Jane Renouf set up the Facebook support group for parents
Jayden is sitting on the floor doing something he loves: drawing. He happens to be wearing a tail and ears because today he thinks he is a fox.
His colourful trucks and tractors are lined up by the fireplace.
His mum, Jane Renouf, is explaining how he was first diagnosed with autism.
‘At mother and toddler group, Jayden was never playing or singing with the other children. He would be at the back of the hall, flapping and jumping. He would line up cars and scan them really closely with his eyes.’
When Jayden was just 18 months old, a friend who worked with children with autism suggested that she could see traits of autism, something Jane didn’t know anything about. ‘I looked it up on the internet, read about the signs, took an online test, and it was a question of tick, tick, tick, every single box. I started watching him more, and the more I watched him, the more I could see that what I was reading about was him.’
A referral swiftly followed from the GP, and a diagnosis came when Jayden was just three years old.
Despite Jayden being her seventh child, Jane had initially thought that he was just hard work. He had been ‘a nightmare’ in town, for example, and he couldn’t sit still. She bought baby reins which she used back to front to keep him in his buggy.
‘I avoided town for a few years,’ she says. ‘He just wanted to flap and jump on the patterns of circles on the pavement. He wanted to flap and jump there for hours. I couldn’t move him. Automatic doors were a massive issue too.’
A lot of people think – especially when they see a younger child having a meltdown – that they are just being naughty.
‘If you can see a disability, that person is given some space and some help,’ Jane said. ‘Jayden, if he’s out and doing something, even just flapping or throwing himself around, is classed as naughty.
‘I was trying to get in through the automatic doors of a shop once and Jayden was on the floor at the entrance screaming the place down. Someone passed me and I heard them with the sigh and the tut-tutting because they had to step over him, and I thought, if only my day was as easy as yours.
‘When he is kicking and screaming and lashing out, you can’t pick him up and get him into the car. You have to wait until it passes.’
At mother and toddler group, Jayden was never playing or singing with the other children. He would be at the back of the hall, flapping and jumping
Every year Jayden goes to the panto, and each time the family are able to stay a bit longer. They sit in the front row so that he can stand and jump and flap as much as he likes. The cast know him – but in the early years, Jane says, you could hear the reaction of other people, tutting and sighing.
It led her to get T-shirts printed with ‘autism awareness’ on them which drew attention to her child’s autism.
‘Well, suddenly that was a different story. I didn’t feel anyone was judging me. In the interval people were even coming up to me saying, “We love your lad, isn’t he enjoying himself”.’
Jane has since used the same technique when travelling by boat or by plane because it makes people so much more accepting.
During a meltdown, she says it is easier if members of the public leave her alone. ‘If you stop by in the supermarket and say to Jayden “You’re not being a very good boy for your Mummy, are you?” it makes him a thousand times worse.’
In April 2015 Jane set up a parents’ support network. In less than two years, they welcomed their 100th member. The group is run through a closed Facebook page but members meet regularly for coffee mornings and during the school holidays.
Jane appreciated the support that she got from Autism Jersey in the early days. ‘I didn’t know what to expect and it helped that a member of staff came with me to diagnosis meetings, and they gave useful advice, such as suggesting the idea of a weighted blanket.’
Jayden, with his fox tail and ears, bounces back in the room and declares: ‘I want breakfast.’ Cereal is currently one of the few things he will eat and it doesn’t matter that it’s 5 pm. It’s only in the last three months that he has been able to ask for a drink or food.
Now that Jayden is six, Jane’s main challenge is getting him to go to school, even for a few hours. But he can be up at 4 am saying ‘no school’, the anxiety is so great.
As for hopes for Jayden’s future, Jane, a residential childcare officer, just hopes that he is always well looked after. ‘He will always need a level of care, and we will look after him as long as possible. Fortunately he is surrounded by siblings who love him dearly.’
Asked about the joys of life with Jayden, Jane’s husband, Ian, explains: ‘He’s the most loving child you’ll ever meet. He doesn’t lie. He won’t deny it if he has done something wrong. If he has drawn on the wall, for example, he would just say “I did it”.’
Jane adds: ‘You know what? He makes us laugh every day. He is a pleasure to be around. He puts a smile on our face every day.’
*If you are inspired by Jane’s story, please support us so that we can continue to support adults and children on the autism spectrum.