October is marked as the month of awareness for Down Syndrome internationally. And while there are many individuals with Down Syndrome living in Pakistan today, people are still unaware and misinformed about the syndrome and in the worst cases, people with DS are often not accepted as part of mainstream society in Pakistan.
We, at ChalkTalk, decided to find out more about Down Syndrome in Pakistan and who better to talk to, than Farzeen Ali? Farzeen is the Deputy CEO of the Karachi Down Syndrome Program (KDSP) and mother to two adorable daughters – Alaiyah aged seven and Amaya who is four-years-old.
As one of the founding members of KDSP, we asked her about Down Syndrome in Pakistan, the work of her organisation in helping to build awareness and acceptance as well as her personal challenges in raising a child with DS. And here’s what she had to say:
Q. Can you briefly explain what Down Syndrome is – what causes it, how and when can it be diagnosed and what impact can it have on a person’s life?
A. Down Syndrome is a genetic condition primarily caused by an error in cell division at the time of conception. This error results in an additional copy of Chromosome 21 in every cell of the body, that is, 47 chromosomes instead of the usual 46.
This extra genetic material causes changes in the development of the body and brain, resulting in the characteristics associated with Down Syndrome including low muscle tone, short stature, flat nasal bridge and mild to moderate intellectual disability. Although all people with Down Syndrome experience cognitive delays, these delays do not in any way reflect the potential, capabilities and talents which they may possess. Given quality healthcare, educational environment and a supportive social structure, individuals with Down Syndrome can lead fulfilling, productive lives.
The only known co-relating factor associated with the incidence of Down Syndrome is the age of the mother at the time of conception. The older the mother at the time of conception, the greater the chances of having a baby born with Down Syndrome, for example, a mother has a 1/1200 chance of having a baby with DS at the age of 25 years but at 45 years of age, the probability increases to 1/30.
A diagnosis of Down Syndrome can be made as early as 10 weeks into the pregnancy through a non-invasive blood test with an accuracy of 99%. However, this test is not available in Pakistan yet. Other diagnostic tests are Chorionic Villus Sampling (CVS) and Amniocentesis, both of which have a slight risk for miscarriage.
Q. How and when did the Karachi Down Syndrome Program (KDSP) come about?
A. KDSP was set up in early 2014 by a group of affected (and very motivated) parents and family members with the intention to change the experience that new parents of children with Down Syndrome inevitably face after receiving their child’s diagnosis. Our own experience at the time our daughter, Alaiyah was born, had been pretty harrowing and we really did not want others to go through what we had.
We organised and executed our first awareness campaign on World Down Syndrome Day in 2014. And we did it ALL from our own dining table! The objective was to make families come and talk about their children, the challenges they faced, along with the unexpected joy that comes with having a child with Down Syndrome. We wanted to normalise differences and break the social stigma that comes with having a disability. We wanted to let society know that our kids and family members with Down Syndrome are more alike than they are different.
Soon after this, we held our first Family Support Group Meeting. Our aim was to bring families together to uplift each other. By 2015, we had set up our physical space dedicated to the vision of creating an inclusive society where people with Down Syndrome are accepted, included and valued.
Q. What exactly is the objective behind KDSP?
A. The primary objective of KDSP is to advocate for the acceptance and inclusion of people with Down Syndrome. It strives to provide a space accessible to anyone and everyone who is affected by Down Syndrome – the individuals with DS themselves, their parents, extended family, educationists and more – and where they can find the support they require.
Q. What are some of the programmes/services offered at KDSP?
A. KDSP’s programmes fall under 6 main categories:
1. Raising awareness
We conduct activities to raise awareness including hosting awareness sessions in educational institutions, organising an all-inclusive annual carnival, publishing bi-annual newsletters, developing awareness videos, launching outdoor media campaigns and publishing a children’s book on inclusion.
2. Early childhood intervention
Early childhood intervention refers to a comprehensive programme of physical, speech and occupational therapies designed for a child’s specific needs. By January 2018, over 200 children benefited from weekly Early Childhood Intervention clinics held at KDSP. We have recently expanded our capacity for therapy services, so this number is expected to increase to over 300 children by the end of the year.
3. Family Support Group
Family Support Group sessions are held monthly to bring together families of individuals with Down Syndrome and educate them on various aspects of the condition. By January 2018, KDSP had arranged 30 family support group sessions, impacting more than 600 parents and caregivers.
4. Enrichment Programmes
KDSP holds a range of programmes to cater to individuals of varying age groups with Down Syndrome and their families. Adults can enrol in Arts and Crafts and yoga classes, whereas story-time sessions, Young Athletes programme by Special Olympics Pakistan, Gymboree-on-the-go, clay and art therapy sessions and summer camps are offered for children with Down Syndrome.
