‘I like my tics, and I don’t want any of them to go away!’ It was a moment I will never ever forget.’: Mom to son with Tourette Syndrome shares his journey to become his own biggest advocate

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“Becoming a mother was something I had always wanted from a very young age. When my husband Leroy and I got pregnant with our first born, Willow, I was so excited but also a little bit nervous. Once I became a mother, I was so incredibly happy. She was absolutely perfect. Being a mother is the greatest gift. When Willow was just 7 months old, I got pregnant with our second child. This time, with our son, Knox.

It was a super busy time having a newborn and a one-year-old running around. But life was so good. We had our two babies, a boy and a girl. We had a roof over our heads and our babies were happy and healthy. What more could we ask for.

mother in hospital bed with newborn in arms with dad standing at the edge
Courtesy of Tawnee Pickar

Early Diagnosis

Our son Knox was developing on track until he was about eighteen months old. Then he just stopped using the words that he had just started babbling a few months earlier. He became distant and would often hide in corners when we had company over. His fine motor skills were not very good. He just was not developing the same as his sister had.

We brought him in to see his primary care provider with our concerns. She thought he might have autism and scheduled an evaluation for him. At the young age of two and a half, Knox was evaluated and diagnosed with moderate nonverbal autism.

Things were hard. Really hard. We were given a diagnosis and a list of all recommended services that our son should receive and then we were sent on our way.

We did all the things. Speech therapy, occupational therapy, started sending him to preschool, and play therapy. We did everything we could to try and make our son’s life a little easier for him. He was angry a lot. He lashed out at me. He would hit, kick, pull hair, and scream. It was super tough. Those were probably the toughest years. From two to age four.

Then something changed. He started using his words again. Little by little he began to communicate. He was happier. He was playing with his sister and us more. We began to figure out how to navigate this diagnosis and how it affected Knox. We learned what we could and could not do. Places we could go and places we had to avoid. Things were falling into place, and life was getting a little easier for Knox and for our family.

young boy in hospital bed
Courtesy of Tawnee Pickar

Tourette Syndrome

Three weeks after Knox turned 5, in August 2018, out of nowhere, his eyes began to twitch. He also had very hard excessive blinking. He would have these episodes where he would just stare off into space and you could not get his attention no matter how hard you tried. He would hit his head and scratch his forehead so hard he would bleed. At one point, we thought he might be having seizures. He seemed to be in pain. One night we brought him to the emergency room just to be on the safe side. They told us that our son was having facial tics and that they were a part of his autism diagnosis and sent us on our way. A couple months passed, and I did not feel comfortable with that answer. I knew there had to be more. So, I brought him to the local clinic where we were told the same thing. This doctor did want to send us to a pediatric neurologist just to be sure though.

Months passed before we could get in to see the neurologist. The days felt like weeks and the months felt like years. Once we did get into the neurologist, he did, in fact, think my son was having tics. By this time, the tics were affecting most of his body. The neurologist told us Knox might have a condition called Tourette Syndrome. To be diagnosed, you must have at least two motor tics and one vocal tic for a year. At this time, Knox had been having tics for about eight months. We were advised to keep track of his different tics and the episodes that we thought might be seizures.

He also ordered an EEG to test for abnormalities in his brain waves. After two attempts, Knox was able to tolerate the EEG. He did not like his head being touched when he was younger. The EEG came back abnormal. The neurologist then wanted to get an MRI of Knox’s brain to make sure there was nothing structurally wrong. The MRI also came back abnormal, and Knox was diagnosed with a brain malformation called Chiari in November 2019.

At the same time, Knox was also diagnosed with Tourette Syndrome as he was having his tics and symptoms for over a year by then. He did undergo brain surgery for his brain malformation. We ended up driving across the country twenty-four hours one way during Covid to get to a wonderful surgeon in New York City. This was a very emotionally stressful time for our whole family.

boy in hospital with mother next to him
Courtesy of Tawnee Pickar

Caring for Knox

Around this time, I gave up a job I loved and went part-time to take better care of our son. There were just too many appointments, and he had weekly therapy once a week and that was two and a half hours away. It was impossible to keep a full-time job.

With so many things going on at once, we were focused on trying to get our son help with his Chiari first. As we believe a lot of the head hitting and scratching was due to pain from his malformation. Once Knox recovered from brain surgery, so many things got better. His speech got better, he did not have anger outbursts anymore, his motor skills improved, and he was interacting more and making friends. He was a much happier kid. And things were going great.

