You

THEY ARE ONE OF US

You
By Erum Noor Muzaffar
Tue, 03, 20

This week You! features SCINOSA, first home of its kind for children suffering from Down syndrome in Pakistan ...

This is a true story of Mr A.S. Muslim, a brave man, who fought tirelessly for something that was unheard of in Pakistan in the late ’50s. Today, we all are more or less aware of Down syndrome and there are centres for mentally challenged children but at that time there was little awareness and literally no centre for special children. Mr Muslim noticed that his first-born child was slow. He was different from normal babies. The baby was diagnosed with Down syndrome. Mr Muslim didn’t know what to do with the child. Finding no facility in the country for the education and training of mentally challenged children, Mr Muslim made a general appeal through newspapers for advice and assistance. He received an overwhelming response from other parents in the same situation. Inspired by the pleas, Mr Muslim organised a core group of parents, doctors and philanthropists who finally succeeded in forming SCINOSA (Society for Children In Need Of Special Attention) in 1962. The objective of the Society was to create a forum for educating and training of children with Down syndrome, to help them become self sufficient and useful members of society.

It was all possible due to the efforts of Mr A. S. Muslim who undertook a tour of a number of European countries in 1961 and utilising his business contacts, visited several institutions engaged in the education and training of the mentally retarded in Belgium, Holland, Norway and the U.K. It was during his visit to Norway where he visited a centre for special children that Mr Muslim discovered the model he was looking for. Hence, SCINOSA Day Home (SDH) was established in 1962 on the pattern of Ragna Ringdal’s Daghjem, Oslo, Norway in a rented building in P.E.C.H.S, Karachi. The school was shifted to a bigger premises in 1972 in North Nazimabad with the help of philanthropists like Mr G.D.Tharia and Mr Hameed Habib who donated generously for the new building.

Fast forward, today SCINOSA is viewed as one of the best institutions for mentally challenged children. As they say seeing is believing, recently, I visited the school on one bright morning. I was really impressed to see the state-of-the-art building, situated in the heart of North Nazimbad, designed by architect Mr Minoo Mistry. The building was neat and clean, equipped with all the necessary facilities including playgrounds, swimming pool, recreation area, a gym and music room. Meeting children with Down syndrome, was an overwhelming experience. They were engrossed in their own little world - some were busy painting, some were making different craft, some were learning basic Math, some were exercising, some were playing games etc. They all greeted me excitedly and chatted with me. Though their language was not very clear, I was touched by their innocence and simplicity.

What is heartening to note is that the focus is not only on educating these kids but also on teaching them different skills which will enable them to do their daily chores independently like changing clothes etc. These children are constantly monitored by especially trained teachers. In each class of 8 to 10 students one gets to see 2 to 3 teachers who make sure to give individual attention to each child. At suitable intervals, full vocational training e.g. woodworking, weaving, cane work, stitching, sewing, block printing, painting, needlework, cooking, candle making, and various household chores are added to the programme. The school has its own band and a scout master. The primary aim of the whole programme is to instil in the mentally challenged person, a sense of usefulness and acceptability in the society at large.

So, what’s the modus operandi of this school? In this regard the scribe talked to Rizwana Khanum, who has been the principal of SCINOSA since 2014. “Our method of education is completely different from normal schools. Since we deal with Down syndrome children there is no age limit of admissions. Normally we take children up to 12 years of age but we also accommodate children more than 12 years of age. We also have some students who are 35 plus. We don’t refuse admissions. However, there is an admission process. First we take parents’ interview, and then we evaluate the child’s progress. We have clinical psychologists on our panel who come and evaluate child’s mental growth.

“Once they are admitted, they will remain in the school for lifetime. Where will they go? We have some children who come to us after they graduate from different special schools. Poor parents don’t know what to do with them. So you see we not only admit these children we kind of ‘adopt’ them. Teaching personal hygiene, care of personal needs, social behaviour, mutual tolerance, acceptance and adjustment and encouragement to come up to social norms are some of the things we teach to our children,” explains Rizwana.

“In addition, girl-guide & scouts training, scout camps, picnic and many other programmes which could help development, have been introduced. Speech and music therapy are regularly practiced improving communication skills, motor coordination, sense of balance thus improving the quality and enjoyment of daily life. We try to encourage children to be less dependent on the parents, being helpful at home and eventually become economically self reliant in some measure,” adds Rizwana.

