My TS, My Story: The journey from diagnosis to self-acceptance

Part of the Tourette Syndrome Foundation of Canada’s mission is to help individuals affected by TS through programs of self-help. That is why our posts this week will focus on self-understanding, self-knowledge and self-awareness. Today’s post is from Laura and PeterL.

A common question that TSFC staff and volunteers get is how to come to terms with a TS diagnosis. One recent form of this question was: “How do I help a child to come to terms with his diagnosis; he is 8 and is angry about being told he has Tourette Syndrome.”

Who better to talk about the journey from diagnosis to self-acceptance, than a mom and son who have made the journey themselves? Here is an answer to this question provided by longtime volunteers, Laura (mom) and Peter (Laura’s son).

When a child has been newly diagnosed with Tourette Syndrome, perhaps the best advice I could give to parents is not to give up hope yourself. Your attitude will set the tone for your child’s attitude.

Our son Peter, who is now 21, was diagnosed with TS when he was about 10 years old. By that time he was quite aware that he was “different” from the other kids at school, and so in many ways I think the diagnosis was a relief. At least, that is how we framed it to him as his parents.

“Much better to be able to say you have a neurological disorder than to have everyone simply come to their own conclusions!” We tried to look on the diagnosis as a very positive step forward, because now we knew what we were dealing with, and we could get to work learning about it.

One of the first things we did was to get plugged into our local TSFC Resource Unit. There our whole family, including our son, met other kids and adults with TS. A number of the adults weren’t diagnosed until they were in their 30s and 40s, and they told us how lucky we were to be “on the right track” so early, as opposed to not knowing what in the world was wrong and going through years of grief and suffering. A few of these adults have become good friends and excellent role models for our son, because they are such caring and fulfilled adults, despite (or maybe because of!) their TS.

However, I am not going to sugarcoat this message and say our lives have been wonderful. It is an understatement to say that our son’s Obsessive Compulsive Disorder and constant vocal tics have been a challenge. For a number of years, his “neurological storms” wreaked havoc on our home life, until we learned specific skills about how to deal with them, and got him on helpful medication (through much trial and error). He is also now learning to recognize and control his obsessions, compulsions and storms through self-awareness and training, but it’s taken a long time.

Along the way, we realized that he (and many other kids with TS) naturally take a little longer than others to mature emotionally. We could see that as a 10 year old he was at the emotional stage of about a 7-year-old in many ways, and that helped us accept and deal with his behavior in a different light.

We also learned that he needs time and space to get used to new ideas. His “no” actually means, “I need time to think about this.” These revelations came from reading some excellent books (e.g. The Explosive Child by Ross Greene), attending some great workshops (e.g. by Dr. Duncan McKinlay, who is speaking at the upcoming TSFC National Conference), talking to other parents in TS support groups, and going to the always-excellent annual TSFC Conferences as often as we could.

Help your son (or daughter) find his (or her) passion — and then become their biggest fans and supporters (our son is very musical, and derives much joy from his music-making). Be sure to convey to your son that you are in this together and you will be with him every step of the way.

As a family, yes, you will make mistakes… yes, there will be blow-ups… and yes, you will have some horrible moments. But I also know you will have joy, because life with TS is an uncommon road filled with surprises, and it will change you for the better if you let it.

Help your son to see the “bigger picture”, to get outside of himself and his problems. We’ve made sure that Peter has had opportunity to come alongside other people who are living with challenges, so he can see that lots of people — in fact, most people — have dark areas in their life that they have to learn to live with.

Experiences such as volunteering with Alzheimer’s patients at a Senior’s Centre, being a youth leader in a support group for young kids with TS, and helping out at a camp for children with disabilities has curbed his self-pity, as he’s come to realize that there are many others who don’t have an easy road in life.

Peter is a walking, talking opportunity for people to gain understanding of those who don’t fit into the same mold as everybody else. He has become very good at patiently explaining his condition and his symptoms to strangers, and has even spoken about TS at schools and community groups. Self-advocacy is a crucial skill for kids with TS, and it really helps their self-esteem. We’ve encountered a few folks who haven’t been very kind or tolerant, but not many. And mostly we feel sorry for them.

Living with Peter has brought some unexpected gifts to our whole family. We have over the years become quite resilient, and have learned the importance of bouncing back quickly after the bad moments. We say “I’m sorry” a lot in our family… and we say “I love you” a lot too. We take nothing for granted.

Having a good day with no blow-ups or break-downs is cause for celebration. We don’t waste a lot of emotional energy on “small stuff.” So what if we have a few holes in our walls? So what if Peter doesn’t wear socks? There are much more important things in life!

And we no longer make any assumptions when we see a parent having “difficulty” managing their child in a grocery store, or if we see an anxious, twitchy, rather unkempt person on the bus. We know there might be a back-story that we know nothing about, and that perhaps these people are courageously doing the very best they can. Which is all any of us can do.

And now, here is Peter with a few words of wisdom of his own:

Having Tourette Syndrome can feel like an unfair thing. Why do I have TS when so many other people do not have TS? Isn’t my life hard enough already? Why me?

Every person with Tourette Syndrome has to deal with these questions. Some deal with them by remembering that many people with TS have gone on to do great things and be great people.

For instance, one of the first dictionaries, which was used by many, many people for 150 years, was created by a man who had TS. His name was Samuel Johnson, and he was very famous a long time ago. Another famous person who probably had TS (nobody knows for sure) is Mozart. He was a famous composer who created some of the world’s most famous music.

Other people with Tourette Syndrome deal with the unfairness of having it by remembering that there are some benefits to having TS as well as the detriments. A study in 2011 by the University of Nottingham found that kids with TS are better than kids without TS at doing certain physical tasks (motor tasks) that require lots of focus (cognitive control).

Ultimately, it is up to you to choose why you are OK with having Tourette Syndrome. Lots of people with TS get depressed sometimes, but so do lots of people who don’t have TS. Many depressed people have no idea why they feel sad, but at least now that you have been diagnosed with TS, you have something to blame if you get depressed.

But remember: It’s better to focus your life on what makes you happy, than to focus on what makes you sad. So don’t worry too much about having Tourette Syndrome. Many people with TS have fewer symptoms when they get into their teen years, and you might, too. If not, at least I’m sure you will have more control over it.

This blog is intended to get readers thinking and to share information. If you have something to say, comment away! If you’d like to blog on behalf of TSFC, please e-mail tsfc@tourette.ca. If you’d like to blog for TSParentsOnline, please e-mail parents@njcts.org.

** The opinions expressed in this blog entry are those of the author and do not necessarily reflect those of the TSFC, TSParentsOnline or NJCTS.**