By Maliha | Assistant Manager - Resource Mobilisation Dpt.
Dear Supporters,
The last quarter at the Karachi Down Syndrome Program been incredibly eventful. With both KDSP Learning Centre (KLC) and KDSP Development Centre (KDC) now up and running, KDSP has been able to expand the scale of our services and cater to more individuals with Down syndrome and their families. Having more families on-board the KDSP KASHTI has been amazing, and the awareness surrounding Down syndrome only continues to grow. We celebrated many milestones and events with our beloved students and it has been a pleasure seeing them all grow. These are just a few highlights, we can’t wait to tell you about more happenings from this quarter!
Mentioned below are the detailed overviews from each service that KDSP offers:
Family Support:
- Family network expanded to 1768 families
- 73 new families have been registered within the family network through Family First Contact Meetings
- 31 new parents received peer support via ‘Humrahi’ (Parent Peer Counsellors) program.
-KDSP continued to offer monthly informational Family Support Group sessions to parents and caregivers of individuals with Down syndrome on diverse topics which benefitted and reached 77 participants
KDSP organized a New Year’s Hi-Tea for 20 families from our family network in January 2023. The Hi-Tea aimed to offer an opportunity for families to come together, get to know each other and bond via various icebreakers, activities and reflection of the past year. Many resonated with one another through their New Year’s Resolutions, and found strength from shared experiences all while enjoying delicious snacks and tea!
Awareness:
As a part of its objective of raising awareness, KDSP every year organizes its annual carnival in celebration of World Down Syndrome Day (WDSD) where families came in huge numbers to enjoy a number of games and activities, scrumptious food, stage performances and a lot more. The larger purpose of the carnival is to collectively demonstrate an inclusive society where people of all abilities are celebrated, accepted and appreciated, as was highlighted through the theme #PyaarBaanto. KDSP Carnival 2023 was held on 5th February 2023 at the DHA Sports Club, Moin Khan Academy. The event had a footfall of more than 6500 people which included more than 1450 people from the KDSP family network.
Our Board Members and well-wishers were able to physically attend the 12th World Down Syndrome Day Conference at the United Nations Headquarters in New York City. At the 12th WDSD Conference, self-advocates, supporters, government/UN officials and NGO representatives shared knowledge, experience, and good practice from countries around the world.
Our CEO, Samar joined Express News (live) to raise awareness about Down syndrome. Samar not only talked about Down syndrome but shared KDSP’s journey with the audiences. Representing KDSP on such platforms allows us to reach the masses for awareness.
Zhalay, a renowned Pakistani actress, paid a visit to the KDSP Learning Center to advocate for an inclusive society and become a part of our journey. Empathy, generosity, and support from KDSP supporters like Zhalay helps us keep our KASHTI afloat.
A number of sessions were conducted with schools and organizations such as the Ziauddin School, Essa Lab, and The Smart School during this quarter, which reached more than 100 people. The sessions aimed at raising awareness about Down syndrome, and sensitizing the audiences to the cause.
An awareness session for the employees at Utilities Tech was also organized at the KDSP Learning Centre where they had the chance to interact with our ‘Education for Life’ students in an engaging art class.
KDSP was also invited for a guest Speaker Session for a course on Social Marketing at IBA, Karachi. The team leads for KDSP’s Awareness and Resource Mobilization departments, Shayan and Zaynab, conducted the session and briefed students about KDSP’s work.
Skills Development:
- 9 new children and adults with Down syndrome enrolled the development classes.
KDSP’s very own Crafters’ brand ‘Lehr by KDSP’ participated in various events during this quarter. The brand was showcased at the Annual Golf Tournament, 2023 organized by KDSP as the drive for inclusive education. Additionally, Lehr by KDSP was set up at the KDSP Carnival 2023, as well as Al-Furqan Welfare Organisation’s Annual Day, and received great response on the crafters' products.
In addition, KDSP hosted its first ever art exhibition, Rangon ki Lehr on 18th March. Exquisite works of our talented crafters with Down syndrome were displayed at the exhibition, and proceeds from sales went back to the artists. Our honorable chief guest for the event was Chief Secretary, Government of Sindh, Dr. Sohail. A collaborative painting made by our ‘Education for Life’ students was also up for an auction. After a positive response from our guests, an open house was also held for the exhibition. 19 students participated in creating 45 different pieces including 11 clay murals, 20 paintings and 14 photographs. The exhibition extended to 21st March because of the great response!
10 students participated in a 5-day Candle Making course with ZMVG Rangoonwala Community Centre on Tuesdays and Thursdays. The students were given a demonstration of candle making, and were able to recognise the colour and fragrance during the process, before making their own candle.
