The fully revised and updated must-have resource to help you become a supportive and assertive advocate for your child
In print for more than twenty years, The Misunderstood Child has become the go-to reference guide for families of children with learning disorders. This newly revised edition provides the latest research and new and updated content, including:
• How to identify and address specific disabilities, from dyslexia to sensory integration disorder
• New information on the genetics of learning disorders
• Expanded sections on attention-deficit/hyperactivity disorder (ADHD)
• The most recent neurological discoveries about how the brain functions in children with learning disabilities
• Insights about other neurological disorders common among individuals with learning disabilities, such as anxiety disorders, obsessive-compulsive behaviors, anger-control problems, depression, and tic disorders
• Resources, Web sites, and organizations that can aid the treatment process and offer support for both parent and child
Larry B. Silver, M.D., a child and adolescent psychiatrist, is clinical professor of psychiatry at Georgetown University Medical Center in Washington, D.C. Prior to his current appointment, he was acting director and deputy director of the National Institute of Mental Health.
CHAPTER 1: What You Must Know to Understand Learning Disabilities
A learning disability is a neurological disorder. That is, it is the result of a nervous system that has been "wired" a little differently. The brain is clearly not damaged, defective, or retarded. But, in certain areas, it processes information in a different way than it is supposed to. There are other problems relating to brain function that might exist along with learning disabilities. We call these comorbid problems.
It is important for you to know of these related problems. Many children, adolescents, and adults with learning disabilities will also have one of these other problems. These problems, too, must be found and addressed. This book will focus primarily on learning disabilities. However, these related, or comorbid, problems will also be explained.
You might find it helpful to have an overview, or "road map," for making sense of these problems, so I'll provide a general outline here. I'll go into each issue in greater detail in later chapters. Parents sometimes tell me that no one seems to know what is wrong with their child; every professional they see has a different label or diagnosis. Often, the problem is that the child does have several areas of difficulty and each professional focuses on one of them.
For many children, something affects the brain early in development, often during the first part of pregnancy. When this happens, it is unlikely that only one area of the brain is involved. Several areas might be affected. To make it easier to study these individuals, professionals separate out each possible problem area and put a label on it. So, depending on which areas of the brain are involved, the person will have different disorders.
For at least 50 percent of individuals, this developmental impact is the result of the genetic code. The problems run in the family because the genetic code tells the brain to wire itself differently. We do not have a full explanation for the other 50 percent. I will discuss some of these possibilities in Chapter 3.
Before I become specific, let me explain another important theme. Although all brain cells are present at birth, most are dormant. The brain grows constantly by having new wires activated and begin firing. We call these maturational spurts. This growth takes place throughout childhood, adolescence, and early adulthood. Each maturational spurt affects the brain the way installing new software affects your computer; suddenly the computer can do things it could not do before. So, too, with each firing of new wires in the brain, the brain can do things it could not do before. As each new area becomes activated, there are two possibilities. It may be that the wires in this area were not affected prenatally and are wired "normally." Thus, when this area of the brain begins to work, the individual suddenly can do things that were difficult before. However, it is possible that when this area of the brain begins to work, it will become apparent that this area is also wired differently. Only we had no way of knowing that until the area began to work. For these individuals, new problems arise.
This is the reason that some children struggle and struggle, then suddenly master things that were difficult before. Professionals working with the child at this time often get the credit for the change. You've heard the story: Mary struggled with reading for several years. Finally, she got Mrs. Jones as a teacher and within a month she was reading. This is also the reason why some children improve in one area only to have another area of difficulty.
The cortex, or thinking part of the brain, has many functions. For our discussion, I will say that there are four basic functions: language skills, muscle (motor) skills, thinking (cognitive) skills, and organization skills, including executive function skills. Any or all of these areas might be wired differently.
