Tori

Written by Tori’s sister, Penny

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My sister Victoria, known as Tori, was born in May 1958.

 

She was my parent’s fourth child and before her birth they were completely unaware that she had Down’s syndrome. They didn’t even know her sex, as in those days there were no scans.

The first indication that mum knew anything was different was that Tori didn’t cry often. She was a content baby weighing 7lbs 5ozs, mum also said that when the doctors did their rounds they were very interested in Tori’s toes and fingers. However, no one said to either mum or dad that Tori had Down’s syndrome. In fact, the doctors said very little but mum knew that something wasn’t right as she had already had three babies. The doctor’s skirted all my parent’s questions and although my parents were both very intelligent people, at that time doctors were considered to be beyond question so dad said that Tori was their child and they would just bring her home and love her and that’s what we’ve been doing all her life. It’s not a difficult thing to do because she is such a lovely person.

Mum was unable to breast feed Tori as she didn’t want to suck so mum bought a premium quality powdered milk, made large holes in a rubber teat and simply squirted the milk into Tori’s mouth. By the time she was one year old, Tori had doubled her birth weight.

In 1959 we all moved from London to a village in Kent. When Tori was 18 months old mum received a welcome to the area visit from a Health Visitor who said she’d come to see Tori as she had Down’s syndrome, except she used the old-fashioned term. This was the first time anyone had put a name to what condition Tori had.

 

In 1960 my youngest sister was born and that completed our family.

 

Until Tori and my younger sister Wendy were about 10, we always referred to them as the babies and although Mum and Dad had been told that Tori would probably never walk or talk, she did. With lots and lots of input from my older sister Pam, Tori walked when she was about 3 years old and she also started to speak.

In 1962 we moved once again this time to Edinburgh. Tori continued from strength to strength and started attending a special school. She made lots of great friends and the playful, fun-loving side of her personality developed. Once when she was about 8, we went on summer holiday and when we were walking back to our holiday home she ran ahead. When we all reached the house, she’d disappeared. We spent a good 10 minutes all calling her name and searching everywhere. Mum was getting really worried when we suddenly heard a giggle coming from behind the outer front door which had been left open whilst we were out. There was Tori with a big smile on her face. This was the start of many pranks that she would get up to.

When Tori was about 11 years old, she started having Epileptic Seizures. This resulted in trips to the hospital and eventually she was prescribed medication which controlled the seizures completely.

 

In 1970 we moved back to England to a town in Kent. Tori settled in easily and started to attend the local special school.

 

By this time my older brother Jim and my sister Pam had left home so we were a slightly smaller family. The school tried to teach Tori to read. She has always had a good understanding of the spoken word and has a good vocabulary but has never had any desire to read. On one occasion to avoid a reading lesson she climbed out of an open window onto a flat roof and sat there until someone reported to the school that a child was sat on the roof. Another one of her pranks.

 

At about this time, Tori developed a great love of sport.

 

From an early age she had always loved watching wrestling and was always there at 4pm on a Saturday ready to watch the wrestling on ITV. However, she now developed a true love for all other sport whether it be football, cricket, athletics or tennis. Although she didn’t want to read, she was able to count and write down numbers but couldn’t do sums. She would sit with dad and watch sport and would be able to discuss the rules of the game. She would often talk about a football team winning on aggregate and mastered the scoring system in Tennis. She chose not to read but she always knew when sport was going to be on TV.

In the 1970’s legislation changed concerning the education of children with special needs and Tori left her school and went to a daycentre close by. A bus would turn up every morning to collect her and bring her home later in the day. Once again, she settled in easily and made friends.

 

The daycentre was an amazing place with wonderful staff. It had an indoor swimming pool and marvellous facilities.

 

The students there would spend part of their day involved in work. There was a workshop where mainly the men learnt carpentry and produced all sorts of wooden items. Tori learnt how to pack playing cards or spark plugs into boxes and also became very talented at folding maps which isn’t an easy skill to achieve. She was very proud of her work. On a Friday she would always come home with her pay packet. The daycentre also profited from the work carried out and Tori went on some wonderful holidays, even flying over to the Channel Islands, with her friends and staff from the daycentre.

About this time mum felt that Tori could possibly start to decrease her medication for Epilepsy as she had not had a seizure for several years. So slowly the dosage was reduced and Tori suffered no ill effects. She has never had another seizure.

