OK, you're the mother of a TS child and you're full of questions. So was I when my daughter was first diagnosed. You've probably heard all of the bad news already, but let me tell you some of the good news. Maybe it will help you. Maybe it will help your relationship with your child. Maybe it will help your child.
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But I promised you Good News and here it is! |
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Your child is probably above average intelligence! |
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Your child can benefit from your help with education! |
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Your child probably does not need drugs! |
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Your child does not "do these things" because he is rebellious! |
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Your child is probably a terrific friend! |
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Your child's unusual sense of "just right" can be an asset! |
A few final Tips.
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Intelligence and Your TS Child
Isn't it wonderful to know that you probably do not need to worry about your child's intelligence? Because performance anxiety may produce serious manifestations (in fact, probably will!), it will require specialized testing to determine IQ or grade proficiency levels. Don't worry about it. The important thing is not how the system judges your child, but how well he is able to apply what he knows and learns to his environment. Math will probably still cause anxiety and TS episodes, but if you invest ample time, you will find that your TS, learning disabled child can and will learn math concepts. He may learn then much slower than his grade school peers, but the material that he has become comfortable with he will perfect. This becomes an assett to the TS patient and, rather than an area of deficit, the learning can be a positive influence on his/her life. Each success the child experiences tends to lessen the overall performance anxiety and stress he feels and, ultimately, TS episodes become less frequent and less severe. He may do poorly on a written math test but if he can estimate the total cost of a grocery list when he knows the prices, he's doing well. If she can follow a recipe without help and bake a half batch of cookies because you didn't have enough margerine, she's learning, too. If they know how many M&Ms it will take for each of seven kids to have 16 . . . these are the tests of how well your child is learning math. Give them real life examples and see how they do. They suffer no performance anxiety in this context and you can rest assured that they are learning and applying that knowledge.
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Education and your TS child
For those families who have the time and energy to continue to persue reading proficiency for their TS child, the good news is that you will probably be much more effective in helping your child than is his/her school. Because change is difficult for TS patients, series books meet the need for volume in an academic setting and "sameness" reduces performance anxiety. Once interested, the child will work to read all of the available books in a set. Do not worry too much about the reading level of the books, either. Once the child is reading for his own pleasure, his proficiency will improve with practice. Once proficiency has improved, his own interests will lead him to other material. Take the time to help him find books which will interest him, though, even if it means trial and error on your part. Don't get discouraged and don't nag. Your job is to encourage his natural curiosity and steer him in the right direction. Go with him to the library and talk with the child librarian until he is comfortable with this new person as a resource. First names also help to reduce anxiety and make the librarian a friend. An even better solution is to help him find where the books by his/her favorite author are and back off. If your child is interested in computers, help him to learn how to use the self-directed card catalogue computer terminals to find out about specific books. Make sure she has her own library card as soon as she can print her name. This is a wonderful place for a child to experience lots of early autonomy and successes. Read the section above for some tips on helping your child with math. Also refer to the section on drugs for a tip about learning styles.
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Medication and your TS child
It's true! Most TS patients do NOT need medications. With support, a TS patient can learn to control many of his manifestations for a set amount of time. This allows him/her to study, learn, perform or participate in sports without episodes interferring or hindering the performance. Becasue it takes effort and energy, the TS patient must determine for himself which events and for how long he needs to stay episode free. If medication has been perscribed for your child, make sure it is being perscribed for medicallly sound reasons. If your child is an epileptic, is clinically depressed, is schizophrenic . . . these are sound medical reasons to perscribe medication and be meticulous about its administration. There are many others as well. Talk with your doctor, though, and be absolutely certain that the sole purpose of the drugs perscribed is not to to simply make your child fit some arbitrary criteria for "preferred" behavior. Most happy, healthy children are active. Each also has a definite learning style which may conflict with the school/teacher's teaching style. Keeping him docile and compliant in a classroom in no way guarantees enhancing his ability to learn. This is not sufficient reason to medicate a child! Being open and honest with your child and helping him to understand what TS is and is not is the best way to start him on the path to self-regulation, healthy social adjustment and confidence. Do not be overly sympathetic, however. TS is part of your child and she must learn to live with it. You do not want her to acquire a "victim" attitude which could prevent her from achieving all she can.
