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You and Your Child

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This volume looks at the physical, mental and emotional development of children with varying degrees of learning disabilities through tracing the development of six young adults from childhood. The case studies are in the form of illuminating commentaries from the parents and provide extra insight into the children's everyday lives. Each chapter also looks at education and schooling in detail, as well as acknowledging the importance of support outside of the family nucleus.

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1. an introduction to learning disability

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1

If you have chosen to read this book, it may be because you have a child who is developmentally delayed or has been diagnosed as having a learning disability. You may have found out about this at or near the time of your child’s birth, or it may have come as a much later realization or following illness or injury. Or you may have a professional interest in children with learning difficulties at all ages and stages.

If you are a parent, you have probably felt somewhat overwhelmed and even confused about what you have been told about your child. Having a child who is different from the child you were expecting is confusing, and at times you may wonder whether you “have what it takes” to cope and to be able to navigate in this new and unknown world.

It may be more difficult for parents of children with learning disabilities to access appropriate help and advice if mental health and behavioural problems appear. Despite the availability to parents of a wide range of books covering child development and parenting, most writers completely omit to mention children with learning disabilities. This omission may arise from a lack of experience with children like ours. So why does this happen, and how can we, as parents, adapt all the different theories they write about for our own use?

 

2. babies and toddlers

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2

A great deal has been learnt about babies in recent years that can be of use to parents in understanding their child and their own role as parents. There are many different ways to think about the physical and mental development of a typical child in the first year of life.

Babies are born with inbuilt abilities: reflex (involuntary) actions such as grasping, rooting, and sucking; senses such as vision and hearing; perceptions of the space around them; and a capacity for learning. These abilities reflect the state of development of the newborn brain, in which the lower parts of the brain are the most developed. In the first year of life there is considerable growth in the upper part, the cortex, and in the number of nerve connections or synapses, and different parts of the cortex begin to develop specialized functions such as communication skills.

A baby’s motor skills develop quickly after birth. One example is in the control of eye movement, which undergoes almost complete development between birth and 16 weeks. Reaching and grasping is apparent in the newborn baby as an involuntary action, and this declines in the first few months of life, to be replaced by voluntarily controlled actions, many of which are quite skilful by 9 months. Newborn babies have a stepping reflex, but this declines within a few months, with most children beginning to take steps under their own control at around 1 year and walking independently soon after. This is often seen as a great milestone, but its timing seems unrelated to future intellectual or other abilities.

 

3. preschoolers

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3

The period leading up to starting school is one of continuing rapid development. Preschool children don’t just learn more skills and knowledge, they learn how to think and act in quite a different way from a 2-year-old. At 5, most children are fluent speakers, in contrast to the two- or three-word utterances of the toddler. Through this increased language they show a developing ability to reason about the way the world works. Three particular skills are developed at this age that help them think about their environment: they learn how to classify or group things (e.g., toys by shape, colour, or size); they can arrange things in a progression (e.g., from oldest to newest); and they can make simple inferences (e.g., if Joe is taller than Sam and Sam is taller than Sarah, then Joe is the tallest of the three). This suggests that by age 5 years, children are able to represent many things mentally, though their explanations of things are often puzzling to adult ears as they still lack many important ideas such as conservation of size or quantity. For example, a preschool child will tell you that when water is poured from a short wide glass into a tall thin one, there is more water in the tall one!

 

4. children of primary school age

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4

The pace of change in 5- to 11-year-olds is less rapid than in their early years—thankfully so, most parents would admit. It is nevertheless substantial, though in ways that are usually less obvious. Often there are periods when children just seem to be consolidating advances made earlier.

To take the most obvious feature first: they do change physically, but much more slowly than in the early years. At the end of this period, many will begin another big change, that of puberty, which we will consider in the next chapter.

There are significant changes in children’s thinking abilities at this stage, and this is well illustrated in the way the school curriculum changes from Years 1 to 6. In infant school, there is much support given to the child’s emotional and social development and to developing communication skills with language and numeracy. Classroom activities consist of straightforward, concrete tasks such as counting and spelling. The wider world is explored through activities that engage the senses directly and may look more like play than instruction.

