Privacy verses Safety
Miriam Gwynne
Full time mum and carer for two truly wonderful autistic twins. I love reading, writing, walking, swimming and encouraging others. Don’t struggle alon...
“Is he ever unsupervised at any time?”
I looked at my 16 year old son and shook my head. It was a simple question by the social worker as part of the long assessment for adult services but it really made me think.
He’s a sixteen year old boy who can’t ever be alone or unwatched even when asleep.
While his peers gain ever increasing independence and privacy he still has a baby monitor in his room and eats with me sitting beside him. He might not know any different but privacy is something that unfortunately he just can’t ever have.
It’s not because I don’t want him to. Why would any mother want to watch their teenage son 24/7? The very thought would have horrified me before my son was born.
Everyone deserves the right to privacy but how do you balance that when it’s not safe and your teenager is disabled?
Giving him even short periods of time alone unsupervised could potentially be fatal. He can’t speak so he can’t alert me to any problems. While his body is 16 his cognitive ability is that of a toddler at most and under 12 months old still in many areas. He gets frustrated easily, technology get thrown and broken, he has intimate care needs that need attention quickly, food and drink gets thrown or poured everywhere, but most concerning of all is that he is epileptic and during seizures he loses consciousness suddenly.
The only way to ever keep him safe is to have eyes on him 24/7. That means eating right beside him, watching him through the night via a monitor, being close to him throughout the day and taking him everywhere I go. It means even having to watch him in the bath as sadly he’s had seizures there and had to be pulled out to prevent him drowning.
The older he gets the harder this feels.
While he doesn’t understand, I do and it breaks my heart that he can’t go out with his mates or sit in his room alone playing video games or texting friends.
It’s just another reminder that our life is different. At an age when privacy should be increasing we have no choice but to put safety first.
When it’s the only way to keep him alive what choice do we really have?
