Steps: The inspiring story of a special needs child and a mother's determined quest to break down barriers

By Astrid Eldflug

'Until, perhaps, one day we realise what we first thought was a disaster, the worst thing that could happen, is actually a huge opportunity. And that the apparent tragedy has transformed into a miracle.'

It comes as a shock when a young mother is informed her son has been born with a rare genetic disorder. According to the doctors, Theodor will never learn to walk or talk. But his mother refuses to accept this cruel diagnosis. Together the pair achieve the seemingly impossible. At the age of five, Theodor stands on his own two feet for the very first time.

In an engaging mix of raw emotion and clear objectivity, Astrid Eldflug relates the moving experiences of everyday life with her special needs son. STEPS is a book about unconditional love, empowerment and potential. It is a deeply affecting memoir written with unsparing honesty; a book destined to leave its mark on everyone who reads it.

• Language: English
• Publisher: Books on Demand
• Release date: Jul 3, 2023
• ISBN: 9783757875022

Book preview

Contents

Child’s Play

The Desired Child

The Promise

A Shock

Welcome

A Completely Normal Baby

Certitude

The Lioness

Christmas

Bathtime Fun

The Sixth Sense

A Long Road

Nothing Short of a Miracle

Help?!

A Golden Child

Special Children Need Special Parents

Superdog

Child’s Play

What’s the boy doing?’ The girl is a head smaller than Theodor and throws a questioning glance to her older friend, who’s riding alongside her on a scooter. The pair have been circling around us for several minutes, getting closer with each turn. They eye Theodor with curiosity and grin shyly at me. I smile back at them.

‘He can’t do it yet,’ says the taller of the two, as though that explains everything. It all makes sense to them.

My heart leaps with joy.

‘Exactly,’ I say, because they both understand.

‘He’s just learning,’ I explain with pride.

They nod and scoot off. I can’t see whether Theodor is smiling, since I’m standing behind him, body against body, and guiding him with my movements to another step. My arms are laced under his armpits and, with a special grip, I hold his small hands so I can help him shift his weight from one leg to the other. I gaze down at his feet, focussing all my concentration on the impressions that I’m getting through our physical contact. When will he be ready to take the next step?

His white leather shoes, with the dark blue stripes on the side, look like normal trainers. But they cost more than two hundred euros and, around his ankles, two narrow metal bars can be seen peeking out from under his trouser legs. The custom-made lower leg braces, hidden beneath Theodor’s jeans, weren’t much cheaper than a small second-hand car. With every step, the metal joints of the leg braces glint in the sunlight. We are in Danube Park and enjoying the first warm spring day of the year. The sun is shining and I’m beaming with happiness because Theodor is in the process of walking in a park for the first time in his life. He is six years old.

What comes naturally to children of his age is an absolute miracle for Theodor. He doesn’t develop in the same way as other children. Theodor was born with a rare genetic deletion. He’s missing an important piece of chromosome 5, which is essential for development. 6.5 megabase pairs have been lost in his genetic material, including an important gene known as MEF2C. While, at first glance, this seems like a meaningless combination of four letters and a number, this particular missing gene has changed my entire life. Although the missing piece in the genetic material is so minute that it would be imperceptible to the naked eye, the absence of this one crucial gene has a dramatic impact on development. The genetic deletion is called 5q14.3 microdeletion syndrome and has recently also been named MEF2C haploinsufficiency syndrome.

What sounds like a mathematical code has far-reaching consequences for my son’s development. How would I explain this diagnosis to the two girls?

We’ve often heard children in the street asking their mothers, ‘What does that boy have?’ (That’s if they realise, despite his blond curls, that Theodor isn’t a girl.)

What does my son have? Or, more accurately, what doesn’t he have? Indeed, if the complete MEF2C gene were present on both chromosomes, Theodor would probably be playing football, riding a bike, going to school and learning to read and write like most other children of this age. But Theodor is only just learning to walk. And this is a true miracle for him.

Once, in the playground, I tried to explain to two primary school children that Theodor can’t yet sit on the swing by himself because he has a genetic disorder. By the look on their faces, I could tell they had no idea what I was talking about.

