A The early years
0-19 months
Kesia was born the second child in our family on 15th December 2001. It was a reasonably uneventful pregnancy and labour with the only notable fact being that she always felt “separate” to me unlike my other two pregnancies. At my request and due to her good health, we were discharged six hours after the birth and came home immediately.
From day one, Kesia settled far more easily with her father than with me but was generally unsettled as an infant. For the first fourteen weeks of her life she had no discernible routine and never slept more than about one and a half hours at a stretch. Feeding was very uncomfortable for her, and my experience of breastfeeding her brother for a year was invaluable. She would push me away as she was feeding and only ever had short feeds at a time. She did not suffer with colic, but shied away from close physical contact. Contrarily she hated being in her cot, wanting rather to be carried in an upright position on someone's shoulder and walked up and down a room. She took little or no comfort in cuddles and people, but took an instant and extremely deep attachment to a teddy bear at approximately 2 weeks old: Edison.
At 14 weeks old, she abruptly learnt to sleep and was then tied to a very strict routine of her own making. She slept 13 hours each night and had a couple of naps in the day. Feeding became tolerable to her, though she was quickly fascinated by her older brother Zack and never enjoyed breastfeeding. Sleep and food having been largely “mastered”, family life became a little easier.
Until she was two, Kesia showed a great dislike of people in general. She screamed at the sound or sight of anyone other than her parents and brother and learnt to associate my parents' car on a Friday evening with a family gathering. The screaming would start before my parents had even set foot inside. Other than this she was a very quiet child. She was mesmerised by her brother Zack and spent all her waking hours watching him. She rarely smiled and never played. Looking back, alarm bells should have sounded but we were in the throes of dealing with a little boy who would later be found to have severe Asperger's syndrome, and a quiet baby sister was simply a gift at the time.
Kesia hit her developmental milestones as though she had read the baby manual. At 5 months she was making no effort to sit and would actively resist the normal encouragement one gives to a baby in both sitting, rolling over and standing. Yet at 6 months on the dot she sat unaided. She did not crawl or cruise and preferred to spend the next 7 months sitting in the middle of the room watching Zack. Toys did not interest her, nor did she ever show any particular inclination to play games such as peek a boo. At 13 months, she simply put her hands on the floor, pushed up to standing, and walked. Most of her developmental progress has followed this pattern of holding back, observing then copying.
Communication was an oddity with Kesia as a baby. I had taught Zack some sign language to facilitate the bilingual nature of our family and he was extremely proficient at signing when Kesia was born. He had started speaking but was adept at complimenting his speech with sign to communicate better. Naturally I used signing with Kesia from her birth largely without thinking about it – in parallel with speech, it was the way I spoke to my children. To my surprise, whereas Zack revelled at this way of telling me everything he saw, Kesia hated it. I use the word hate advisedly. She would turn her head away from any attempt to sign to her or even start crying. She made very little eye contact and her facial expressions were very limited - “serious” was the word most frequently used to describe her. She made very little attempt at vocalisation until past the age of one. Her first words came at approximately 18 to 19 months. As with all other progress, she then quickly overtook Zack's speech in terms of complexity. By 22 months her language was quite abstract and she had mastered pronouns which Zack was still struggling with.
The overwhelming experience of Kesia's early years was that she was deeply unhappy about her limited abilities. Once she grasped a pencil, she became frustrated with the lack of precision that her fingers produced. Toys held no interest for her and most of her enthusiasm was for drawing and “writing”.
We lived in a very isolated village at the time, and Kesia did not see many other children. Zack went to school in the mornings and she almost ceased to exist while he was away. Despite my best efforts to engage her, she was happiest when left to her own thoughts. She lit up when Zack was around. Seemingly at odds with her obvious love of him, her behaviour towards him was often quite strange. She frequently “attacked” him, scratching his face deeply and scarring him for years. These “attacks” were unprovoked and came out of the blue. Zack never retaliated. In light of his later violence towards me and his brother, this is remarkable yet he has never been violent towards Kesia. Once more with the gift of hindsight, I see these “attacks” as attempts at affection on her behalf. Zack was the person she loved most in the world, and the one she wanted to reach out to.
