Newly Diagnosed

A PARENT WITH PERSPECTIVE — Peta’s Story

Hi, my name is Peta Lindsay a past Support Group Co-ordinator for the Tourette Syndrome Association of Australia — a position I have truly benefited from. I have been lucky enough to meet and enjoy the company of some wonderful people, through whom I gain a tremendous amount of strength.

I would like to talk to you today about my background, and how I became a support person, as well as how important it is to have great professionals willing to learn about Tourettes, so that diagnosis and help is a little easier to achieve. Lastly I would like to focus on how essential I feel a support group is to anyone who suffers from Tourettes or has loved ones who live with Tourettes.


NOT JUST A SNIFF

I have three beautiful boys, who are 12, 9 and 6 years of age. The eldest and the youngest have Tourettes.

My eldest son Jay, who I will speak mostly on today, as he has had to pave the way for his younger brother, was diagnosed with Tourettes in grade 3. This was after years of watching a great kid slide slowly downhill. From a child full of confidence, energy and a love for learning, to a child with great anxieties, unexplained irrational fears and panic attacks, as well as an onslaught of what I now recognise as tics. Initially his constant sniff was of course ruled as an allergy by an ear, nose and throat specialist, even though all of his allergy tests came back negative. The doctor informed me that Jay fell into the 1% of cases where they can’t find an allergy, but they “know” they are allergic to something. The sniff disappeared after about 6 months, and of course by this stage it wasn’t allergy season anymore, so this confirmed the diagnosis.

It amazes me how many times I have heard or read about that story. You only have to change the names, and I can guarantee nearly all Tourette sufferers have been through the “ears, nose and throat allergy” scenario, as a sniff is quite often one of the first tics that manifest. Then of course some have been to the eye doctor for that blinking and the paediatrician for the impulsive and sometimes dangerous behaviour.

But unfortunately for Jay, no one could explain why a placid and happy child had started to hate his sport, hate his music, and really dislike life. Why had he started to bite the inside of his mouth to such a severe extent as to reduce his meals to custards, jellies and soups? Why couldn’t he just stop that biting? And why, too, had he taken to licking his lips, as well as stretching his mouth so wide that it bled constantly, and he was badgered incessantly with, “you must stop that Jay, you are hurting yourself”. To which he would always reply, “I can’t stop it”.


I CAN’T STOP IT

Hmmm, I’m not sure how many of you out there are parents, but how annoying is that statement when you are overworked, tired, trying to fit in a million jobs at once and would just love the child in question to do as they are told, for his own sake, of course. Or as a teacher with a class full of pupils, and one child insisting on making that face or that noise, after being asked not to at least 5 times. Jay has been yelled at for a head and arm tic in Choir, because “you really must stand still” and he has been made to stand in the corner of the library for the whole lesson for pulling faces. Unfortunately both were relieving teachers who had not heard of Tourettes. After learning he had Tourettes they were then mortified that they had caused him more embarrassment for something he could not help, a simple mistake, but one that cost the child confidence, and caused ridicule in the playground later.

I was also at fault for causing him more pain. I often thought, “Why can’t he stop? Doesn’t he realise or feel the hurt?”

Of course I now realise he did. I now think, “How naive was I to think he didn’t?” This was one time when mother did not know best!!! I still feel pangs of guilt over my badgering him, and I think this guilt is so strong at first when as parents we learn our child has Tourettes. This is one of the first things that many other parents confide in me, and it is a wonderful thing to say…

“Hey, we all got it wrong, you didn’t know, it’s ok, you know now and that’s what counts”.


THE DOWNWARD SLOPE

In the meantime Jay’s schoolwork had declined to an unacceptable level. He was not getting work completed at school, which was very unusual. He would sit for hours at home and rub out the numbers until they looked just right, often rubbing right through the page, and having to start all over again. I became quite good at chopping out little squares of paper and sticking them over the holey page so that he did not have to start all over again. Or he would be stuck on the one sum, just in case it was wrong, even though he had done the sum right many, many times!

I made an appointment to see his teacher, expecting to hear that he was mucking up in class, or not paying attention, or perhaps he needed a tutor now? I was not prepared for her first words, “Have you heard of Tourette Syndrome?”

My mind raced as I tried to locate the knowledge that yes I had heard a little of this, was it like Autism or was that Aspergers, surely she couldn’t think Jay had such a thing? The teacher went on to explain that she had once taught a child with Tourettes and she believed that Jay displayed a lot of similar behaviour as her past pupil. She also explained that a teacher at the school had a child with Tourettes and she could organise a meeting with her so that I could ask a few questions. I set up a meeting with this teacher for the next day. I left the school grounds with my heart racing and tears streaming down my face. What did this mean? Was she right? How could this be?

