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'I'd promised my wife that at some stage she could go out to work and I'd stay home to care for our son... I'm enjoying doing that hugely'

 

Ahead of Father's Day, Matthew Milliken tells Stephanie Bell why he was happy to give up a full-time job and devote himself to looking after his son Oliver, who suffers from epilepsy.

Giving up his career to care full-time for his son Oliver so that his wife could pursue her ambitions was something which Comber dad Matthew Milliken always knew he would do one day.

The former youth worker and education manager has been a stay-at-home-dad now for two years where his main focus is on caring for his 23-year-old son Oliver who has severe epilepsy and learning difficulties.

The 54-year-old father-of-three is also studying for a PhD while his wife Moira returns to the world of academia and teaching. Moira (51) has a Masters degree in computer science and a PhD in computer science voice recognition. She also worked at Queen’s University, Belfast, and taught physics which she gave up to be at home with Oliver.

It is a role swap which the couple had always planned since their lives dramatically changed after their first-born child was diagnosed with severe epilepsy at the age of 18 months.

As well as Oliver, they have a daughter Caitlin (21), who is studying medicine in London, and son Myles (17) a performing arts student at South Eastern Regional College.

Moira has returned to work as manager of the School of Computer Science at Belfast Met while Matthew has given up his job working with young people in the community.

He says: “Oliver’s seizures are very unpredictable, especially when he was younger. Moira worked as an academic in Queen’s and taught physics but she had to give it up and work part-time because she needed to be flexible as we could be called to the hospital at any time and have to stay there for several days.

“A lot of our life was like that in the early years,” he recalls. “It was very difficult to build up any sort of career and we decided early on that she would stay home and that, at some stage, we would do a swap. That time came two years ago. I’m happy to be at home and Moira is now delighted to be back teaching full-time.”

As dad Matthew takes his turn to be at home, he recalls the tough journey they have experienced as parents.

He also reveals how turning to alternative medicine not only saved their son’s life when he was four, but helped control his constant seizures so now that he can enjoy a better quality of life.

Matthew says: “Oliver’s first seizures appeared when he was around 18 months old and Moira was pregnant with our daughter.

“A few months later, he was admitted to hospital having had a sequence of multiple seizures.

“Caitlin was born the next week,” he adds. “Over the next few years, the epilepsy took over and Oliver lost many of the skills he had learnt as an infant.  Drugs were tried and failed — tried in combination and failed — then reintroduced and failed again.

“The seizures were unrelenting. They became more frequent and more violent. By Oliver’s fourth birthday his life had been reduced to cycles of seizure, sleep, seizure, sleep. Consultants advised us that his condition was likely to be life-limiting. In desperation, we turned to alternative medicine and found the ketogenic diet. We read everything we could and found an online support group in America.”

Twenty years ago when the Millikens tried the ketogenic diet with Oliver it was very much in its infancy, as was the internet. They did manage to find an online forum of parents using the diet in the US and, with their support, they painstakingly followed it, weighing ingredients to get precise combinations of foods for four years.

“We were told Oliver was dying. His seizures were out of control and nobody knew how to get them under control. No one had a clue,” Matthew recalls.

“With the support of slightly sceptical dieticians, we weaned Oliver on to the diet.

“Slowly the seizures abated — not completely, but enough for Oliver to re-join our world. For four years we constructed special mini-meals, each one precisely calculated to ensure that Oliver received exactly the required quantities of carbs, protein and fat.

“Not a milligram more. Not a milligram less.

“The diet could not be sustained indefinitely — a growing boy needs protein and carbohydrates if he is to continue to thrive. So we, very tentatively and systematically, ‘normalised’ Oliver’s diet. Much to our relief, his epilepsy did not regress to what we had seen before the dietary intervention. 

“Oliver has never been free of seizures. The ketogenic diet was not a magic, silver bullet. It was a tool that served a purpose and helped to restore him to a better quality of life.”

Twenty years on and the diet is now a recognised method of treatment for children with epilepsy and available through the health service.

Matthew says his son enjoys a good quality of life although he does have severe learning and communication problems.

