Editor and Founder Vrinda Pendred discusses what it’s like to be a parent with Tourette’s Syndrome – especially when your child inherits the condition
As promised, my goal tracker app shot up an alert this morning to say it was blogging time, and here I am!
So far in this series, we have discussed what Tourette’s is, causes and triggers, medications (including anti-depressants), alternative treatments, such as diet and vitamin regimes, and even more extreme measures, the grief process, being diagnosed, bullying and teachers, surviving adolescence, and how Tourette’s affects self-esteem. If you missed any of these articles, please click one of the links above to read them.
Today, I’ll be talking about what it’s like to be a parent with Tourette’s Syndrome – especially when your child develops tics / Tourette’s themselves.
Birth and Infancy
This is a bit of a heart-breaking subject, for me, which I have to break in two parts. I’ll start with the birth of our eldest son, back in 2006. I was just 22, going on 23, and my tics were at their peak. They had never been (and never were thereafter) as bad as they were during that time. I expect due to hormones (something we will discuss next time), after the birth all I wanted was to be unconscious to escape the living hell in which I now found myself.
Every time I tried to hold my beautiful new baby, my hands seized up, consumed by a terrible electric need to press my fingers as hard as I could into my baby’s body – often his head, I think precisely because it was the softest, most fragile and important part of this new developing creature over which I suddenly had so much power.
There was an element of OCD in this, too. It is extremely common for new mothers to develop symptoms of post-partum Obsessive-Compulsive Disorder. The sheer thought of how responsible you now are for someone’s whole being can lead to some awful thoughts. Fears of hurting the baby can quickly morph into visions of actually doing the very things that would hurt him, and those visions can be so intense that you might worry you’re actually going to do manifest them.
Naturally, you never would. That’s why the visions are so frightening and terrible, maybe even sickening – because they conflict so strongly with your sense of ethics and love for the child. But fear and logic have never been good friends. Fear is a bully that beats logic out of the schoolyard, and before you know it, you’re in a state of perhaps physical panic at the thought that you might actually want to harm your baby. Worse still, you’re terrified to admit this to anyone, out of yet more fears, this time that someone will decide you’re unfit to be a mother and take your baby from you (which I’m sure used to happen before we understood as much as we do today about psychology). All of this means it is common to suffer in silence.
I went through this with both my children. Thankfully, I was educated enough on the subject to understand what was happening and know this did not make me an unfit parent. Unfortunately, Tourette’s is not as easy to control, although it often seems to have similar triggers to OCD. I didn’t just have visions of hurting my son – my hands would feel a physical craving to press and squeeze him in ways that really would hurt him.
I tried to do it gently enough that it would feel affectionate. But my brain didn’t accept that. I had to find other objects to press (so hard that my fingers went white) as a substitute, but even that didn’t feel right. It got so bad that I often had to hand my son over to my now-husband because I didn’t feel able to handle our baby safely. I can’t adequately express the depression that came over me in having to accept that sometimes I just couldn’t hold my new son.
The Toddler Years / Second Child
All of this passed once our son was older and sturdier, more solid and less fragile. It also wasn’t quite so bad with the second child, born when I was 33. My tics had settled much more by that age and my body was not subject to quite the same hormonal fluctuations I experienced when I was younger. I’m not sure if this is 100% down to age, or if it’s also because I changed my entire diet and lifestyle over the years. For example, I cut out all cow milk about two years before our youngest was born, which I’m certain had an effect of some kind.
The OCD was just as bad with both boys, regardless of my age, although it got better as they grew more independent. Even so, this lasted many years, and I would advise any parent in my position to avoid the news if they’re struggling with this kind of thing. As soon as you have a baby, it seems all the headlines are about the horrors that can come to small children. Some still haunt me 14 years on.
With both our children, there has been a sad sense of wishing their younger years away because I found them so hard to cope with. I don’t feel I have ever been able to enjoy the pregnancy / new parent experience in quite the same way as many other new mothers – but I’m sure many other women would say the same, even without Tourette’s. Much of that may simply come down to modern life and cultural pressures making us feel we’re failing to meet expectations. Even so, Tourette’s and OCD added a fear factor no other mother I know is able to relate to.
When Your Child Develops Tourette’s Himself
Statistically, most children start showing symptoms of Tourette’s between the ages of 5 and 9. For example, I was diagnosed at 7, and showed signs of it much earlier. So, imagine my shock when our eldest son began ticcing for the first time at the age of 10.
I confess I had that age statistic in the back my mind pretty much since our son’s birth. Part of me watched him like a hawk for any sign that he might have inherited my condition. When he turned 10, I was very openly relieved he had apparently escaped my personal fate. Then, some months later, I saw his first tics – and I denied them. I rationalised them with other possible explanations, because I couldn’t accept what I was seeing. Finally, he broached the subject, as they were causing him a great deal of discomfort, and I could deny it no longer.