‘Is he sick?’ asked one of the children.

A genetic disorder is not a sickness. But children don’t normally know what a genetic disorder is.

All information about us humans is stored in our genetic material, in a manner not dissimilar to that of a big library. The library is known as the genome, the entirety of our genes. Our hair colour, our eye colour, whether we are tall or small – all of this is written down in 46 books in our body’s very own library: the chromosomes. What’s so special about it is that each book exists in duplicate. 23 chromosomes are inherited from the mother, the other 23 are from the father. In this way, the body protects itself in the event of a typing error in one of the books. Now, you can image that the sentences in these books are made up of many, many words: the genes. Each of these genes represents a certain word; it is, so to speak, the code with which the body can produce a specific protein.

Theodor is therefore missing several words in this enormous library. They were lost long before his birth. Despite having an intact copy of the MEF2C gene on one of the pair of chromosome 5, this single copy is not enough to produce sufficient protein. Some children are only missing a single letter in one of these words. Other children may be missing several letters, or even the entire word. You can think of it like this: if a single letter is missing from a word, the newly created word may no longer make sense. Or it makes a completely different sense than what was originally intended. In the case of a particularly important word, an error might also result in the entire sentence no longer making sense.

If you see the letters har written in a book, for example, you may wonder whether it is an original word that you have not previously come across or whether perhaps an error has been made in writing it, and that it is actually meant to be hare, hair or hairdressing scissors. Perhaps only one letter has got lost, or perhaps several. Depending upon how many letters are missing, the word may no longer make sense. But if the entire word is missing, it may be that the meaning of the sentence as a whole is lost. In Theodor’s case the entire MEF2C gene is missing, which is why he develops differently to other children.

I rarely talk about Theodor being disabled, even though his disability pass shows a disability rating of 100%. But what does such a classification mean? And what other terms can I use to describe Theodor’s development? Some parents say their child has hurdles to overcome. Maybe the child has only one hurdle, or maybe they have many. In any case, it sounds like a lot of work. But it also sounds as though something is broken in this child and needs to be fixed; that something is wrong with this child and needs changing. I would rather use a term that is more respectful.

I also rarely talk about my son having special needs. He has exactly the same needs as any other child his age. He wants to be loved and acknowledged, he wants to play, have fun and to discover the world. Sometimes I say that he is a unique child. Because there is probably no other person in the whole world who has exactly the same genetic disorder. But isn’t every child unique in his or her own way?

My favourite thing to say is that he is a very special child. For me, he is the most wonderful child in the whole world.

Other children are usually fascinated by him. When Theodor walks along Franklinstraße with his walker, the gait trainer, he attracts everyone’s attention. In September, when we took the walker for a spin among the tourists at Lake Tegernsee, you could say that we were a bit of a sensation. Many people stopped and smiled at us. They were amazed at how well Theodor can move in his walker and how fast he can go.

Many people have never seen a gait trainer before in their lives. How often have we heard the question: What’s that?

I usually explain to children that a walker is something like having their own balance bike – a balance bike on four wheels. When the children are older, I ask them if they can still remember the time when they, themselves, were on the road with a baby walker or a balance bike. Most of them immediately understand what I mean. When I tell them that Theodor can’t walk yet, some children feel the need to show me their own skills. They start running, jumping or prancing around next to us.

‘Look at me! I’m already walking!’

How should I react in such a moment? Of course, I tell the child how great they are doing. But I would be lying if I said I wasn’t also suffering at the same time. I would be lying if I said that it doesn’t sometimes hurt me to see how different these children are. How easy everything is for them. They can walk and talk. And they didn’t even have to work very hard to learn these skills. It happened automatically. They grew, got older and just learned. Easy-peasy. Child’s play.

These things aren’t so easy for Theodor. Some days I’m aware the sadness cannot simply be shrugged off. Other days it doesn’t bother me at all. In my eyes, Theodor is a very normal child. I never compare. It’s only when I compare that it becomes clear just how different he really is. It’s only by comparing him to other children that you notice what he would normally do at his age.