His seizures are partially controlled through standard anti-epileptic medication. While they remain unpredictable, he can go as long as two weeks without one and then have one every day for a week.

It has been a heartbreaking time for the couple who have managed by sharing the care of their son.

“Looking back now, it seems that much of Oliver’s childhood revolved around intermittent hospital admissions when his seizures spiralled out of control,” Matthew explains.

“As the bread-winner, I continued to work while Moira looked after the home, Oliver and his sister Cait. When my boy was residing in hospital I slept in with him. Moira was by his bedside during the day.

“Much as we probably needed it, respite was an unacceptable alternative. How could we trust anyone to look after our vulnerable son when he was so unwell? And when he was well, why would we want him to be away from us? 

“Moira, who had previously been something of an academic high-flyer, remained restricted to part-time and casual work outside the home. I promised her that at some stage we would swap — that she could be the breadwinner and I would become Oliver’s principle carer.”

He adds: “Two years ago we took the plunge. Moira now goes out to earn the family crust while I am undertaking a PhD. This allows me to work largely from home and at times that suits me. I am now Oliver’s stay-at-home dad. An arrangement that both he and I are enjoying immensely.”

Oliver has been assessed as having the mental age equivalent of a child between 12 and 18 months old.

His dad gets him up and washes and dresses him in the morning before he is collected for day care.

If he has a seizure while at the day care centre, Matthew is on hand to go to him immediately. He will also see to his son if he has a seizure during the night.

“It is like having a 23-year-old toddler in the house with all the joy that brings,” he says. “He has a splendid quality of life which is full of laughter and fun. He has a great sense of humour and loves laughter and I’d like to think he is living life according to his capacity.

“Yes, sometimes it can take its toll.

“He has his good days and his bad days, good weeks and bad weeks. He has had a significant seizure every night for the past week as well as minor seizures when he appears vacant. He does need to sleep a lot.

“I’m happy to be at home with him as his primary carer and do my research for my PhD when I can.

“Oliver’s condition is not going to change so somebody needs to be there for him and that will be me for the foreseeable future.

“Yes, I did love my job and I can’t see myself going back to full-time work but I’m happy with the flexibility I have.

“Maybe after my PhD I can continue to do research from home.”

Matthew paid tribute to the charity Epilepsy Action which has been a huge support to the family and also to a team of carers from Prospects who keep Oliver company to give his parents a break.

Both he and Moira are reassured to know that through Epilepsy Action there is greater awareness now and, that thanks to the charity’s work, research into epilepsy is making headway.

He proudly wore his purple Epilepsy Action wristband when he flew to England recently as part of the first Ulster University team to take part in BBC2’s University Challenge, which is hosted by Jeremy Paxman.

The local team will appear in the new series starting next month and Matthew is sworn to secrecy about how they performed.

He says: “I wore my purple Epilepsy Action band proudly and (hopefully) conspicuously throughout the filming. The band ensured that Oliver was with me when I faced down Jeremy Paxman.”

As for the notorious Paxman, who has been dubbed a “Rottweiler” for his relentless grilling of politicians, the local dad found a different side to the man who he described as “a wee dote, honestly he was a dote. He was easy and welcoming, he was brilliant”.

Neurological condition affects nearly one in 100 people

  • Epilepsy affects an estimated 63,400 children and young people aged under 18 in the UK
  • One in every 220 children will have a diagnosis of epilepsy
  • Research has shown that 95% of children with epilepsy experience significant difficulty in at least one area of learning or behaviour
  • Epilepsy is a life-threatening neurological condition that can affect anyone, at any age and from any walk of life
  • Epilepsy is defined as the tendency to have epileptic seizures
  • There are around 40 different types of seizure and a person may have more than one type
  • There are about 600,000 people with epilepsy in the UK — around one in every 103 people
  • Every day in the UK, 87 people are diagnosed with epilepsy
  • It is estimated that with the right treatment the majority of people with epilepsy (70%) could be seizure free
  • Epilepsy Action has produced a free online course for school staff to help them improve support for students with epilepsy which can be accessed at epilepsy.org.uk/schools

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