Devoted Camelon dad gives insight into 60 years of caring for his Down's syndrome daughter

For Jeanette Burt, known as Netto to her loved ones, had been diagnosed with Down’s syndrome, a condition which six decades ago much less was known about and families were often advised to lock their children away in care facilities.

It occurs when babies are born with an extra chromosome and it is now known that it is more likely to occur the older the mother is when she conceives.

Back in the 1960s many parents were given little support or information about the prognosis for their child, although it is now known that while a youngster will have a degree of learning and health difficulties, they are capable of learning, developing, and living fulfilling lives.

As her 60th birthday approached, dad Pat, now 82, put pen to paper to record his daughter’s story – and pay tribute to his wife’s devotion and unwavering commitment to give Jeanette the best possible life, something Mary did until her death 18 months ago.

The Camelon dad’s words give a remarkable insight into how care and perceptions for those with Down’s syndrome have changed over the years. Here is an extract of that story.

Jeanette was born to my late wife Mary and I, on May 9, 1965 – first baby to the Burts, both 22 year olds who married in February of the previous year. My pride, joy and love, abruptly replaced by abject fear and anxiety on learning the baby was to undergo immediate tests to ascertain the possibility of Jeanette being diagnosed with Down’s syndrome.

“What on earth is Down’s?” my initial reaction to the young doctor who broke the news: fear of the unknown my overwhelming emotion during those early hours and days of our new baby’s life. Put simply, could we support and raise this child on our own, it initially appeared to us both we were being encouraged to consider an institutional alternative.

Acting in haste, led to me making probably the most foolish decision of my life. In a bravado attempt to prove both caring and protective, I decided to tell no one of the doctor’s fears until the tests were concluded, which was a lengthy process back then. I considered Mary deserving of at least a couple of weeks of blissful motherhood, pending the results. The caveat I insisted on and to which the maternity unit agreed was non-negotiable, I alone must be the first person informed of the test findings.

Some weeks later a letter arrived inviting me to attend the maternity unit as soon as possible, next day we were due to take a short holiday with my parents.

Dear Mary, blissfully unaware of my deceit, decided to put the baby in the pram, proceed hastily to the hospital, to ensure knowing the results before going on our short break. Regrettably and despite assurances given, they agreed to tell her the findings. The trauma of those few minutes must have proved horrendous. Having taken the initial decision I thought of as the most compassionate became, in reality, an action which will haunt me for the rest of my life.

That dreadful walk home on her own with Jeanette left her disconsolate, and with little recollection of the rest of that day. I arrived home from work soon afterwards to find her overwhelmed by grief, having locked herself in and no knowledge of where she had laid the key

With no phone or any form of communication, Mary understandably wanted to get the news to her mother as soon as possible. We got a taxi, packed a few things and headed to her parents, a few miles along the road at Bonnybridge where, much to their credit, they invited us to stay.

This proved critical in a way that could not have been foreseen, a few days into our stay, Jeanette developed a hack under her left ear, Mary and her mother Jenny Ryan took the bairn to see Dr John Rankin, he said very little but promised to call in during his rounds the following day.

Having done so and unknown to us he consulted a specialist friend who worked in this field, within a week Jeanette had a range of four different medications, unfortunately the infection continued too spread encroaching almost her entire scalp.

At 11pm on the Saturday night at the end of that week, Dr Rankin called back with a recently developed medication. He returned on three more occasions over the weekend, by Monday lunchtime it could be clearly seen the inflamed area had reduced and by Wednesday there was no sign of the infection. There can be no doubt Dr Rankin and his NHS colleague saved Jeanette’s life.

Years later he confided in Mary, due to lack of natural immunity in Down’s infants if that final medication had failed, she would most certainly have died: a few days in Bonnybridge was a life saver for Jeanette.

A week or so later Mary and I both agreed if we were to make a go of this parental business, our best option for all three was at home making the difficult decisions that confront all parents and to do so as soon as possible.

Another important factor arose shortly afterwards following a meeting I had with Falkirk housing department. On learning we were determined to bring up our child in circumstances far from ideal, our outside toilet the most obvious failing, the council to its credit, offered us a house in Camelon which was a blessing.

Mary to be fair stayed silent at the prospect of me returning to my home patch, of much more importance, she liked the house and area and grew to love our next door neighbour Wee Kitty. In time she was akin to a surrogate granny to both our children, being particularly supportive in Jeanette’s early years.

Those days spent in our new home with our new daughter, proved exciting, informative, and exhausting. Like all couples new to the baby business, we hopefully learned from each long day and night. Jeanette’s needs where no different from any other child of her age: she became for us the sole source of our learning process, she very quickly learned the skills (crying) for expressing disquiet if her attendant “students” were found wanting in the baby care business.

