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Here are more stories from families living with Tourette syndrome.
Pat, from ast, whose son has multiple diagnoses, writes this heart wrenching description of a time when the use of medications was appropriate, demonstrating
that an optimistic outlook is possible even when things look grim:
Last spring/summer our son was going through a very rough time. We were doing everything we could to just get him through the school year. Once
summer break from school started, we witnessed a horrendous spiral of events that were truly frightening for us at the time. Every time we encounter
this spiral we have to discontinue all medications and begin to titrate another set of pharmacological
"wonders." But before we even began to discontinue his then regime of meds, he was displaying rages that lasted for
20 minutes over seemingly nothing. I remember having to hold him on my lap with his arms crossed over his chest to keep him from striking me and
destroying everything he could get his hands on. I remember the need to continually have him in my sights 24 hours a day 7 days a week. I
remember how he loathed himself and truly believed that the only place he belonged
was dead. I remember the quickness of him leaving the house to run away and finding him just a few blocks from home lying in the middle of the
street waiting for a car to run over him. I remember fearing once again to have to hospitalize him, for I felt in my heart that the last thing he
needed was to be torn from his family during this truly frightening time for him.
One by one as we discontinued his medications we entered into a time where things got worse. Then we began other medications. Slowly. I was told by his pediatric neurologist that we may have to place him in a residential facility for an indeterminate period of time. This was serious business -- his safety. My choice was our son dead or alive.
I know you too have gone through some horrendous times. Times when you were as scared sh&%less as we were. But this summer things are so different for him and for us. He is enjoying the summer program offered by Parks & Rec. with a group of 20 kids grades 1-6. He is a boy full of energy and happiness and love. He's bright, caring, generous, creative, quick thinking, and funny. The medication he is now on does not displace his essence, but allows him to bring forth all his abilities, talents, energy and passion for life. So I guess my experience leads me to believe that medication is not right or wrong in and of itself. It IS and will continue to be a most difficult decision for us. But for now, for this time in our son's life, it seems to be what he needs so that he can learn, create, enjoy, develop and feel loved.
B. Marietta writes on
alt.support.tourette: My son told me about the best story yet on coping with TS... it
made me feel that I've done my job, and done it well....
He was in art class, and doing his classic core tic which is eye crossing and hand twisting, and the teacher stopped class and said out loud in front of 30 kids, "hey... stop crossing your eyes and pay attention to me" - this jolted him out of his tic in a stunned manner, (he said he didn't even know he was doing it, which typically he doesn't know when he is doing this one), and then the class erupted with, "he can't help it he has a tic", which the teacher then asked my son for confirmation on. He told me that the teacher looked a bit embarrassed when he confirmed it and then he turned to look at the class and said with a laugh in his voice, "Was I doing that eye crossing thing again guys?"...
So not only is he using humor to cope, he's engaging the whole classroom in a common mission, in this case to tell the nasty art teacher that she made a mistake... the class loved the opportunity to tell her that *she* had done something wrong, after each one of them hearing for a year how they always do things wrong.
Today, I look at my son, and just for a moment, I have no worries for his future... Marietta
C. An online friend
writes: My son is now "of age". I have been through all the heart breaking moments that I hear described here.
I have many times felt I was totally alone and totally without support and understanding.
The worst part of this disorder, is the "not knowing".
How can a mother make good choices when even the doctors don't know how to make them for sure?
I struggled with this disorder alone for many many years, and feel that together we can find answers both to daily living and understanding of TS.
I made a choice when my son was small, to have certain priorities in his life.
The first priority was to keep the heart intact. If you attend to the heart, and the disorder gets better, you will have a wonderful child.
If the disorder does not get better, life will be difficult for your child, but the heart will shine through.
Our education was not the best, our life was fraught with difficulties. Many people misunderstood. I was called a bad parent, and a permissive parent. There were many very difficult times of extreme anger, and frustration, and very wrong choices which my child made. Truthfully I almost gave up during the teen years. -- But the key word here is almost. Now things are better and in the end, I had a child with heart. Today, I have a wonderful son, with a good sense of humor, who loves his family. He graduated high school, and has a beautiful and warm hearted girlfriend of one year. He has a good job, and is even talking about trying to go back to school at a junior college for some additional education. The key to living with this disorder is to do it one day at a time. Never project your fears into the unknown. After all the future is never known to anyone for certain. Our job is just to make the day that we are given the very best possible for our family, and ourselves and our child.
by IMLaffin@aol.com, an online friend -- an open letter to those
riding the roller coaster of emotions that come with the initial diagnosis of
So many times when a parent receives the initial news that their child has Tourette Syndrome, they are left in a whirlwind of emotions. They may feel lost, trying to keep their heads above the flood of an emotional tidal wave. They may also feel guilty for feeling devastated by the unexpected diagnosis. In the hopes that it may offer some solace to those that may be feeling these feelings, I will share my story.
We had just been given the news that my 4
yr. old son was "demonstrating symptoms of Tourette Syndrome." I
was unaware of my own TS at the time of my son's initial diagnosis and had very
little factual knowledge of TS. I
immediately took a trip to "Denial Island" because I just couldn't
believe my son had TS. Keep in
mind, at this point my only education about TS had been given to me by many of
the daytime Talk Shows of the 80's; needless to say they did not paint TS in a
very positive or flattering light, nor did they offer any explanations or facts
about TS. I began doing research about TS to prove everyone wrong.
