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Tourettes Syndrome

Tourette's Syndrome:
Effective Parenting for Severe Tics or High Impulsivity

This article is excerpted from Chapter 4 of
Tourette's Syndrome: Finding Answers & Getting Help
by Mitzi Waltz.

Most kids with Tourette's syndrome (TS) pose no special challenges when it comes to childrearing. Although having tics can add to natural feelings of self-consciousness, especially during the awkward years of puberty, that stage usually passes quickly if a child has grown up with a strong self-image.

Parents find extra skills invaluable, however, when a child or teen has severe tics, an especially high level of impulsivity, or additional neurological problems. Some kids with TS challenge all the traditional rules of parenting. With help, you can develop the sensitivity and skill you need to cope well with these unique children and their symptoms.

The first thing to do is to recognize tics for what they are: almost impossible to control. Yes, children can often learn to delay or camouflage tics, but it's not possible to stop ticcing for long. Even deliberately stopping for a short while takes a great deal of concentration, and may make it impossible for the child to pay attention or do anything else other than concentrating on not ticcing.

Many people with TS note that the more reaction a tic gets, the more anxiety the person ticcing feels about it. The result is usually more of the unwanted tic, not less. So learn to accept and ignore tics as much as possible. Less anxiety usually means less ticcing.

If a tic harms no one, it can be ignored completely. If it harms no one but is annoying-for example, a vocal tic that always seems to erupt when you're at the movies-work together on strategies for handling it discreetly. Brainstorm solutions for substituting a less obtrusive movement, sound, or word for the one that annoys, offends, or distracts.

Come up with guidelines for where and when your child can relax and "let out" her tics, such as before the movie, after the movie, or during a quick trip to the bathroom. Let her know that you understand this isn't something she wants to do, and that you want her to be relaxed and have fun when she's out in the community, at home, and at school.

Basic techniques

Most children with TS respond well to fairly traditional parenting techniques, the sort of ideas you could pick up in any good parenting class. Basic suggestions for improving behavior include:

  • Catch kids doing the right thing, not just the wrong thing. Studies have shown consistently that for most children, praise is far more motivating than punishment.

  • Employ rewards for positive behavior-but do so judiciously. "Star charts" and point systems are often effective ways to turn behavior around, but if used too often they can actually make good behavior dependent on rewards, or simply lose effectiveness.

  • Let the punishment fit the "crime" by employing natural and logical consequences whenever possible. For example, if your child throws a fit because he doesn't want to wear a coat to school, let him leave without his coat. If he gets cold, that's a natural consequence of refusing to wear his coat.

  • Involve kids themselves in making rules and deciding on consequences for breaking them.

  • Avoid corporal punishment, which can encourage the use of violence as a way to solve problems-exactly the outcome you're trying to avoid.

Parents whose children with TS occasionally have difficult behaviors stress that developing a flexible approach, prioritizing, and understanding are key to coping. Sometimes basic parenting techniques work, but sometimes they don't. Extreme rigidity is not the same thing as consistency.

Brenda, grandmother of ten-year-old Charisse, says putting consistency and kindness together works for her family, although it's not always an easy combination:

"I've found that schedules, routines, and providing an environment where she knows what to expect relieves her stress and seems to comfort her. She very much likes "tradition": Regular mealtimes, bathing times, bedtime routines, and morning activities where she knows what to expect all result in a happier child.

"It's sometimes difficult to choose which behavior to address and which to ignore. Balancing our expectations with her ability to control behaviors is difficult.

"I tend to ignore or try to re-direct her when she is being difficult. I find this quite easy to do, but my daughter, on the other hand, is concerned that Charisse will come to expect this from people in her life, and will not accept that most of the world won't accommodate her in this way. We've agreed to balance this, but continue my way for now so she can enjoy her childhood more, without every little issue being dealt with.

"It's a tough balancing act for the whole family."

Techniques for extreme behaviors

Some children with TS have difficult behaviors every day. Some fly into rages easily, often without regard for logic-and without logic, tactics like natural and logical consequences just don't make a dent. There is good reason to believe that these behaviors, like tics, are something that some people with TS cannot easily control. Of course, the world is going to demand that children learn to control them, and that's when new parenting techniques can help.

If you're coping with rages, self-injurious behaviors, or other extreme situations, begin by examining what circumstances seem to bring on the most difficult behaviors. If you can pinpoint at least some of your child's triggers, you've made the first step toward preventing blow-ups.

Maria, mother of 4-year-old Jesse, has identified triggers and learned to head off trouble by avoiding them whenever possible:

"We do see extreme agitation and rages, usually when he is striving to do something perfectly, yet rushing because of his ADHD. Add his poor fine-motor skills, and he is set for the highest frustration. For example, trying to put on his socks and his shoes. When he can't get his fingers to work as fast as he wants them to, he blows up.

