(May – June 2016 ParentEdge)
Parenting in itself is no cake walk, when parenting a child with special needs, parenting becomes even more challenging. In addition to the extra financial burden on the family, for medications, therapy, counselling, physiotherapy, families with differently abled children may find themselves isolated from social circles and peer networks. However, the support systems and remedial measures are increasingly getting better. This article throws light on what it means to raise a child with physical disabilities in this day and age.
Physical disabilities in children
The five most common physical disabilities in children are visual impairment (blindness), hearing impairment (deafness), speech impairment, muscular dystrophies and cerebral palsy. If a person has a muscular dystrophy, the muscular fibers in his body gradually weaken over time. In children, the most common type of this dystrophy is Duchenne muscular dystrophy (manifests only in boys), in which the muscular fibers weaken much faster than in any other type of muscular dystrophy. Cerebral palsy is usually caused by damage done to the cerebrum of the brain during pregnancy, birth or early childhood. People with cerebral palsy have trouble standing or walking. They may also be partially paralysed.
While some diseases or accidents could cause blindness, deafness or speech impairment in childhood, in most instances, the child is born with the disability. Physical disabilities are caused due to a number of reasons. Some of these reasons include inherited or genetic disorders (muscular dystrophy), conditions present at birth (spina bifida), serious illness affecting the brain, nerves or muscles (meningitis), spinal cord injuries (mobility impairment) and a brain injury (cerebral palsy). According to Dr. Deepak Sharan, Consultant in Orthopaedics, Rehabilitation & Ergonomics and Medical Director, RECOUP Neuromusculoskeletal Rehabilitation Centre, Bangalore, “1.67% (approximately 12 million) of all Indian children have a disability. The five most common causes of locomotor disability in India are cerebral palsy, poliomyelitis, other neuromotor disorders, trauma and birth defects. The exact percentage in each category is not known.”
Physical and occupational therapy are two services that are provided to physically disabled students in schools. Physical therapy focuses on improving gross motor skills (crawling, running). A disabled child can improve strength, movement and endurance through exercises that are performed with a therapist’s help. School physical therapy treatment assists a student in traveling throughout the school environment; participating in classroom activities; maintaining and altering positions in the classroom as well as managing stairs, using restrooms and the cafeteria. The therapy is also recommended for improving wheelchair mobility. The student meets with the therapist depending on his individual needs.
Occupational therapy helps a student in daily activities, such as educational activity, play, leisure, self-help and social skills. When the student needs assistance with self-help skills such as washing hands and tying shoe laces, an occupational therapist is consulted. The therapist also helps improve fine motor skills (cutting and writing). In some schools, accommodations are made for a physically disabled student; one example is providing access to elevators in multi-level schools. Accommodations are also made to provide such students with the necessary physical space to move around in a classroom. Students who struggle with communication as a result of a disorder benefit from speech/language therapy, communication boards, voice synthesisers and other assistive technology.
Parents would need to work closely with the school that the child goes to, to ensure that remedial measures reach him. It would also be important to synchronise the efforts of parents, therapists and teachers at school.
Children with severe disabilities who have difficulty managing in regular schools are referred to special schools. Most of these schools are run by voluntary organisations and a majority of them are residential. As of now, 3000 special schools function across India. Out of them, approximately 900 institutions are specialised for the hearing impaired, 400 for the visually impaired, and around 700 cater to children with physical disabilities.
Rekha lost her hearing due to meningitis when she was a little less than three years old. She used hearing aids for six months but did not benefit from them. As they researched the option of a cochlear implant, Rekha’s parents got a mixed response. After much deliberation, they decided to get their daughter implanted, followed by auditoryverbal therapy. Rekha’s parents had noticed that she had begun to retreat into a shell due to her inability to be understood or converse with friends. Post implant, her confidence increased and so did her eagerness to be with her friends. She topped her school by scoring 94.6% in her Grade Twelve board exams.
An 11-year-old boy was diagnosed with cerebral palsy of Gross Motor Function Classification System (GMFCS) level 5, which is the highest level of functional disability. He was always carried around by his father. He had not attained sitting balance and had severe generalised spasticity and contractures. He underwent Single Event Multilevel Lever Arm Restoration and Anti Spasticity Surgery (SEMLARASS). After this procedure, he could walk with the help of elbow crutches and subsequently took a few steps independently. He progressed to doing all daily activities independently, and started attending a regular school.
Dealing with disability
Parents of children with disabilities face great sadness, fear and worry. For some parents who have a ‘normal’ child along with a physically disabled child, the ‘normal’ children often fear that they are loved less by their parents because more time and effort is being consumed by the child with special needs. Dealing with such situations causes emotional stress for parents, and dealing with it can be difficult. Studies have also proved that parents of children with disabilities have higher stress levels and long term health problems than parents of children without any disabilities. Dealing and coping with the situations unique to having a differently abled child at home, leaves parents with a mixture of emotions that they cannot share easily with others.
Financial matters are pressing too. Medications, therapy, counselling, rehabilitation and physiotherapy, occupational therapy and schooling all add up to significant costs that have to be borne year after year. Another problem that parents of physically disabled children face is isolation. Families can find themselves isolated from their friends and other extended family members. Many people do not know how to cope with a disabled child’s unique problems, and in turn, they do not know how to act around the child or the child’s parents. Depending on the severity of the disability, some families have to spend all their time to come up with strategies to help both the child and themselves, along with friends and other family members. Many families stop socialising once they realise their child is disabled, because of fears about how the child will be accepted.
Another problem that parents of a physically disabled child face is social acceptance. Even today, in our society, many children and adults who suffer from disabilities are socially unaccepted. Unsolicited advice, comments and judgement all come in the way of families dealing with the difficult situation of raising a child with a disability. The best support that parents with ‘normal’ children can provide families dealing with disability is to make genuine attempts to understand the situation and ensure unconditional acceptance and inclusion in social situations. Today, advancements in science and technology have widened the possibilities and there are enough avenues and opportunities for a child with a disability to integrate into the mainstream. It is up to the adults to lend a helping hand to the parents raising such a child.
• http://www.concernindiafoundation. org/2015/02/
• http://www.indiahomehealthcare. com/children-disability/
• http://www.thebetterindia. com/topics/disability/