Sharing some heart-wrenching experiences, Rizwana tells, “Parents who come to us belong to different backgrounds and they are normally anxious about their children’s future. We have a student named Ali. Once Ali’s mother told me, ‘Rizwana, I want Ali to go back to God in my life. For God forbid if I die, who will look after him’? I could feel the pain in her voice and that’s so heart breaking. Then there are orphan kids. We have this orphan girl Sara who lives with her chacha. Her uncle does not give her the kind of attention and care that she deserves, so we try our best to give emotional support to such kids, besides giving them financial support.”

Talking about the expenses, Rahat Khan, one of the members of Board of Directors says, “We have a Governing Body who runs this whole organisation. Every month our expenditure comes around 12,500 PKR only per child hence sponsorship comes around 150,000 PKR only per child. There is 100 per cent transparency. Accounts are audited. We send a daily report to the Board of Directors who make it a point to visit the school at least twice a week to see smooth functioning of the organisation.”

So do you have foreign donors? “We don’t have foreign donors. It’s a complicated process. If we want foreign funding e.g. from USA then we need to have a governing body in the USA too. At the moment, we don’t have that kind of resources and contacts. You need a big team like SIUT. Indus Hospital has a big team; TCF has a big time; slowly and gradually we are also in the process of expanding our operations. We are constantly in need of funds and donations to carry on our work,” stresses Rahat.

Do you face non-cooperation from parents? “Yes, in some cases negligence on the part of parents really bothers us. You see, when someone sponsors a child, it becomes our responsibility to see if the child comes to school regularly or not. In some cases, parents become relaxed and they don’t send their kid to school regularly as he/she is not in their priority list. Since, they don’t pay from their own pockets; they don’t feel the pressure. Dealing with such parents is a constant struggle for us,” laments Rahat.

On a brighter side, SCINOSA has been instrumental in bringing a positive change in the life of hundreds of Down syndrome children. As Rahat puts it, “As always the goal of SCINOSA is to teach the students to be independent and useful members of society. To this end they have been encouraged to make various items for sale. The students are now making khaddi cloth which is selling well. Other items include envelopes, gift bags and paper bags. This year again, SCINOSA Day Home has organised various functions and activities to create interest and awareness among the students. In this we received help from various organisations and individuals, which we gratefully appreciate.”

SCINOSA is not only the pioneer, it has been and continues to be the leader in providing care, training and rehabilitation services to the children afflicted with Down’s syndrome and mental retardation in Pakistan.

Some key facts regarding Down syndrome

  • Down syndrome is a genetic condition. It is not an illness or a disease. Down syndrome is a condition in which a child is born with an extra copy of their 21st chromosome - hence its other name, trisomy 21. This causes physical and mental developmental delays and disabilities.
  • A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, flat facial features, small head and ears and a protruding tongue.
  • Down syndrome affects kids’ ability to learn in different ways, but most have mild to moderate intellectual impairment.
  • People with DS are very different from each other, just as we are all different. Every person with DS is unique, with their own talents, abilities, thoughts and interests. While one person may read very well but find basic mathematics difficult, another might be a first-class cook and live independently in the community, but will have to work hard to speak clearly.
  • People with DS experience all the same emotions as everyone else. They get happy, sad, embarrassed, frustrated, thoughtful and fall in and out of love, just as we all do. They may, however, find it difficult to express their feelings in words. This can lead to frustration and the expression of feelings through behaviours.

TIPS FOR PARENTS

  • Your baby is a baby first. Do not compare your baby to typically developing babies. Kids with DS can and do learn, and are capable of developing skills throughout their lives. They simply reach goals at a different pace - which is why it’s important not to compare a child with DS against typically developing siblings or even other children with the condition.
  • Give your child chores, but make sure to consider his or her mental capacity, attention span, and abilities. Divide tasks into small steps. Explain each step to your child until the chore is completed. Children with DS are visual learners, so demonstrating an action for them can really help them connect what they are learning.
  • Whenever possible, give your child a choice. This will help them feel empowered and it will also minimise negative behaviour triggers. By allowing the child to choose between items you have already approved, you won’t have to force choices upon them. These can be simple choices, like what cereal to eat for breakfast or what shirt to wear to school.
  • Comparing notes with other parents of children with Down’s syndrome is helpful but it must be remembered that each child will follow their own path. It is important not to make too many predictions as to how far and how fast the child will develop but the mood should be one of optimism and reasonable expectations, as for all children.