By not comparing and instead accepting the child as the unique human being they are, you begin to view them differently. You see the child’s abilities and where they stand in terms of development. It’s difficult for me to imagine Theodor as one of those other children. Only rarely do I envisage what he would like to do if he didn’t have a genetic disorder. What would his interests be? Would he be a quiet or a lively child? Would he climb trees in the forest or play the piano? All these things seemed so important to me before Theodor was born. Today, I have other priorities in my life.

What would it be like if Theodor were more independent? Would he leave the house every morning with his satchel on his back and wave to me once more from the street? Would he make me a little present on Mother’s Day, recite a poem and then give me a moist kiss on the cheek with his little child’s mouth? I have tears in my eyes when I think about it.

When Theodor was born my mother gave me a small booklet with drawings and sayings. Each page shows a mother kangaroo and her baby or joey. One of these drawings particularly touched me. With a mischievous smile on its face, the little joey is sticking its head out of the mother kangaroo’s pouch. The mother looks lovingly at her joey and strokes its head. I’m always just right for you... is the caption to the picture. The kangaroo mother presses a rubber stamp on her belly so that the caption reads, Contents: 100% perfect.

When my mother gave me this book in the hospital during the difficult post-birth period, and I discovered this page while leafing through, I glanced at my baby lying in my arms and gazing at me with his grey eyes. Theodor had the wisest look I had ever seen and he looked directly at me. Out of his nose hung a thin green tube, the feeding tube, and attached to his hands and feet were other tubes and IVs. I didn’t know what to expect or what lay ahead of us. The time that lay behind us had been more than difficult. I didn’t know if the doctors were right in their fears and I didn’t know what was wrong with my son. In my eyes, Theodor was just right. He was 100% perfect.

With the benefit of hindsight, the image of the rubber stamp makes me reflect. As far as the kangaroo mother is concerned, her joey is perfect. But how is the baby stamped by others? What expectations do others have, and what ideas and images do they associate with a baby, when it is clear in advance that he or she is different and has neurological abnormalities?

The doctors had already labelled Theodor as disabled before he was even born. They had very low expectations for his development and there was also very little room for joy and hope. I vividly remember the moment when I entered the delivery room and heard the doctors whispering in the room next door. The protocol already stated that my son was disabled, although this was only an assumption until the genetic examination a few months later. This assumption was based on conjecture, yet it influenced the entire birth process and the medical events immediately after the birth. Theodor was never given the opportunity to enter the world without prejudice. He was stamped as disabled from the outset. And this also determined the constraints that would go along with any disability.

On the one hand, this early diagnosis naturally had advantages, since we could do everything feasible to minimise risk during the birth. We were also able to start physiotherapy just a few days after the birth. On the other hand, this assumption brought many disadvantages in addition to the trauma of the experience. For one thing, the doctors didn’t even want to give me the opportunity to hope for a natural birth. I had to fight with all my energy to prevent a caesarean section from being performed immediately. Only with the utmost willpower was I able to ensure that Theodor could choose his own date of birth.

The doctors’ assumptions and fears had made me so anxious that I was prepared to not see my perfect baby pop out of my belly, but rather I expected a terrifying, monster-like creature. The doctors had actually managed to rob me of all joyful anticipation of my baby, and I welcomed my son knowing that there was something fundamentally wrong with him, even though no one could tell me exactly what it was.

During the first moments after his birth, I never had the opportunity to understand my baby as the miracle he was. I never had the chance to get to know my son without expectations and to simply marvel at him. Someone had already put a black stamp on him in my belly, just like the kangaroo mother did with her joey. The only difference being that the inscription on my belly did not point to a perfect baby, but rather branded my son as disabled in advance.

Children approach Theodor very freely because they are yet to have this preconceived idea of what is normal, and this makes some adults look down in shame when they see us. I was often hurt by these reactions in the past, but now there are also days when I get angry about them. The nicest thing I heard was a mother answering her child’s question, ‘Mum, what’s the boy doing?’ with a simple, ‘He’s going for a walk, just like you!’

