The Green Leaflet - Selected Articles
Nine Faces of the TS Parent
By: Nadyne Gooding
So they have diagnosed your child with Tourette Syndrome, now what? Chances are you have sought information about this disorder and perhaps attended a support group at a chapter in your area. No doubt you are anxious and probably a little confused and one of your burning questions is, "What does the future hold?" You may want to know how bad the tics will get and what medication is used in the treatment, but through all this, chances are you have not acknowledged your own feelings or emotional state. For many parents, learning there is something "wrong" with their child is a blow to their dreams and expectations. Many of us push our own emotions to the side and kick into high gear trying to compensate and fix what is wrong.
The impetus for this article came from watching parents of newly diagnosed children struggling with their feelings and recognizing that I too was like them at first. Like most people I find it difficult to verbalize my feelings and offer others the comfort and assurances they need. I hope this article will give insight into our emotional baggage and provide us with other tools to aid our loved one afflicted with TS.
TS by the very nature of the disorder is an emotional one. Coping with a child with tics and any numnber of the associated disorders is frustrating and exhausting. Being a parent is difficult enough without adding any disabilities. Richard D. Lavoie in his article Life on the Waterbed: Main streaming on the Homefront that appeared in the Summer 1995 C.H.A.D.D. speaks of the pioneer work of Eleanor Westhad and Sally Smith, who list the following emotional states: Denial, Blame, Fear, Envy, Bargaining, Anger, Guilt, Isolation and Flight. Using these states as a basis, I have made modifications to make them more applicable to TS. Lavoie notes "Many practitioners now feel that the parental reaction to the diagnosis of ADD or LD is more pronounced than any other type of exceptionality." If this is the case imagine how much more parents suffer when their child is disgnosed with TS, Learning Disabilities, Attention Deficit Disorder, Obsessive Compulsive Disorder, problems with sleep, rage and aggression, which are just some of the other problems the person with TS must learn to cope with.
Denial is usually the first emotional stage we experience upon hearing the diagnosis of TS. We may initially be a little shocked when we learn what is involved with Tourette, but it doesn't take long to deny our child or we have it. Family, friends and even physicians can help us stay in this stage by feeding into this mode of thinking. Our own family physician's reaction to the reports from the pediatric neurologist who made the disgnosis was "Are you sure you want him labelled with THAT?" Fortunately I had been doing my own reading and research and recognized with relief that there was a legitimate reason for my son's behaviour and tics. The diagnosis came as a relief for our family, but a reaction from a medical professional such as we had, could have led us to become stuck in denial for a long time. There is a part of denial that feeds the need we have to pretend there is nothing wrong and everything will be all right. The waxing and waning of tics often support this. When the behaviours or tics are at the lowest or have disappeared temporarily we can easily convince ourselves that the TS has gone away, or the diagnosis was wrong. Elaine Fantle Shimberg in her book "Living with Tourette Syndrome" notes "There are parents who keep the diagnosis secret even from the child. They continue to call the tics 'your habits' and excuse vocalizations as a 'cough' and head jerking as a 'stiff neck', and their refusal to share the information with teachers, grandparents and siblings makes it harder for the parents to cope and moredifficult for the child to learn to live with a chronic condition and hamper the efforts of teachers who might otherwise work with the youngster's problems if only they knew what was wrong." Imagine the impact of our denial on the chld who thinks he must be crazy or bad cecause he does and thinks strange things and we don't tell him there is a reason and that he is not at fault!
Flight is a stage that can often accompany denial. It is the idea of jumping from therapy to therapy or running from clinic to clinic, doctor to doctor until someone tells us what WE want to hear. It is not unusual for families to keep searching for a doctor who fully understands TS or will treat with all the associated disorders factored in, but when we panic and are out of control no one gets the help or stability needed.
Blame is such an easy stage to settle into especially when emotions are running high. The genetic aspects of inheritability make it a disorder where blame can easily come to the front, especially when one parent has TS. The other partner can easily get into the blame mode and say, "It's not from my side of the family!" Although this is not a "healthy stage", it is still important to recognize and avoid getting caught up in this if possible.
