Including children with special needs in mainstream education is crucial for building an inclusive society. You! takes a look…
Children, with their inherent innocence, naturally draw our attention. However, children with special needs, who demand even greater attention, often go unnoticed and unrecognised. Like all children, they exude qualities of warmth and love, yearning for compassion. Within this diverse group, there are those with conditions like Cerebral Palsy, a neurological disorder arising before birth or in children under five that results from brain damage during their formative years. These children grapple with challenges in body movement, muscle coordination, posture, balance, and motor skills, hindering simple tasks such as sitting, grasping objects, or walking.
Navigating exceptionality presents challenges not only for children but also for their parents which calls for a lot of empathy and support. Instead, they often face segregation. People view their condition as a curse upon parents or their punishment attributing it to a perceived wrongdoing. Oftentimes, the mother is held responsible for any supposed inattention during her expectant state. These experiences are profoundly distressing for them and add to their difficulties.
“People advised me to leave my son to the shrine. Some even said that when he gets a little older, he will put on a green robe and leave on his own and will never come back,” recounts Shafaq Sohail, mother of 13-year-old Alyaan with cerebral palsy.
By the age of 1.5 years, Alyaan was unable to lift up his own head prompting Shafaq to consult a doctor who diagnosed him with spastic cerebral palsy, which affected the left side of his body. Initial caregiving was extremely challenging for her as she grappled with feelings of loneliness in this demanding situation. “I felt disheartened and even complaint to God. It was emotionally challenging and I had an additional task of explaining Alyaan’s condition to my family, who were attributing blame to me,” says Shafaq.
Alyaan’s father is an appliance repair technician and takes on-call tasks during summers. However, he faces lack of work during winters. As the sole breadwinner for his family, this seasonal fluctuation contributed to financial constraints, impacting Alyaan’s treatment.
Despite all this, his mother continued to strive to ensure that her child could lead a normal and empowered life. “I took him for therapy for a month but due to its high cost, I couldn’t sustain it. However, having observed and learned, I began implementing it at home myself, and with the help of ankle-foot orthosis, provided free of cost by a local organisation in Karachi, Alyaan started walking by the age of 8 years. However, verbal communication is still a challenge and could only benefit from speech therapy,” elucidates Shafaq.
Ensuring education for Alyaan posed another challenge. Private schools are non-inclusive while special education offers limited affordable options. Whereas, government schools lack the necessary facilities and trained personnel to adequately cater to the needs of children with disabilities. “I persisted in trying to enroll my child in school, even expressed my willingness to rely on Zakat for the expenses. However, there were instances where despite completing all necessary paperwork I received no response,” expresses Shafaq. “When Alyaan secured admission to a government school, my first-hand experience, as I stayed with him, revealed that teachers were apprehensive about these children, and proper care was lacking. Consequently, I decided to withdraw him from school,” adds Shafaq.
In her pursuit to meet her child’s essential needs, Shafaq also sought job opportunities, submitting her resume to every school she visited for Alyaan. Amidst these efforts, she faced an incident that compounded her existing challenges. “I submitted my CV to a recently established school; they mentioned that they would respond later. One day, the owner contacted me, offering both a job and admission for Alyaan without any fee. However, when asked to meet at an apartment for further discussion, my intuition felt uneasy. I decided not to go sensing potential danger,” comments Shafaq. Since then, she has been teaching Alyaan on her own with the help of internet.
Shafaq did everything within her means but the persistent lack of funds posed a significant hurdle for her. In an effort to raise awareness and generate some income, she has created a YouTube channel ‘Umme Alyaan’.
Families are a crucial source of support for children with disabilities; unfortunately, there are instances where some children have been abandoned by their own families. In such situations, places like Dar-ul-Sukoon play a crucial role. While they may not be their biological families, for many children, these organisations become a refuge they can genuinely call home. For 8-year-old Fahad, Dar-ul-Sukoon transformed into a haven, providing the warmth and care he deserves.
Fahad was admitted to Dar-ul-Sukoon at the age of 2 after his father’s passing and his mother’s remarriage. Diagnosed with Ataxic Cerebral Palsy, Fahad’s physiotherapist, Dr David Francis, noted that while it is a more manageable form of cerebral palsy, Fahad still faced challenges with walking and speech. “We initiated manual therapy, progressing from body movement exercises to treadmill sessions. Subsequently, we worked towards assisting him in walking, eventually, we supported him in using a walker to encourage independent walking,” elaborates Dr Francis.
However, this journey towards improvement was a lengthy one, spanning 6 years, before witnessing significant progress where Fahad can now walk with the help of a walker.
Fahad’s occupational therapist Angelina Nadeem told this scribe that initially Fahad lacked a grip on his hands. The rehabilitation process was systematic, starting with a squeezing ball and progressing to assisting him with an empty glass brought close to his mouth, followed by helping him hold a spoon. Adding liquid to the glass, Fahad learned to drink independently, followed by introducing food to his plate. The ultimate goal was met as Fahad successfully learned to eat and drink on his own. He continues his stair practice alongside academic learning as part of his ongoing exercises. “I am hopeful that he will walk unaided, without the walker. We are dedicating our full efforts, and Fahad is equally committed to reaching our shared goals,” shares Angelina.