5. Education and Training
KDSP’s Education and Training programmes are intended to successfully integrate children with Down Syndrome into the mainstream educational system. Currently, KDSP has partnered with 15 schools in Karachi under its Project for Inclusive Education (PIE) and 15 children benefiting from its Early Pre-School Experience programme (EPEP) – a pre-school set up by KDSP in 2017 for children with Down Syndrome.
KDSP collaborated with Agha Khan University Hospital (AKUH) in April 2017 to introduce a first-of-its-kind (in the South Asian region), one-stop health solution to facilitate children with Down Syndrome and their families. With the launch of the Down Syndrome Clinic at AKUH, parents can bring their children to see different health specialists in one clinic.
Q. Does KDSP provide therapy for children with Down Syndrome or does it recommend/connect people to experts/therapists in the field?
A. Yes, KDSP does provide therapy services in all three areas of early childhood intervention, that is, speech, physical and occupational therapy.
Q. Are there any specific ailments associated with Down Syndrome? Do we have any specialists in Pakistan who cater to such ailments?
A. There are certain health conditions that people with Down Syndrome are at an increased risk of having. It is not necessary for every individual with DS to have all of them and most may be affected by some of them at varying degrees. These include low immunity, heart defects, low muscle tone, speech intelligibility, thyroid imbalances, hearing issues, vision issues, sleep problems, childhood leukaemia and Alzheimer’s disease.
To monitor progress during childhood and to ensure optimal development, a child with Down Syndrome is required to be under the supervision of a Developmental Paediatrician. Unfortunately, there is only one such qualified doctor in Pakistan and she practices in Lahore. In collaboration with AKUH, KDSP is co-funding the fellowship of a developmental paediatrician at McMasters University in Canada, to provide families of children with DS with expert guidance and care, once she returns to Karachi after completing her studies in 2020.
Currently, the Down Syndrome clinic set up at AKUH provides the quality specialist care that a child with Down Syndrome may need and consists of a panel of doctors including a paediatric endocrinologist, paediatric cardiologist, physical therapist, ENT specialist, nutritionist and ophthalmologist.
Q. What are your future plans for KDSP?
A. The ultimate dream is to be able to create a society where organisations like KDSP are NOT needed; where everyone is accepted and included irrespective of differences. Until then, KDSP’s plans involve setting up custom-built premises where we can continue carrying out our programmes and which are recognised as a centre for excellence in the region for services and support related to Down Syndrome.
Q. What is the current scenario regarding mainstream schooling for children with Down syndrome in Karachi? Has KDSP reached out to any mainstream schools in Karachi to have its students enter mainstream education? If yes, please mention the schools and discuss how the progress has been so far.
A. All research regarding education of children with DS indicates that they thrive best in a mainstream environment as opposed to a special school, provided that the child has had early intervention therapies.
Initially, when KDSP approached schools to advocate for inclusion, there were two clear categories of schools we noticed. The first category were schools which were willing to implement inclusive practices but were hesitant to do so since they did not have any experience or training in the field while the second category consisted of schools which unfortunately refused to consider enrolling any child with a learning disability since inclusion was not on their agenda. Pursuing a reputation of academic excellence for their school name trumped the willingness to fulfil every child’s birth right of having access to quality education.
Consequently, KDSP set up its department for Education and Training in 2016. It established the Project for Inclusive Education whereby KDSP would partner with those mainstream schools which were willing to set up an inclusive environment, train their teachers, help identify and enrol children with Down Syndrome in the schools, and develop their Individual Education Plans (IEP).
To date, we have 15 partner schools across Karachi with a total of 23 children with DS enrolled in them. KDSP holds arena evaluations for all the children who fall under the eligible criteria for age and development and matches them to a partner school. Parents and teachers are trained simultaneously on how to develop IEPs and monitor the child’s progress. IEPs are reviewed on a 12-weekly basis and KDSP assists both schools and parents if intervention is required. Refresher trainings in collaboration with the Down Syndrome Education International (DSEI) and other relevant organisations are provided to the teachers of our partner schools at least once each term.
Feedback from schools on including children with Down Syndrome within their classrooms has been very promising so far and students have been making great progress. Time and again, teachers and school administrators have told us that inclusion is hardly as daunting or resource-heavy as they had assumed it would be, not to mention being so rewarding. It teaches everyone involved, especially the typical peers of students of DS, the very important values of tolerance and kindness.