KDSP Skills Development started its second batch of Education for Life Program. For the new batch, 10 students were enrolled who will be attending different vocational trainings, life skills and fitness programs from Tuesday to Saturday every week from 12 to 4 pm.
KDSP Education for Life students established their one day pop-up canteen in KDSP Learning Center's Cafeteria for the KDSP employees. The purpose was to help students understand and implement life skills (cooking, money management and socialization) in real life situations.
In addition, Education for Life batch I students opened up a pop-up canteen for EPEP Spring Fest. Many parents and EPEP facilitators became part of it.
Education for Life batch I and II went on a couple fun-filled field trips during this quarter. The students took a trip to Pasha Farm, to learn about plants, and put the techniques learnt in their photography class to use! In addition, they engaged in many fun activities; a favourite activity amongst the students involved taking pictures with their favourite farm animals!
A total of 18 Education for Life batch I and II students also visited Younus Textiles. The students got to see their weaving and sewing and stitching practices at the Mills, after which they did a painting activity with their employees. It was a fun-filled day and everybody thoroughly enjoyed it.
Special Olympics Pakistan (SOP) and their athletes visited KDSP Learning Center and conducted Zumba and Bocce with 22 students at KDSP for World Down Syndrome Day.
Early Childhood Intervention (ECI)
- 40 new children were enrolled in occupational, speech and physical therapies.
- 218 Occupational Therapy sessions were conducted weekly.
- 244 Physical Therapy sessions were conducted weekly.
- 273 Speech Therapy sessions were conducted weekly.
KDSP and its stakeholders have seen a major positive shift in its growth in the recent times in terms of its clientele and its service providers, therefore ECI hosted multiple policy refresher sessions for the therapists and parents. These sessions were to ensure better communication between all invested parties.
Considering over 70% of our clients are assisted by their mothers, to provide them with the utmost comfort the ECI policy in cooperated the right to reserve a slot for an ECI client for three months, if their mother is in her last trimester as a form of maternity leave.
Lastly multiple policies were added for the sole purpose of increasing parent involvement which would consequently impact the progress of the child.
The ECI department aimed to shift form a social media platform like Whatsapp to one that could be utilized for smoother communication. To justify this intention, all ECI representatives started employing this app called Slack in February and since then this decision has proven as highly efficient in promoting transparency of processes and smooth communication.
On 30th March 2023, KDSP had the privilege to uphold the agreement between Ziauddin College of Speech Language and Hearing Sciences (ZU-CSLHS) and KDSP by renewing their MOU for the second year. The MOU aims to continue capacity building of students enrolled in the undergraduate program at (ZU-CSLHS) and simultaneously intends to improve the quality of service-delivery offered at KDSP for children with Down syndrome.
Education:
The training was held in collaboration with the Institute of Business Administration (IBA). The 3-day training program included 6 interactive sessions, for 15 individuals, from understanding the learning profile of individuals with intellectual disabilities such as Down syndrome, Autism and ADHD, to learning how to incorporate academic modifications, developing individualized education plans, and managing behavior in a mainstream classroom setting.
Students from the Early Preschool Experience Program (EPEP) and their parents had a day full of colors and joy at the Spring Fest. There were a number of activities planned not just for the students but also their parents. On 21st March, the Early Preschool team wore mismatched socks as a way to raise awareness about Down syndrome.
The Early Preschool Experience Program Team celebrated red day with their students. All the children wore red, did strawberry sponging with a Q-tip bunch, and enjoyed red jelly. Red day encourages kids to recognize the color red through different activities and marks the beginning of a new color introduction for the next 6 weeks!
The session was conducted by KDSP’s Behavior Therapist, Zakia. The agenda was addressing parents’ concerns regarding challenging behavior at home or at school, and offering practical and achievable solutions for them.
The students and their parents celebrated World Down Syndrome Day with a beautiful spring festival filled with flowers, activity stations, and pictures. The students also got to help make flower necklaces for their mothers!
Students in TAP have learnt about the importance of cleanliness and hygiene, through engaging in various learning exercises. These exercises have taught them essential skills such as teeth brushing, and hand washing, and cleaning their environment in a safe and effective way. Instilling these values in them will help them become responsible and conscious members of our community, and helps strengthen their motor skills.
Healthcare:
- KDSP’s in-house Developmental and General Pediatric Clinic has benefited over 92 individuals with Down syndrome.
- We have sponsored 1 surgery, 33 diagnostic tests and 17 sets of medical equipment and medicines.