Meanwhile, special educator Sheroon Shiza is working on enhancing Fahad’s fine motor skills by incorporating painting and tracing activities, aiming to enhance his grip. “If a child is sitting in their CP chair, observing, listening or enjoying music, it still counts as development. The shift in environment is beneficial for these children,” explains Sheroon.
Bilal, a 10-year-old child with cerebral palsy faces challenges with proper joint movement. His arms, shoulders, and knees remain flexed, preventing him from sitting and walking independently. “I am working on enhancing his range of motions and building muscle strength. Simultaneously, we ensure he receives a proper diet with soft, liquid feed to prevent choking. Keeping him clean is crucial to protect against bedsores. Additionally, he sometimes has fits or seizures, so we stay vigilant and provide him with the necessary medication on time,” comments Dr Mesum Abbas, a physiotherapist at the centre.
Emphasising the crucial role of family support in healing and growth, Dr Francis says, “The willingness to improve is heightened with familial support that is why we recommend parents to bring their children home occasionally.”
Despite their considerable need for family support, these children often find themselves distanced from their families. Fahad’s grandmother too used to take him home sometimes. It would usually take him a week to readjust upon his return. Initially, he seemed distracted and uninterested in activities. However, she hasn’t visited him in the last two years.
Occupational therapist, Angelina Nadeem, shared a poignant moment when she discovered that Fahad used to carry his father’s photo in his pocket, “One day, he approached me, pointing to something in his pocket. Upon checking, I found a worn passport-sized photo of his father. He likely brought it from home, as his grandmother used to take him there occasionally. He was 5 years old at the time and always kept the photo with him.”
“Despite our utmost efforts to provide love, care, and support, creating a homely atmosphere, the absence of their families creates a void that children feel from time to time,” notices Sheroon Shiza. “It’s emotionally tough for some children when on special occasions like Eid and Christmas nobody comes to take them home,” she observes.
Children with special needs often face an increased risk of exclusion due to limited access to affordable therapy services. Even when government assistance is available, lack of awareness and perceived difficulty in obtaining support pose significant barriers. Meanwhile, the persistent stigma compounds the challenge of treating and managing their conditions, denying these children a fair opportunity for a healthy and happy life.
Moreover, state institutions frequently overlook the needs of these children. The on-ground situation, even with enacted laws at provincial and federal levels, remains unsatisfactory. Even with employment quota policies, the questions persist about how children with conditions like cerebral palsy can reach suitable employment levels without ensuring inclusivity in educational settings. “There are very few institutions of special or inclusive education in Pakistan, and those that are mostly in big cities, meeting the needs of some people, but even that is not possible to afford for most of the parents. Though there is an adequate policy for inclusive education at the higher education level, with practical implementation such as providing wheelchairs, laptops, and necessary accommodations, the challenge lies in the number of children who actually progress to the university level. Many face difficulties during the foundational stages of primary and secondary education,” tells Muhammad Atif Sheikh, Executive Director Special Talent Exchange Program (STEP).
The 2021 Annual Status of Education Report (ASER) survey in 152 rural districts found that 21 per cent of 4096 government schools and 24 per cent of 1602 private schools enrolled children with disabilities. In 22 urban districts, the 2022 ASER survey revealed that 16 per cent of 728 government schools and 6 per cent of 487 private schools included such students. Humanity and Inclusion’s Country Card Pakistan 2022 notes around 330 special education schools in Islamabad, mainly in urban areas of Punjab, Sindh, and Khyber Pakhtunkhwa, creating challenges for rural access. Even when available, 50 per cent of children with special needs encounter difficulties accessing these schools, and the quality of education is often subpar.
“The current state of education lacks adequate facilities for inclusive or special education at the school level. This is due to a deficiency in comprehension and prioritisation. Children face challenges in terms of infrastructure accessibility and they also lack essential technology and other necessary facilities to meet the special needs of children,” informs Atif.
“Including children with special needs in mainstream education is crucial for building an inclusive society. While complete segregation may not be ideal, it’s important to recognise its significance. Schools should welcome children with mild disabilities into inclusive education, and for others, specialised education should be provided. Practical implementation, not just policies, is necessary. We must adjust our attitudes, communication, and infrastructure to make this happen,” stresses Atif.
People themselves are not disabled; it’s the environment that poses limitations. The disabling factor often lies in societal behaviours and the overarching infrastructure. By labelling individuals with special needs based on what they lack, we inadvertently absolve ourselves of the responsibility to create an inclusive and supportive environment. Even in this modern age, some associate medical conditions with curses or divine punishments, a perspective that lacks humanity. The awkward glances, pitying looks, and unhelpful questions from some individuals only add to the challenges. The real issue lies not in being unsure or unaware; it lies in our collective lack of willingness to educate ourselves and foster awareness. The solution, at both individual and community levels, lies in fostering compassionate empathy, a force that not only allows us to understand and share the experiences of others but also empowers us to provide genuine help.
The writer is a Karachi based journalist, specialising in Humanitarian Affairs. She can be reached at hira31@gmail.com and @Hirasaeed06 on X.