"If he ever says he is frustrated, even once, that's a sign that he must be removed from the situation. If he says, "I'm frustrated" three times, he will blow up, and this will be followed by twenty minutes of continuous ticcing.

"We also can't mention good things to him in advance. If I say, 'We will go to grandmother's tomorrow,' he will immediately want to go now, and if that is not possible, he will rage. I can't mention a toy if I don't know where it is, because once he hears the name he will want it-and if I cannot find it, he will rage."

A number of parents interviewed for Tourette's Syndrome strongly recommended the parenting ideas presented Dr. Ross Greene's book The Explosive Child. Greene relies on the latest research in neuropsychiatry, which has documented what parents of kids with TS and related disorders knew all along-sometimes their kids really are different. Their difficult behaviors are not deliberate attempts to manipulate adults, but reactions to out-of-control emotions, difficulty in processing some types of information effectively, and poor self-control.

Greene points toward built-in inflexibility as the basic problem, suggests many strategies for defusing conflicts, and provides several different strategies for helping children who are "chronically inflexible" and "explosive" learn better approaches to difficult situations. If a child's developmental skills for dealing with frustration appropriately are delayed, he argues, natural and logical consequences, chart and reward systems, and other typical interventions are unlikely to work. Instead, parents should examine what triggers rages, eliminate triggers where possible, and teach skills that help the child build flexibility and tolerance for frustration.

One of his best-known ideas, the "basket system," is especially helpful for families who need a new approach to handling discipline creatively. Parents must assert their authority where issues of safety are concerned-these are what Greene would call "Basket A" issues, areas where there is no flexibility at all. Beyond these areas, issues might fit into several other "baskets," depending on how flexibility parents feel comfortable with. So while protecting siblings from hitting is a Basket A issue, picking up your socks right now might be a Basket B or C issue.

Experienced parents have come up with many ways to handle rage behaviors. Lucy, mother of 12-year-old Richard, tells some of her strategies:

"The best approach, in my experience, is to try to avoid the rage starting in the first place. Start making some notes about the times when his behaviors escalate, and look for commonalties.

"Are certain times of the day harder for him? Then try to avoid changes in routine during those times of day. Is he better after he eats? Then feed him before attempting a change in routine.

"Are there any little 'signs' in the hour or so preceding the rage/bad behavior to clue you in that it is coming? If so, try to steer him to whatever is calming for him, - and teach him to notice these signs also."

If the rage is already present, then the most important step is to get him somewhere where he cannot harm himself, others, or property. Prepare for this stage before, it happens."

Lucy describes how to set up a "safe place."

"Set up a 'safe place' in your home, a place where he can go and not be at risk to himself or to others. We all say we don't have such a place in our homes, but as a wise therapist once pointed out to me, you can't afford not to have such a place! It may be a bed, or a walk-in closet, or a bathroom, or a corner of the garage. Agree with your child in advance where his safe place will be and what will be in there. Then, when he starts to lose control, tell him to go there until he is in control again. If he refuses, bodily take him there. Teach him to go there on his own, and praise him when he does go there on his own.

"Be sure there is nothing in this one place that he could use to harm himself. Do put comforting items there-a blanket, a pillow, some small soft objects that it would be okay for him to hit or throw, etc.

"Richard has two 'safe places': the top bunk above his own bed, and his walk-in closet. The top bunk has a pillow, blanket, and lots of stuffed animals. He can go snuggle up there by himself, or he can throw the stuffed animals on the floor of his room (he will later have to pick them up). In the closet is a light switch so he can choose to be in the dark or in the light, a punching bag, a pillow, a blanket, a basket of small toys, etc.

"Stay calm during the rage-it's not easy, but you must try to step back and not take personally what he says or does during the rage. Your job during the rage is to keep everyone safe; you can mother him again after things have calmed down. Don't try to reason with him or argue with him during the rage; he can't respond with logic at that time.

"If Richard starts to do something dangerous or make threats, I tell him in a very controlled, even voice, 'I will not allow you to harm yourself or to harm anyone else. If you harm any property, you will be responsible for repairing the damage or paying to replace it.' Sometimes I say this two or three times in a row, in a very controlled fashion."

Some people can use a "safe place" for self-calming, others choose meditation, strenuous exercise, or substituting an acceptable aggressive act, such as bopping a punching bag, for unacceptable outbursts.