KDSP proudly partners with mainstream schools in Karachi including The Elixir School, The Learning Tree, The AMI School, Veritas Learning Circle, Cornerstones School, The Educators, Meezan Academy, Little Heaven School, Berklee’s Montessori, Pathways British School, Headway Grammar School, Murtaza Montessori, The Anchorage School, The MCH School and Ali Model English School.
Q. Tell us about your journey as a parent to two beautiful children. What are some of the challenges, victories and lessons you have experienced personally?
A. Becoming a parent is a life-changing experience for anyone. I cannot articulate how grateful I am for being blessed with my two precious girls. My younger one amazes me with her witty comments, her mischief and her precociousness. She is my firecracker, someone who will flatten anyone who comes in her way! But she loves just as fiercely. She has taught me so much about myself, especially the deep reserves of patience that I surprisingly possess!
Alaiyah on the other hand, is my gentle, peace-maker who keeps reminding me of how much there is to value in having a simplistic approach towards life. Gratitude is Alaiyah’s strong suit; the smallest things make her so very happy and a lot of us can benefit from counting our blessings and focusing on what is right in our lives as opposed to what we have lost, or what could have been. Life IS hard, but that’s what life is all about, right? It’s not going to be peachy all the time, you will have lemons handed to you more often than not but you must take it all, toss it into your own kind of fruit salad, and be thankful for all you have!
Nevertheless, it’s easier said than done. It’s not a walk in the park for anyone and there are days when it seems almost impossible. Being a parent these days requires phenomenal strength, patience and energy. It can totally bring out the worst in you! Throw in a few challenges that come with having a child with extra needs and you have the perfect storm. But I consider myself to be extra lucky because I always have Alaiyah to lead by example and remind me every day of the resilience of the human spirit as well as the paradox of life – that the good and the difficult always come hand in hand.
Q. What would you say to a parent who has recently been told that their child has or may have Down Syndrome?
A. Everyone’s situation is different, but for us at the time Alaiyah was born, there wasn’t anyone else in our close or extended family who had an intellectual disability. We had very little awareness of what Down Syndrome entailed, so it was a time of complete uncertainty, panic and imagining worst-case scenarios. In that great, big muddle of emotions, the one thing that stood out for me most was the feeling of abject loneliness – the feeling that NO ONE could relate to what I was going through, even though they meant well.
So, my advice to new parents would be three-fold:
- The SINGLE most important thing which parents who are grappling with a new diagnosis can do, is to reach out to other parents in the same boat. The support and comfort received from others who can truly understand and relate to your situation, is immeasurable. That support is so important when you have to let go of society’s (and your own) expectations of what is right and acceptable and embrace the unknown.
- Second, educate yourself as much as you can on what Down Syndrome is, what it means for your baby and for yourself, what the latest research says about how your child can thrive and progress. The more you know, the more confident you’ll be about what your child can achieve. YOU will be your child’s greatest advocate and you will need ALL the information to challenge the negative stereotypes that come with having a diagnosis of an intellectual disability.
- Lastly, take it ONE day at a time. Looking too far ahead into the future can be too overwhelming. It will often leave you hopeless and disheartened. Taking small steps will help you see that what your baby needs most right now is exactly what any other baby would need – love and acceptance. As long as you have covered point 2, the future will take care of itself!
Q. Any message to people out there regarding Down Syndrome and people who have it?
A. I strongly believe that a collective effort needs to be made to be far less judgmental as a society, regardless of a person having Down Syndrome or any other visible/invisible disability.
We all need to be more tolerant and accepting of differences whether they are based on gender, race, nationality, sect, religion, lifestyle or ability. Everyone has their own story and is fighting their own battles. We need to focus more on the qualities that make us each human, instead of pointing out differences. This goes for people with Down Syndrome too. Once you really get to know a person with DS, you understand that they are just like you and me; they respond to positive expressions of love and friendship and are hurt and upset by inconsiderate behaviour.
Q. Any specific advice for parents (mums and dads) of children with Down Syndrome?
A. The Down Syndrome community (and those of other disabilities) really need more advocates. There is no better advocate than a parent of a child who has a specific condition. My advice to parents of children with Down Syndrome would be to talk about their children to others just like parents of typical children do.
Love them privately and love them even more publicly. Talk about the challenges, the difficulties, the joy and sorrow, and all the love wrapped up in this package that you have been gifted. Always remember that intolerance comes from mis-information or inadequate information. The more that people will see and know about your child, the more they will realise that everyone’s struggles are similar. That is the only way to normalise differences and create a society where our children can be accepted and included by welcoming communities.
If you wish to find out more about Down Syndrome and the work of KDSP, please visit their website and social media pages at the following links: