Tic, tic boom, is what the life of a parent of a thirteen year old boy with Tourette’s syndrome can feel like.

 It has been a mad dash since we walked in the door. Even before the kids get out of the car they are arguing over who will get to use the downstairs bathroom. We have three bathrooms it’s just that none of them want to be the one who has to walk up the stairs.

Then they bum rush the kitchen for food, with this there is always the same questions. Can I have chips? Can I have some sort of candy? These questions are almost always answered with no, fruit, yogurt or something healthy. Sometimes I think they ask so much just to see if they can wear me down, don’t tell them, but sometimes there pretty close to it.

 The kids pull out all their homework; I ask if they need help with anything. Some nights I can go ahead and start making dinner, this was not one of those nights. Tonight, they both need help. My son is thirteen and in the seventh grade and honestly some of his math homework boggles my mind. I am far from being stupid but honestly I haven’t used algebra in years and was never all that good at it. The things I do understand I am usually told, no not that way we can’t do it that way, the teachers want us to do it this way, which means I am going to have to sit down and read the text and learn how they want it done, then I can start helping him through it.  

Somewhere in here one of their friends will usually knock on the door they are greeted by me saying sorry, this one or that one is still finishing their homework, they will then ask if they can wait around until they are done. Tonight I say no and send them on their way, I am not sure how I am going to keep up with my kids tonight, there is no way I am having a house full of teens. I also wonder when these other kids do their homework or if they even ever go home. Oh well no time to think about that “we” have homework to do.

I sit down to start looking over my sons work and about this time my daughter will call out, I need help. I will holler back, I will be there when I am done helping your brother, and I have to add, finish anything else you have until I get there. If I don’t add this last part she will sit there and do nothing until I get there and still have a ton of homework to do.

By the way, I do have a husband but he works swing shift and this week is his week on afternoons, which essential means I am a single mom this week. I make it through my sons work and then continue to my daughters. We still have spelling to do but I have learned to do this and fix dinner. Honestly there are a lot of nights that I fix dinner and do math, science, social studies or whatever else they bring home; sometimes there are multiple subjects and children all at the same time. It can make for really interesting dinners when you are trying to measure ingredients and do math.

 Dinner time, this is where I try and catch up with my children’s lives we always do high low, which is the high part of the day and the low part. The kids are not allowed to get up from the table without telling me one good part of their day and with a thirteen year old going through the throws of puberty and middle school sometimes this can take a while. Here is where I also get to be a therapist. This one’s best friend didn’t play with them at recess or that one’s friend told someone they liked them. I take their concerns seriously and give the best advice I can. I was a kid once too and remember how heavy the world can feel.

 Once we get through dinner Drama Theater we put leftovers away and clean up. You would think by the way they complain they were cleaning up after an army. Since there are no sports or other activities for them to go to tonight now is when they get to have their free time, you would think they would enjoy it. Most nights aren’t so bad sometimes I even get some quiet time. Tonight is not one of those nights. It is the middle of winter and too cold to go out and has been that way for a while. The natives are getting restless.

 Within ten minutes my daughter complains that her brother promised he would play with her but now doesn’t want to. My daughter is nine and in the fourth grade and even though there is three and a half years between her and her brother they actually still spend time together and I am thankful for this. Well that is until they are at each other’s throats. I call down her brother and they reach a compromise and head back upstairs.

I am feeling pretty good about my mom power that is until a bit later I hear the crash followed by my daughter’s scream of pure rage. I walk to the bottom of the stairs and wait for them to descend and each give me their version of what happened. Then by some magical power I am supposed to know who is telling the truth and make a lofty and wise decision about that will, get it, as the kids say. Tonight I say they both are going to, get it, as they are not supposed to beat each other with swords in the house and of course something got broke. Don’t worry there not real swords just nerf, although there are days…..

  I tell both of the kids to sit and they grumble their way to the couch.  The kids have pushed me to my breaking point. The Xanax I have taken though it has made me tired and a bit loopy has barely taken the edge off. Please god just five minutes peace that is all I ask for.

  Finally the kids are calming down and we cuddle together to watch one of our favorite shows. I know up to this point many parents are right here with me, here is one of the places our lives differ from the average.  This is where the countdown begins.

 Now, if you do not have Tourette’s or are not close to someone who has it you have no idea how busy a body can be. If you have ever sat next to a person covered in biting ants this might give you an idea of what it can be like. I cannot honestly tell you what it is like to be that person I do not have Tourette’s, I do hope someday my son will tell his story.

 Now, to the countdown, First we start with butt tic, leg tic, hand tic, stomach tic, these are some of his current motor tics, when I say tic here imagine a twitch sometimes more pronounced than others.  Let’s now add a clearing tic; this is a verbal tic which sounds like someone trying to sniff their nose when they have a cold, just louder and a bit more repetitive. Then back to the leg tic, stomach tic, add a shoulder and you’re getting the idea. Wait now we have a new one, another verbal one this one sounds like small almost high noise coming from the back of his throat along with a motor tic where he tightens his throat and lifts and slightly tilts his head. This combination of more than one motor and verbal tic makes this a complex tic as opposed to the simple one at a time tics.  This has all happened in about thirty seconds and will repeat indefinitely. We are rocking and rolling now.

