‘My mum tells me to stop it’: When parents don’t understand your tics (Guest Post by K)

Growing up with tics can be tough. It can be even tougher if parents do not understand your tics.

I was recently on a forum on the topic ‘my parents don’t understand my tics‘ and it was full of people sharing stories of struggle.

K (name changed for privacy) is a 16 year old living in South Carolina. Her mom struggles to understand her situation, and this has led to obvious frustration.

It has also helped me to understand what it is like to be a child of a parent that does not understand the condition.


Topics covered:

  • Parents telling you to simply ‘stop it’
  • Having vulgar or rude tics in front of parents
  • Being told tics are ‘put on’
  • Seeing a specialist with parents

I wanted to pay a visit to this sculpture- ‘Kindertransport- The Arrival‘- outside of Liverpool Street Station for this post. It commemorates the thousands of children that escaped persecution just before WW2 and arrived at this station

I know my post has nothing to do with this sculpture, but this piece of art is a constant reminder for me that we adults are constantly failing children. This can have so many damaging effects as they grow up.

‘She tries to tell me to stop it’

K posted the following on a Tourette’s forum, hoping to find others in the same situation:

I’m currently ticcing like I usually do, and I have told my mom many times that I can’t control it and that I have many vocal and motor tics.

I’m going to a neurologist soon, but she still tries to tell me to try to stop it. She calls what I’m doing a habit and tells me that I’ve ‘adapted’ to it or something. I can’t live with my mom constantly not believing that I can’t control my tics, and I just wanna go crazy. I wanna tic freely but my mom just makes it impossible. I’m so sick of it.

I just hope that the neurologist brings up Tourette’s and tic disorders since I really want my mom to understand how bad I’m feeling and that I can’t stop it. She says that I just have to think about stopping it and I’ll stop- I can’t deal with this anymore…I just need some support from someone who’s going through the same thing for reassurance…

K

K told me she has numerous motor and vocal tics. She waves her hands and shakes her head. She has a compulsion to hit her head and body on occasions, as well as shout the ‘F’ word and use the middle finger.

Despite these tics being pretty normal in Tourette’s Syndrome, they can come as a shock to someone not familiar with them.

CDC Statistic
Source: cdc.gov

‘I told my mom one day, so I could tic outside of my room’

K had mild tics, however sometime in 2020 these tics became more severe. Around August 2020 she began to have vocal tics.

‘My tics only came out a lot in my room so no one noticed until they were getting a lot worse. I told my mom one day, so I could tic outside of my room’, she states.

It would certainly be a surprise for mom to see this sudden increase in tics, but this does not mean severe tics are ‘put on’. The majority of people with TS see a reduction in tics into their teens and early twenties, however tics can also increase.

Snippet of letters sent by specialists when I was a child
I was given advice at an early age from professionals, and my parents were educated too

The worst thing to say to someone with TS is that they simply aren’t trying hard enough to stop it. I can tell you that this is simply not true. This will only bring on more distress, especially from a parent.

Tourette’s Syndrome is a condition that has been observed for centuries now, and sufferers have very little control over their movements. To say tics can be prevented is to disregard the urge to tic in the first place, which is the difference between having TS and not having it.

‘She says that I just have to think about stopping it and I’ll stop’

Parents like to believe they know best. But unless they are willing to seek help from experts, that advice may be doing more harm than good.

‘I can’t live with my mom constantly not believing that I can’t control my tics, I just wanna go crazy.’ K says.

She is experiencing something that many kids across the world experience. A struggle to control their actions due to a neurological disorder, made more stressful with unhelpful advice.

A lady with a book about parenting on her lap

I know that resisting a tic only increases the pressure build. Usually the only way to ease the pressure is to do the tic.

Getting advice from specialists for your child

K is lucky as her mom agreed to see a neurologist with her. With a diagnosis there is a much better chance for treatment and a greater understanding for both child and parent.

Parents should seek professional advice for their children if they witness tics. By doing so the child will have a much better understanding of the condition, as will the parent/s. Tourette’s Syndrome will be easier to live with and may help pinpoint any associated disorders that are present.

I have been very lucky to have supportive parents growing up. I got diagnosed very early on and this let to a much better understanding for me and my family when I needed it the most.

I urge anyone old enough to get professional advice if you believe you have TS or a tic disorder, and urge any parents to do the same for their child. The help can be priceless in not just helping your child with a disorder, but also strengthening the relationship between parent and child.


For information about TS associations in your country, ESSTS has a great directory to help you in the right direction. This can be viewed by clicking here.


4 thoughts on “‘My mum tells me to stop it’: When parents don’t understand your tics (Guest Post by K)”

  1. I don’t recall getting any pushback from my family when I was a kid. It was the seventies so I doubt they knew why I made ‘that sound’ but I don’t recall anyone ever talking to me about it. At 58, my tics are escalating (pandemic stress?). and beginning to get really tiresome. Heartbreaking to read about kids like K not getting adequate support from their family. My wife and kids have all become pretty comfortable with my TS.

    Reply
    • Pleased that your family are supportive with your TS. It is what we all need and I too am thankful that I have a supportive family. Sadly not all parents are so supportive (or understanding) however blogging as we have touched on is a great way to meet likeminded people and find our communities.

      Many thanks Jeff.

      Reply

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