The new house afforded the opportunity for my mam and dad to walk along and see their new grandchild. Papa Wullie quite ill and off work at the time, revelled in his duties, doing on foot the equivalent of today’s pharmacy deliveries.

Naturally we attempted to measure Jeanette’s progress relative to babies of her own age: one wee girl in particular lived only a few doors down and with only days separating their birthdays, comparisons were inevitable. We found it encouraging Jeanette was holding her own in many aspects while accepting some things would and could change very quickly. She appeared upset when Mary and I praised her early and welcome success re potty training, while ignoring us when chided about “walking” around the house on her bum for over two years.

Around this time I began to notice how much love and effort Mary was devoting to our daughter, doing things for her, and more importantly with her became the norm. The efforts she made particularly with speech, pronunciation and in time reading was something Jeanette benefitted from ever after.

While still an infant we recognised not only was she attempting to read and speak the words, she was striving to understand them at the same time. Mary had succeeded in teaching our daughter to read or at least attempt to read headlines in newspapers and magazines, prior to her receiving any formal teaching.

When nearing school age an inspector from the education department visited our home to assess Jeanette and consider the best way forward. After several discussions it was agreed to have her at home till she was six years old before attending nursery school at Dorrator Road. For at least a year I was unsure if this was the way forward but with little or no evidence to inform us otherwise we decided to go along with this well meaning advice from the professionals.

In the event Jeanette attended the nursery school for almost two years followed by a further three years at Torwood School, a special unit administered within the education department, and finally she was offered a period of three years at Dawson Park School, one of the earliest schools designated for special needs children.

I can say with total conviction she benefited greatly from attendance at all three establishments, due in particular to the dedication and skills of the wonderful staff at all of them.

The question of Dawson Park, was for several reasons the most difficult to make, many of its pupils had dropped out of mainstream schools for various reasons, some associated to general bad behaviour, including violence.

Understandably this made Mary very anxious and concerned about Jeanette’s safety. Following much discussion we agreed for our daughter to attend the school with the proviso she would during the first term be closely monitored and assessed before any further discussion on placement took place.

Full time employment restricted my access to the school, I did nevertheless visit as often as possible. I had a duty and responsibility to ensure all was done that could be done to provide a successful outcome for Jeanette’s education at Dawson Park. I visited and met frequently with staff and on one occasion had a brief discussion with the then director of education, Mr H. Lynch.

It is true to say Jeanette’s time at Dawson Park was not one of wine and roses, she worked extremely hard to overcome some upsetting, fairly predictable issues. I still harbour no doubt she greatly benefited from her time there, which improved the quality of her life and also without question helped all our family.

Leaving formal education created a new anomaly, how best for Jeanette to progress in terms of quality of life and the satisfaction that can accrue.

Both mam and daughter were totally against Jeanette joining any of the after school facilities on offer, her mother determined they would work, learn and play together, including household tasks and duties done almost exclusively while listening to the best on offer from Radio 2. By this time we had moved to our new home in Dorrator Road, in fact very close to the nursery she first attended.

We will never know even with the unrivalled benefit of hindsight whether in fact we made the correct decision on Jeanette’s future, possibly denying her the opportunity to progress further in terms of achievement and satisfaction.

Towards the end of Mary’s long illness we very occasionally gave thought to this, we both found satisfaction in being confident we had always acted in what we considered the best way forward for Jeanette. We also agreed none of this would have been achieved without massive input from the wee girl herself.

Most who know me would agree, modesty has rarely featured in my CV. This then should reinforce the certainty I have of my wife Mary’s “overwhelming” responsibility for Jeanette’s achievements, quality of life, and the high esteem she accrued from all who have known and loved her over the years, in essence it became Mary’s defining quality.

Early on Netto began to develop a love for things she then sustained for most of her life, music and dancing as a first and always first many times over.

From the days of Elvis, Perry Como all the way to ABBA she would and could have a full on discussion on their relevant lifestyles and in particular the records they made, while giving sage advice as to there best and worse songs.

Around this time she became fascinated with all things Marilyn Monroe, accruing a library of books and films that filled half of her bedroom unit, she loved nothing better to air her candid views on Norma Jean and the Kennedy Brothers.

Not long after joining Torwood we went on a regular trip to our friends in Liverpool, Jim and Helen. We had visited them at Fazakerley once or twice a year since they moved south, Jeanette being only a baby when we first went.

Fate decreed Netto visit the local GP with a bad chest cough which occurred frequently on these visits, to the extent Mary was on first name terms with Doc Jim. Hailing from Glasgow only encouraged their chats, and before leaving on this occasion he enquired of Mary, when’s the next baby due? She told him we had been advised having a first child with Down’s increased the chances of it occurring again, “Bloody Nonsense” he retorted, I don’t want to see you or Jeanette back here until she has a little brother or sister.

