‘It’s absolutely exhausting, having a child with autism’
Ellie Sharples first realised there was something was different about George when he was about 18 months old. However, because he has complex needs she thought it might be something else, a hearing problem or his ADHD.
‘I have an older brother who is autistic, and I’ve got an older child, so I was able to compare. But of course my brother’s autism was very different to George’s. As they say, if you’ve met one person with autism, you’ve met one person with autism.’
Ellie watched the first series of The A Word and she could recognise some of the things that the boy in the programme was doing, like spinning and hand flapping. She admits that it was emotional to watch.
After a Facebook message from Autism Jersey asking people to get in touch if they had been affected by issues in the programme, Ellie did just that.
‘I came to Autism Jersey, sat in the family room, and had a good cry.’ Being put in touch with other parents helped, she said, and George goes to the Autism Jersey holiday club.
‘The Family Support Manager has also helped us go through things like the Short Breaks application form, and helped at school when we got our Record of Need set up. It’s all about challenging and pushing for the best for your child.
‘Autism Jersey has been really helpful to us as a central point where we can come and discuss the issues that we have, and you come away with a clear idea of how you can and cannot be helped.’
She also found it invaluable that her husband Mark attend a SPELL course so that he understood the condition.
George’s behaviour can often be inappropriate. ‘He can be in your space, he doesn’t know when to stop, doesn’t know boundaries, and he wants to play things his own way,’ she said.
‘I have to be honest, I didn’t accept the autism straight away. Even when he was being diagnosed, I was thinking, will he be diagnosed or won’t he? So the diagnosis came as a bit of a shock, but since he has been on medication for his ADHD, his autism is really obvious to me now.
‘Now he’s very fixated on certain things and he’ll only eat certain foods – “beige” food which is very common. His meltdowns aren’t huge but he’s very determined, very single-minded.
You have to accept a new reality
‘It’s absolutely exhausting, having a child with autism,’ she adds. ‘He is either on the go 24/7 or it’s a constant battle. For dinner, all he wants every day is chicken and chips, sauce and beans. And you get well-meaning friends who suggest he try something else, and that if he’s hungry, he’ll eat it. But if an autistic person doesn’t want it they won’t have it, to them it’s just not right. It’d be as alien to them as it would be for us to eat plastic.’
If George doesn’t want to participate in something, he’ll just take himself away, she said. ‘They had to build a gate at his school to keep him in the classroom, because he just used to appear in other people’s classes. If he doesn’t want to engage, he’ll just sit under the table.’
Ellie, who is a member of the Parent Carer Forum, believes that early intervention is critical. ‘The earlier you deal with it, the better, so that you are making the right noises and get the support that you need. Once you are on the journey, be prepared for a lot of battles and there’s going to be a few tears, but lighthearted moments as well.’
She said that as George gets older, it gets more difficult. ‘He doesn’t look like he’s got a disability so people might wonder why, for example, he is snuggling up to a stranger. I’m always having to reinforce boundaries, and it’s sad because he still does this with his classmates but they’re getting older. They didn’t mind when they were little.
‘When he is compliant, George can be a joy, he is sweet and loving, and very funny.’
And, she adds, it’s important that if you have a child with autism you accept a new reality. ‘For ages I wanted him to go to birthday parties, but the last one he went to, he sat in the hallway and refused to leave it.
‘Sometimes you get upset about what you think they’re missing out on, but it isn’t actually what they are bothered about. That’s your reality, not theirs.’
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