MISWIRING OF THE BRAIN
If the area of the brain that is wired differently relates to language functioning, the person will have a problem called a language disability. The first clue is often a delay in language development. The child is not speaking by age two, or by two and a half or three the child is using only a few words. Some may speak no better by four. If a speech-language therapist works with this child, it might be possible to speed up the development of language. There is a sigh of relief. Then, by four or five another problem becomes clear. This child may have difficulty processing and understanding what is being said (receptive language disability) or might have difficulty organizing thoughts, finding the right words, and speaking in a fluid and clear way (expressive language disability). More help is needed.
As this child enters the early elementary grades, another problem might become apparent. The first task in reading is language-based. The child must recognize units of sound (phonemes) and connect each sound to the correct unit of symbol (grapheme). There are forty-four phonemes in the English language. Each letter has at least one sound; vowels have two sounds (a short and a long sound); certain combinations (sh, th, ch, etc.) have their own sounds. There are thirty-six graphemes in the English language (A through Z and 0 through 9). To read, you must "break this code" by learning what sounds go with what symbols and sounding out words. Many children with a delay in language development and later with receptive and/or expressive language problems have problems learning to read in first grade. Spelling is the reverse of this process. The child must start with the language in their brain and connect it with the right symbols by writing on the page. Thus, many children with reading problems also have problems with spelling.
Some children have a delay in language, receive help, improve, and never have another problem. Others might improve but show up later with receptive and expressive language problems. With help, these problems improve and the child has no further problems. Others progress into reading problems. It just depends on whether the next area of brain activation is also wired differently.
If the area of the brain that is wired differently relates to the use of our muscles, we see what is called a motor disability. For some, the primary problems relate to the ability to coordinate and use teams of large muscles (gross motor skills); such kids have difficulty with running, jumping, or climbing. Others might have difficulty coordinating and using teams of small muscles (fine motor skills). They have difficulty learning to button, zip, tie, color within the line, use scissors, use eating utensils, and, later, use a pencil or pen to form letters and write. Still others might have a broader pattern of motor problems called sensory integration dysfunction. Now, in addition to gross and fine motor planning functions, they might have difficulty processing the information coming from nerve endings in the skin. They might be very sensitive to touch or misread temperature or pain. They also might have difficulty processing information from their inner ear (vestibular system), information the body uses to determine its relation to gravity. Thus, they have difficulty with movement in space or position in space. Which of these many possible motor problems are present will depend on the areas of the brain involved.
If the area of the brain that is wired differently relates to the processing of information for learning, we call it a learning disability. In some ways, this division of the cortex is artificial. If an individual has a learning disability, more than one area of the brain is involved.
In terms of human evolution, the most recent addition to the cortex is the sophisticated area of the brain that acts like the chief executive officer in a company. This area carries out what is called executive function. It orchestrates behaviors. This is the area that assesses a task or problem, decides how to tackle or solve the task, coordinates the necessary activities or functions, continually makes midcourse changes or corrections, and eventually reaches a successful and timely conclusion. If this area of the brain is wired differently, a person has difficulty with organizational planning and with carrying out tasks successfully.
This problem with wiring might extend beyond the cortex. There are connecting circuits within the brain that are often collectively referred to as the area of vigilance. This area of the brain is found in animals and primitive humans as well as in modern humans. It is the area that allows us to be a hunter. It controls the ability to sit very still so that you do not scare away your prey, the ability to track your prey and not be distracted by any background activity, and the ability to strike at just the right time. Picture, for example, a frog sitting on a lily pad. Not a muscle moves or the fly will go away. The eyes track the fly. At just the right moment, the tongue comes out and catches the fly. Some children have problems with the wiring of this area of vigilance. As a result, they might be hyperactive, distractible, or impulsive. We call this disorder attention-deficit/hyperactivity disorder (ADHD).
You can now see why some children have a learning disability. Others might have a language disability or a motor disability. Still others might have ADHD. Many might have one, two, three, or all four of these problems. They have multiple manifestations of the initial underlying problem that resulted in areas of the brain being wired differently.
