"My Child Has Tourette Syndrome": A Mum's Story Of Resilience
"I think what defines me now is the acceptance of having kids with conditions, living with those conditions on a daily basis and trying to make the best of their situations."
In lieu of this year’s Mother’s Day Celebration falling in uncertain and unpredictable times that threw our lives out of spin quite literally overnight and into the midst of a global pandemic, we at theAsianparent celebrate the resilient spirit of a mother who was faced with one of life’s ultimate curveballs, and one that she didn’t see coming.
Here is the story of a resilient mother who strives to inject a sense of normalcy in what could be commonly considered a tumultuous experience for many, and who learned to take in stride her son’s condition of having Tourette Syndrome.
Heart of a mother
When mother-of-two Sharon Koh first noticed her son’s tics, she thought it was “just a bad habit” as she was not aware of the symptoms of the tic disorder or Tourette Syndrome at the time.
Her son, Tytus was only four years old and she shrugged off the incessant blinking of his eyes as something that would pass as he grew older, and even scolded him for it.
Tourette syndrome (TS) is a common neurodevelopmental disorder that is characterised by involuntary movements and vocalisations called tics. A few examples of common tics are blinking, coughing, clearing of the throat, facial movements, and sniffing.
The tics can sometimes go unnoticed by the observer, or in Sharon’s case, attributed to something else.
However, fast-forward a few years later and this mum soon understood that she was dealing with something entirely different.
“The real onset of the condition came about overnight for us. We had dinner after his sailing training at United Square and we saw that his whole body was jerking every few minutes, so much so that the table at the restaurant was shaking. We tried to tell him to stop but he looked at us blankly. It was then that I realised something was amiss,” Sharon notes.
That was the moment the alarm bells went off in this mama’s mind as she googled frantically for symptoms that her son was exhibiting. With a rough idea that this could perhaps be TS, she sent videos of her son exhibiting episodes of his tics to a friend whose husband was a neurosurgeon, and he concurred that it might be TS as well.
Upon bringing him for further medical examination to a Paediatrician, and a Paediatric Neurologist a few days afterwards, it was confirmed that Tytus had Tourette Syndrome.
Sharon looks back and notes that she was “totally devastated” when her son was officially diagnosed with the syndrome.
“I couldn’t accept the fact that overnight, my son had turned into a different person. Tears would well just thinking about it or looking at him and his tics which I thought looked socially unacceptable and ‘spastic,” she notes.
In a Facebook post which Sharon penned a few months after the diagnosis, Sharon recounts her feelings of hopelessness in accepting what would be the new norm for the family:
“Exactly 2 months since our lil’ man was officially diagnosed with Tourette Syndrome-an incurable neurological disorder that causes him to make involuntary movements and sounds that he cannot control. Since diagnosis, we have been trying our best to accept and live with the fact that our lil’ Tytus is no longer the same. From a perfectly healthy boy, he has turned into someone who has to live with the inability to control his body movements. Simple tasks of walking, writing, reading etc have become a challenge for him,” she had written in the Facebook post.
“He lives each day fighting with his multiple and varied tics that impede his everyday life. He stumbles after every few steps, jerks after every few words he writes. Every week, we see new tics that make going about his daily activities tougher for him. We need more patience as he does many things slower now. With every few steps we walk with him, we have to stop and wait for him to get out of his “leg paralysis”. With every few seconds of writing, he has to wait for his involuntary hand/arm tics to be over before he can continue,” she adds.
Sharon was presented overnight, with a variety of tics that she found hard to watch, and she experienced “searing pain” to watch him “struggle with multiple tics every few seconds/mins per day.”
Despite there not being any discernible pattern to the tics, Sharon soon realized that there days when he would be completely normal, days considered ‘good’ with mild to moderate tics, and days that were bad. Episodes would range from mild tics like incessant neck twitches and eye blinking, to moderate periods where his body would jerk every few minutes, to bad flare-up periods when he would exhibit “all sorts of ‘creative tics’ that would include major body jerks every few seconds, hard clenching of jaw every few seconds, forced widening of the jaw every few seconds, stumbling of legs and feet, hitting himself against the wall, and jerking of his arms every few seconds.”
