Having a child who is forever vulnerable

Vulnerable: to be weak, without protection, easily hurt physically or emotionally, easily influenced, prone to attack, naive, easily taken advantage of.

I used to think of vulnerable in terms of a small child unable to defend themselves, an elderly person living alone unable to fight off an intruder or a homeless young person who could easily be taken advantage of by others.

That was until I had a disabled child of my own.

My son was born vulnerable. Smaller than average due to being a twin, a little premature and struggling to regulate his own temperature.

He remained vulnerable as a toddler still crawling when all the other children were walking and in danger of being tripped over or having his hands trampled on.

He started nursery vulnerable, relying at three to be carried still, needing adults to guide him, feed him, change him and dress him.

He started school still vulnerable unable to speak, not understanding the world yet and still needing adults to do everything for him.

This year he finishes primary school and he’s STILL vulnerable.

Still non verbal, now with significant learning disabilities, diagnosed autistic, complex medical needs, visually impaired and still requiring adults to dress him, brush his hair, wash him and see to his bodily needs among many other things.

We can all have periods in our lives when we are vulnerable, perhaps driving in an unfamiliar town, starting a new job, living alone, walking in the dark or feeling unwell. Having periods of vulnerability keeps us humble and human but it’s uncomfortable, frightening and damaging to our self esteem.

Most people go out of their way to avoid being vulnerable because the feeling of helplessness is disempowering.

Now imagine how it feels to have a child who will be forever vulnerable.

He will forever be prone to danger. Forever be weak. Forever without protection. Forever easily hurt physically and emotionally. Forever easily influenced. Forever prone to attack. Forever naive. Forever easily taken advantage of.

That’s terrifying.

When people see special needs parents like myself and say things like ‘she’s very over protective’ or ‘still holding his hand at 11? I’d never do that!’ or ‘you need to give him more independence’ I wonder if they understand vulnerability?

Can they see the fear in my eyes, hear the fast beating of my heart and notice the never ending worries swirling around in my head?

I can’t take my eye off the ball. I can’t stop being concerned. I can’t ‘back off’ I can’t die.

My child can’t go out to play, be alone, be sent to the shops for me, go out on a bike, see his friends (he hasn’t got any anyway), or even walk to school. He requires adult supervision all the time and always will.

He can’t speak, he can’t read, he can’t write, he can’t ask for help and he can’t get himself food. He’ll never live independently or work or marry because he will be forever vulnerable.

He was born vulnerable, he has grown up vulnerable and he will die vulnerable. My job as his parent is to protect, advocate, nurture, guide, teach and put in place everything needed to ensure he remains safe throughout his life.

The world is a scary place when you are alone, in the dark, unwell, somewhere new and always reliant on others for everything.

Now imagine you had a child who was forever like that.

That’s what it’s like having a child who is forever vulnerable.