Strange to say his demand came to fruition Mary giving birth to William within a year of his sound advice, we cannot recollect making any decision one way or another regards a new baby, following his comments, it probably had more to do with having the fear factor eroded.

We obviously gave some thought as to how the “Boss” would react to her new sibling, she simply continued as “Boss” but now for two. To to be fair she loved the bones of her new baby brother to the degree she regularly questioned her mother’s use of certain foodstuffs and materials associated with his wellbeing.

Other subjects started to appear in her portfolio of interests mainly football related with its increasing coverage on TV – she was from the beginning a Celtic fan, at a time when it was far less rewarding than it has been of late. Akin to all her interests she was full on, at the publication of the fixtures at the beginning of the season, she would copy every one into her personal diary, adding the score and comments as the season progressed. I believe peer pressure finally told on William, he indeed was quite taken with Aberdeen but the Boss wasn’t long in knocking that nonsense into the long grass.

Jeanette displayed even more capacity for sport during a period of illness leading to surgery for her auld dad. 1986 saw the first season of horse racing coverage by the Channel 4 Racing Team. It coincided with weeks I spent on the couch watching as much sports as possible.

Seeing this as an opportunity to look after dad, she went with her usual full on attitude, taking the racing section of the Record through her room of a morning she would reappear at coffee break with comments like “I see Wee Carson riding for The Queen today, I fancy that, I also like the look of Piggott in the last at Newbury” – it was simply astonishing. Please note any bets placed were by way of Monopoly currency.

When the Channel 4 team asked for comments at the end of their first season, I seized the opportunity of advising presenter Brough Scott of Jeanette’s exploits on my behalf. The resulting invite for both of us to attend a National Hunt fixture at Doncaster in December1988 with all expenses paid was as exiting as it was unexpected.

We had a great time and met a host of celebrities and spent a fair time with Jonjo O’Neill, a lovely man who introduced her to trainer Peter Easterby. He in turn was astonished when Jeanette, looking at her race card said “I see you have that horse with the funny name in the 2.30”(Nohalmdun). He was speechless and gave her a big hug in admiration.

With regards Celtic, we managed along to several games, but the noise became a problem, she more enjoyed the visit to the first class training facility at Lennoxtown or a trip round Celtic Park during close season.

Brother Wulls’ intervention on another occasion led to her meeting a celebrity from another well known club. We took Jeanette to the Craws Nest Hotel, Anstruther for the weekend of her 21st birthday and approaching dinner time a coach drew up in the car park. We watched in awe as Alex Ferguson alighted from the bus carrying the Scottish Cup, won by Aberdeen that day at Hampden. As could have been anticipated Wulls gate crashed their party, insisting Fergie gets his photo taken with his sister on her 21st. Much to his credit he came in to the dining area and proceeded as instructed the picture is one of many to enhance her room. She has referred to him ever since as “Alec”. None of your Sir nonsense.

Mary sadly towards the end spent more than five months of her life in hospital, discharged via a care package for four plus years, at home like all else she dealt with the situation bravely and with courage. Half way through this most difficult time including dealing with a pandemic, it’s hardly surprising we began to see a major shift in Jeanette and mam’s quality of life.

She became increasingly aware of how ill her mother was, whether this accelerated the onset of Alzheimer’s we shall never know, following the diagnosis Jeanette was cared for by Dr Perera and his quite wonderful team. Within weeks he managed to plateau the advancement of the decease, giving her a little respite from this awful degenerating condition.

It had been long agreed that with the passing of her mother, Jeanette's Alzheimer’s left no option but to seek a facility providing full time care, the duties of looking after the everyday needs of an adult lady, along with the absence of her late mother proved unfortunately, to be beyond the gift of her father.

Two of Dr Perera’s staff worked relentlessly to find her a facility with a reputation for care and compassion: both these criteria have been clearly achieved with Netto finding a place at Glenbervie Care Home.

Is it any wonder that I marvel at what Mary was able to achieve with regards to the quality of our lives, by her guidance and encouragement Jeanette has lived life to a degree we never thought possible.

Wulls latterly, a major factor in Jeanette’s and indeed all our lives. Our quartet in time became a sextet, augmented by the addition of my daughter in law, Wendy and my wonderful granddaughter Bella.

If there is only one couple out there, who can garner some understanding and perhaps courage from this wee tale I would be thrilled. Thankfully we are increasingly aware of the trauma and helplessness visited on parents of a Down’s child in the past, the high incidence of these babies going directly into care clear evidence of the stigma accorded the syndrome.

With a much informed and greater understanding of the condition, Down’s people can at last begin to play a role in society to which they are both capable and entitled.