Stories
My husband knew Yashra had Down syndrome within two days of her birth, but I was told eight months later. I was always worried for Yashra, as she was sick a lot and did not begin crawling or walking timely like other kids. As soon as I learnt of her diagnosis I was distraught. I had no idea how to raise a child with Down syndrome and I did not receive any guidance at the time. A few months after the disclosure, I got to know about KDSP and immediately enrolled Yashra for Early Childhood Intervention (ECI) therapies. They made me realize how important therapies were for Yashra’s development and Yashra joined KDSP during the pandemic and at the time, her father was out of work. Our financial conditions were quite bleak and I was uncertain whether we would be able to continue her therapies. KDSP extended support through financial aid to ensure Yashra could attend all her sessions. I made sure to keep up with all the instructions and practice exercises her therapists gave, at home. Before receiving physical therapy, Yashra had difficulty in supporting her back and could not sit independently. However, within 3 months of physical therapy, she had started walking around our house. KDSP provided Yashra with supramalleolar orthosis (SMOs) to further assist in her mobility. Everyone in my family was ecstatic to witness her progress. In retrospect, I do not know what I would have done without KDSP. With regular therapies at KDSP, Yashra’s developmental progress has reached at par with other children her age. KDSP has made me hopeful about Yashra’s future and I am excited to think what more she will go on to achieve in life.
When Kaneez was born, my husband and I had a hard time comprehending her Down syndrome diagnosis. We didn’t have any prior knowledge about the genetic condition and so we took to researching it and discovered KDSP as the only organization within the city catering to individuals with Down syndrome. Kaneez was quite unwell in her early years, hence we waited till she was 11 months old to enroll her in KDSP’s Early Childhood Intervention (ECI) and Early Preschool Experience Program (EPEP). Whilst in EPEP, Kaneez learnt sign language through which she can now communicate her everyday needs to us; including hunger, thirst, toilet usage and even her feelings. Through the carefully structured lesson plans and video tutorials, Kaneez and I felt a sense of independence in being able to execute activities effectively. Furthermore, when EPEP opened up for physical classes in 2021, Kaneez got the opportunity to socialize and interact with her peers, which further allowed her personality to blossom. The teachers invested their soul and heart into ensuring a safe, smooth and comfortable learning environment for all the children, even when EPEP was virtual during COVID-19! The day she graduated from EPEP was a bittersweet moment for me as a parent. Kaneez is now ready to attend the mainstream school, where she will study alongside typically developing peers her age. I am confident that I will be able to provide a conducive learning environment for her at home as well, through the information, tools and techniques KDSP has empowered me with.
Initially Azeem was born with a critical heart condition which I thought he would not recover from but now he is well and healthy. When we found out about Azeem’s diagnosis of Down syndrome, no family or society member was supportive and I was put at blame for this. My society has been extremely toxic towards my son as everyone would teach him inappropriate things and behaviors. All my son did before he joined KDSP was go to a store in our society’s area where people would not treat him well. No one there supported him. However, since Azeem joined KDSP, he has learnt many wonderful qualities. He attends Skills development classes here, which have changed his behavior drastically. For instance, for one of his classes he was given a task of knitting from home; I did not expect my son to complete this task but he did, and the best thing about it was his eagerness to do so. Here at KDSP my son learnt the concept of friendship and alongside this I noticed a speech development in Azeem! Azeem and I both get support from KDSP. I attend Family Support Group sessions whenever possible and get financial support, due to which Azeem can attend various classes at KDSP. The other beautiful thing at KDSP is, parents can attend classes with their children. His father came for one of his pottery classes where he worked with Azeem throughout the session. I felt this built an understanding towards his father of the entire concept of giving these children just that extra help and love. The only thing I would want to say to new parents of a child with Down syndrome would be that raise your child together as it is not a one person job. KDSP has been extremely beneficial for us and I wish it continues to flourish and help more children like Azeem as no one should leave these children alone.
Since the past 4 years we have been connected with KDSP. My husband came across KDSP through a Ramzan Transmission and reached out right away. At the time Umer was just 7 years old. Our first contact with KDSP was very welcoming and comforting as we got hope, we were guided about how we can help Umer live a successful and good life. Since the very beginning I have believed having education is the best tool for living an independent life. However, I was not supported by society to give that life to my child and on top of this, Umer was unable to go to school due to his health condition of not being able to sit for long at one place. Due to these reasons he did not get the exposure of meeting other children of his age or get the school life. But when we joined KDSP, I was guided by therapists to make Umer go out to build communication and mobility skills. Gradually he became part of Remote Education and Learning for Youth (RELY) [homeschooling program] and we started his educational journey! Both him and I eagerly wait for new content to be shared with us to learn more, as I believe education is the key to success. Ever since my child has been associated with KDSP his development has improved drastically! My son can read both Urdu and English, he is also reciting the Quran currently and is able to hold a pencil with the right grip. My son is very responsive now and this is a big milestone for him as he did not interact with people before KDSP. But here I was encouraged and shown ways of how I can give my child the best life. People see him and feel sympathy, he’s made fun of but this is not the case anymore. He is taught ways to differentiate between who is loving him and who is not, he has a sense of everything now. My child is capable of doing anything he wishes with support from parents and getting educated. My husband too, helps out a lot with his education and guides me as to how I could teach Umer. The small things KDSP taught me are always going to be the big things for me. My advice to new parents would be that don’t think of the word “no”, these children have the ability to do everything as long as they are educated and have the right support. So please educate your child because he/she can do it. It is just a matter of hard work!
When Simran was born in 1998, we discovered there were no organizations in Karachi which catered to individuals with Down syndrome. As Simran grew older, she was enrolled in academic and vocational training programs at various institutions. It wasn’t until we came across KDSP that Simran and I felt content – we had found a place where we belonged. Simran was able to discover hidden talents through the Skills Development programs at KDSP. She has grown to become an independent and confident girl who likes making her own decisions. Amongst all the options available, she chose to participate in Yoga, Sewing and Stitching, Drawing, Vegetable Planting and Cooking sessions. Her sense of independence, passion to excel and self-discipline shine through her work. She finds joy in selecting colours and intricate patterns for her crafts and completing the tasks assigned. Her self-esteem soars each time her instructors acknowledge and appreciate the work she does. These sessions have also provided her with a social network that she lost after she had to discontinue schooling over a year ago. I see Simran succeeding each day and I can’t be prouder of her. The journey has been a tough one from Simran having little to no opportunities, to now being the Simran who has been placed for employment at a renowned institution by KDSP.