Life continued well for Tori; she took an active part in most things at the daycentre. We had some lovely family holidays and Tori became an aunt to Pam’s baby. She was also a bridesmaid at our brother Jim’s wedding. Dad retired in 1982. By then Wendy and I had moved out so it just left mum, dad and Tori at home. About this time things changed at the daycentre as they stopped taking in the paid work. Sadly, this led to a downturn in the daycentre as obviously a major part of their funding had been lost. The swimming pool was decommissioned and Tori felt that most days all she was doing was colouring in. However, as a family we had some great times particularly enjoying many holidays on the canals.

Sadly, dad died in 1986. Tori took this very hard as she had a very close relationship with dad and his passing was very sudden and without warning.

Outside of the daycentre Tori enjoyed going to the Monday night Mencap club and the Friday swimming club with mum. She also visited all of us in our homes which by now were spread across the country.  In the early 1980’s Tori started to occasionally go to a local respite home mainly for overnight or weekend stays.

 

By the 1990’s mum felt that Tori would benefit from some form of independent living as obviously mum, who was in her 70’s now was beginning to slow up but Tori was only in her 30’s.

 

Mum discussed this with Tori’s social worker and began looking for suitable options. In 1994 Mum, Tori and I visited a lovely new home in Crowborough. We immediately felt it was the right place and Tori moved in and she has lived there since then. The staff are wonderful. The head of care started a couple of months after Tori moved in and is still there and Tori has had the same keyworker for over 10 years.

Tori has always enjoyed living in her new home but she struggled over the first few years whilst she was settling in and had some bereavement counselling to help deal with the emotions caused by dad’s death.

 

She has had some wonderful experiences over the last almost 30 years and has taken part in various activities.

 

Only recently they had a party and she spent the evening dancing with an Elvis impersonator. She has learnt computer skills, archery, painting and Tai Chi to name but a few. She goes to the farm every week and takes part in looking after the animals, growing vegetables and making chutneys and jams. The farm is a project run by Hadlow College and she has received many certificates for her hard work.

 

The other activity that she adores is attending the walled garden.

 

This is a project that is run by a woman who has a large walled garden at her home. Tori takes part in weeding, sewing vegetables and flowers, watering and general garden maintenance. She goes twice a week and loves it. Myself and all of my siblings have visited the garden for open days etc. As well as the gardening she also really enjoys the parties that they have in the potting shed.
Tori’s latest activity is carriage driving.

 

Tori has always been able to occupy herself with activities and never complains of being bored.

 

She enjoys playing cards such as snap, pairs or her own version of patience. She also enjoys looking at magazines and of course continues to be a lover of the TV still enjoying all sports programmes. Her other favourite programme is Star Trek.

Sadly, mum at the age of almost 99 died in 2018. Although Tori was upset by this it wasn’t such a shock as when our dad died as she had been able to see that mum was getting older. On the day that I told her about mum she just looked at me, I thought she was going to cry, but she just said “Is she in Heaven. I said “yes” and she said “with Eric Morecambe” I said “yes” and she then started to mention lots of other comedians such as Bruce Forsyth that mum could be in heaven with. My daughter thinks that in Tori’s mind they’re all having a big party. She now also adds dad to the list of party goers.

When Covid19 struck we thought it was going to be awful as we wouldn’t be allowed to meet with Tori but as they say every cloud has a silver lining. My sister Pam swung into action and ordered Tori a tablet and my brother Jim set up Zoom meetings. We then set about having regular meetings on Zoom. Sometimes it was just the five of us plus Tori’s keyworker Magda and sometimes it was the extended family including Tori’s cousins, nephews, nieces, great nephew and great-nieces. At this time Tori also formed much better relationships with her housemates. Previously, she had always visited one of us for Christmas, birthdays, holidays etc but now as with the rest of the country she had to stay at home. She became much more sociable.

 

Tori has always been a healthy person.

 

She had the normal childhood ailments and on one occasion when she was about 10, she had pneumonia but due to the kindness of our family doctor who visited twice a day to give her antibiotic injections she made a quick recovery. In her 40’s she developed an underactive thyroid but again with medication suffers from no ill effects.
Tori continues to be in good health and recently enjoyed a holiday at the seaside with my daughter and I and then a few weeks later celebrated her 64th Birthday.

 

In all that I have written about Tori the one thing that I cannot fully do justice to on paper is to describe her personality.

 

She has a wonderful sense of humour and always has a witty reply to a question. She is loving and caring and I cannot imagine how my life would have been without her. The whole family feels that it’s a privilege to have her in our lives. She teaches you to enjoy the moment, be kind and not to stress about the small worries in life.

As Tori says be happy and you’ll be happy.

 

 

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