I will be eternally grateful to that year 3 teacher. Had she not recognised the signs of Tourettes, and posed the question that perhaps Jay should see a doctor, even if it was just to rule out that he had such a thing, then I am certain it would have taken far longer to gain the help Jay required to move forward with his life. Her limited knowledge of Tourettes was enough for us to seek help.


THE SEARCH FOR HELP

I turned to the Internet for information and instantly gained access to the TSAA web site. If you haven’t already accessed this site I would encourage you to do so. The information is easy to read and understand. For me personally I printed the basic pages out and poured over examples of symptoms and behaviours. All the pieces of the puzzle fitted perfectly once I had read what Tourettes was. I couldn’t believe it had taken so long to recognise it. Now I was scared that someone would tell me Jay didn’t have Tourettes, as nearly every single symptom described on the website was Jay, at one time or other.

Armed with all of my research, I was lucky enough to secure an appointment with a beautiful doctor, a paediatric neurologist in Newcastle. His manner with Jay, as well as his total understanding of Tourettes, meant that from the day the teacher posed the question to the day Jay was diagnosed was only one week. It still amazes me when I listen to others stories of trying to gain a diagnosis for 3 to 5 years, and in some cases even more. It is at these times that the parents are certain their child has Tourettes, but due to lack of understanding of this Syndrome by most professionals, they are made to endure years of mistreatment. Fortunately Jay continues to receive excellent treatment from our family doctor, who also has a great understanding of Tourettes, and I believe an interest in learning more.

For me personally, I received Jay’s diagnosis with such conflicting emotions. On one hand I was relieved that I now had a name for what was happening to my child. I had a starting point from where I could gain help for Jay. But on the other hand this should not be happening. How can my child have this Syndrome? This was not in the plan, when I held that little bundle of joy tight at his birth 9 years earlier. As parents we want only the best for our kids. Initially the guilt of maybe I have done something wrong? Could I have done things differently? What if? And so on is very overpowering. It is utterly essential to have professionals, as well as a support network, there to guide you through this confusing and often very painful time.


UNDERSTANDING AND ACCEPTANCE

I quickly realised that most people perceived Tourettes as the loud, swearing, obnoxious form that had been sensationalised on the Television and in the Movies. At the time of Jay’s diagnosis there was a show on television that was called Ally MacBeal. One of the characters portrayed on this show had Tourettes, and of course it is much funnier to have a swearing out of control character, which although is a symptom of Tourettes, it is by no means the norm. However as this was the only education that most of Jay’s teachers had, I was quickly hit with “don’t you think it’s just your parenting style? Isn’t he just being NAUGHTY?”

Wow, if you want to get a parent’s back up, that’s a great first line. Jay’s year 4 teacher decided that Jay was ticcing for attention, and he could not possibly have Tourettes as he went through long periods at school of not ticcing at all. He did not understand that this ticcing caused Jay great pain, frustration and embarrassment and if he could stop doing it forever he would. In addition to this, Jay’s teacher also declared that Jay was the cause of most schoolyard fights, as he would not back down to a perceived injustice and would therefore insist on defending himself with force, (the majority of children with Tourettes have a very high ideal of injustice, be it right or wrong, and they will hold to their convictions to the end. This is generally perceived by many as stubbornness or even obnoxiousness) and so I spent a lot of my energy trying to educate the staff at the school. I began photocopying material on Tourettes and attend staff meetings. Unfortunately to no avail. We left the school in second term that year, and I am happy to say that although at the last school Jay had been labelled the troublemaker, he has flourished at the new school and fighting has never been a concern.

What is the difference?

I think willingness on the school’s part to be educated and listen to me as a parent. The new school took Tourettes in their stride. They watched the videos I supplied to them, before Jay started at the school. They asked questions and were willing to admit to mistakes made along the way. They did not hide behind blaming the parent or the child. It helped also that they didn’t know the “before” Jay. By this I mean the child who was happy, who didn’t tic, who didn’t do impulsive things or cause anyone grief. Before the age of eight or nine he was never in trouble at school, and so it was hard for the teachers who already knew him as this very good little boy, to understand that he always had this disability, it wasn’t a behavioural manifestation, and that for some reason it seems to appear more readily in the children at around this age group.

