Newly Diagnosed

 ....I often thought, "Why can't he stop?"

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.

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 & 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.