Care for CWSNs: Role of families and parents
By: M Ahmad
A child can be born with a single or multiple disabilities like Down’s syndrome, Autism, Attention Deficit/Hyperactivity Disorder (ADHD), Mental Retardation, Hearing/Speech or even Vision Impaired.
Each disability can be different and can be more severe than others. For such a child one has to take extra care to assist the child in every respect. Raising or caring for a child with special needs is not an easy task. However, along with the frustration and feelings of isolation comes the incredibly rewarding experience of watching your child grow, learn, and achieve new milestones—even if they are sometimes delayed.
Disability of children may induce negative consequences and lead to parental depression, feeling of having limited parenting role, lack of competence in parenting and poor emotional ties between children and the parents. Accordingly imbalance in parenting roles leads to serious mental, emotional and physical damage to a child with special needs.
A child with a mental or physical disability may not be able to think, work, play, and function like other children of the same age. Someone working in the special needs career will be able to assist these children to function in their everyday lives and to meet goals to encourage them to thrive.
In order for someone to work with special needs children, they need to understand the factors involved in a child’s improvement, have a heart for helping others, and be properly educated and trained to educate and train the child with special needs.
Family is the primary unit in the life of an individual and parents are the pillars of this unit. Parents and family need to fulfill certain responsibilities in order to function. The family is responsible for shaping a child and influencing their values, skills, socialization, and security during childhood development stages.
A family generates income, protect and maintain its members and home, nurture and love one another and see to it that children are taught social norms and educated. When a child is having any disability, these responsibilities become more crucial. It has been recognized that family has a value in developing and implementing programs for the disabled member. When in a family any member has a disability, families often have to adjust their family roles accordingly. Parents often become caregivers, and other family members take on greater responsibility. Working together as a family is the best way to plan for what will work best for everyone.
A family is made strong through a number of factors. The most important is love and care. We instantly think of unconditional love when we think of family. It is the first source of love a child with or without any disability receives in his/her life. It teaches the meaning of love which a child carry on forever in the heart. Family plays a great role in the lives of child and makes him/her better human beings. A family is a source of strength and teaches to create meaningful relationships and communication inside as well as outside the home. When family members spend time with a child with special needs, the child feels embraced and thinks no one is loved more than him/her. A child learns the values of love, respect, faith, hope, caring, cultures, ethics, traditions, and everything else that concerns, from the family and being raised in a loving household provides a solid foundation for the child.
Parents as the main component of society have an important role on the child’s life and ensure the present and future life of their children. Attitudes and behavior of parents can facilitate or hinder the development of children.
The usual challenges of parenting are compounded for parents and primary caregivers of children with special needs. The challenges include learning about the disability, researching and locating and accessing effective treatments and resources, emotional and physical demands of caring for an individual with a disability, getting to the innumerable appointments with medical providers, therapists, advocates and school personnel, advocating for appropriate school interventions, accommodations and placements, paying for the many treatments and interventions not covered by health insurance or the school system.
Parents of children with special needs are often exhausted and frequently become depressed. Their reserves of time and resources for self-care are even more depleted than those of parents of typical children. Yet their need for refueling is also greater. To be sustained through the marathon of caring for a child with special needs, it is essential that parents attend to their own needs.
Parents with children who have special needs are often subject to a range of emotions that are different from their counterparts who have children that do not need special care and attention. It is often the case that this type of parent feels a profound sense of helplessness, grief, or even a loss of hope due to how they perceive the future of their children.
Every child has a strength and it is more important for a parent to focus on what children can do, their abilities, rather than their disability. Parent should use children’s abilities to assist the areas that they have most challenges with. Children are stimulated by everything in their environment: by the sounds, by the interactions, by our smile.
So, if there is a child with a disability in a family, parent should make sure to spend more time with them. Everything that you do, as you are moving about the house, as you are doing your housework, involve and include your child in it. Move your child into the room in which you are working. Tell them what you are doing that will stimulate them.
Parent can also stimulate them by directly playing with them, by making little toys in the home, putting stones in a bottle and shaking it, by waving ribbons in front of their eyes, different coloured ribbons. This all will make them happy. Children with disabilities enjoy being played with just like any other child. They enjoy you reading to them, showing them pictures, tickling them, hugging them, and cuddling them. They respond to you with laughter and smiling. If they don’t like a particular play that you are doing, they will tell you. They will stop laughing, they’ll stop smiling. Try something else and you will find something because you know them best.
