Daily Mirror (Northern Ireland)
PADDY MCGUINNESS EXCLUSIVE
‘Our hearts are broken.. the twins have autism but we’ll never stop battling for them'
It was 5.30am and rain was pelting down outside Paddy Mcguinness and his wife Christine’s home. Their four-year-old daughter Penelope stood pounding on the patio doors, desolate, crying and frantic as one of her toys was outside getting wet.
Most parents would tell their child to calm down and go back to bed.
But Paddy, 43, star of TV favourites Take Me Out and The Keith and Paddy Picture Show, knew the only thing to calm Penelope was to rescue the toy.
“She was upset because it was one of her toy sets that she has to keep together,” he explains. “And, of course, it was raining and the sensation of rain distresses her.
“She was becoming more and more anxious, and when she is like that it can last for the entire day.”
It’s one of 100 small but exhausting daily incidents which now shape family life for Paddy and Christine – because Penelope and her twin brother Leo are both autistic. Earlier this month, Christine posted a poem on Instagram paying tribute to everything the children had achieved in the year leading up to their fourth birthdays.
It was the first time she or
Paddy, who also have ninemonth-old daughter Felicity, had revealed publicly their twins have autism.
Now, they’re talking about it fully in the hope it might be some encouragement to other parents bringing up autistic children. And perhaps, one wonders, so they too might feel a little less alone.
The past four years were clearly a long, lonely struggle for the pair trying to understand their children’s difficulties, until
November, when autism was mentioned for the first time. “We’d been to see a paediatrician and at the end she said quite casually, ‘I’m absolutely certain both the children have autism’,” Christine says. The couple were stunned. “I was so angry with her,” Christine, 29, goes on. “How dare she say that about my children, having only seen them for a few hours? I can say that because I’ve told her it since and she’s been absolutely lovely. But I was totally stunned.
“It was the first I’d ever thought of them having autism – even if, looking back, it was obvious.”
The pair returned home, crushed by what they’d heard. A formal diagnosis followed three months later. “The only way I can explain how I felt was a sense of grieving; grieving for my ‘normal’ children,” says Christine, who threw herself into researching the condition and how she could help her children. While the thought of them having a lifelong condition was devastating, finally having an understanding of their behaviour brought comfort.
“The twins were our first children and we’d never had any babies in our immediate family to compare them with,” says Christine.
“When they were little they would make funny noises and when they started to walk they were on tip toes.
“Their eye contact wasn’t brilliant and they had very delayed speech, but the health visitor would say it was just because they were twins.
“It’s only recently when I’ve looked back at home videos and done research that I’ve seen so many of the signs of autism were there but we didn’t realise.”
After having the children, Christine gave up her modelling career and threw everything into motherhood.
“I was with them all the time,” she says. “We never had a nanny or anything and Paddy was in the middle of filming, so he went back to work when they were four days old. So for
a long time I wondered if I’d wrapped them in cotton wool and made them too sensitive.
“They were very sensitive to noise and if I took them to play centres we’d end up having to leave straight away. They couldn’t bear different textures like grass and sand and I was still spoon-feeding them. Leo still only eats beige, dry food like crackers or crisps.
“I thought as a mother I’d created their personalities and so I just went with it. If they didn’t like a place because of the noise or number of people we just wouldn’t go again.”
As the pair neared three they became increasingly anxious about new experiences which they seemed unable to understand and process.
Unable to speak, they couldn’t explain their distress.
Christine says: “I’m sure some of my family thought I was depressed the Christmas they were two because I didn’t put up any decorations, but I just knew all the lights and unfamiliarity would really distress them.”
When anxious or over-stimulated, both twins used to make high-pitched trilling sounds or flap their arms.
Leo might behave more obsessively, perhaps spinning the wheels of his toy car. Penelope will cry and become introverted.
To try to protect their children from the outside world, which they clearly found distressing and frightening, the family rarely went out.
Christine shunned red-carpet events to stay at home with the children – who they are keeping out of the public eye – leaving them for just one night when she gave birth to Felicity.
Paddy, meanwhile, spent weeks commuting back and forth to London for filming, rather than leave Christine to cope alone at home. “And, of course, we could never explain to people why we weren’t going to places – mainly because we didn’t know what to explain,” says Christine. “Instead, we were making endless excuses.”
It was only when they were referred to the paediatrician that the behaviour they’d tried so long to manage was finally explained.
Support and understanding from the local authority’s special education needs team kicked in. The children are now attending a nursery for a few hours each day.
Meticulous planning is crucial to prevent the children becoming upset.
Christine and Paddy use pictures to explain to the children words and events they cannot process. Pinned on the hall wall is a weekly chart. It’s Monday when we visit and so the chart shows pictures of Mummy, Daddy, car, nursery and home. The twins have markedly different personalities. And different presentations of autism, which can vary enormously.
“Leo laughed from about seven weeks old and still does now,” says Christine. “He’s a really happy boy.”
Paddy explains: “He likes a lot of warnings in advance of something happening.
“He has more symptoms of autism which people would recognise, such as he likes to open and close doors.
“If you walk in the front door and shut it behind you, which is such a routine thing to do, he’ll be really upset as he’ll want to shut it.”
Christine adds: “And I know if I am driving them to nursery and a particular parking space isn’t available, Leo probably won’t get out of the car. Penelope is the complete opposite to Leo. She’s much more emotional. Her autism is more moderate than Leo’s but we struggle with her more.
“She doesn’t like physical contact like a cuddle. She’s full of anxiety and prefers to play alone a lot, but doesn’t necessarily want to be alone.
“It’s difficult to watch my baby dealing with emotions she shouldn’t be dealing with at the age of four.
“Penelope will only get in the car if Leo is already there. She has a more varied diet than Leo but she can become obsessed with certain foods.
“If she has a bag of Wotsits she’ll want another and another, so you have to empty the bag then say there’s none left or she can’t understand why she can’t have them.”
Paddy says: “It’s difficult to get hugs and cuddles from Penelope, but if she ever gives you a hug or some kind of affection you feel as though you’ve done something special to get that response.”
I’ve looked back at home videos & seen signs but didn’t realise then CHRISTINE AFTER DOING RESEARCH ON AUTISM