My son was away for the weekend visiting relatives with his father, so I
took that opportunity to obsessively research TS. Of course my intent was to say, "Ah ha!
See that? He doesn't have
TS." Well, the more I learned,
the more I read, the more personal experiences I'd heard, the more the pieces of
the puzzle for my own son fit together. There
was no way to deny my son had TS. I
was devastated, I cried, I sobbed. In
a way I was grieving the loss of the "perfect child."
Not that my son was any less "perfect" because of the TS
diagnosis, but the idealized version of my son, the one every parent gets in
their head. You know how you sort
of build up this fantasy of your child's life, growing up, becoming a successful
adult, etc. Well, I will be honest,
TS wasn't in that fantasy <smile>. I
became worried about the same things other parents may be worrying about: what
was to become of my child, the child who now for some reason seemed
"tainted"? How would he
deal with this, how would I deal with it, how would others deal with it?
Well, Sunday my son came home with his father.
When I saw that beautiful little boy, felt his loving arms hug me around
the neck and kiss me hello on my cheek, a lot of these worries began to slowly
melt away. This was the same child I loved before I knew of the
diagnosis: he was no different. This
was the same child that can melt my heart with comments like "I love you
Mommy, I think you are going to raise me real good."
This was the same child that looks so angelic while he sleeps.
This was the same child that can achieve whatever he puts his mind to.
This was still MY child. I
did have to allow myself time to grieve, because I'd created this fantastic
vision in my head of what my child would do with his life as an adult.
Did the TS mean he would never be able to reach his true potential, of
course not. Would he ever have been
able to fit into the mold I mentally created in my head, <as a lot of parents
tend to do when their child is young>, probably not...TS or no TS. Things DID get better, the diagnosis did get more
about TS, the facts about TS, was the key to understanding and lessening my
fears. Talking with others that had TS or that had children with TS
helped tremendously. I was no
longer isolated and alone. I was
not the only one living with TS. Accepting
the diagnosis and living with TS with a healthy, positive attitude and a lot of
humor has helped my son to adopt the same positive feelings about his TS.
How are we now, 4+ yrs later? My son is still a beautiful, incredible child, though he's 8
1/2 now, <don't forget the "and a half," apparently that is very
important when you are 8>. He is
doing well in school; he's funny; he's sensitive. He deals with his TS
incredibly well with a positive attitude and a sense of humor.
He sees no reason why having TS means you can't reach your dreams and be
whatever you want to be when you grow up. His
dream is still of being a Paleontologist when he grows up, I guess that means he
will never leave home, I hear they don't make much money, <grin>.
Don't feel guilty about your feelings, you
have to allow yourself time to digest this diagnosis and learn about this
disorder. At the same time, don't
fall into the trap of becoming stuck and stagnant because of these feelings.
The more you educate yourself about TS, the less scary it seems.
Get involved in your local TSA Chapter if you can.
Things do become "normal" in their own way, after a TS
diagnosis. Remember, life is
cyclical, TS or no TS. You have
your up cycles where things are just going great. You have your down cycles
where things seem at a loss and are stressful for whatever reasons, then you go
back in to the up cycle. This
happens to everyone, disorder or no disorder, this is life.
You will be okay and so will your child, it does get easier.
Eventually TS will become a regular part of life, no longer will it be
the main thing you think about. Just
like anything new it will eventually merge into your everyday life.
E. jspring writes: I am a 26 year old woman with Tourette Syndrome. I first noticed tics at age 8 or 9, but have had mild OCD my whole life. My tics are severe and have been constant for the last 6 years. Luckily, due to my late diagnosis, I have never been medicated. This has forced me to learn to manage my tics and stop or move (to non-visible body areas) my tics in most social settings. I graduated from college with a BS in education, have been married for 3 years and hold a high paying job. In grade school, I had not yet learned how to stop or move my tics. I was harassed by other students and not able to explain why I acted so strangely. Part of the problem was the 7 hours a day seated in one classroom with many eyes on me and my tics. By the time I got to high school, the changing classes and increased self control prevented anyone from knowing I had tics.
If I had been medicated, I don't think I would have ever learned this tic management. This self control has enabled me to live a normal adult life without medication. In not medicating, I keep all of the wonderful aspects of my personality along with the tics. I truly believe that the drugs taken for a number of neurological and psychological conditions do not specifically treat only problematic symptoms, but also the good parts of a person. If there were a pill to cure my Tourette, I wouldn't take it. It might also cure the things I love about myself.
Please submit a brief paragraph to me (click on Contact Me) if you would like to include your child's success story. Please be sure to indicate if you want your real name, e-mail handle, or no name to be used. It may not be possible for me to include all stories submitted. Comments may also be added to my Guest Book.
(Just a note: this website was
designed for newcomers to Tourette's syndrome, to be read through in page order.
Strengths and advantages associated with Tourette's syndrome
Growing up with Tourette's
Syndrome: Information for Kids
HBO Documentary on Tourette's Syndrome
Syndrome Research Article Summary
Tourette's Syndrome - Now What?
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