If a parent doesn’t have a lot of time to play with his child, there may be other family members in your home who will be able to play with your child with a disability. Brothers and sisters are really great around children with disabilities. They stimulate them because they talk to them a lot and they play with them. They don’t seem to be concerned about whether a sibling has a disability. They play with them just like anyone else. It’s just as important to provide children with disabilities with a loving environment. A child with a disability who is shown warmth and love will grow up to be an adult who may have a disability, but who is a wonderful person to be around.
While every child needs love, encouragement, and support, kids with developmental disabilities need these positive reinforcements even more. It can guarantee that they emerge stronger with a determination to keep moving ahead in life, even when the times get tough and the path rougher. Undoubtedly, it’s not at all an easy job to parent a kid with developmental issues. The majority of these children are not treated as they ought to be, regardless of the measure of warmth they show consequently. Here are a few ways that will come in handy to start parenting your special child in the right and effective manner.
An optimistic attitude:- Having an optimistic approach while handling such unique kids is important. That’s because it can let you deal with stress and negative situations in a much healthier way. Understand that you are not alone in facing obstacles. As a family or a a parent, it’s up to you to show your kid how to manage those impediments without getting discouraged or overwhelmed. Embrace your role as a proactive parent. It may be baffling at times, but remaining optimistic and calm can have a significant impact on your child. The kids usually learn and adapt what they see, hence they follow the family and parent’s lead. Consider the challenges as a mere speed breaker, rather than a roadblock.
Educate yourself:- It’s very important to properly understand your child’s development disorder or any other of his specific requirements, so that the child functions conveniently and lives happily. Try to read as much as you can. Go through expert-driven write-ups, join webinars, workshops et al. Do your own research and stay informed. You may be enticed to seek help from others, be it teachers, therapists, or child psychologists, but remember that nobody knows your child better than you. You’re the foremost expert on your kid. So, take charge!
Regular developmental assistance:-Many times, a large number of families & parents overlook it! However, note that a periodic evaluation gives insights into a kid’s developmental process. Try to observe your child in various surroundings. Make note of little things such as how the child reacts to different situations. Learn how the child interacts with people in a community. If the observations and your child’s reactions show slow or no advancement at all, don’t spare a moment to meet the experts.
Arrangement for education:- Families and parents should enroll their children with special needs in schools, after the assessment of their disabilities by a team of a doctor, a psychologist, and a special educator, in schools, the child be placed in appropriate educational settings. Children with mild and moderate disabilities of any kind may be integrated in normal schools, severe in special schools/ remedial schools. This exercise shall make CWSNs better citizens in their future and will come out of dependency.
Understand the Diagnosis: A family and parents need to have a crystal clear understanding of their child’s diagnosis. Read, research, ask questions, and take notes that you can refer back to a doctor. Note the symptoms and its impact my child’s development and ability. Know about the treatments and tests available for this diagnosis. Know about medication, treatment, or equipment to pursue to make child more comfortable and enrich their life.
Understand Child’s Special Needs: This is different from understanding your child’s diagnosis. Knowing why they act, look, or move the way they do is not the same as knowing how to help. Note what are the main issues my child with special needs is facing. Their special needs can manifest in several ways like difficulty with changes in routine, fear of physical contact, dislike of loud noises, need for extra time in school, inability to complete certain physical tasks, and more. Identifying their needs helps you—and everyone you and your child interact with—understand the unique challenges they face, regardless of their diagnosis. Speech therapy, physical therapy, and occupational therapy for children with disabilities can all help you to meet your child’s individual needs. Remember—you are not alone. Knowledge is power, and the more you know about your child and their special needs, the easier it will be to meet those needs and help them thrive.
Financial planning for treatment: All families and parents worry about their children’s future, but when a child has disabilities or special health care needs, it’s normal to have additional concerns. After diagnosis of the disability of the child, families and parents should be mentally fit and prepared to bear various expenses for various medical treatments and therapeutic procedures, if any.
Use of various assistive devices: Mobility equipment like bars, chairs, and beds, hearing and speech aids, walking sticks can provide tailored support for the child with disability that makes daily life just a bit easier. Various such aids are available under various Government schemes and also some private players manage the availability of such aids.
Resources: Families and Parents of children with special needs should approach various Government schemes for the rights and welfare of their wards. Various NGOs are also working for the CWSNs and these can also be approached for various kinds of assistance in this regard.
The community at large is often unaware of the potential of children with special needs. A positive attitude is the single most important quality for anyone who works with children with special needs. But some people with no experience or knowledge of his disability have jumped right in and changed his life for the better.
(The author is former Incharge Abhedananda Home-Higher Sec Institution for Specially-abled Children, Srinagar)
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