19 months
Kesia's younger brother, Tom was born in August. Kesia's response was reserved but otherwise unremarkable. Tom's birth was to mark the beginning of an extremely traumatic childhood for Kesia, however. At 11 weeks, Tom was diagnosed with a cardiac condition and leukaemia and was admitted to hospital with no warning. At this point, our lives were turned upside down and there followed two weeks of complete turmoil. Villagers kindly offered help, and Kesia was most central to this trauma in that she was often left with people she did not know while I made the day trip to the hospital to see Tom (Zack being at school full time at this point). She was totally compliant, though she found these departures easier if the house had an animal – dogs, cats, rabbits, fish – any made good companions. Fortunately this routine only lasted two weeks before Tom came home.
Kesia's first response to our sadness and fear was to try and make us laugh. This was very noticeable as it was not behaviour we associated with her personality, and my instinct was that she was trying to make us feel better. I clearly remember taking her on my knee and explaining that Tom was poorly and that it made Mummy and Daddy sad. That this was alright and would get better, and that it was not her job to make us happy. Immediately, she dropped the “clowning”, gave me an awkward hug and went on her way. Kesia's powers of observation are remearkable for her age. She spends much of her time, to this day, observing people and their reactions. She then adapts her own behaviours to mimic what she has seen – in her early years she was exceptional at doing this and circumstances made her into a wonderful child carer. It must be noted that the “masks” that she dons take huge energy to maintain, and also that very few people ever see Kesia without a “mask”.
Back to England
In December 2003 we moved back to England very traumatically. Tom's leukaemia would need a bone marrow transplant (we later found out that he would avoid the need for it) and a return “home” was necessary. At the time, although Kesia was now speaking quite fluently in French, and understood English completely her speech in English was limited. We arranged for both Zack and Kesia to attend a local playgroup and friends rallied round to help us through the following months.
Unfortunately, Kesia was too young to be at playgroup more than one or two morning sa week, and she was subsequently around for the vast majority of the medical procedures Tom underwent at home.
At the age of two, she became all too aware of how Mummy replaced a naso-gastric tube, how nurses drew blood from Tom on a weekly basis, the many many times each day that Tom vomited violently and the immense struggle to feed him. Quickly she became my greatest ally. Despite her age, she became an active member of Tom's care team: soothing him as I tried to replace the tube, holding his hand and shushing him when needles came out, finding the hairdryer when we could not find a vein and had to resort to heel pricks (the hairdryer makes the blood easier to draw), grabbing towels and cloths as soon as the vomiting started.
Her personal development was hugely affected by Tom's illness. Within weeks of turning two, when we were at the height of Tom's illness and going to Great Ormond Street once a week at least she took it upon herself to be rid of her nappies. To my dismay she started taking her nappies off and leaving them dotted about the house. At the end of my tether a few days later, I laid down the law: no nappies is ok but I do not want any accidents!!! Signs of a mother at the end of her tether. From that day on Kesia was “dry”, and never had an accident. Two weeks later, she declared that she did not need a nappy at night. She has never in her life wet the bed. She also took on her dressing and undressing and most of her personal care. The only thing she required help with was washing and rinsing her hair.
Eating and drinking have always been a difficult area with Kesia and having a little brother who requires tube feeding and vomits many times a day certainly impacted this difficulty which eight years later is a source of considerable anxiety for both her and us as her parents.
Perhaps the lesson Kesia learnt more than any other at this time was that she was “the helper”, “the child who did not cause worry”. In spite of all our efforts not to foist that responsibility on her, she took up the role of carer with enthusiasm, embracing its clear rules and structures with the enthusiasm of someone who would otherwise have found the role of “little girl” rather confusing.
3 years to 5 years
One might have thought that after a year of dealing with a little brother who was fighting leukaemia, life should have settled down. Unfortunately, that is not Kesia's story.