 

5. teenagers

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The 11 to 16 age group is socially defined by attendance at secondary school or its equivalent. For the young people themselves, it will be characterized by the physical and emotional changes of puberty and adolescence. As in previous chapters, we present a brief summary of the typical mental and physical development of 11- to 16-year-olds, for reference. As parents of a young disabled person, we will know quite a lot by this stage in their lives, about how different they are from this usual pattern of development. There will probably be delays in both cognitive and emotional aspects of their development, which results in distinctive emotional and behavioural responses and causes personal and social difficulties. We consider these later in the chapter.

This is a period of significant change for any child approaching adulthood. At puberty there are important physical changes due to sexual maturity, including the external body changes of hair growth, the development of breasts in girls, and the lowering of the pitch of the voice (“breaking”) in boys. There is also a growth spurt, increased sweating, and the common onset of the teenager’s nightmare—acne! All this is the result of the changing activity of sex hormones, which stimulate the development of the sexual organs leading to the adult ability to reproduce. This is signalled very clearly for females in the onset of the menstrual cycle, while males have the more unpredictable emissions of “wet dreams” and learn to manage having erections. The age at which this happens varies quite widely and has been getting earlier in all industrialized societies, probably due to improved nutrition and health. It begins in girls about two years earlier than in boys. The sex hormones also have emotional effects, which can result in mood changes in girls—for example, at the time of a girl’s period—and impulsive or aggressive behaviour in boys. These changes can have significant impacts on all aspects of young people’s lives, including their body image and social relationships. These impacts differ between boys and girls and between those who mature earlier or later than their peers.

 

6. young adults

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This chapter covers the stage of life associated with the final years of full-time education and beyond, into employment or similar activity. For most young adults, it is a time of choice. Society and the educational system may at last be ready to recognize their maturity and increasing ability to take their own decisions about their futures.

The physical, emotional, and mental developments of adolescence, described in the previous chapter, will typically be completed during this period. For example, some boys may still experience growth spurts and other physical changes until around the age of 18 years. Mental abilities and capacity also continue to develop, particularly with respect to handling abstract ideas, developing thinking strategies, and analysing different viewpoints and conflicting evidence.

By the end of adolescence, most young adults will have developed a clear understanding of their own identity. This will include elements that are quite individual, such as personality and body image, and special abilities—say, in sport or arts. However, much of young adults’ views of themselves will be determined in relation to others. This is the result of the particular social and cultural world in which they are growing up.

 

7. mental and emotional health and behaviour

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7

One recurring theme throughout this book is that each child— but especially each learning disabled child—is unique, and we have to become the “experts” on our own child. We still need advice, but we as parents are the full-time experts: the paediatrician, child psychologist, or psychiatrist are part-time experts for our child, and so they can only see a small part of the story. These “part-time” experts will never have seen a child exactly the same as ours, so we must be the advocate and interpreter. Sometimes child psychiatry services have taken the ill-informed view that if the child is disabled, then nothing can be done, because the impairment itself cannot be cured! This means they will lack practice in applying ideas about how children with learning disabilities gain control over their thoughts and fears and begin to make sense of the real, objective world.

Common problems seen by children’s specialists—such as feeding and sleeping difficulties, separation anxiety, or temper tantrums—have well-rehearsed solutions, but these are harder to apply when a child is developmentally delayed. Specialists will try to understand the history of a particular problem. What exactly happened when? When was the problem first noticed? Did anything change around that time? Did anything happen to upset the baby or child? For example, was there a new babysitter, did it coincide with the birth of a new baby in the family, or was mother unwell? These attempts to understand will require even more patience on the part of the specialist when the child has complex problems that have been ongoing for a long time—exceptionally good memories are invaluable for parents! Keeping careful notes or a diary of day-to-day events is probably the best way for busy parents to remember enough details.

 

8. facing the future

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8

The book has, in the main, been organized chronologically for ease of reference, with the exception of chapter 7 where we tried to give an overview of a developmental approach to understanding personality and mental health. We thought it would be helpful to review what the parents who have spoken about their children say they have learnt about themselves and their children. Five of the children are now adults and enjoy varying degrees of independence: Carol and Patrick need twenty-four-hour care; Kirsty still lives with her parents; Jay lives in a staffed group home; and Neil shares his home with a friend, albeit with a large number of hours of dedicated support. David is still at school.

Most people find parenthood both challenging and satisfying, and we suggest that it is not really so different for parents of young people with learning disabilities. Many of “our” parents seemed somewhat surprised, looking back, to see how much turned out to be not only manageable, but also rather enjoyable and fulfilling. However, Patrick’s parents disagreed:

 

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