Some parents, however, drag their children along by the hands when they start staring at Theodor or asking unpleasant questions. Children have a talent for badgering you with their questions until they either get a satisfactory answer or they can’t think of anything else to ask.

A dear friend of mine also had her reservations when, after a long absence, she wanted to visit us accompanied by her two children. She warned me in advance of the possibly embarrassing questions from her eldest, who is the same age as Theodor and had already seen him on several occasions. She warned me to be prepared for unpleasant questions because the two children had never had anything to do with disabled people. Her words hit me in the pit of my stomach. Recovering, I took a deep breath and answered, ‘So they’ll have the opportunity to learn something. Genetics for beginners.’

In the end, the children did not pose a single question during the entire visit. They accepted Theodor exactly as he is and viewed his behaviour as something completely normal, regardless of whether it was different from their own behaviour or not.

When Theodor sits in his buggy, most people don’t realise that he is special. He’s just a child like any other who is taken for a walk. When we are out and about with the buggy, most toddlers just point at him and proudly say, ‘Baby!’ and their parents praise them for it. Most of these children are much younger than Theodor.

At eight years old, is Theodor still considered a baby despite being twice as big as the tiny tots who scurry past him on wobbly legs? In a way, my son is a baby. He drinks from a bottle, has to be fed and wears nappies. He likes to suck his fingers, has a passionate enthusiasm for baby toys and loves to rock in a baby swing. He can’t sit, crawl or walk on his own. And he’s never said ‘Mummy’ in his life. But, as the two girls in the Danube Park said, ‘He can’t do it yet’.

Theodor has learned so many things that were unimaginable years ago. He has learned to reach for toys, even though his hands were so contorted when he was born that he couldn’t open his fists for three years. He has learned to hold his head upright, even though his shoulders were so cramped a few years ago that his neck was actually invisible. He has learned to turn on his side, even though he hardly moved at all for years. He can eat and drink, despite the doctors immediately attaching a nasogastric tube to him after his birth.

He can play in a sitting and kneeling position and is interested in games and picture books. He loves music and recognises his favourite songs. He can play my old keyboard by himself. He can stand up with my support, and he took his very first steps a year ago. All these things seem so obvious when we see them in other children his age. But Theodor has fought hard for every single step forward. And I have helped him along the way.

A few months later we make another pleasant acquaintance on the street in front of our house. We live opposite a school on a quiet side street near the Old Danube, a former river branch of the Danube. Theodor can now take really good steps and, with my help, every evening walks two hundred metres past our house, down the street to the crossroads, then across the street, past the school and back to our starting point.

On one of these evenings in summer, when we can stay outside until 8:00 p.m. (after that the street lights switch on and Theodor’s attention is drawn to the bright lights like a moth to a flame), two children come running towards us from behind. To begin with I am merely aware of their footsteps coming closer, since my gaze is directed downwards at Theodor’s feet. Only out of the corner of my eye do I see that they are not walking past us, but are obviously watching us walk. I glance up. The girl has brown, curly hair and is about the same height as Theodor. The boy is also the same age. We know him by sight, since he lives in one of the neighbouring houses.

A few weeks earlier, I explained to him why Theodor has to wear lower leg braces when he walks. ‘If someone doesn’t see well, they get glasses. These help them to see. Theodor can’t walk on his own yet. The braces help him so that his legs are more stable.’

The two children start to argue about who gets to walk next to us. To begin with I wonder if they are making fun of us. But their interest seems genuine. Finally, the girl walks on our right and the boy on our left.

I am actually completely focused on Theodor, since I need to have full control over his weight and movements with every step. One moment of distraction and he would slip from my hands. One stumble and he would fall to the ground without braking. He doesn’t yet understand that it is dangerous to fall down. Above all, he doesn’t yet have the necessary body control to prevent or break a fall. He is completely dependent on my support. Nevertheless, I try to give the children some of my attention.

‘He can already walk very well,’ says the boy, impressed.

I am very happy about the compliment. When an eight-year-old child can see how much Theodor’s walking has improved, the progress must be really obvious. The girl has many questions. ‘How old is he? What is his name?’

Theodor is now seven years old.

