The setting for this special occasion is a swanky pizzeria in Chelsea, London filled with family and friends, all in attendance to celebrate Madiha’s fifth birthday. The youngest of 3 children, Madiha was born with a genetic disorder, an extra chromosome, specifically the Trisomy 21, which leads to a condition we know as Downs Syndrome. This is one of the most common genetic disorders found in the world but with extraordinary developments in psychology and medicine, the quality of life of children and adults with Downs, has been greatly improved. But certainly not for all and not everywhere. In Pakistan, not only are neurological and physical abnormalities considered tragic and hopeless but not enough awareness or resources are found in the public or private sector to educate people about them.
Shama* who resides in Lahore, was going to have her first child in her 30s and was riddled with the usual concerns of delivering her first child at this age. She found herself placating these concerns alone, no constructive advice was given by the top notch gynaecologist she had chosen on potential problems, foetal disorders, precautions or special nutrition needed to promote the healthy growth of her child. She never received the screening for Down Syndrome, neither the blood test which is ubiquitously available in foreign countries, nor the ultrasound or invasive procedure which has been available with private practitioners in Pakistan for a while. It wasn’t until she held her new born in her arms that the paediatrician informed her that he suffered from Down Syndrome. There were no months of preparation, researching, arming oneself with information and the skills to cope with the upcoming arrival of a special needs baby. Just set home with a discharge slip that read ‘baby born with Down syndrome’, without any guidelines on how to proceed, what their next port of call should be and where they can turn to for support. Fast forward to two years later and Shama is on one of her frequent visits to the cardiologist’s office to check for congenital heart diseases which are a common occurrence in such children. In response to her query about what options were available for her son in terms of therapists and schools, the good doctor replied, “There’s nothing you can do about him, he has no future. You should put him in some vocational training program when he grows up, that’s all you can hope for”. If this is how the so called enlightened ones are reacting, what can we expect from others?
The National Center for Biotechnology conducted a research into the ‘Experiences of parents with a child with Down syndrome in Pakistan’. The findings, taken within a religious and cultural context, were in contrast to those generally seen in western societies. In Pakistan the birth of such children was either considered ‘the will of God’ by the families or in contrast “a divine punishment” by other members of society implying that it was a spiteful reaction of God towards something the parents did.
Setting aside mythical causes, in actuality Down syndrome is a genetic aberration which manifests itself in multiple ways. Intellectual ability can be greatly impaired requiring individualised and need-specific education depending on the severity of the condition. Eye disorders as well as hearing impairment are also common in such children requiring constant medical monitoring by families and heightened sensitivity amongst care and education givers. Shama, who has visited countless centres and institutions to find a nurturing and conducive environment for her son feels the intention might be a noble one but the implementation is poor. “There are a handful of places you find out about when you ask parents of children with other kinds of disabilities to recommend a place where my son can go to. But these are the kind of places where the instructors might be trained but the environment will not be a stimulating or clean one. Such children have very weak immunity and excessive lethargy. Lumping together a bunch of children with extremely varied disabilities such as autism, physical disabilities as well as kids like my son, is not the best thing for them. I want my son to have the same exposure as other children, so he can develop his interests and abilities the same way, is that too much to ask?”
There are a handful of organisations such as Kiwanis Club of Karachi, Rising Sun Institute in Karachi and Intitute of Psychology Islamabad working privately and independently of each other to provide skill training and basic education to such children. But as there is no concentric body monitoring these institutes, it is hard for parents to know if they will empower their children to adjust into society as a whole or treat them as marginalised and maladjusted individuals. There are glaring irregularities within such institutes as several parents are put off with messages such as ”we are trained to deal with different forms of mental retardation including Down syndrome, Asperger (autism) syndrome” on the websites. If the approach is to categorise children with disabilities as “retarded” then how are these professionals going to empower them to lead “normal” lives?
