For most parents, the day their first child is born is a special moment. It is the day that marks the start of a journey full of promises, dreams, and expectations. Parents hope that their newborn will be the perfect child, destined to achieve great and beautiful things in life, so that they may hold their head high and beam with pride.
The day my first child – a daughter, Alaiyah – was born was a defining moment for me too, but not for the reasons stated above. A few minutes after the delivery, I was told that she has Down Syndrome. All the dreams and expectations of the 'perfect' child disappeared into thin air.
It couldn’t be true. Why did this happen to us? How will I ever cope with a child who has an intellectual disability? A child who will always be dependent, whom people will make fun of, who will never be able to marry and have children of her own. Will I ever be strong enough to love her despite all the limitations that she will have?
Fast forward six years and I know now that many of my initial fears and doubts were unfounded. They were a result of taboos and stereotypes associated with intellectual disabilities.
Will Alaiyah grow up and be independent enough to go to college or university? Probably. Will she be able to work and make a living? Will she fall in love and get married one day? Possibly. Am I strong enough to love her despite all the challenges that come with having a child with extra needs? Absolutely. She makes that last bit a piece of cake.
Alaiyah, along with a few other people with Down Syndrome, was the inspiration behind the Karachi Down Syndrome Program (KDSP), a non-profit organisation set up by a group of parents and individuals who strive to create a world where everyone with Down syndrome is accepted, included, and welcomed as valued members of society.
There was absence of support that I felt deeply when my daughter was born. KDSP strives to fill that vacuum; it is a place where anyone affected by Down Syndrome – parents, siblings, friends, and individuals with Down Syndrome themselves – can come and be part of a community that advocates for inclusion in mainstream society and assists those affected through medical interventions, education, vocational training, etc.
KDSP runs awareness campaigns every year to mark the World Down Syndrome Day on March 21st. The goal is to normalise differences. There is such a dire need for more acceptance for people who have extra needs.
It is tough enough to deal with the practical challenges of having a family member who needs extra attention, but the stereotypes and biases in our own minds, the pressures of society, and the emotional exhaustion that comes with it are the most draining of all.
It is important to know what acceptance should entail. It, in no way, refers to feeling pity or sympathy towards people with Down Syndrome, since that is disempowering.
At KDSP, when new families come to us, we tell them how magical their child's extra chromosome is and how the child will change their lives for the better. There is a lot of truth to that, but at the same time, the process of arriving at that better life is a difficult challenge.
Families have to grapple with all sorts of negative emotions: hopelessness, envy, disappointment, embarrassment. We tell them that instead of being bitter, they should look at the matter from a different perspective – they should look at life through the eyes of their child.
Children with Down Syndrome have no inhibitions when it comes to showing love. They greet each new day with such joy and enthusiasm. They empathise. They have no hidden agendas. They are pure. And they are experts at teaching us how to seek out happiness from the small things in life, only if we look hard enough. I may be Alaiyah’s mama, but she has been my greatest teacher.
People often tell us that we have done a great thing by setting up KDSP, but the truth is that it has been the other way round. It is difficult to put into words how much KDSP has given back to us. Personally, it has had a huge role in providing me with the opportunity to heal and grow. It has given my life a purpose.
When parents of young kids come to KDSP and interact with older kids, I can see the parents sizing them up. I can sense them assessing whether or not they will be able to cope if their child grows up to be like the grown ups with Down Syndrome who are in front of them. I know this because I have been there myself. I know their fears and doubts. We are all human, after all.
I would ask myself whether I would feel resentful if my daughter tagged along with me every time I went out with my friends because she would have no friends of her own. I feel guilty for even thinking this way about my own child. I would ask if it would be too much for me to have her talk in front of others in slurry, slow speech and for others to slight her for it. I have assessed and I have fretted. And I have gotten over it.
She is who she is and what will be, will be. And she, along with her little sister, are my loves, my life, my pride and joy. And in the bigger picture, absolutely nothing else matters.
Are you living with a disability? Are you a family member, friend, or counsellor who is helping someone to cope with it? Tell us about it at firstname.lastname@example.org