‘The same age as me,’ says the girl. Her name is Elsa. The boy’s name is Leon. He is already eight.

‘Why doesn’t Theodor go to school?’ Elsa asks.

I explain to her that Theodor has to learn many things that are not taught at school. He can’t sit yet and he can’t walk unaided.

‘But he’s learning now, isn’t he?’ Elsa exclaims enthusiastically. Her joy is sincere.

‘And you’re teaching him, aren’t you?’

While we walk down the street and I simultaneously try to concentrate on Theodor’s steps and the children’s many questions, I tell them about Theodor.

‘Can he speak?’ the pair ask.

‘He can talk in his own language, but he can’t say any proper words yet.’

‘Like a baby? So, like this – ah, mah, ma?’

She’s understood.

‘Look, he’s wearing braces! They help him walk.’ Leon points to Theodor’s feet and is proud that he can explain something to Elsa.

‘And you always practise together?’ she asks me.

‘Yes,’ I say. ‘Theodor can do so many things. But he can’t do them on his own yet. That’s why I help him.’

Elsa tells me that her parents have decided to get a family dog. They’re going to pick him up tomorrow.

‘I’m going to name him FOREST,’ she tells me, spelling out the name, ‘…after Forest Gump. That’s my favourite movie.’

I’m surprised that she even knows the film at her age.

‘He also had to wear leg braces, didn’t he?’ I ask her.

‘Yes, but then he just ran, the braces broke when he ran and then he could walk without braces,’ she explains to me.

‘Like Theodor?’ She looks at me hopefully.

‘He’s so cute!’ she says, beaming at Theodor. ‘He’s just smiled at me.’

I received the diagnosis shortly after he was born. My wonderful baby had a rare genetic deletion that causes severe developmental delay. The doctors handed me a note that described my perfect son in these terms: severe mental retardation, lack of speech and stereotypical movements. They said he would never learn to walk and talk, and sent me home. At that moment, my life as I had known it collapsed. All my wishes, dreams and hopes were dashed. A journalist once asked me where I get the strength for our daily life.

‘I didn’t choose for Theodor to have a genetic disorder,’ I replied. ‘Nobody ever wishes for that. But that’s the way it is, and we try to make the best of it.’

Nobody ever wishes for that. And yet there are people who think a disability is something that fits into one family, but not into another. When a dear acquaintance had just become pregnant with her twins, she told me over breakfast that, of course, they had done all the tests. A disabled child would not be fair to her first-born son.

‘Besides, it wouldn’t fit into our family. We like to travel.’

Theodor and I also like to travel. He loves the sea, and we have already travelled as far as Denmark by car. I know some parents who travel all over the world for their children’s therapies. Dolphin therapy in Egypt or Bulgaria, stem cell therapy in Panama or Mexico, treatments in Germany, Denmark or California, hip surgery in New York. But these are probably not the kind of trips my acquaintance is dreaming of. But who dreams of therapies when they want a child?

I think it is rather naïve to believe you have the power to choose between a perfect child and a disabled child. Even if you had the choice, what would you choose? Some people speak of the quirk of nature, others of fate, some even call it destiny. Was it nature’s experiment or a stroke of fate? No matter what you call it, I can confirm – from my own experience – that you do not have this choice.

Some things are beyond our control. We have no influence over them. We can try as hard as we want to do what is best for the baby in our womb. We cannot prevent things sometimes happening that we don’t expect. Things that, at first, make our world come crashing down. Things that go way beyond our greatest fears. Things that appear so unexpectedly that we aren’t prepared for them, since we can’t think that far ahead. We have no influence over these things. We can only learn to deal with them. Until, perhaps, one day we realise what we first thought was a disaster, the worst thing that could happen, is actually a huge opportunity. And that the apparent tragedy has transformed into a miracle. I think it is more than unfair to not even give a disabled child the opportunity to be perfect. Are perfect and disabled really opposites?

‘He is my easiest child,’ I once heard a mother say, with a twinkle in her eye, about her child with this rare genetic disorder. And yet she has four children.