This year KDSP had the privilege to collaborate with another one of Pakistan’s biggest healthcare providers, Ziauddin Hospital. This partnership aims to cater to the healthcare needs of children with Down syndrome in the utmost efficient manner, one that proves to be highly sustainable and beneficial to both the organizations and our clients.
Our registered behaviour technician (RBT) Zakia has observed jewelry-making, cooking and photography classes for 35 individuals with Down syndrome taking services at KDSP enrolled with the Skills and Development department, and engaged in one-to-one sessions with them as well. Such sessions not only benefitted the children greatly but were accompanied with a parental guidance portion where parents were given the necessary tools and tips on how to cater to the needs of their child better from an emotional and behavioral perspective.
This quarter, KDSPs Healthcare department was happy to sponsor 3 lifesaving and enhancing interventions. Following are the cases we supported.
- Hiba, a 1 year old girl registered with all 3 ECI therapies, who was diagnosed with severe hearing loss by Dr. Najam at AKUH and needed a set of hearing aids as she could only hear loud sounds and was unable to hear any below 70 Hertz. KDSP funded her equipment and now Hiba is able to have a better quality of life.
- Maaz, a bright 11 year old boy whose day to day communication was hindered due to multiple dental complications. KDSP funded Maaz’s entire treatment plan which consisted of 9 extractions, 7 Ionomer fillings, 3 composite and 1 fluoride application. Following this intervention, Maaz is in better health and lives through his day to day tasks comfortably.
- Mannat, a 4 year old girl who was rushed to AKUH after facing chest congestion, and a low heartrate of 83. After her admission, the doctors diagnosed her with Pneumonia and emphasized the need for a ventilator. Mannat stayed in AKUH’s intensive care for three days, during which KDSP tried to lend as much emotional and financial support to the family as possible. Mannat has now recovered and is a regular and bright client enrolled in all three ECI therapies.
Statistics show that children with Down syndrome can be predisposed to certain medical conditions and are susceptible to longer-lasting infections due to low immunity which can result in severe respiratory infections like pneumonia. To avoid such high-risk situations and emergency admissions, and to promote early detection of such plausible health complications, KDSP has initiated a plan to execute ‘healthcare sponsorship packages.’ This would target KDSP families who are on financial assistance and could benefit from a consistent sponsor, sponsoring their child’s routinely tests.
Testimonials
“For the first three years of Noor’s life, we did not know about KDSP or any facility that could cater to our child without causing a financial burden on us. Through word of mouth, we heard of KDSP and took our child to the facility. Over three years ago we entered those doors and since then KDSP and its people have taken such great care of us. Whether be providing us with financial assistance and travel allowance or through accessible healthcare services or by providing Noor with therapies that we could only dream of. In these 3 years not only has she learned limitlessly and achieved her milestones but we as parents have grown and learnt a lot too, skills which will help us assist our daughter and her future better. I recommend KDSP as the best platform to any family who has a child with Down syndrome as it has impacted our lives deeply.”
Muhammad’s parents claimed they were intensely overwhelmed with ‘what the future held’ when Muhammad was diagnosed Down syndrome, alongside multiple health comorbidities. However, they came to know of KDSP soon after and were relieved to know of a facility that was available to provide much-needed support to their son.
After enrolling Muhammad in the ECI program, his parents have seen a remarkable change in his development. “We are grateful to the therapists and staff for their dedication and hard work in helping our son achieve his milestones.” Muhammad’s smile and laughter at KDSP brings a sense of hope to his parents, knowing that he is in a safe and caring environment where he can thrive.
Ayesha’s family despite the shock of having their daughter diagnosed with Down syndrome, always had an optimistic attitude. However, despite having such a hopeful stance, due to a lack of organizations that would cater to the needs of children with Down syndrome, Ayesha’s family was disheartened when they weren’t met with the right tools on how to move forward.
That is, until they were introduced to KDSP. In Ayesha’s mother’s words; “KDSP is an extremely supportive organization, it helped us tremendously in understanding what all we could do as parents to support our children which I didn’t know of, it helped us understand their needs, what they require and how we should act with them. The organization is so holistic and that’s what makes it a second home for us-KDSP never fails to lend its support whenever we have needed it, may that be in areas of therapies, healthcare and/or education- I think to myself all the time, that there is someone looking out for these kids, investing their love and purpose into making them valuable members of our society and hence I pray and wish them ultimate success.”
You can tell this was a rather eventful quarter for us at KDSP and this has only been possible through your support! The effects of your support speaks for itself, as we watch the individuals with Down syndrome grow, learn, create their futures and reach their goals and dreams. There is nothing better than seeing their heartwarming smiles. We thank you for continuing to make this possible. Here’s to a great quarter, and many more to come!
Love,
Team KDSP
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