Mandy Maysey is a 49-year-old mum living in Australia with her three children, who are all coping with an unpredictable disorder. Tourette syndrome (TS) is a neurological disorder involving repetitive involuntary movement and verbal outbursts (tics) which are often obscenities. Approximately one in one hundred people are known to have Tourette Syndrome yet the cause is unknown.
9 Honey Parenting featured an interview with Mandy who is the President of the Tourette Syndrome Association in Australia. She is anxious to bring awareness of TS on behalf of her own children and all other children with the disorder.
About Life with Tourette
Mandy describes the outbursts as a fight or flight reaction. As their rage builds up they become much stronger and can actually put their fists through the wall. When they come home from a frustrating day at school they begin shouting, throwing objects, and making huge holes in the walls.
Everything becomes so hectic that they are unable to eat together as a family. Food is thrown around the room and into everyone’s face and hair. The family has learned to eat in their own separate areas.
Tryxx Was the First Child With Symptoms
Mandy’s youngest child, Tryxx, was diagnosed with TS in 2017. Shortly thereafter, Mandy was told her other two children, Void now age 15, and Conor, who is 28 years old, had the disorder.
The parents noticed certain abnormal blinking or snorting when the children were about two years old. At age six the swearing (coprolalia) began as well as obscene gestures. Mandy said that within one week all three began writing obscenities along with tics. The children also have obsessive compulsive disorder (OCD), autism, and anxiety disorders. Mandy describes it as her steep “learning curve.”
Mandy remembers that at the time of her “discovery” her husband was overseas. She had been on the phone with him crying at the thought of his coming home to find his children had changed so drastically.
Problems at School
Although Tryxx is in the top ten percentile of her class, she shares the same disciplinary problems as other children with TS. She is often taken out of class due to her outbursts.
In addition, Tryxx has a subtype called functional tics. She occasionally loses control of her legs, arms, eyes, and tongue – making her require a wheelchair, which is not available at school. As a result, Tryxx once lay on the floor for four hours in her classroom before she regained use of her limbs. Mandy explained that this symptom may last for hours or even days.
Mandy and Tryxx both believe that educating the teachers could solve part of the problem. They recall the many times the children were taken out of class for a disruption that was labeled as disobedience rather than due to their illness.
An Expensive But Unreliable Solution
Deep brain stimulation is an invasive option that Mandy does not feel they should pursue. The treatment costs $45,000 out of pocket for each patient. Mandy explains that she has heard various horror stories while at the same time hearing some with positive outcomes. The therapy can reduce the physical tics, but the mental tics remain
Mandy wishes to emphasize that people who have Tourette’s are not able to control their actions. It is for this reason that she pleads with people not to stare and to please ignore the outbursts.
The Tourette Association is asking the government to invest in training for teachers and school administrators working with children who have diverse needs and neurological disorders.