PROBLEMS WITH EMOTIONAL REGULATION
With the dramatic new methods for studying the brain, other problem areas are starting to make sense. Another group of circuits within the brain is referred to as the regulatory area. This is the area that maintains emotional balance or equilibrium, avoiding extremes. As we study this area, we find that there are many functions that need to be regulated. If any specific area is involved, we will find a problem with regulation of a specific emotion. Such problems usually become apparent in early childhood.
Some people have problems regulating anxiety. They have a history since early childhood of being high-strung or anxious. Over the years the focus of their anxiety may change, but the central theme is a high anxiety level. They might be afraid to go to sleep alone at night. Later they might have a fear of being in part of the house alone or a fear of bees or a fear of something else. Some of these children might develop a full-blown anxiety disorder. Some may have so much difficulty regulating anxiety that the level gets too high and triggers a physical (fight-or-flight) response. They have a panic disorder. They will break out into a sweat; their heart pounds; they feel weak.
Another regulating problem relates to the ability to control anger. These children have been irritable and angry since early childhood. They have always had tantrums. As they get older, they show a specific form of difficulty regulating anger called intermittent explosive disorder. When they get angry they don't just have a tantrum or pout or slam doors. Rather, they have a very short fuse. Sometimes they explode so fast you don't know for sure what caused it. Once they pass over their threshold, they lose control. They yell, scream, curse, hit, throw, threaten. They act in an irrational way and cannot be reasoned with. Sometimes they seem paranoid, saying people are trying to hurt them. This episode may last for fifteen minutes or more. Then it ends almost as abruptly as it began. Once it is over, the child may be tired and want to rest or sleep. They usually don't want to discuss what happened and seem confused about their behavior. Later they might feel remorse about their behavior. These are the "Dr. Jekyll-Mr. Hyde" children.
Some may have difficulty regulating their affect or mood. They seem to have been unhappy or sad much of their life. They are moody or depressed some of the time or all of the time. Some will go on to develop a disorder of depression. A very few children and adolescents may show difficulty regulating not just the down side (depression) but the up side (excitement or manic behavior). This might develop into bipolar disorder (formerly called manic-depressive disorder).
Another pattern of behavior that is part of these regulatory disorders relates to the ability to monitor thoughts and behaviors. Children may have difficulty controlling their thoughts and experience the need to rethink over and over a thought or thought pattern (obsessive behavior). Others feel they must do certain things in a certain way or they will get too anxious. They know "it is silly" but cannot stop. They might need to touch things a certain way or a number of times. They might need to check and recheck things (for example, if the front door is locked or the stove is off). They might need to perform certain patterns or rituals. This disorder is called obsessive-compulsive disorder.
There is one last area of difficulty with regulation that is not related to these regulatory problems but is found to be comorbid with learning disabilities. It is a condition that relates to difficulty regulating certain motor functions. Persons with this problem experience clusters of muscles contracting, causing what are called motor tics. Others may experience the need to say certain sounds or words, called oral tics. These individuals have a tic disorder. If this person has a chronic history of motor and vocal tics and there is a family history of such disorders, it is called Tourette's disorder.
WHAT DOES ALL OF THIS NEW KNOWLEDGE MEAN?
Our brain is a beautifully functioning, fascinating part of our body. It has many functions. If something affects this brain early in development, this impact will cause areas of the brain to develop differently. Depending on which areas of the brain are involved, a person will develop a different problem. We have a name for each.
This road map will help you understand your son or daughter. Or, if you are a learning-disabled adult, it will help you understand yourself. As you read this road map, you will see many familiar trails or sites. It is not unusual for children, adolescents, or adults to have one or more of these disorders. The more one has, the more likely it is that they have even more. So it is not uncommon to find a child with learning disabilities and ADHD. This same child might have a tic disorder or an obsessive-compulsive disorder or be overly anxious or have trouble regulating anger.
The primary focus of this book is on learning disabilities. However, each of these related disorders will be discussed as well. I hope this road map helps you orient yourself as you travel from chapter to chapter.