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Rebellion and your TS Child
Most TS patients are slightly more dependent on their families to reaffirm their worth and value since their tics pose an obsticle to socialization in school. For this reason, they tend to be less rebellious than the average child at home. Most have a normal and genuine desire to be accepted. When friends fail, families build up. It is important to establish this relationship early in the diagnosis, however, and reaffirm to the child that he/she is OK and that your love is unconditional. You can help them to realize that they are intrinsicly valuable. Be sure to respect their needs. It is a wonderful opportunity to establish and maintain open communication with your child which is the key to helping him reach his full potential in all areas of his life. Nagging will always make the episodes worse, however, and it may seem that your child is deliberately disobeying you. Patience is your best ally. No, it's not always easy but you, too, must learn to live with the TS episodes. Always give your child plenty of advance warning when there are things he needs to do. Rushing him will cause stress and stress will cause . . . !
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Friendships and your TS child
For my own daughter, she seems to lack some of the ability to envision herself in the future. For her, it means that she is not jealous our competative by nature. She is skillful at tasks not to be better than anyone else, but rather to be perfect at what she does. She is equally delighted when others excel and receive special recognition. Because friendships, too, must be "just right," she invests considerable time in them and is fiercely loyal. Once her good opinion of another is formed, it is difficult for her to change her mind. For those children lucky enough to be her friends, these traits make her a very faithful and desireable friend.
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Obsessive/Compulsive Behavior and your TS child
The heightened "just right" perception which doctors seem overly concerned with actually present a positive force in the life of most TS patients. Because things in their lives must conform to what is, for them, "just right," they will stay on-task and work for long periods of time to perfect skills for performance. Look for an area of interest which they can concentrate on because they want to . . . music, dance, sports, art. If you do this early in the diagnosis, the child will learn how to control his own episodes for something he loves. You can use this to help them understand that if they have learned to control some aspect of their own lives, they can apply those same skills to other more difficult problems. For my daughter Elizabeth, it was ballet. She taught herself the control mechanisms she needed to learn because they are internal. I could not help her with that process, but once I recognized positive results I could help her to determine how to apply them elsewhere. The TS child becomes dedicated to specific, short term goals which keeps her very organized in most areas of her life. TS kids tend to want to control all areas of their lives and, consequently, those around them. As a parent, you must help them learn discretion in this area. It is important, however, that they be provided with at least one small area which they can always be in control of. For Elizabeth, it is her collection of china miniatures and the exact way they are arranged on a shelf in her room. When she is under pressure to make other things "just right," she can go to her room and vent all of that energy into picking up and replacing each animal until she has worked through that compulsion and is ready to rejoin the family or a social group. Her room is always "off limits" to intruders (including me) unless they are invited in. Fortunately, a touch of obsessive/compulsive behavior and that just-right perception means that her room is usually spotless. If this is not the case for your child, do NOT nag. His room needs to be his "safe place" where he is in control of his entire environment.That more than anything else reduces the internal stress he feels and reduces the effects of TS.
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Responsibility and your TS child
Here are some parting thoughts. You need to help your child take control of his life early. Teach him that there are consequences for misbehavior and that he must take responsibility for what he chooses to do. Once she understands that having TS cannot be used as an excuse, begin turning responsibility for her life over to her. Listen to what your child has to tell you about TS and what makes TS better or worse for him. Use every opportunity to help reduce external stress - your child has more internal stress than most people. Let him work out his stress through TS episodes without comment. If she understands that you accept her, you can use those episodes as a good barometer of her health and well-being. Again, your child knows more about what is happening with his body than you do. Ask him. Do not be critical or judgemental. You have a very special child and you can help her to be happy, healthy and well-adjusted.
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