Throughout that year, we increasingly struggled with difficult behaviours from Zack. He started school and was immediately placed on the special needs register, though we did not yet have a clear idea of what his difficulties were. Simply that he was very intelligent, extremely demanding of attention and socially very limited. At home, his rages were becoming more intense and more frequent, and Kesia was often the only person he could be calm with or for. She duly took it upon herself to apprehend the worst of his tempers, and just sit with him when he became too angry. Strangely to all of us, she appeared to be the only person with whom he kept a modicum of control. And so, Kesia became a carer not only for her younger medically challenged brother, but also for her older brother. Her role in the family had a clarity and a purpose that retrospectively gave her great strength with which to face the world.
She enjoyed playgroup, preferring the more delicate games and tasks, and became obsessed with “writing”. She was very clear that the writing was not words, nor was it a story. It was simply “writing”. On the page, this was very regular markings, zig-zags, round shapes and lines approximating fluent handwriting though with no need to copy letters. The “writing” was spectacularly regular in size, and always written on the line. She favoured lined A4 paper, and would fill two to three sheets of A4 paper in one sitting. She loved painting and drawing as well as most craft. She never enjoyed toys, though she slowly began to enjoy some dressing up.
In February of 2006, Tom underwent open heart surgery. At the same time, Zack's experience of school was becoming unbelievably traumatic, and he spent some time at home. Both older children were very anxious about Tom's surgery and it was a tense time for all of us. Fortunately, he made a very swift recovery and life continued on as before. By now he had a gastrostomy button and Kesia had moved on from soothing him during NG changes to often helping out with feeding him (a mobile toddler with a Gtube can be very hard to follow!!). By May 2006, Zack was so traumatised and suicidal at the age of 6, with no hope for educational help as far as I could see that we took the decision to remove him from school. At this time, Tom and Kesia were both at playgroup, and I untertook Zack's education at home. Kesia was due to start school in the September, and we felt that a half term without traumatic trips to and from the school would be of benefit to all. We also hoped that Kesia could then start school without the difficulty of being “Zack's sister”.
0-19 months
Kesia was born the second child in our family on 15th December 2001. It was a reasonably uneventful pregnancy and labour with the only notable fact being that she always felt “separate” to me unlike my other two pregnancies. At my request and due to her good health, we were discharged six hours after the birth and came home immediately.
From day one, Kesia settled far more easily with her father than with me but was generally unsettled as an infant. For the first fourteen weeks of her life she had no discernible routine and never slept more than about one and a half hours at a stretch. Feeding was very uncomfortable for her, and my experience of breastfeeding her brother for a year was invaluable. She would push me away as she was feeding and only ever had short feeds at a time. She did not suffer with colic, but shied away from close physical contact. Contrarily she hated being in her cot, wanting rather to be carried in an upright position on someone's shoulder and walked up and down a room. She took little or no comfort in cuddles and people, but took an instant and extremely deep attachment to a teddy bear at approximately 2 weeks old: Edison.
At 14 weeks old, she abruptly learnt to sleep and was then tied to a very strict routine of her own making. She slept 13 hours each night and had a couple of naps in the day. Feeding became tolerable to her, though she was quickly fascinated by her older brother Zack and never enjoyed breastfeeding. Sleep and food having been largely “mastered”, family life became a little easier.
Until she was two, Kesia showed a great dislike of people in general. She screamed at the sound or sight of anyone other than her parents and brother and learnt to associate my parents' car on a Friday evening with a family gathering. The screaming would start before my parents had even set foot inside. Other than this she was a very quiet child. She was mesmerised by her brother Zack and spent all her waking hours watching him. She rarely smiled and never played. Looking back, alarm bells should have sounded but we were in the throes of dealing with a little boy who would later be found to have severe Asperger's syndrome, and a quiet baby sister was simply a gift at the time.
