Parents frequently talk about having rough days but few have the challenges that face Sheila Devlin Mulligan.
Her two beloved boys Shane (18) and Conor (11) have Angelman syndrome a rare neurodevelopmental disorder characterised by severe intellectual and developmental disability, sleep disturbance, seizures, jerky movements, frequent laughter or smiling, and usually a happy demeanour.
Sheila recently spoke on radio to Neil Prendeville on Red Fm about her sons’ condition as she was alarmed about the possibility of huge bin charges with the introduction of the pay by weight scheme. Her boys go through around fifty nappies a week and much of their medical paraphernalia is not disposable.
Visiting Sheila at her in her house in Cobh I was met by a woman who has a profound love for her boys. She has been living with the condition for eighteen years and says it is “normality” for her.
Sheila had Shane when she was just twenty years old. He failed to reach the developmental milestones yet doctors repeatedly told her it was just late development.
Sheila said she instinctively knew that there was something more serious coming down the line.
“Shane wasn’t meeting the milestones. He never slept as a baby. His feeding was horrendous. He just wasn’t a typical little baby. We were going to doctors for seven years before Shane was diagnosed with Angelman’s. I was told the chances of this happening again were fifty-fifty. The advice was not to have another child. I went on to have another child and I was told before Conor was born that he had Angleman’s.
Sheila says whilst both boys have Angelman’s Conor was a completely different baby to his older brother. Conor had dozens of seizures a day and his parents quickly realised that he was going to have more issues than his older brother.
He has had a lot more setbacks than Shane and is currently being peg fed, which breaks Sheila’s heart.
“I really hate that he is being peg fed. I hate that he can’t eat foods orally. He is standing there at four o’clock screaming for food because he ate for ten years. So he knows when you have chips on and he wants a chip. I have often got so frustrated. I often give him a taste of yoghurt. It is wrong but it comforts him. Or we can be sitting in Nando’s as a family and everyone is eating and poor Conor is sitting there. You are breaking a piece of chip praying it will go the right way. It is like the Last Supper. And then people are looking at you as you are not feeding one child.”
The family has a wonderful home help who comes for two hours a day five days a week. However, life can be very tough.
“Sleep is an issue in every family with Angelman’s. Conor could get up at 2am and that’s it. If he is up, I am up. If Conor wakes Shane he is up as well. A typical night is very little sleep. I adore respite cos I get in to my bed and stay in it for eight hours uninterrupted sleep. On a typical night I go from bed to bed with the boys. My only problem is that we are going to lose the respite for Shane now that he is eighteen as there is no adult respite services available.”
Sheila and other parents in her situation have got together to fight for respite for adult children with disabilities but the Government is failing to pay attention to their concerns.
“It’s a shut door. Shane is finished in August so I have respite for just one more month. I will have it for Conor but it won’t work unless both boys are gone. You need the respite for your marriage. You need it for yourself. The kids need it too as they get to socialise.” Conor spends a lot of time in the Mercy Hospital, which is a “home away from home” for Sheila. The staff onsite have helped her tremendously over the years and she has been known to have a Chinese meal ordered in late at night. She is also hugely thankful for the assistance of staff at the Cope Foundation.
Sheila says her boys will never live independently. She is concerned for their future and knows residential care will have to come in to play when she becomes too old to mind her sons.
“I dread the day I won’t be able to lift and pull and look after them. They don’t speak. But they are aware of what goes on around them. When you read all these stories about abuse in the care homes and you know that is where your kids are going it is a black place to be. I try to block it out but it is always there. I wonder if they are better off in care before I pass away. I want them to stay together.”
As there isn’t a huge deal of awareness about the syndrome people seldom understand what exactly is going on in relation to the boys other than they are in wheelchairs. By and large Sheila has received nothing but kindness from the people of Cobh. However, there have been a few isolated incidents in Cork over the years.
“In Cobh people just know my kids. They know I have two boys in the chairs. I was in the train station one day and I had Shane with me and this woman sat beside me and she said ‘Were you taking drugs when you were pregnant?’ I was very upset. I was only about 23 at the time. I rang my husband crying. We have met really ignorant people who just stare. If we go for something to eat Shane might have a hissy fit and slap me and that draws attention.”
The boys, Sheila stresses, are a “bundle of joy” despite the myriad of challenges they face.
“They are my life. They are really happy kids. Happiness comes with the syndrome. They don’t cry tears unless they are really in a bad way. They do this fake crying like babies do. One lady said to me one day ‘I can see the world through his smile.’ Conor catches people’s eyes and he just smiles at them and he is able to draw people to him. Even when we are in a shop I will be standing in a queue and people will comment on how happy he is.”
She is keen to dispel the notion that what she does for the boys is anything other than the ordinary. She particularly hates this notion of God giving special kids to special people.
“Or people say things like God gives a cross for people to carry. I look at ‘normal’ families and I don’t know how they do it. I don’t have worries that other people have. I don’t have teenagers out getting drunk or drugs. I don’t have the stress of Leaving Certs or Junior Certs. I see a typical child and then I look at mine and I think ‘how lucky am I?’ I have two beautiful kids with big smiles.”
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