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Autism, Epilepsy and Anxiety in Autism Awareness Month

Autism, Epilepsy and Anxiety in Autism Awareness Month

For parents of children with special/additional needs there is often so much negativity, so much that is hard, so much that makes us want to curl up in a ball and cry.

A few years ago James had his first recorded epileptic event.

Adding a new chapter to his journey that already included chapters called ‘autism’ and ‘learning difficulties’.

His struggles with epilepsy and other significant changes going on then caused him great anxiety, to the point where in the summer of 2017 he just stopped going out of the house altogether; school, clubs, shops, church, his favourite café, everything just stopped… he started a 14-month lockdown, just earlier than everyone else!

For over a year he couldn’t cope with going anywhere.

He couldn’t even manage anything more than a few, tentative, steps out of the back door of our family home to collect things we had left there to try to coax him out, blinking, into the daylight.

For over a year he was isolated from the outside world other than visitors that came to the house, and even then his engagement was limited to a handful of people who he really trusted to get close enough.

Slowly, things started to change.

James unexpectedly agreed to come out for a drive to the local tip, a curious choice for a first trip out after over a year, and hard to create a celebration there, but we did our best.

This innocuous start led to other excursions, to the farm shop, to the café, and by the start of that autumn term we even started to say the word “school” again.

It’s now a couple of years after that initial short trip to get rid of some garden waste, a trip that seemed to declutter something for James too.

As we emerge slowly from another, this time imposed, lockdown, we look forward to reintroducing James to some of his favourite places again; here are a few of them:

The Tip: Yes, it’s still there as a place to visit, James enjoying seeing stuff being thrown over the wall and watching all the huge machines that ‘live’ there.

The Farm Shop: A must for a drive out, James is so well known there that everyone knows him by name, and they order in his favourite iced gingerbread specially.

The Café:  A little grassy airfield near Compton Abbas in north Dorset has a lovely café and we stop there for millionaire’s shortbread and lemonade; a perfect pit stop as James watches the little planes taking off and landing. It opens again in a couple of weeks time.

The Brewery Shop: Yes, you did read that properly, we take our teenager to the Hall & Woodhouse brewery shop, but for him to buy cans of ‘Rio’ his favourite tropical (and definitely non-alcoholic) drink.

And James has been getting back to school too.

Slowly, starting with a short visit once a week and building it up, now he is there for lunch and most of the afternoon, overcoming his anxiety and spending quality time with his school friends and the staff there.

We celebrated his achievements on the last day of term by, you guessed it, going to the tip!

We also went to the farm shop for James to do his shopping and say hello to the lovely staff there.

James was out of the house all afternoon and actually found it hard to come back inside the house when we got home, he wanted to do more.

It’s a million miles from where we were when he was unable to leave the house at all, and we couldn’t be prouder of him…  our awesome, amazing, actually autistic boy!

Maybe you see your child somewhere in James’ story.

Maybe they are stuck inside, anxious about going out anywhere, retreating to the safety of home.

Maybe lockdown has significantly affected their mental health.

Maybe you worry about whether this will ever change, whether there is hope for the future.

James’ story says that there is always hope, always, so take heart, keep persevering, keep on keeping on and looking forward to that day when a simple trip to the tip becomes the best day of your year.

Then make sure the next trip involves a café, and cake!

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Mark Arnold

Meet Our Blogger

Mark heads up Urban Saints pioneering additional needs ministry programme and is co-founder of the ‘Additional Needs Alliance’, a learning and support community. He is a ‘Churches for All’ partner, a member of both the ‘Council for Disabled Children’ and the ‘Living Fully Network’, and serves on the executive for ‘Children Matter!’ Most importantly, he is dad to James, a 17-year-old Autistic boy with Learning Difficulties and Epilepsy.

View Mark’s Profile

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