Lee, mother of 13-year-old Joseph, tells about some of her strategies:

"Joseph has had trouble with extreme agitation and rages. These are more likely to occur if he is in an unfamiliar situation or with people he doesn't know well, or is hungry, rushed, or tired. Also, this is much more common when his OCD is waxing.

"When he is starting to rage I will ask him how I can help. Usually he wants me to stay with him, but not too close because he doesn't want to hurt me.

"We keep old phone books around that can always be torn up. A box of tissues is good in a pinch. Sometimes I line up old, plastic flowerpots on the railing of the deck for him to knock off. We fly by the seat of our pants a lot!"

The more helpful options you can come up with, the more likely you are to have the right intervention available when it's most needed.

The Southern California chapter of the Tourette Syndrome Association (TSA) worked with McDonald Productions to produce a video, "Bending the Rules," that does an excellent job of presenting fresh ideas on effective discipline for kids with TS. This video is now available through the (TSDA), The national TSA has produced a groundbreaking pamphlet on neurologically based rage behaviors, which families can use as a starting point for talking with schools, doctors, and therapists.

Getting expert help

You know your child best, and are more likely than even the best "behavior expert" to recognize what triggers rage and other difficult behaviors, and what works to help your child regain control. However, when your best efforts aren't doing the trick, it may be helpful to call on expert services.

Tourette Syndrome Association, Tourette Spectrum Disorder Association, and other organizations hold conferences and workshops that often feature speakers who present ideas about managing difficult behaviors. Help may also be available through your school district, county mental health department, or a therapist, psychologist, or psychiatrist. In some cases, your health insurance may pay for this assistance, including parent training as well as direct work with your child.

If you find that immobilizing your child is sometimes necessary (physical restraint, or "holds") for safety reasons, be sure to seek out training in appropriate physical restraint methods. Improperly applied holds can cause injury or even death.

Non-violent crisis intervention training should be available through a nursing education program, or possibly at a local hospital, as nurses and other health-care personnel need this type of instruction to protect themselves from dangerous patients. Crisis Prevention Institute Inc. also sponsors this type of training around the country.

Resorting to physical restraint should not be a common occurrence, however. Using holds frequently is a good indicator that you need to add some new ideas to your bag of tricks, or that it's time to call for additional expert help.

When rages and other extreme behavior problems are chronic and self-calming strategies are not working, medication or medication changes may be recommended. If your child's safety or the safety of others is at risk, taking this strategy under consideration may be wise, even if your child does not have severe tics.

Public dilemmas

When rages occur at home, you have the advantage of knowing the environment and having the privacy needed to deal with the situation as you see fit. When meltdowns occur in a public place, such as a supermarket or public park, it's not so easy. Your first concern must be safety. If that means physically restraining your child, that's okay. However, you may attract unwanted attention from people who want to berate your child, or even you. Having a pre-printed card available to hand off to these people while you try to get the situation under control can help.

Medical identification cards are available from the national TSA, or you can print up your own at a copy center. These cards can also be helpful if your child has socially unacceptable tics, such as coprolalia, that could attract unwanted attention.

A card's text might read:

My child has a neurological disorder, Tourette's syndrome, that causes uncontrolled movements and sounds, and that sometimes causes behavior problems. If you would like to know more about Tourette's syndrome, please call the Tourette's Syndrome Association at (718) 224-2999.

Occasionally a bystander will misunderstand what's going on and call the police. At times like these, having a card on hand can really help.

In some areas, the police department maintains a registry of persons with disabilities whose behavior could be misconstrued as threatening or so odd as to require police attention. Signing up with a registry gives the police solid information to work with before officers respond to potentially confusing situations, whether they occur in your home or in public.

Parents who are aware of the early signs of an impending meltdown can often remove the child from the situation, which is usually the best strategy. It's not very convenient if you're in the middle of grocery shopping, but dealing with a public tantrum is even less convenient. Retreating to your car, a nearby park, or another quiet place can give your child a chance to regain control before he loses it entirely.

Once a rage has actually occurred, it's essential to give the person time to recover. It's also important for the person to make reparations for his or her behavior, if possible. If you find that certain situations often or almost always set the stage for rage, see if you can find ways to identify the root problem. Older children may be able to tell you exactly what it is that sets them off, but with younger children your powers of observation will have to suffice.

Once you've identified the root problem, you can choose to either address it or to help your child avoid the situation. For example, if you notice that long shopping trips are frequently the setting for difficult episodes, solutions could range from taking short trips to just one store per day rather than a mall or large department store, both environments that are overwhelming for some kids; avoiding stores that use flickering fluorescents or loud music, if those are a problem for your child; bringing along snacks and an activity bag if the triggers seem to be hunger or boredom; or doing your shopping without the kids.

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