Disclaimer: This story includes mentions of suicidal ideation that may be triggering to some.
“I am a 25-year-old mother living with Tourette’s syndrome and using that to support others with a disability through firsthand experiences. If there is one thing in this world I can do, it is supporting others who may not be as lucky as me. I love to be able to give back to those in the same or similar situations as mine. I aim to be positive in often negative situations, and I want to encourage and educate others and build an inclusive and empathetic society focused on people’s abilities rather than their disabilities.
In the beginning, the first signs of my Tourette’s were extreme behaviors from a very young age, starting from about 8 months and escalating from age 2, including hitting, biting, scratching, breaking possessions, and destroying the house. As a baby, I would get on my hands and knees and bend my fingertips, and to this day I still use this as a coping mechanism for when I feel overwhelmed. My fingers are permanently bent from it. My meltdowns would last anywhere for between 1 hour and 12 hours with no break in between. At my worst, I was having up to 5 long meltdowns a week.
As I got older, this developed into muscular tics. A tic is like a sneeze, you feel it coming and you cannot do anything to stop it, you just have to do it and move on. I would need to jerk a muscle to the point of pulling it to feel the sensation and allow the tick to ease. I spent many years in constant pain from my ticks and their effects. It often got me in trouble at school because one of my ticks was to roll my eyes, especially when being asked to give eye contact: often this was when a teacher was talking, and I would then be in trouble.
Traits of Tourette’s include having a messy space, something I was always in trouble for. No matter how hard I tried, I could never keep my bedroom clean. The mess brought a sense of calm, but oddly enough, I loved having my room clean too, so it was a constant battle. It also manifests through obsessions, so I know when things are particularly bad my obsessions and need for routine increase including foods, TV shows, the time I wake up and go to bed, and scheduled times for activities throughout the day.
My obsessions have always been a struggle, especially I grew up on a restricted diet to help manage my behaviors. Once that diet eased, I would start over-eating and -drinking all of the things I was not allowed to previously, I became addicted to Coca-Cola and takeout food and became quite overweight. As I learned to manage my obsessions and lose weight, things started to ease but never fully went away.
Prior to being diagnosed with Tourette’s Syndrome, it had a major effect on my life: my extreme behaviors impacted my friendships and my relationships with food, medication, and exercises, I hated that I was so different from others and couldn’t figure out why. My siblings struggled because our mom would put so much time and effort into finding the cause of my issues, from new diets to hours of online research every night to regular medical and naturopath appointments. It took ages for me to form solid bonds with my siblings again after diagnosis because they felt they were forgotten while Mum put so much effort into me and working me out.
I was diagnosed with Tourette’s at the age of 12, I had just begun high school and was in Year 7.
The diagnosis had a huge negative impact on my self-image, and still to this day, I have days when it affects me. In order to avoid being different, I have always attempted to fit in, often going over the top to do so, from regular changes in hairstyles and hair colors to the clothes I would wear. Whether I felt comfortable or not, I would wear them to fit in and avoid people thinking I was different. I am a people-pleaser, not often doing things against the status quo again to avoid attention on myself. My diagnosis affected my mental health, and I live with anxiety as a direct link to my Tourette’s Syndrome. Some days I wake up and feel great, look great, and am overall confident, but most days are not like that. I pick at every part of my body and self-image, and all day it plays on my mind what others think of me, my clothing, actions, and choices.
My mental health took a major toll following the diagnosis. I became depressed. I would mask myself behind makeup and hairstyles, and I would often avoid social situations as the anxiety that my tics would show affected me majorly. I still have social anxiety to this day but am able to take control of it more so these days than when I was first diagnosed.
It took me a very long time to accept that I was different and technically living with a disability. I would always joke and say, ‘Whoops, that’s just my Tourette’s’ to nearly every situation where I felt I did something wrong or was being looked at. Once I was in my mid-late teens, I began to accept my differences and look for ways to use them as an advantage. This is when I decided to return to school after dropping out 12 months earlier due to schoolyard issues and my inability to fit in. I enrolled at our local community college to complete my year 11 and year 12 and found my passion for helping others through volunteer work. This is where I learned to accept my differences and embrace who I really was.
Tourette’s manifests throughout my life daily. It affects the way I get ready for the day, including how I wake up. Routine is key, and the slightest unforeseen change can drastically affect my day. I need to pre-plan everything and watch the foods and drinks I consume throughout the day: too much sugar, caffeine, or gluten, and my tics become out of control and constant. I spend a lot of my days focusing on my emotions, stress levels, and sugar intake in order to monitor how my tics will manifest. Some days are harder than others, but I can now recognize when things are becoming too much and I need to step back before a meltdown occurs. I have not had a meltdown like when I was younger for 5 years now, and I hope to keep it that way by staying in tune with myself.
My family was my biggest support throughout my journey. Although I was exhausting and a lot of work, my mother was always there, always trying to do more and learn more to help me no matter how much I fought her or said I didn’t need the help. Deep down, I knew I did and so did she. To this day she is still so supportive. My older sister was another huge supporter of mine, even through the years of my extensive meltdowns, extra medical appointments, changes in diets, and Mum spending so much time on me. She was still always there, helping me at school, letting me annoy her and her friends, and always making me feel included and normal. To this day, I am still so close with my sister. She is my best friend and one of my biggest supporters.
