About Down's Syndrome : Sanjiv

The life and times of Sanjiv Malviya, by his brother Vinesh

Sanjiv Malviya was born in March 1963, (aged 57) at Charing Cross Hospital, London. He is one of three siblings, of parents who came to the UK from Kenya in 1961. He currently lives in the London Borough of Harrow and has lived in Harrow for over 38 years.

The most important people in Sanjiv’s life are his immediate family, existing of both parents and two siblings and a sister-in-law, whom he could not be without. He also has a great relationship with his extended family members, having over 25 cousins and many nephews and nieces, and still growing today, making him a very proud cousin and uncle. He is very protective of his siblings and will always comfort them if they are ill and show affection to all his family members without bias, even though he has a soft spot for his younger brother.

One thing that set him apart is that he will always remember his grandparents. He has been fortunate that he got a chance to know them and enjoy time with them before they all passed away. His dad’s parents died in the 70’s but he still remembers them fondly. His last surviving grandmother (mum’s mother), died in 2010, and Sanjiv will make reference about her to his mum, which is nice that he can remember his grandparents.

If you are meeting Sanjiv for the first time, he will not be shy in talking to you and introducing his family to you. He takes great pride in his appearance and will make it known if he does not like wearing something that does not flatter him, and will insist to attend a barber for his monthly haircut and will tell everybody and anybody that he has had a new haircut and will want people to acknowledge his new look, but also praise his new smart appearance.

What matters most to him is that all people treat him the same as others, and he will always take pride in telling people who he is, what he likes and enjoys, and which people matter to whom the most.

People say that if you meet Sanjiv once, you will not forget him easily, as he makes a lasting impression on people.

He rarely forgets faces, even if he has not seen them for month’s even years.

The Growing Up Years for Sanjiv Malviya

When Sanjiv was three years young he was placed in Muswell Hill Centre for handicap children, which he really enjoyed. Over a period of 10 years, he was moved to various day centres, as the placement could not keep him, due to his needs and requirements, funding and transport problems, but he never complained and accepted the various upheaval.

At the early stage in his life, Sanjiv was described to be an ambulant, content, lively, active, and curious child. Sanjiv was always boisterous and kept his other two siblings on their toes.

In the 60’s, the understanding and knowledge of having a severely disabled child was limited and the care provisions from local authorities for immigrant parents was non-existent, as was the support needed for Sanjiv to develop as a person. There was always a battle with the local authority as to what support Sanjiv needed and what support his parents needed/required.

The challenges faced by Sanjiv and his parents in the 60’s and 70’s, meant that they struggled to cope with a very energetic child, and not having a disabled person in the family meant that there was no knowledge as to how to manage and look after a disabled person, let alone your own child. The only solution to this situation was to offer an opportunity for Sanjiv to be moved outside the family borough, and in desperation his parents had to send him to Hales House, Winteron-on-Sea, in Norfolk.

The experience for both for Sanjiv and his parents was quite stressful and daunting that he would be moved over 140 miles away from his family. Initially it was very painful and depressing not to have Sanjiv at home with the family, and even friends visiting found it very difficult to handle. As a family we visited Sanjiv on a monthly basis, because it took over four hours to drive to Norfolk, as there were no major motorways then. It was always lovely to spend time with Sanjiv even if it meant only for a few hours. Sanjiv loved his time in Norfolk, with the fresh air and all the open surroundings, making the most of the opportunity to enjoy activities such as playing at the nearest beach and enjoying the open air environment. He was well looked after by the home staff, because they had an ethos to ensure that children, no matter if disabled, had the right to have a childhood to remember, enjoy and fulfilling.

Like most children, once you hit a certain age you are classed as an adult and you are then transferred to adult Social Services, who have a different approach to services for people with disabilities. So when Sanjiv reached a certain age he was moved back to Harrow, where he was placed in various respite care homes, whose main aim was to keep people under ‘lock and key.’ Not to be seen or heard, which meant that the life that Sanjiv had in Norfolk, was lost, because the aim of the local authority was to provide care at the lowest costs and service requirements.

In 1982, Sanjiv was finally moved to a newly built residential care home for people with disabilities in Harrow. This was a newly developed home whose aim was to make this a more ‘homely’ environment. Living in a residential home with other people with various degrees of disabilities was not ideal, which meant that it became a bit of an isolating experience living there, but overall Sanjiv enjoyed his time there and made many friends with other residents and staff.

In September 1983, he moved from a 20-person residential home to six, and this meant that Sanjiv was now going to be living in a ‘home’ environment, and not an institutionalised environment.

Sanjiv was very fortunate at that time as his closest friends also moved into this new home called Roxborough Park, in Harrow. He had his own room, which looked and felt like the room he had at the family home, where he could be more relaxed about how the room was decorated and furnished with personal items, such as a TV/DVD player, posters and pictures of family.

At the same time as Sanjiv moved to Roxborough Park, he attended Bremer Day Centre, in South Harrow, which was good in one way, as he was with his friends and was gaining some social and educational skills. He had experience of working, even if it was for a brief period. A company called Remploy employed people with disabilities to work in a factory environment, undertaking basic manual labour. There Sanjiv worked filling boxes with goods and other jobs required throughout the factory. He enjoyed working as many of his friends worked alongside him. Unfortunately, like most things associated with disabled people, the company could not financially continue and his employment came to an end.

Sanjiv has now moved to a larger residential home, but luckily for him, all his friends moved with him. It’s been another challenge for Sanjiv and the family to readjust after living in one place for 25 years, but the financial needs of the council meant that Sanjiv, his friends and staff had to move to save the council money.