Theodor is a wonderful child, although our life may not even remotely resemble that of an average family with an eight-year-old. Yet he was exactly the baby I had been looking forward to for nine months. He, and only he, was the baby I had desired. And he is the son who means everything to me.

Having a perfect child always means accepting the child as they are. Only then do you really see the child. And if you manage to see the child as the individual that he or she is, then this child becomes a perfect child, without having to fit into a certain mould.

I had no mould for Theodor. There was no mould in my head that he had to fit into. The diagnosis was still a huge shock that changed my entire life. Although I hadn’t had any concrete ideas about what I wanted from my life with a child, the reality as it finally presented itself was exactly the opposite of any idea I could have had. After all, at the age of 27, I had no experience whatsoever with special needs children. I knew nothing about physiotherapy, orthotics or leg braces, or of the medical interventions that the children of some of my friends and acquaintances had to undergo. The operations that would have to be performed, or had already been carried out, had names I’d never heard before in my life.

I knew about the biological basis of DNA because I had attended the bioengineering course of a part-time technical college after completing my university studies, but I was not prepared for the real-life implications of those subjects we’d had to learn on paper for exams. Instead of buying a football or balance bike for my son, I buy adaptive tricycles, walkers and standing frames.

I’ve heard many parents say, ‘I wish my child had been born with an instruction manual.’

Each child with this rare genetic disorder is so unique that there are no guidelines for their development. So, what should you expect when you receive the devastating diagnosis? Should you believe the doctors’ prognoses and give up all hope? Should you try to hope for the best? Or should you just let yourself be surprised? Many things would be easier in the first few years if you’d been given a user’s manual at birth, with instructions on how to optimally promote your child’s development, despite the genetic disorder.

Theodor made hardly any progress during the first years of his life. The idea that he would ever take steps seemed absurd at the time. He could not even control his head. His hands were clenched into fists, he made no eye contact, he couldn’t roll to the side and, of course, he couldn’t sit up. It was depressing. I then changed my own mindset. Instead of focusing on his obvious limitations, I started looking for his abilities. I started looking for opportunities. It seemed as though there was absolutely nothing he could do. But was it really so? Was there anything he was capable of achieving?

When a child is confronted with special challenges, they need a special mother. So, I became that special mother for my son. I became an inventor, a genius at observing his potential, and I focused on what he could do. Gradually I realised that there were actually a lot of things he could do, I just had to find them and help him find a way to improve them. As I began to notice small changes, I recognised each of these small advances as one of many thousands of tiny milestones. I began to rejoice in each of these small improvements.

I thought, ‘If he could learn this, maybe he can learn something else, and something else, and something else.’

In the beginning, the changes may have seemed tiny. At first glance, they may have seemed insignificant. But when many small changes are layered on top of each other, they can become big changes. Theodor has learned so many things, even though many people didn’t think it was possible. The prognosis you get with the diagnosis of a genetic disorder may be right. But it may just as well be wrong. No one can know in advance how a person will develop. When Theodor was born, many people did not believe in his potential. But I never gave up hope. I always felt that Theodor actually wanted to reach for toys, but that he couldn’t. I always felt that he wanted to sit up, but that he couldn’t. I knew I had to find a way for him to learn.

His developmental journey is unique. It is a long and arduous journey because my son has to work a thousand times harder to make progress than is the case for a child without a genetic disorder. Along the way, we have already experienced many stories. Some of them were funny, others sad. Some of these stories have been the stuff of movies and not unlike tragedies. It was at this point that I decided to write a book about our story. This is our shared story. It is a book filled with hope, love and inspiration.

The Desired Child

The sun shines brightly in the sky. Theodor is wearing blue shorts decorated with yellow sharks. I have concealed his wet nappy in my beach bag. The sound of the wind carrying the salty sea air to our beach spot mingles with the buzz of voices from other bathers to form a soothing murmur. Theodor lies under the parasol in the shade and tolerates my hands relentlessly smearing him with sticky white sun cream. Only when I try to apply the cream to his face does he turn away from me and try to escape my hands. Finally, we make it. I then put his blue sunglasses on him and ensure the side-arms are tucked well behind his ears. Theodor thrashes his legs and pushes the