My grandparents have always been a huge support as well. My grandfather stepped up and took on the role as father figure to my sister and I. I am eternally grateful for him. My grandmother was always the calm in the storms that we needed so much. Many times, over the years they would support Mum by having my siblings and me over. At age 15, I lived with them for 6 months due to a breakdown with mum following a meltdown. My partner of almost 7 years, Alex, is also an incredible support. He accepts my tics, my odd little traits, my obsessions, and my need for an outlet. To say the least, I can be a handful at times, but he has never once seen it as too much and has always gone above and beyond to ensure I am okay and to support me when I need it.
My mom’s, anxiety support dog was also a huge support for me. Samson and I were extremely close. He came into our lives when I was 14, and we lost him last year to cancer. I was so lucky to have him as long as I did, and I’m glad my son was able to experience his amazing nature before we lost him. I am so lucky to have the family support that I do and have such a close family unit.
Time was the biggest factor that allowed me to feel secure and see light at the end of the tunnel. I had many times after I was diagnosed when I considered ending my life because I didn’t see what the point was when I was always going to be a burden on my family. Now, I am so glad I never went through with it because I can finally see the light and see the difference I am making. It took ongoing support from family and some amazing teachers who lead me to see I was an asset and not a burden and learn to live with my diagnosis as best as I could.
I became interested in helping others with disabilities when I was 17. I was in year 12, and I had an amazing teacher arrange for volunteer work to occur at a local disability day-program service offering various activities to adults with disabilities. I began volunteering in a craft group, and I fell in love. It sparked a passion in me that I had never experienced before, and I knew supporting others was where I was meant to be. This truly changed the path my life was taking and I found a purpose and an industry I loved. I completed year 12 and went straight on to further education to gain my qualifications in disability support. I completed that and began working in the industry at age 19.
To say the least, I was thrown into the deep end when I first began my career. My manager at the time saw something in me and felt I would fit in perfectly in a residential home of adult males with behaviors of concern. Initially, I was intimidated and other staff raised their concerns around having a young girl work within the home, but it didn’t take me long to find my feet, gain confidence, and build great relationships with both the residents and other staff. I remained in that home for 4 years, and still to this day, it holds a huge place in my heart.
Within my first week, I experienced my first meltdown from a resident. I still vividly remember it, watching staff attempt to protect other clients and avoid them escalating as well and watching the strength behind the person having that meltdown. But in that moment, I found the place I was meant to be. We worked through that meltdown, we picked the furniture up, we stopped and had a drink, and we discussed what happened and what led to that. This was such an eye-opening moment, and it really depicted the way my career would play out. I was all in after that day, I knew what I was needed for and that was to build a deeper understanding for staff of what was going on for these people in these moments: the feelings, the overwhelm, and the grief and regret they would feel afterward. It was so empowering being able to understand and support the residents on a deeper level.
In the beginning, I thought it was just that I loved to care for people. But as time went on and I began learning more about myself and the residents I was supporting, it changed from a job to a passion. It was a place where I wanted to continue to learn. My passion for positive behavior support is constantly growing and I want to share it with the world. I became more comfortable with my diagnosis and began disclosing it to staff, allowing them to understand why I was so passionate about my role and why I loved to support them.
A turning point in my career where I really accepted myself and the difference I was making for these people was when I was 21. I was placed on a team that was given the task to transition a young person into supported accommodation, help minimize their behaviors of concern, and build up their supports to allow for youth services to take over providing care. I became extremely close with this young person because that young person was me only 7 years previously, I could see my young self and all the struggles I faced. This is where I was honest: I explained to the young person about my diagnosis, my childhood behaviors, and how I overcame them. I became their inspiration. They used to tell everyone that when they were older, they would be just like me because I used to be just like them. It had a huge impact on me because I could truly see the difference I was making for these people by being honest about my diagnosis and struggles and overcoming the challenges.
My hopes and goals for the future are to continue to educate others and support people with disabilities to achieve their goals, understand themselves, and learn how to regulate themselves where possible. I want to create a more inclusive world where retail staff are trained to support people with additional needs. I want to allow people to feel a sense of independence when they go down the street and allow carers to embrace their differences and encourage their residents to utilize the services available. I want to create a movement for hospitality and retail staff to educate their staff and provide visual menus with pictures that anybody can use to order their meals independently. This is why I created my Instagram page @the.support.mumma. I want this page to be a safe space for carers, parents, and people with disabilities to come to learn ways to support each other, gain support, have an ear to listen to them, and create a safe space no matter where in the world they are, what time of day or night it is, or any concerns big or small that they may have. I want to be a place for struggling families to turn when they are at their wit’s end and don’t know what else to do. I want to continue to support, encourage, and educate as many people as I can on just how amazing people with disabilities really can be with the right supports provided.”
This story was submitted to Love What Matters by Hannah Jacksom of Wodonga, North East Victoria, Australia. You can follow her journey on Instagram and TikTok. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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‘I had to wear adult diapers. ‘Do you realize how stupid you look?’ He was mimicking my tics in front of the class.’: Young woman with Tourette’s Syndrome finally finds help, ‘I got my quality of life back’
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