Kesia hit her developmental milestones as though she had read the baby manual. At 5 months she was making no effort to sit and would actively resist the normal encouragement one gives to a baby in both sitting, rolling over and standing. Yet at 6 months on the dot she sat unaided. She did not crawl or cruise and preferred to spend the next 7 months sitting in the middle of the room watching Zack. Toys did not interest her, nor did she ever show any particular inclination to play games such as peek a boo. At 13 months, she simply put her hands on the floor, pushed up to standing, and walked. Most of her developmental progress has followed this pattern of holding back, observing then copying.
Communication was an oddity with Kesia as a baby. I had taught Zack some sign language to facilitate the bilingual nature of our family and he was extremely proficient at signing when Kesia was born. He had started speaking but was adept at complimenting his speech with sign to communicate better. Naturally I used signing with Kesia from her birth largely without thinking about it – in parallel with speech, it was the way I spoke to my children. To my surprise, whereas Zack revelled at this way of telling me everything he saw, Kesia hated it. I use the word hate advisedly. She would turn her head away from any attempt to sign to her or even start crying. She made very little eye contact and her facial expressions were very limited - “serious” was the word most frequently used to describe her. She made very little attempt at vocalisation until past the age of one. Her first words came at approximately 18 to 19 months. As with all other progress, she then quickly overtook Zack's speech in terms of complexity. By 22 months her language was quite abstract and she had mastered pronouns which Zack was still struggling with.
The overwhelming experience of Kesia's early years was that she was deeply unhappy about her limited abilities. Once she grasped a pencil, she became frustrated with the lack of precision that her fingers produced. Toys held no interest for her and most of her enthusiasm was for drawing and “writing”.
We lived in a very isolated village at the time, and Kesia did not see many other children. Zack went to school in the mornings and she almost ceased to exist while he was away. Despite my best efforts to engage her, she was happiest when left to her own thoughts. She lit up when Zack was around. Seemingly at odds with her obvious love of him, her behaviour towards him was often quite strange. She frequently “attacked” him, scratching his face deeply and scarring him for years. These “attacks” were unprovoked and came out of the blue. Zack never retaliated. In light of his later violence towards me and his brother, this is remarkable yet he has never been violent towards Kesia. Once more with the gift of hindsight, I see these “attacks” as attempts at affection on her behalf. Zack was the person she loved most in the world, and the one she wanted to reach out to.
19 months
Kesia's younger brother, Tom was born in August. Kesia's response was reserved but otherwise unremarkable. Tom's birth was to mark the beginning of an extremely traumatic childhood for Kesia, however. At 11 weeks, Tom was diagnosed with a cardiac condition and leukaemia and was admitted to hospital with no warning. At this point, our lives were turned upside down and there followed two weeks of complete turmoil. Villagers kindly offered help, and Kesia was most central to this trauma in that she was often left with people she did not know while I made the day trip to the hospital to see Tom (Zack being at school full time at this point). She was totally compliant, though she found these departures easier if the house had an animal – dogs, cats, rabbits, fish – any made good companions. Fortunately this routine only lasted two weeks before Tom came home.
Kesia's first response to our sadness and fear was to try and make us laugh. This was very noticeable as it was not behaviour we associated with her personality, and my instinct was that she was trying to make us feel better. I clearly remember taking her on my knee and explaining that Tom was poorly and that it made Mummy and Daddy sad. That this was alright and would get better, and that it was not her job to make us happy. Immediately, she dropped the “clowning”, gave me an awkward hug and went on her way. Kesia's powers of observation are remearkable for her age. She spends much of her time, to this day, observing people and their reactions. She then adapts her own behaviours to mimic what she has seen – in her early years she was exceptional at doing this and circumstances made her into a wonderful child carer. It must be noted that the “masks” that she dons take huge energy to maintain, and also that very few people ever see Kesia without a “mask”.
Back to England
In December 2003 we moved back to England very traumatically. Tom's leukaemia would need a bone marrow transplant (we later found out that he would avoid the need for it) and a return “home” was necessary. At the time, although Kesia was now speaking quite fluently in French, and understood English completely her speech in English was limited. We arranged for both Zack and Kesia to attend a local playgroup and friends rallied round to help us through the following months.