In the many years since my son’s diagnoses of Tourette’s I have become accustomed to our rock and roll, we cuddle and jump and jive together. Tonight it is harder, for almost the last year, up until the last couple of weeks his tics have been almost non-existent. They seem to have come back with a vengeance.

The only thing consistent about Tourette’s is that it is inconsistent, especially in children. The tics themselves are constantly changing; frequency and severity also change, sometimes different from day to day or hour to hour. For him though evenings have always been the worse. It makes perfect sense, it is when his mind and body are trying to relax and he has spent his whole day at school trying not to tic, so like a ticking time bomb his body has finally countdown and BOOM!

 I am trying hard to ignore this he is self-conscious enough. I was doing pretty well to until he says, mom it hurts. Here is where I reach the end of my rope tie a knot and hold on.

All I can do is say I am so sorry baby.  He leans his head in my lap and I stroke his face and hair trying to ease his tension because I know that will only make it worse. I want so badly in this moment to take this from him, my heart hurts. I flash back to the first year of his diagnoses and remember the sores on his fingers that lasted for months because of finger tics. I remember the day of his diagnoses in the neurologist’s office when I was given a name “Tourette syndrome,” a small pamphlet and a heart full of questions and fear. He says the words that are hidden in my mind, it’s not fair. All I can say is, no buddy it’s not but I love you and I’m here.

Sometimes all we can do for the people we love is love them and be there and I have to believe that it is enough.

Jennifer Horton

This is just a blip of a day and by no means covers ours or other’s lives that are living with TS.

I thought I would add a bit of information about Tourette’s Syndrome and a link to the National Tourette Syndrome Association

http://tsa-usa.org/

FACTS ABOUT TOURETTE SYNDROME

Answers to Most Commonly Asked Questions

What is Tourette Syndrome (TS)?

It is a neurobiological disorder characterized by tics–involuntary,

rapid, sudden movements and/or vocal outbursts that occur repeatedly.

What are the most common symptoms?

Symptoms change periodically in number, frequency, type and

severity–even disappearing for weeks or months at a time. Commonly, motor tics may be eye blinking,

head jerking, shoulder shrugging and facial grimacing. Vocally: throat clearing, sniffing and tongue

clicking.

What is the cause of the syndrome?

No definite cause has yet been established, but considerable

evidence points to abnormal metabolism of at least one brain chemical called dopamine.

How many people are affected?

As TS often goes undiagnosed, no exact figure can be given. But authoritative estimates indicate that some 200,000 in the United States are known to have the disorder.

All races and ethnic groups are affected.

Is it inherited?

Genetic studies indicate that TS is inherited as a dominant gene, with about 50% chance

of passing the gene from parent to child. Sons are three to four times more likely than daughters to exhibit

TS.

Is obscene language (coprolalia) a typical symptom of TS?

Definitely not. The fact is that cursing,

uttering obscenities, and ethnic slurs are manifested by fewer than 15% of people with TS. Too often,

however, the media seize upon this symptom for its sensational effect.

Do outbursts of personal, ethnic and other slurs by people with TS reflect their true feelings?

On the contrary. The very rare use of ethnic slurs stems from an uncontrollable urge to voice the forbidden

even when it is directly opposite to the actual beliefs of the person voicing it.

How is TS diagnosed?

Diagnosis is made by observing symptoms and evaluating the history of their

onset. No blood analysis, X-ray or other type of medical test can identify this condition. The TS

symptoms usually emerge between 5 and 18 years of age.

How is it treated?

While there is no cure, medications are available to help control TS symptoms. They

range from atypical neuroleptics, to neuroleptics, to anti-hyperactive drugs, to anti-depressants.

Individuals react differently to the various medications, and frequently it takes some time until the right

substance and dosage for each person are achieved. Almost all of the medications prescribed for TS

treatment do not have a specific FDA indication for the disorder.

Is there a remission?

Many people with TS get better, not worse, as they mature. In a small minority of

cases symptoms remit completely in adulthood.

Do TS children have special educational needs?

As a group, children with TS have the same IQ range

as the population at large. But problems in dealing with tics, often combined with attention deficits and

other learning difficulties, may call for special education assistance. Examples of teaching strategies

include: technical help such as tape recorders, typewriters or computers to assist reading and writing and

access to tutoring in a resource room. Under federal law, an identification (“child with a disability”) under

the other health impaired category may entitle the student to an Individual Education Plan.

What future faces people with TS?

In general people with TS lead productive lives and can anticipate a

normal life span. Despite problems of varying severity, many reach high levels of achievement and

number in their ranks as surgeons, psychiatrists, teachers, executives and professional musicians and

athletes.

Tourette Syndrome Association 42-40 Bell Boulevard, Suite 205. Bayside, New York 11361

(718) 224-2999 fax: (718) 279-9596

http://tsa-usa.org email: [email protected]