I went through the grief process all over again, but this time over my child. I had got used to living with it and that had somehow become okay. To watch my son go through it was another thing. I couldn’t stand the idea that he was saddled with this incurable condition that I knew would impact every aspect of his life, cause him pain, and potentially prevent him from doing many things he formerly loved.
So much worse was the idea that I had done it to him – I had passed it on. I felt inundated with a deluge of guilt that would not abate. I spent a long time begging (whom I don’t know) for it to pass, just for him – for it to be a temporary response to stress, perhaps. I pleaded for it not to get any worse than it was. I felt furious (with whom or what, again I don’t know) that this had happened to my child. I kept thinking my beautiful boy was now marred by this awful thing and there was nothing I could do to stop it from happening. I went through a similar experience when he briefly needed eyeglasses (another thing I felt I had passed onto him). I couldn’t stand the thought of putting something over his beautiful face. It all felt so wrong. I was utterly powerless to protect him from the cruelty of genetics.
As it happens, I think the tics were largely brought on (or at least worsened) by stress. He was going through an extremely difficult time, in school and in life, with his Year 6 SATS coming up and a new brother on the way. When he moved up to secondary school later that year, his tics got worse still. Over time, he was placed on ADHD medication for about 9 months and they made the tics unbearable; he could hardly function. We took him off the medication and the tics seemed to settle. These days (touch wood), I forget he even has Tourette’s. I have sometimes wondered if it simply vanished, but occasionally he will mention that the tics are giving him a hard time, so I guess it’s still there. Even so, he’s nothing like I was at his age, so I guess someone listened to my pleas after all.
As I write this, his brother is 3 years old. This time around, I have forgotten to watch out for things like tics. I’ve learned the value of just letting life play out as it will. Otherwise, I’ll waste these years in a state of stress and anxiety, rather than cherishing this brief moment of time while I have it.
‘He’s so lucky to have you as his mother!’
With our eldest, I have lost count of how many times people have said to me, ‘He’s so lucky to have you as his mother. You’ve been through it yourself, so you know what he’s going through.’ I always tell them: actually, I don’t know. Sure, there are some things I can relate to, and my awareness is a definite advantage, as it means he never has to live in confusion about what’s happening to him; and I can step in to provide more education for some of his teachers or other parents, if there’s a problem. But as he loves to remind me, he is not me, and we are on very different paths. Despite my own diagnosis, in many ways I am just as clueless and helpless as my own parents were with me.
I have tried to encourage him to blog about it – to share his own experiences and get the information out there to everyone, while letting out the frustrations he feels at the same time. He did this for a time but didn’t keep it up. I believe he keeps a personal journal, which serves the same purpose. He might decide to speak up about it more when he’s older. The school often tell us stories about him stepping in to support and mentor other children struggling with stress or unhappiness or feelings of not being good enough. I take this to mean he is finding ways to channel his own experiences in a positive way. Whenever he has dealt with bullies or ignorance about his diagnosis, I have encouraged him to tell people openly that he has Tourette’s, and teach them about it. I am a strong believer that knowledge and education is the best defence. Otherwise, I can only do what my parents did for me: let him find his own way.
Final Thoughts
I hope this has article has been helpful in some way. It’s not a topic I’ve seen much written about, and I hope that starts to change. Next time, we’ll be talking about something else I never really see people discuss: what it’s like to be a woman with Tourette’s. The female hormonal system and its interaction with neurotransmitters (and therefore Tourette’s and other related conditions) presents a whole set of additional complications and challenges that boys / men will never have to deal with, and we need to get it out there in the open.
Even if you’re a man, this is an important topic to help you understand your daughter / wife / girlfriend / friend / sister / mother / cousin dealing with the condition, so please be sure to subscribe to this blog so you don’t miss out.
Finally, if you’d like to read a detailed depiction of what Tourette’s is really like to live with, please read my short story The Passenger, available on Amazon Kindle and the Kindle phone/tablet app. US Readers UK Readers
Until next time….
Vrinda Pendred is a graduate of English with Creative Writing at Brunel University. She completed work experience with Random House and proofread for Mandala Publishing. She is married with two children and lives in Hertfordshire, England, where she does freelance editing and proofreading. She is also a writer, and you can learn more about her personal work here.
Vrinda has five neurological conditions: Tourette’s Syndrome, Obsessive-Compulsive Disorder, ADHD, High-Functioning Autism and bipolar disorder. In 2010, she founded Conditional Publications with the intention of providing a creative outlet for people, and (hopefully) changing a few minds out there about what neurological disorders really are – including not just the limitations, pain or frustration, but also the more positive, beneficial ‘symptoms’ of these strange conditions.
She made three contributions to Conditional Publications’ debut release Check Mates: A Collection of Fiction, Poetry and Artwork about Obsessive-Compulsive Disorder, by People with OCD. Since then, she has released a novel entitled The Ladder, inspired by her personal struggle with bipolar disorder, as well as a number of short stories, and a YA sci-fi /fantasy series called The Wisdom, all available for purchase from Amazon.
