Business woman and loving mum Barbara O'Donnell pens a real life heartwarming story of strength and determination in caring and providing for her disabled son Andy

Having become accustomed to appointment upon appointment and an endless diary of meetings dictating her family’s life, single mum of four Barbara O’Donnell says she came to a decision.
Barbara O' Donnell's real life story of a family living with disabilityBarbara O' Donnell's real life story of a family living with disability
Barbara O' Donnell's real life story of a family living with disability

It was simple, to make sure she was every bit as qualified and knowledgeable as those professionals the other side of the table.

With a steely determination, she says was instilled at a young age, ‘anything’ she believed was possible with the right effort. Her motivation, her son Andy.

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She says: “You couldn’t escape that feeling of being looked down upon - then the idea as a mother you’re too emotionally involved.

Barbara with a young Andy who defied the odds to walk despite prognosis from medicsBarbara with a young Andy who defied the odds to walk despite prognosis from medics
Barbara with a young Andy who defied the odds to walk despite prognosis from medics

“It was that I think that struck a chord and it was ‘right hands on - I’m going to be taken seriously and have the expertise to prove it.”

Barbara, 60, has now penned the extraordinary story in a book ‘Andy and Me: A life for my disabled son' and she says having recorded much of what has happened during their life has been ‘cathartic.’

Her second born Andy, was a healthy,happy and content child. There were no issues with his early development and the young family were enjoying watching his character flourish.

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At 15 months old and Barbara pregnant with her third child the family were dealt a devastating blow when Andy contracted bacterial meningitis.

Andy today lives in his own house with assisted care, pictured with his beloved collection of Mr Men booksAndy today lives in his own house with assisted care, pictured with his beloved collection of Mr Men books
Andy today lives in his own house with assisted care, pictured with his beloved collection of Mr Men books

A missed early diagnosis left the toddler fighting for his life in a coma.

It had been suggested by doctors Andy had a bad case of flu.

Scenario Management business owner and a specialist in care for those with profound learning disabilities, Barbara, who lives in Thornton, Wyre, says it was from that point their lives would change beyond all measure.

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In spite as what she describes as a bleak prognosis for Andy’s future given by medics at Great Ormond Street Hospital in London. She was resolute her little boy would defy the odds.

At the time the family lived in Kent.

Andy was left with permanent brain damage as a result of the infection that had riddled his body. Three quarters of his brain had been killed by the disease.

Barbara says from first regaining consciousness it was immediately apparent her once happy, docile baby was not the boy he once was.

She says: “I was told he’d be a ‘vegetable.’ He had profound learning disabilities and was partially physically disabled. I was told that the best recovery was in the first six months, then

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slow progress may be made in the following two years then after that it was anybody’s guess.

“It wasn’t encouraging and was just so blunt.”

This was 1981.

Undeterred back at home, assisting him through regular practice and small movement, seeing him walk, Barbara knew then he was capable of beating expectations.

However, it was the changes in his personality that would prove the most challenging and as he grew older terrifying for both Barbara and the family.

When her marriage failed, Barbara moved back to Blackpool where she would have the support of her own mother and family.

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She says: “Not long ago I was held up in an attempted mugging, I looked the guy straight up and said ‘Is that the best you can do?’ People would think you’re making it up but the extreme violence and aggression very much became an everyday part of life.

“I could go from having a sweet, cuddly boy to the most off the scale bouts of irrational and uncontrollable violence.

“There was no one who was left willing to look after him. No one was safe. As he grew older, he would attack anyone and had absolutely no conscience about what the consequences of his actions would be.”

Having been removed from specialist schools in Blackpool and Preston, Barbara was left with a heartbreaking decision for Andy to go to boarding school, at a specialist residential in Wales.

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She says: “I had, had a shattered cheekbone, the loosening of teeth, many split lips and black eyes and bruises from full-on punches – that left arm could do real damage, as could his teeth.

“Then there were the other three children - who to this day have shown remarkable resilience and so much love for their brother. In spite of it all they say they didn’t know any different.

“Sending Andy to a boarding school was something I didn’t want but knew I had to do.”

Every fortnight, working and caring for the children, Barbara, would make the drive to go and see him. “I could tell just from his face at the window from the school driveway what kind of visit I’d be in for.

“He’d be waving furiously in delight or just stone faced.”

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Today forward thinking Barbara, teaches and gives regular lectures to students based on her experience dealing with people who have most challenging of disabilities.

Her qualifications include a PGCE, degrees in health and social care, gender studies and a masters in contemporary literature. All gained through her experience, raising four children and later through caring for her mother who had dementia.

Barbara remarried and spent 20 years with loving husband boxer Eamon Glennon. He died suddenly last year.

Her eldest daughter Caroline is a qualified teacher and now also works as a company director and manager within Scenario Management, founded by her mum.

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She shares in the care for her brother, 39, who today lives in his own house in Thornton, with assisted care

“He’s doing really well, he’s intuitive, has a brilliant memory - he loves attention and his collection of Mr Men books, so will be delighted when he knows he has his own book!”

It was a battle, involving legal proceedings, to achieve this course for Andy, and also took the setting up of the company to do it.

Scenario Management employs a team of highly trained carers providing 24 hour care to the young adults, like Andy, who have severe challenging behaviour, profound learning difficulties and autism.

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She adds:“After nearly four years at his school and with the loss of his dad, who had died in car accident, he was deemed ‘unplaceable’ because of the extreme violence that he displayed, which was actually getting worse.

“The school were going to have him sectioned under the Mental Health Act but I stopped them and decided to set up my own business with the help of my daughter, one of my sons and care workers that I knew.”

She is very proud of her ‘fearless’ staff and the hurdles they’ve jumped to see through the company’s recognition in the sector.

Barbara, also mum to sons Bobby and Tommy, says the battles have been long and enduring but the success of the company and the doors its opened to her through the journey have been rewarding.

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The book she says is to promote greater understanding and support for families but also as an insight for health professionals.

“Above anything I’ve been honest- I’m a great believer of taking control of your own life despite what you’re up against.

“No scenario is the same, a person isn’t a statistic - a personal touch is so important. The book may help other parents to find their own voice.”

Not wanting her whole life dictated by social care, Barbara found her outlet in writing particularly when full time caring for her mother, who had dementia.

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“I needed something for myself - I found it in linguistics. I was writing poems, there’s so much sadness in seeing a person you know gradually fade away.

“But I had to laugh at some of it too - it’s how I cope through the laughter.”