About Down's Syndrome : John

Written by his mum, Liz


Our second child was born on New Year’s Day in 1969 in St Mary’s Hospital, Portsmouth. He’s now 51.

We were thrilled – we had a daughter, and now a son. But our happiness bubble popped on 2 January when we found the consultant studying the lines on our baby’s hands and he told us, kindly but shatteringly, that our son had Down’s syndrome.

Most parents who have been through a similar experience will be familiar with the torrent of emotions we went through. Joe, my husband – ever practical – was the first to reach a level of equilibrium. ‘Well, he isn’t the son we wanted, but it’s the one we’ve got’ I remember him saying. ‘So we must just make the best of it’, and that soon became easier.

John’s grandmother – who we called ‘Mops’ – wrote a poem called My Grandson when he was a baby. Here is an extract:

“One had left home a week ago. Now two
returned, and with the coming home of that
small boy a new love came into my life;
a love protective, yet intent to fan

each spark of interest, strengthen tiny limbs.

My little John! What yearning prayers are said
for you, called after one so sorely missed.
Yes, we named you John, ‘Gift of God’; then
who are we to question His bestowal?

Cradled in my arms, my daughter’s son, so
rapturously welcomed, seeming perfect,
and now so dearly loved.”

At Christmas, shortly before, we’d written in our annual letter to friends and relations, that Lucy was about to have a little brother or sister. Now we followed it with another round-robin, with news of our unexpected situation, and hoping that they would welcome John as they had Lucy. By a lucky chance, one of our friends, two hundred miles away, had a colleague who had recently heard an inspirational talk by a special needs teacher called Rex Brinkworth.

Meeting Rex

We were put in touch with Rex and took John to Birmingham for an assessment and advice. We came back with his schedules of detailed instructions for helpful techniques and stimulating activities which were invaluable, and they helped us to have a more positive attitude towards John and his development.

When we heard that Rex was starting a Down’s Babies Association we went to Birmingham again – to the Harborne and Quinton Community Centre for the meeting, and so have been members through its various changes of identity ever since!

Local support

There was nothing locally for the under-fives with learning difficulties. Joe, my husband, always an action man, soon became secretary of the local Mencap society and started a monthly meeting in a local Red Cross hall for parents of the under-fives with their young. From this grew the local ‘Opportunity Group’ in our newly built Mencap hall for under-fives. We met Sue Buckley and became involved with the group she started in Portsmouth. Her research has led to DownsEd – though that was too late for Jonty.

The old ‘Junior Training Centres’ had just changed to ‘schools’ when John was ready to start, and he enjoyed life, there and at home. We lived in a close of 17 houses and the other children there took him in their stride and included him in their games. Especially after the arrival of his dynamic little sister Kate, four years later!

Leaving home

At sixteen, John left home for the first time for a two-year stay at Lufton Manor Rural Training Unit in Yeovil, Somerset.

When the staff there noted the way he behaved when we visited, compared to the time when he was just ‘one of the lads’, they said they felt he really shouldn’t live at home, but should learn to be more independent. At the time, a couple we knew were about to start a small care home (I hate that word in this context!) in our area, so John moved into ‘Thistledown’ five miles away, with a group of other lads.

Mencap were also starting a horticultural centre at Blendworth, a few miles north, so the lads went up there by minibus to spend satisfying days digging, planting, chopping wood, going out to maintain the grounds of local factories and homes, and generally having a useful and sociable time! ‘Thistledown’ changed hands to a lovely Indian family and activities continued. In the evenings they went to classes at a local college, to a weekly meal at the nearby carvery, to ‘Friday Club’ and discos at the Mencap hall or just ‘chilled’ in their house. It was a good life, with frequent weekends and yearly holidays with the family!

Family

Although John grew up nearly 200 miles from my mother, she still enjoyed spending what time she could with John and Lucy. She loved visits and holidays with us and, like everyone else, enjoyed giving John help and encouragement in any way she could. John’s two sisters (and latterly their ‘other halves’) as well as relations, friends, staff, carers and, most of all, his late father have been unfailingly positive assets throughout John’s life

John’s sisters are incredibly supportive in every way. Friends of Kate’s took John to London to a karaoke place and skittles for his 40th birthday. He also had a big fancy-dress party for friends and relations.

Just as well! By the time of his 50th birthday things had changed. The dreaded Alzheimer’s had set in, and John is now in a care home that is geared to cope with his ever-changing and more challenging needs, which they do brilliantly.

When John was born, the average life expectancy for a baby with Down’s syndrome was nine years as I remember.

Huge strides have been made, both medically and in terms of what we can now expect our children to achieve.

For that, we have Rex Brinkworth, and those who have continued his work to thank.

 

NB: Since writing this piece, John has sadly passed away, but his family wanted to keep their words and his memory alive.

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