Unfortunately, Kesia was too young to be at playgroup more than one or two morning sa week, and she was subsequently around for the vast majority of the medical procedures Tom underwent at home.
At the age of two, she became all too aware of how Mummy replaced a naso-gastric tube, how nurses drew blood from Tom on a weekly basis, the many many times each day that Tom vomited violently and the immense struggle to feed him. Quickly she became my greatest ally. Despite her age, she became an active member of Tom's care team: soothing him as I tried to replace the tube, holding his hand and shushing him when needles came out, finding the hairdryer when we could not find a vein and had to resort to heel pricks (the hairdryer makes the blood easier to draw), grabbing towels and cloths as soon as the vomiting started.
Her personal development was hugely affected by Tom's illness. Within weeks of turning two, when we were at the height of Tom's illness and going to Great Ormond Street once a week at least she took it upon herself to be rid of her nappies. To my dismay she started taking her nappies off and leaving them dotted about the house. At the end of my tether a few days later, I laid down the law: no nappies is ok but I do not want any accidents!!! Signs of a mother at the end of her tether. From that day on Kesia was “dry”, and never had an accident. Two weeks later, she declared that she did not need a nappy at night. She has never in her life wet the bed. She also took on her dressing and undressing and most of her personal care. The only thing she required help with was washing and rinsing her hair.
Eating and drinking have always been a difficult area with Kesia and having a little brother who requires tube feeding and vomits many times a day certainly impacted this difficulty which eight years later is a source of considerable anxiety for both her and us as her parents.
Perhaps the lesson Kesia learnt more than any other at this time was that she was “the helper”, “the child who did not cause worry”. In spite of all our efforts not to foist that responsibility on her, she took up the role of carer with enthusiasm, embracing its clear rules and structures with the enthusiasm of someone who would otherwise have found the role of “little girl” rather confusing.
3 years to 5 years
One might have thought that after a year of dealing with a little brother who was fighting leukaemia, life should have settled down. Unfortunately, that is not Kesia's story.
Throughout that year, we increasingly struggled with difficult behaviours from Zack. He started school and was immediately placed on the special needs register, though we did not yet have a clear idea of what his difficulties were. Simply that he was very intelligent, extremely demanding of attention and socially very limited. At home, his rages were becoming more intense and more frequent, and Kesia was often the only person he could be calm with or for. She duly took it upon herself to apprehend the worst of his tempers, and just sit with him when he became too angry. Strangely to all of us, she appeared to be the only person with whom he kept a modicum of control. And so, Kesia became a carer not only for her younger medically challenged brother, but also for her older brother. Her role in the family had a clarity and a purpose that retrospectively gave her great strength with which to face the world.
She enjoyed playgroup, preferring the more delicate games and tasks, and became obsessed with “writing”. She was very clear that the writing was not words, nor was it a story. It was simply “writing”. On the page, this was very regular markings, zig-zags, round shapes and lines approximating fluent handwriting though with no need to copy letters. The “writing” was spectacularly regular in size, and always written on the line. She favoured lined A4 paper, and would fill two to three sheets of A4 paper in one sitting. She loved painting and drawing as well as most craft. She never enjoyed toys, though she slowly began to enjoy some dressing up.
In February of 2006, Tom underwent open heart surgery. At the same time, Zack's experience of school was becoming unbelievably traumatic, and he spent some time at home. Both older children were very anxious about Tom's surgery and it was a tense time for all of us. Fortunately, he made a very swift recovery and life continued on as before. By now he had a gastrostomy button and Kesia had moved on from soothing him during NG changes to often helping out with feeding him (a mobile toddler with a Gtube can be very hard to follow!!). By May 2006, Zack was so traumatised and suicidal at the age of 6, with no hope for educational help as far as I could see that we took the decision to remove him from school. At this time, Tom and Kesia were both at playgroup, and I untertook Zack's education at home. Kesia was due to start school in the September, and we felt that a half term without traumatic trips to and from the school would be of benefit to all. We also hoped that Kesia could then start school without the difficulty of being “Zack's sister”.
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