I am happy to say that in his new school environment Jay is back at the top of his class, excelling in all areas, and loving life again.

He will be moving into high school next year with confidence. Had he not received an early diagnosis or continued support from teachers, I don’t think this would be the case.

This highlights the absolute necessity of educating schools. With their help and understanding, children living with Tourettes can move forward to positive and rewarding lives.


SUPPORT FROM TSAA

In addition to a positive school environment, with understanding and support, I have also seen the amazing benefits of belonging to a support group for Tourettes. In joining the TSAA, you receive a quarterly newsletter, which informs the reader of current research as well as giving those family members who don’t have Tourettes an insight into Tourettes. I always look forward to my newsletter, reading it from cover to cover the very night it arrives. Also in this newsletter is news and events from active support groups, mainly in Sydney, which was a little far for us to travel. They advertise fun days for the kids, and I always wished we were closer to the groups so that Jay could meet others with Tourettes, with the view of helping him to feel less isolated and different. The support group in Newcastle had become inactive, and so with a little prod from Elizabeth, the Vice President of the TSAA in Sydney, who had the wonderful words of wisdom that, “I would gain immensely from running a support group”, I decided to see if I could raise some interest in creating a support network in Newcastle and the Central Coast.

Elizabeth was full of guidance and ideas on how to get started, and stressed that if only one family came to the meeting, then a difference would be made for that family.

I was extremely nervous at first, but always carried in my mind how I’d love to meet other parents to find out how they coped and what worked for them. I felt that Jay was struggling with being different, a fact which although true I felt that we are all different. All of us have strengths and weaknesses. I wanted him not to hate Tourettes, but to see it as a positive uniqueness, to find the positives, where originally there was thought to be none.

The TSAA has a wonderful purpose. It is to support people with Tourette Syndrome and increase awareness of the disability among medical practitioners, public utilities and the general public.


NEWCASTLE TSAA SUPPORT GROUP IS BORN

Our Newcastle group was started from very humble beginnings, myself and two other mothers met in a park with the kids. We chatted while the kids played. Hours quickly slipped by as we realised how “normal” our children were. We heard ourselves saying such things as, “ahh yes, so and so does that too”, “I remember when he did that tic”; “it was sooo very hard when he was going through that tic, the poor little fella”. We struck a chord straight away, seeing the benefits that “just a chat” had on us already, we promised to meet again soon. After that, very easily, our group grew to over 40 people. Our meetings were relaxed and fun for the kids, who joined in as little or as much as they pleased.

By giving the kids this power they generally tended to sit on the outer edge for the first part of the meeting, really not wanting to be there, but by the end of that first time they have had at least a little fun, and were willing to come back. As parents it is a nice relaxing atmosphere, where you can safely chat with other parents who know exactly what your family is going through, and the best bit is you know that no one is there to judge you or your child, to tell you that you have got it wrong, or he just needs a good smack! We know we have great kids.


NEW FRIENDS AND NEW CONFIDENCE

The children themselves really benefit from and enjoy these get togethers. I know my three boys looked forward to going, even the middle child, who doesn’t have Tourettes, asked when the next meeting would be, so he could catch up with new friends he made. It is wonderful to see all the kids having fun, and joining in. A lot of children with Tourettes struggle to find a group of kids with whom they can be themselves. They skirt around true friendships, as they often misread their schoolyard mates, or simply just don’t fit in. The support group gives the kids a chance to make some friends, increasing their confidence, which will hopefully spill over to the schoolyard.

I know that Jay has come away from the group with a willingness to talk about Tourettes, whereas prior to the support group he was embarrassed by Tourettes, he didn’t want his friends to know about it and hated having it.

When someone asks him now why he does “that funny thing with your mouth”, he simply answers, “Because I have Tourettes”, he then goes on to explain what that means. The support group, and knowing he is not alone, has given him the strength and confidence to believe in himself again. This alone is all I required to convince me that a support group for those with Tourettes and their families is a gift. The long-term benefits cannot be measured. It was with tears in my eyes and pride in my heart that I listened to my son a short time ago tell me that if there was a cure for Tourettes he wouldn’t want it because Tourettes is a part of who he is and he likes who he is.

Early diagnosis, through educating those people important in our children’s lives, as well as a strong support network, I am certain, is the key for a happy and healthy future for our kids.

Also I would encourage further contact with the Tourette Syndrome Association of Australia. If you are not already a member, please consider becoming one. This is a non-profit organization, run by volunteers who have all been touched in some way by Tourettes.