Once life slowed down from that, I started researching Tourette Syndrome and tried to learn as much as possible about this condition. I joined support groups and connected with other mothers across the country. I did not have anyone in our community that I knew with Tourette’s. I am so thankful for the online communities, without them, we would not be where we are today.

little boy in hospital bed sleeping
Courtesy of Tawnee Pickar

Understanding Tourette Syndrome

Over a year’s time, his tics progressed. At the beginning, if you did not live with Knox or interact with him daily, you probably would not have even noticed his tics. But by the time he turned 8, it seemed like every part of his body was ticking daily. He still has his eye tics. His head shakes back and forth very vigorously. His abdominal muscles contract so badly sometimes that he gets physically sick and is bedridden. His fingers clench and unclench to the point he cannot write. His neck extends out. His knees smack together. His leg muscles flex so badly it stops him in his tracks. He clears his throat. His arms move up and down. He has a screaming tic that catches everyone off guard. To this day it makes me jump out of my seat. He jumps constantly, all day long. It does not matter if he is sitting or standing, he is jumping or bouncing. He smacks himself in the face. He smacks other people in the arms.

We didn’t tell Knox he had Tourette Syndrome right away. It wasn’t until about two years of him having tics. I will never forget putting him to bed and him asking, ‘Mom, why am I different from everyone else?’ And right then and there I explained Tourette Syndrome to him. He really didn’t understand at first, but he definitely understands it way more today and is becoming his own best advocate.

This condition is so much more than what most people think it is. It is portrayed in the movies as being the condition people have where they swear. When in fact only an estimated 10-15% of people with Tourette’s swear. This is called coprolalia. Knox does have this. He swears every day when this is present. But just like tics, it waxes and wanes. Having a son with coprolalia is very challenging, especially in the school setting and when out in public. We were once standing in line at a checkout and Knox was trying to get through to look at the DVDs they had there, and he said to the lady in front of us, ‘Excuse me, b*tch.’

Another time, we were walking into Walmart, and he saw a lady and just shouted ‘Chubby.’ He is never trying to be disrespectful or mean when this happens. It just pops out of his mouth, and he cannot control it. He usually immediately says, ‘I’m sorry, I can’t help it!’ And in these moments, I freeze. I never know what to say. I am not embarrassed or ashamed or anything, it is just an awkward situation to be in as people can be so judgmental. That is just the hard truth.

You never know when a new tic will show up and what it will be. Tics can literally be anything your body can do or anything your brain can think about. Knox has both simple motor and vocal tics, which are tics involving one sound or one muscle group or body part. And he also has complex motor and vocal tics, which are distinct coordinated patterns of movement involving multiple muscle groups or body parts or words and phrases. Knox has a complex tic where he says, ‘I’m a normal kid, I’m a good guy’ and then he clears his throat. He has had this tic for at least three years now.

little boy in hospital bed with wires on head
Courtesy of Tawnee Pickar

The Impacts of Knox’s Tics

Knox’s tics can be very situational. Depending on where he is, who he is with, and what is around him. Every time he brushes his teeth, he has to clear his throat first, and his mouth tics a certain way after. Every time he sees a mirror, he extends his neck and gives the mirror a funny look. His tics stop him from what he is doing very often. And they affect his life in so many ways. Going to the bathroom is a challenge for him as his leg tics get so bad that he misses the toilet. We have to be extra careful when brushing his teeth because his neck and head tics cause the toothbrush to stab his throat and cheeks. He always has to wear socks when he has shoes or sandals on, no matter how hot it is, because he has toe tics that bother his feet if he is not wearing them.

Knox has been kicked out of class in school multiple times for his vocal tics. I will never forget the first time he came home crying saying, ‘I got kicked out of music class for making that noise!’ He was clearing his throat. School is probably the biggest challenge for Knox. It took me trying to educate them for three years to even acknowledge the fact that he has Tourette Syndrome. It was a battle that I should not have to have had.

Knox struggles with other people telling him he can control things he has no control over. Anyone would struggle with that. Imagine having a condition where you have no control over your body to begin with, and then having people tell you to stop doing the things you have no control over. It is devastating for him and very damaging. I was able to get the Tourette Association of America to do an educational service at the school Knox attends this past winter in hopes things will get better. They are an amazing support system.

