Did she need help? Not in the slightest. She stood at the top, she managed the risk, watched her brother have a go then slid down on her bottom. Squeals of delight echoed across the dunes. She had achieved so much right then and she didn’t even need us to praise it. She was just glad she’d done what everyone else was doing

This is why this girl can, why so many underestimated young people can despite the assumptions we make based on their perceived ability. The desire to be part of a group can be strong motivation indeed to overcome the greatest of challenges.

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A ‘thank you’ to a community

Almost four years ago, my friends and I decided to publish a book. It started with an innocent conversation in our local bar about a really frustrating book I had just read to Patrick, to help him come to terms with having a sister with Down’s Syndrome. I won’t mention the book to protect the identity of the author, but it was negative despite an overall positive message. The father was in tears because their baby had DS, the sister thought she would never be able to do anything with them, you get the picture. Instead of reassuring Patrick, it sparked a hundred questions that, at the time, I was not ready to answer.

My friends and I talked about a book which would encourage children not to fear difference as it is this fear which has led to so many examples of discrimination in adults. Bridget (writer and illustrator) and I had worked with people with learning disabilities of various kinds, and had experienced firsthand the type of injustice which exists because people are too quick to judge. As parents, we have also experienced the looks and the sideways glances, the uncomfortable questions. We talked about a book which accepted every stage of development. If Trudy wasn’t walking yet, it was okay. She’d get there. If she wasn’t talking, we were all learning to sign to help her on her way.

Bridget went away and wrote a poem which encapsulated everything we wanted to say. It would educate, inform, give top tips for how to explain DS to young children but, above all, present life as normal. We needed photos because we didn’t want a caricature of a child with DS taking away the authenticity of the poem. Jo (photographer) took photos of Patrick and Trudy. We spent many an afternoon trying to get them in the right position! Bridget has then spent the last few years illustrating the poem, in spite of a global pandemic and home-schooling, with beautiful scenes of Portobello, Edinburgh where our children spent the first few years of their lives.

Portobello was the town that welcomed us and took us in. It was where Trudy was born, where a good friend looked after Patrick whilst I went to the hospital with premature labour pains, only to give birth a couple of days later. It was the place that surrounded us with offers of help as we juggled life in hospital. It supported us gently as we got used to having a child who developed so slowly we didn’t know whether she would ever walk or talk. I have so many memories of Trudy shuffling up and down the prom at Portobello before she could walk, exploring the sand in the only way our little sensory being can do and dancing her heart out in her heavy-soled Piedro boots to the live music at the Big Beach Busk.

It seems perfectly fitting that this book was written and illustrated in this place where so much acceptance happened, where we learned that support can take many forms; from the lady in the jewellery shop, the man in the grocery store, Bob the butcher and the library, to name but a few. They know who they are.

So, once again, our community are coming to our aid and a local Portobello graphic designer is helping us put together the digital version of the book so that we can self-publish. On the eve of World Down’s Syndrome Day 2022 and with so much that has happened over the last two years, we celebrate achievement for people who are different and recognise the huge amount of support that families like ours have received from the doctors and nurses who kept our daughter alive to the butcher who never forgot to say hi to her.

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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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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.

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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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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.

 

 

 

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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.

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