Cork mother explains pandemic to son with Angelman syndrome as 'virus in the sky'

Conor (14) has been tube fed since he was nine. The boys are also in nappies with the household going through an average of fifty diapers a week.

Nearly a fortnight ago Conor was seen by a doctor amid a bout of vomiting and diarrhoea.

A test for Covid-19 was arranged as a necessary precautionary measure and the boys have been cooped up in the house since.

Even if the test comes back with a negative result the brothers are facing into weeks if not months at home.

Sheila says understandably they have lost their home support and respite until the test results come through.

She says that everyone is doing their best under the circumstances. However, the situation is taking its toll on her vulnerable sons.

"My older boy Shane is getting depressed. He is gone very quiet and is crying all the time. They don't understand why they can't go out. It is like a punishment for them because they don't understand why they are locked in the house.

"I think they feel they are being punished for something they didn't do. They have a lot of anxiety.

They have absolutely no understanding of what is going on. They just think they are being kept in. I keep saying "there is a virus in the sky and we can't go out" but they can't see why we can't go out. They can't make sense of it.

Individuals like Shane and Conor thrive on routine. Prior to the crisis, they attended Cope Foundation facilities from Monday to Friday.

Home support workers brought them to Cork city centre or Fota Wildlife Park on Saturdays and the boys went out with their parents on Sundays.

Sheila says that the Covid-19 virus and the resultant near lockdown is particularly heartbreaking when your children do not even understand why they are being kept in.

"Shane has been sleeping right through the day because he is so depressed. There is no day or night. He is crying and crying but he can't express why he is crying. The woman who comes into the boys every day is great but she just can't come in until we get the results.

"I don't think Conor has Covid-19 but he had the test because he has underlying issues. On the day the doctor saw him he was vomiting and had diarrhoea. He was very sick so they didn't want to take any chances.

"We had a two-hour wait for the test in Pairc Ui Chaoimh. The girl who was doing it was very patient with him. She was gentle and did it in his time not her time.

He didn't know why he was there. It is an invasive test. But they (the HSE) are doing the best they can. Everyone is.

Sheila is grateful for the Home Support package she receives for the boys and for the vital respite they obtain once a month. She is resigned to facing into months of isolation with her husband and two sons.

"We are going to be quite isolated. Even if we get a negative result it doesn't mean you are not going to catch it

"I know isolation. We have great support but you still feel isolated (bringing up boys with additional needs). When the home supports are gone and you are there on your own 24/7. It is a different form of isolation. It is social isolation. “

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"Luckily Shane likes puzzles and glueing stuff and things but it’s a real torment for Conor because he likes to be on the go. He is a very active boy.”

The situation is particularly hard on the family as her boys are normally very upbeat. Angleman syndrome is characterised by sleep disturbance, seizures and jerky movements. However, persons with the condition generally engage in frequent laughter or smiling, and have a happy demeanour.

Sheila had Shane when she was 20-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 50-50. 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.

Sheila says 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 because I get into my bed and stay in it for eight hours uninterrupted sleep."

The Mulligan boys will never live independently.

Sheila and Colin are concerned for their future and know residential care will have to come in to play when they become too old to mind their sons.

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.

Sheila 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.”