Recounting a particularly bad episode when her son had his worst outburst, Sharon notes a sense of futility in not being able to help him, and that all she could do was to tell him to go to bed to ease his agony.
Speaking of the episode she said: “He had a spate of bad clenching of the jaw where for the whole day his jaw would clamp down hard on his teeth every 15-20s or so. That caused a loud sound from the clenching of his teeth. I wondered if his teeth would crack. He probably clenched over a thousand times that way for a day. By evening, he told me he had a splitting headache from the clenching. I couldn’t do anything but to tell him to go to bed immediately.”
Strength of a mother
With Tytus being a Sailor and regularly being alone at sea during training, Sharon was now left with a difficult decision to make. Does she give in to her own, as well as relatives’, concern and keep him back from his passion, or does she allow him to proceed with his sailing, knowing he could be subject to dangers at sea?
“When he gets his flare-ups, he gets tired very easily as the tics take a toll on his body. When the tics affect his legs, he may lose his balance and have to pause in his steps every few seconds of walking”, she notes.
In the end, despite worrying about him when he was out at sea, she made the decision to let him carry on with his sailing.
“We have been under pressure by concerned family members to stop him from sailing. They cannot fathom how Tytus would still be able to sail with his condition and fear for his safety. That’s totally understandable.
But look at him here. How much crueller can life be for this little one, if we were to also take away from him, something he loves?” she states.
It was a decision that was a hard one to make, but one that was borne out of a mother’s will and desire for her child to live a life of normalcy and to continue doing the things he loves.
Sharon was also mirroring her son’s own “tenacity and positive spirit – to live as much of a normal life as he possibly can, in spite of his cruel condition.”
Relief also came from the fact that Tytus’ friends would watch over him and would be constantly reminded by their parents to look out for him.
“My son’s sailing parents are really awesome. They will observe him and when they see that he is not on a good day, they ask their sons to look out for Tytus when he is out at sea,” she commented.
Hope of a mother
There is currently no medication or cure for tics and TS, including very minimal medical intervention to control or minimise tics.
“The Neurologist said there is nothing at all that we can do. The only thing we can do to help him is to learn to accept him and stop asking him to stop his tics.”
As a mum, Sharon notes that the biggest challenge of this all so far has been the process of agonisingly watching him suffer and not being able to offer any solution at all for him.
However, when asked how she coped with the challenges that her son’s condition entails, she said it was Tytus who was, in fact, helping the family cope with the situation.
“It is more difficult for the loved ones of the sufferers to cope as we interact with them and see their tics all the time. We can’t help but feel the impulse to tell them to stop it. But we also know they can’t stop. Tytus has been very positive and brave in accepting his condition. He has never once complained or threw a tantrum about his condition. The only time closest to is was when he posed me the question “Why am I the only one among my friends to have TS?” she says.
She also noted that many people misunderstood Tytus’ involuntary tics for intentional movements meant to irritate, annoy others, or bring attention to himself. “Some kids, without knowing of his condition, would think he is trying to act idiotic and would tell him to stop his idiotic movements.”
“It would be great if people around him could recognise and accept people with tics, but sadly, most people don’t know and don’t understand Tourette Syndrome (TS),” she notes.
Sharon is currently contemplating on starting a Facebook support group for families dealing with TS, and hopes this would be a “good platform for parents with kids suffering from TS to come together and support each other.”
It is said that when a child is born, so is his mother.
In addition to being a mother of a child with Tourette Syndrome, Sharon is also a mother to a little girl with severe attention deficit hyperactivity disorder (ADHD).
On being asked if being a mother of children with medically diagnosed conditions defines her, she said: “I think what defines me now is the acceptance of having kids with conditions, living with those conditions on a daily basis and trying to make the best of their situations.”
In having to adapt yet again to what she thought was the life she was initially to receive at the birth of her child, it can be said that this mother has been through a rebirth of sorts. And in the process, she has had to redefine life, its challenges, and put her child’s needs and wants before hers. That is at the very core of motherhood; this spirit of giving and sacrifice that we all celebrate.
Happy Mother’s Day Sharon, and Happy Mother’s Day to all the lovely mums out there. Today is for you.