Family Matters: I dream of enjoying an afternoon nap

Milena Galisi and her son Antonio
Milena Galisi and her son Antonio
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Julia Armstrong talks to a single mum about the challenges of working full time and looking after a disabled child.

FOR busy working mum Milena Galisi, her day has already started by 5.30am, when she peels the potatoes for her son Antonio’s lunch.

She’s not indulging a fussy eater but, as a seven-year-old who has Down’s syndrome and is on the autistic spectrum, Antonio has very definite tastes and crunchy food goes down best. “I prepare roast potatoes for him before I go to work in between doing my make-up! The first thing I do is peel potatoes while I’m putting water on for my coffee.”

Milena, who is a single mum, works full-time at South Yorkshire Housing Association in Sheffield as an enterprise officer. The enterprise team seek to find additional streams of income for the housing association and also look at where savings can be made.

She had Antonio when she was almost 42 and came to Sheffield to study for a master’s degree, then stayed on as she got a job before she qualified. She is originally from Sao Paolo in Brazil but had lived in several other countries around the world.

Milena fell pregnant during a short-lived relationship and found out that Antonio was a Down’s child while she was expecting him. Doctors also discovered that he had a major heart defect and he was born in hospital in Leeds. She said: “The nurses said I didn’t buy anything for him. I just wanted to do what other mothers do, go to Mothercare, but I was trying to prepare myself for the worst as he had a severe heart condition.”

Showing typical determination, she managed to finish her masters degree while in hospital with Antonio.

He had major heart surgery over the first two years of his life. Two years ago Antonio had to go back into hospital have two stents fitted to keep his pulmonary artery open. He also has hearing problems and has been diagnosed with ADHD (attention deficit hyperactivity disorder).

She added: “For Antonio it’s like a normal life. The next day he was in the swimming pool, against his doctor’s advice. He was begging me to go. He’s a very resilient little boy!”

Milena, who returned to work three months after Antonio was born, said: “In Brazil there wasn’t welfare state when I lived there. I think that affects my attitude. I have a very strong working ethos. I don’t see working and being single as a problem. I think my situation has made me stronger and wiser.”

She added: “One of the challenges is having a positive attitude to disability. I see lots of covert prejudice. We get a lot of attention because we are different. People are not used to a mother who works but I don’t want to live on the benevolence of the government.”

She realises how worrying it must be for families with disabled children who rely on benefits, as government spending cuts may affect them.

She added that her job gives her a sense of direction.

Milena is full of praise for her bosses and knows that she couldn’t work without an understanding employer. She said: “My employers have been my best friend. So many times when I am about to step in meetings I will get a call from the school with something to deal with about Antonio.”

She says she often has to make phone calls during working hours, juggling appointments for various health and education-related issues.

She is also grateful to social services, which have helped her get specialist care for Antonio for 11 hours a week, using his personal care budget.

They come at weekends to support her, looking after Antonio while she gets on with cooking and jobs in the house. They also help Milena to take him out to the swings or swimming and they have meals at home or in restaurants.

She said: “I’ve got the best carers. They understand my needs. We do things together. I’ve learned to be very assertive. I need all this support in place for me to function as much as I can.”

Milena keeps to a strict routine as this helps Antonio to cope: “He loves routines. I like it as well because it’s more predictable for me.”

It also helps that Antonio is now settled into a school that he likes. He goes to Mossbrook School, which caters for children with a wide range of special needs.

Milena said: “I tried two years in a mainstream school. It was the worst nightmare of my life. They didn’t understand his needs. I was bullied almost every week to take him away from school.

“I talked to social services and told them it didn’t work. His behaviour deteriorated and he didn’t progress.”

She says that Antonio’s behaviour can be very challenging but believes that the frustration of his situation at school was making things worse.

She added: “He’s ever so happy at Mossbrook. He’s starting to progress. He gets his uniform out in the morning because he wants to go.”

Antonio is now starting to speak, although the school also teaches children Makaton, a type of sign language, to help them communicate. He also goes to after-school childcare. Milena said: “Work is a piece of cake compared to organising childcare when there is a breakdown.

“Antonio needs a normal setting but one to one. Because of his ADHD he can’t function in the same way as other children.

“He doesn’t sit still for three minutes. If you sat reading a book with the other children he would be two miles away in minutes!”

Milena says that she is worried that Antonio doesn’t have any friends at school yet.

“She feels that the nature of his disability means it can be very isolating.

She does get a break when Antonio stays with his dad regularly.

That will enable her to take a week off to volunteer in an orphanage in Romania with disabled children.

It will be the first time she will be away from Antonio for such a long time.

“I think it’s payback time. Antonio is very lucky because he lives in a good country and has good healthcare. I am very grateful for that.”

Antonio spent Christmas with his dad and his family, so Milena was also able to volunteer for Homeless and Rootless at Christmas, who step in to provide meals and somewhere to go over the festive season in Sheffield when the Archer Project closes for a fortnight.

She said: “I’m not doing that to save the world, it’s purely self-fulfilment. It makes me feel good. It’s very selfish!”

As someone who is busy all the time, she admits: “My biggest dream is to have a nap in the afternoon! As simple as that. Watching a rubbish film on TV without any worries. That’s never happened.”

Milena sums up her philosophy: “It’s not a tragedy, it’s life. You just get on and deal with it if you take a positive approach. I think I am more stressed now but I am a better human being as well.

“It gives you strength of character. I met really good people along this journey.”