Hamilton man Shannon Wilson suffers from a rare brain condition called pachygyria. Photo / Malisha Kumar
Hamilton man Shannon Wilson suffers from a rare brain condition called pachygyria. Photo / Malisha Kumar
Hamilton mother Debbie Bennett has an adult son with special needs who has a habit of yelling and screaming in public. She can live with that.
What has been frustrating, she says, is the police visits and the hurtful online remarks, some of which urge violence against her son.
Bennett and her 39-year-old son Shannon Wilson moved to Hamilton in 2020. Since then there have been complaints to police and online messages urging her to take extreme measures to curb the yelling.
Fed up with endless apologies, Bennett said she had tried educating people about her son’s brain condition - pachygyria.
Wilson was born normal, teething as babies do at that age, and then nine months later he started to go downhill, Bennett said.
Debbie Bennett, Hamilton, has been caring for her special needs son full-time. Photo / Debbie Bennett
A pediatrician at Waikato Hospital diagnosed him with pachygyria.
“His learning, crawling, and walking just wasn’t developing as much as it should have been and it was developing, until all of a sudden it became really slow.”
Due to his condition, Bennett said her son had big mood swings and he could be loud.
“He’s outside deliberately yelling and screaming because he knows people will give him attention, and if we try to talk to him he gets louder and the screams get higher.
She made a social media post in a local group to explain the condition. Someone commented saying she should punch him and beat him up.
“I asked [the commenter] if he had any kids and he said ‘No, and I wouldn’t want them if they were like that’.
Wilson would yell until he got his way sometimes.
“If someone tells him to shut up it gets louder, if you don’t say anything he gets louder.
The first post Debbie Bennett made in regards to her special needs son, when she moved to the Hamilton area.
“Either way, you can’t win and all you can do is walk away when he’s in a mood and let him cool down on his own accord.”
Putting Wilson into full-time care was not an option for her despite people telling her she should.
“People keep saying to put him in a home and I can’t do that. He won’t get treated the way he should be, he’s better off here.
“He’s comfortable and happy here, playing with his Nerf guns and watching his favourite shows.
“I made goals for myself for every five years to keep caring for him and now he’ll turn 40 in May, and I’ll make another set of goals.”
Shannon Wilson watches a movie, with his favourite drink and favourite chips within close reach. Photo / Malisha Kumar
Bennett said it was not an easy job.
“Sometimes it’s fun and sometimes it’s hard work when his mood changes. I get over it and I cry at night or during the day if he’s in a mood.
“I don’t get a break and it’s really hard.
“People should see what it’s like in my shoes.”
Te Whatu Ora Health New Zealand Waikato neurologist Dr Mathew Phillips said pachygyria was a rare congenital disorder affecting the structure of the brain. It was a developmental condition caused by the abnormal migration of nerve cells in the developing brain and nervous system resulting in the brain structure being altered.
He said the care required varied but patients often needed seizure control and might need medications for mood problems.
“Pachygyria patients often have a cognitive disability and may have difficulty controlling some behaviours.
“Since it is a structural problem, pachygyria is not curable. Because the symptoms of pachygyria vary from person to person, treatment is symptomatic, including seizures, poor muscle tone, and difficulties with control, feeding, or swallowing.”
Bennett said she would continue apologising to local residents for her son’s outbursts.
“I know [he] can be loud and annoying, and I will keep saying sorry to everyone because it’s nobody’s fault.
“All it takes is a split second in your life for you to become special needs, and then your life changes. You don’t have to be born like that and you can have an accident, it can happen to you anytime in life.”