Sanjiv is now at an age where the signs of aging are slowly reaching him, and creating more challenges for him to face. He is taking life at a leisurely pace now, but still likes his creature comforts. He has achieved many things from a child growing up in the 60’s, when care for disabled people was not fully known, to living away from his family, trying to fit into society when there are obstacles placed in-front of him and the family.

Coming to terms with the fact that he is not a young person anymore, and that he has to overcome new challenges, which he will do with great spirit and determination. He has many hidden talents, which come to the forefront, if you get to know him.

Living through the COVID-19 pandemic

Today, during the COVID-19 pandemic, it is a very different world that we live in, and it is especially true for people with any form of disability, who have little or no understanding of the world having a ‘pandemic’.

Sanjiv usually lives at a residential home, but due to the pandemic has been with the family since mid-March, and so throughout the lockdown, has found it very difficult to understand why he could not go back ‘home’.

On the one hand, Sanjiv has enjoyed his time with the family, even when there was a full lockdown, but on the other hand he found it difficult, as he missed his home, bedroom, friends and staff at the residential home.

The pandemic has brought about many challenges/restrictions, which has meant Sanjiv’s passions for swimming, cinema, discos and going to the pub have been curtailed, and not knowing when ‘normality’ will restart, has meant that Sanjiv and many like him, have had to live with a very restricted life. This has meant that the family are constantly telling him that he cannot go back home, go swimming or even go to the pub for a nice pint of beer, even when the weather was lovely. He has had to adjust to wearing a face mask and gloves now that he can go out, which has been difficult to explain the reasons why he must do so for his own safety and others.

Only recently Sanjiv was allowed go back ‘home’, but only to go and visit friends and staff at the residential home, but that meant he could only stay in the garden and was not allowed to enter the building and see his own bedroom, which for someone like Sanjiv, who has missed his own ‘creature comforts’, was very difficult.

We suppose being ‘safe and healthy’ at this time, is more important than trying to be adventurous.

The support that Down’s Syndrome Association has provided with various advice and guidance, tips and tools about how to cope in these abnormal times have been invaluable and have been a great source of comfort that we are not alone in these times of uncertainty.

The Likes and Loves of Sanjiv Malviya

Sanjiv spends most weekends at the family home, when he goes swimming, to the gym, cinema, pub and visiting friends and family. On a monthly basis he attends a disco, at a proper nightclub, run by Watford Mencap.

Sanjiv loves dancing and partying and will be the first on the dance floor, showing everybody his moves.

He actively participates in various charities social clubs for disabled people such as Harrow Mencap, Watford Mencap, Phool Wadi, Tanglewood and Harrow Gateway.

Sanjiv loves listening to music of all genres, but mainly the 70’s and 80’s. He can easily recognise a song from listening to a few notes and lyrics, which is quite remarkable. He likes concerts and has seen bands such as Queen, U2, Human League, and one of his favourites, Kylie Monogue. At times it has been difficult getting the right tickets to accommodate Sanjiv with his disability, which is very frustrating and common for quite a few people who are disabled.

Like many people, Sanjiv likes eating and drinking, and that usually means a trip to a pub for a nice pint of beer and some pub food. We would describe Sanjiv as a typical ‘Brit’ on holiday when it comes to food (chips with everything), and drinks. He loves his pub food and cannot resist a portion of fish and chips on a Friday.

One of his many passions is going to the leisure centre for a leisurely swim. You could describe him as a ‘water baby’, and enjoys spending time paddling in the pool. There has been an attempt to coax him to use the gym to improve his well-being, but that has been one thing that he has resisted.

Sanjiv has been brought up as a Hindu and he takes an active role when any religious celebrations are taking place at home or at the local temple, and he visits the Bhaktivedanta Manor, commonly known as Hare Krishna Temple, in Aldenham, Near Watford, Herts, on a regular basis.

He has been lucky that he has travelled to many countries, such as South East Asia, India and most of Western Europe. He likes his annual holiday in the sun, where he can indulge in his usual lounging by the poolside, swimming and holiday food of chips with everything, even though we do control that urge on holiday.

Sanjiv loves celebrations of any kind and always gets excited about Diwali, and major Hindu religious events, and Christmas – especially carol concerts and pantos.

His birthday is always a matter of major celebration for him and the family, and he will remind everybody that his birthday is coming up, even if it still months away. All major birthdays have been celebrated with a party and on his 50th; this was a major event where over 150 people attended.

Sanjiv has a really good memory and can remember people whom he has not seen for months and even years, without any hesitation. He often recalls the places he has visited even if it has been some time since his last visit, and remembers who lives where and will point out if we drive near to that person’s house.

He has a fascination with murder mystery dramas, such as Inspector Morse, Lewis, Poirot, Midsummer Murders, and Murder She Wrote. We have no idea why he likes murder mysteries, but he gets totally absorbed in the dramas. Also he likes Westerns and his favourite movie character is John Wayne. One character he tries to emulate is James Bond and pretends he is James Bond. For his 40th birthday celebrations the theme was James Bond, and people dressed up as 007 or characters from the movie. Sanjiv’s favourite movie of all time is Sholay, which is a 1975 Indian action-adventure film. Sholay is considered a classic and one of the best Indian films. It was ranked first in the British Film Institute’s 2002 poll of ‘Top 10 Indian Films’ of all time. In 2005, the judges of the 50th Filmfare Awards named it the Best Film of 50 Years.

Sanjiv does not generally like animals such as dogs and cats, but when it comes to exotic animals such as snakes, spiders and reptiles, he will be the first in the queue to play with them, which shows he has no fear about these types of animals.

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