Fear is a state that all members of the family can experience. Siblings of the TS child may wonder if they will get TS too if it is contagious, or as they get older might question having children themselves, who have the possibility of being born with TS. Mostly, we fear the unknown. With Tourette being a syndrome there is no set progression or predictability. This can especially be frustrating for the family who has a newly diagnosed memben They may fear that TS will become worse and the child will suffer from coprolalia, or never hold down a job, go to university or get married or experience behavioural problems that involve the police or judicial system. Fear can paralyze us and stop us from dealing positively with the situation. The support group in your area can be especially comforting and talking to people with TS helps to keep it all in perspective. At time seeking professional counselling or speaking with a member of the clergy or a very good friend may become necessary. Look to the positive and do not dwell on the negatives, there are always good positive role models who have TS.
By our very nature we humans experience envy and this can be especially true when we deal with TS. We can easily envy other families who don't face the same challenges. We may question why the child with TS cannot be more like unafflicted siblings or cousins. Becoming too envious can result with our with our withdrawal from social situations or friends who remind us of our own predicament.
Bargaining as explained by Lavoie are the thoughts such as "Wait until next year or maybe the [tics] will improve if we move or he goes to camp etc." In this stage there is also a little bit of denial still at work and perhaps more than a little bit of panic. Accepting and facing the challenges' head on and realizing that there are no quick fixes or any actions we can take that will change the situation, aid us in moving on.
Anger is a powerful emotion that can either destroy us or drive us on to accomplish bigger and better things. It is easy to be angry with doctors for diagnosing the TS or for not being able to provide us with a cure. We all wonder, "Why ME?" at some point. We may vent our feelings on family, friends, teachers and even the person with TS. It is necessary to acknowledge our anger when it is out of control. Most parents have felt or even said "If he or she does that tic one more time I'm going to kill him or her!" We should not minimize this, as anger can lead to abuse. Family life is stressful enough these days. Toss in TS, with rage and aggression, obsessions and compulsions, learning disabilities and sensory integration problems with one or more child or adult and you have a volatile mix. Sibling, grandparents, aunts and uncles of TS children frequently get angry due to the loss of friends and family outings that are ruined due to Tourette. Sadly some parents still stuck in denial believe they can make the child stop ticing. Shimberg relates an incident with a pediatrician who told her "I told one youngster that he was hurting his parents with all the noises and movements and that he should cut it out. I gave his parents permission to kick him in the pants when he made those sounds" Newspapers are full of stories of frustrated parents who become abusive and even commit murder. Families with TS need the support of society including organizations such as the TSFC and its affiliated chapters.
With TS it is easy to get mired down in guilt, when we learn that it is genetically transmitted. Even if no other family member is found with Tourette, parents often feel very guilty for somehow having caused this to happen. If one parent has TS then there is an added burden of knowing that you passed it on and you understand only too well what your child will experience. Parents and grandparents often feel extremely guilty for their treatment of the child before the diagnosis was made. We easily berate ourselves for past punishment of the child for tics and behaviours which were out of his control. Often openly acknowledging our feeling of guilt and apologizing for past mistakes can aid in the healing of the whole family.
It is easy to feel isolated when we are angry or depressed. As Lavoie stated it's easy to feel "Nobody else knows or cares about my child, it's you and me against the world ... no one else understands." Given the ratio of diagnosed cases in the general population, families quite often feel this way. Many times when we share the diagnosis of TS with family and friends we hear "I've never heard of it before ." or "Oh yes it's that swearing disease." Very often your child will be the only person with TS at their school and you will be the one to educate and advocate on their behalf. Often getting involved in a local chapter helps dispel this feeling. Attending regional information sessions and national conferences helps us realize we are not alone and there are people all around the world experiencing the same things we are.
It is vital to remember that all members of the family can experience these emotional stages and will probably not go through them at the same time. Whenever situations change in the family and even though we feel that we have dealt with them once, doesn't stop them from surfacing again and again. Tracy Haerle in her book "Children With TS A Parent's Guide" sums it up nicely. "You must first come to terms with your own emotions if you are to be effective in meeting the needs of your child and the rest of your family. This means you must honestly own up to everything you are feeling. Remember you can be your child's most powerful ally if you allow yourself time to grow stronger."