“Young children as well as adults with down syndrome living abroad go on to achieve amazing feats, in theatre and dance and sports, there are countless websites, forums, city wide groups that help families and children cope so they can be the best they can be. But here, they are sentenced to a life of isolation as mainstream schools don’t accept them, healthy nurturing environments are scarce. Even extracurricular activities such as art and dance classes being conducted privately would not include these kids as the teachers feel untrained to handle such kids or possibly do not want to put off other clients”, laments Shama.
Madiha, on the other hand is fortunate enough to attend The Canadium Trillinium School in Dhaka, a recently opened mainstream educational institution which is inclusive of children with special needs. Children like Madiha are thriving in such an environment as they are able to interact with children their age in a natural setting and imbibe and learn a great deal from being around their peers. This has allowed Madiha to be an independent, curious and extremely confident young lady who is eager to take on new skills and manage her own needs with least dependence on care-givers. Her mother Zeeba insists, “Parents tend to take on too much pressure when they have a special needs child and they feel life has come to a stop. They should find the best possible tutors to help supplement their learning and should expose their child to the world, travelling, interacting with different people and environments so they can grow in confidence and aptitude. My daughter receives excellent academic reports in school and is only marginally behind children her age which is incredible. It all has to do with the love and support we give them, if they are raised to believe they are no less than anyone else and they can do anything, then they will!”
[quote]Schools in Karachi, Lahore and Islamabad rarely have inclusive policies in place[/quote]
Unfortunately mothers like Shama have not been so lucky, as schools in Karachi, Lahore and Islamabad (not even taking into consideration the smaller towns and cities) rarely have inclusive policies in place nor the inclination to adopt them. Shama explains, “I have approached countless private schools trying to convince them to allow my son to attend classes with age-appropriate peers so that he can be in a stimulating environment with his own remedial teacher that we have hired. It would also help the other children understand this condition better and make them more accepting and sensitive. But schools are unwilling to spend their resources, be it money or time, on this. For the sake of foreign certification they might advertise that they extend admission to special needs children, but I know what the ground reality is”.
Nonetheless the benefits of technology and a world of online information at our fingertips partially make up for the dearth of local forums and organisations in Pakistan. The UK NHS website provides a plethora of resources ranging from emotional to psychological support for families. It also presents detailed and systematic advice on the involvement of speech and occupational therapists, physiotherapists, dieticians, audiologists, ophthalmologists and cardiologists to address the medical needs of such children and to outline opportunities for further education, career development and even fertility treatments for adults with Down Syndrome to foster relationships and have a family. Several benefits of horse-riding have also been propagated by researchers such as the Triangle Down Syndrome Network, suggesting that activities involving interaction with such animals, even therapy dogs, help to stimulate coordination, muscle strength, body awareness and patience, and inculcate an overall sense of well-being.
[quote]Research has paved the way for a future where medical intervention could ‘silence’ the effects of the extra chromosome that causes Down Syndrome[/quote]
Several new forms of ground-breaking research in recent years have presented realistic hope for parents in the form of a drug known as RG166 which has been clinically tested and shows conclusive benefits for cognitive development and memory in people with Down Syndrome. Another research at Massachusetts Medical School has paved the way for a future where clinical or medical intervention could ‘silence’ the effects of the extra chromosome that causes Down Syndrome, not to mention the new ‘Crispr’ technique of gene therapy which could potentially allow scientists to modify human DNA which in layman’s terms means they could re-code the faulty genetics in a foetus to remove the occurrence of genetic disorders such as Down syndrome.
Nonetheless whilst medical interventions and clinical trials might be an abstract idea for families and children facing the challenges each day brings in Pakistan, maybe it is time for us to figure out how we can help by being more sensitive and inclusive of children with special needs in play dates, in schools and extra-curricular programs, creating a more cohesive and nurturing society. After all, the only thing children like Madiha and Shama’s son really want is a little bit of love and time, to be spoken to with a smile, to be appreciated and believed in and when you look at these ‘angel’ children (a term coined by the writer’s 5 year old daughter), it really isn’t so hard.
(Names have been changed to protect identity)