Disinhibition is another symptom of Tourette’s, and this affects Knox’s everyday life. It is described as saying or doing something on a whim, without thinking in advance of what could be the unwanted or even dangerous result. Knox will grab a sharp knife out of a drawer and point it at someone. He will touch the hot oven and my hot hair straightener or curling iron. He climbs up onto the counter and jumps off. He will open the car door going down the freeway. We now have all child safety locks turned on in the car. All of these are very real and very scary situations, and we are always on high alert. Always.

I was told by another Tourette’s mother and advocate that if someone with Tourette’s thinks it, they do it or say it. And, oh boy, is that ever the truth. Knox has no impulse control. It can be challenging when out in public. We do not go out much. Because it is so hard to be on such high alert all the time. It is draining wondering whose boobs he is going to grab next, yes, this happens all the time. Or wondering when he will call someone fat. Or when he will grab an older person’s neck and tell them they are old. Or when he will call out a woman for having no teeth. All I do in these moments is to try to distract my son from those things without him knowing I am doing so. All these examples have happened, and most of the time people are super nice or they do not even hear him saying these things. But it does not make it any easier.

little boy with birthday cake in front of him
Courtesy of Tawnee Pickar

Co-Occurring Conditions

Knox has many symptoms and co-occurring conditions. He is also diagnosed with ADHD, OCD, anxiety, and autism. All co-occurring conditions. He also has coprolalia, which, as I mentioned, is the involuntary and repetitive use of obscene language. He has copropraxia, which is inappropriate touching of oneself or others. He has coprographia which is inappropriate writing or drawings. He also has echolalia which is the repetition of another person’s spoken words. Meaning he repeats what other people say. He also has echopraxia which is the involuntary imitation of the movements of another person.

There is no cure for any of Knox’s diagnoses. Only treatment options like therapy or meds that may or may not work or may cause some of his conditions to worsen. But we are blessed that we finally have the full picture of what is going on with our son. We were told for too many years that everything was autism. And it was very damaging to him. Especially regarding schooling.

This is a lot for a nine-year-old, but Knox embraces his Tourette’s and does not let it stop him. When I brought up the idea of medication to him, his response was, ‘No!! I don’t want medicine! I like my Tourette’s and my tics, and I don’t want any of them to go away!’ (A moment I will never ever forget.) He is a very active kid who loves to jump, eat, snuggle his puppy, and run all over the place. He loves Michael Jackson, Chucky, and FGTeev. He advocates for himself, and to me, that is the biggest blessing. I am so glad he sticks up for himself and knows what is going on and how to express his feelings about it. It is truly amazing considering he was nonverbal four years ago. I am so proud of this kid for how far he has come and for climbing all the mountains that were made to stop him right in his tracks. Everything Knox has been through has never slowed him down. He is such a happy kid, always smiling. He is my hero. He has changed me into a better person, a better mother.

boy on trampoline
Courtesy of Tawnee Pickar

Kindness, Happiness, and Support

One thing Knox says every day is ‘I can’t help it.’ That’s the one thing he wants people to know. This is a nervous system disorder, not a behavior problem. And the one thing I want people to know about Tourette Syndrome is that you should ignore all tics and symptoms of Tourette syndrome unless the person with Tourette’s is causing danger to others or themselves.

Please treat people with kindness, you never know what they could be going through. In Knox’s case, it’s a lot and it’s every single day.

One last thing, if I could give one piece of advice to any parent out there going through anything like this, please, please, always try to find the happiness in everything. There is always good with the bad. Easy with the hard. You will get through it. There is light at the end of the tunnel. I promise. It could take months, it could take years, but you will get there. We are just getting there after years of trial and error and fighting for our kiddo, but we made it through the toughest years and are now enjoying life to the fullest. We even took our first family trip ever this month. We went to Disney World, something I never thought would be possible for Knox. But we did it and it went amazing!

And find your people. A support system. It doesn’t have to be huge, just someone to talk to, someone who you can count on to be there when you need them. For me, it’s my sister and my parents. They have been there through it all, and I will forever be grateful for them and everything they have done for my family.”

family standing outside castle at Disney
Courtesy of Tawnee Pickar

This story was submitted to Love What Matters by Tawnee Pickar of Warroad, Minnesota. You can follow her journey on  her personal Facebook and personal blog Facebook. Submit your own story here, and be sure to subscribeto our free email newsletter for our best stories, and YouTube for our best videos

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