FIELD STUDY

Research Planning

On the basis of research data, we decided to focus on the siblings of children with intellectual disabilities because the population of intellectually-disabled children constitutes the highest number in India, among other disabilities.

First, we paid a visit to Prabhat Education Foundation in Ahmedabad, since this organisation had already been taken up by us in our case study. This organisation provides treatment and therapy to children or adults with any kind of a disability.

To focus on the city of Gandhinagar, Gujarat, we looked for organisations working for children with special needs, out of which we only found the Vishesh School. This school enrolls children only with intellectual disabilities and imparts training to them, which was very relevant to our course of study.

When talking about children with special needs and their families, counselling is something that becomes really important because there are different kinds of pyschologies in play. It is also very crucial to understand what is being borne in the mind in such a delicate situation. For this reason, we contacted a few psychologists in Gandhinagar, who could validate our topic and guide us forward.

Our secondary research included looking up if there were any organisations working with siblings of special children in Gandhinagar or in the rest of the country and we realised that there was not even a single one that existed.

INTERACTIONS & INSIGHTS:

Home Visit to Mrs. A (mother)

· We observed that having a child with special needs in a house directs a lot of attention and energy towards them. As a result, the siblings have to be mature enough to understand such a situation and adapt with it. This was confirmed by Mrs. A.

· There may be situations where siblings of special children are not able to freely express their feelings to their parents, and might require a way out to be happy.

We would focus on enhancing the interaction between these siblings which would further nurture their relationship. Therefore, we felt the need of a platform for these siblings to share and express in a controlled environment.

Home Visit to Ms. B (elder sister)

. Here, the elder sister Ms. B, is the bread winner of the family. The mother is constantly worried about who would take care of her child with special needs when she would not be there for him.

In such a scenario, enhancing the relationship between the special child and their sibling would relieve the mother of her worry for her special child's care in her absence.

Prabhat Education Foundation: Mr. Keshav Chatterjee (Director)

· Keshav ji believes that siblings are the closest family members when we talk about families with more than one child. It is the siblings who grow up together and become lifetime friends. In the case of children with special needs, the same applies.

· Working towards strengthening their relationship can be beneficial for both of them and help them lead a happy life.

· He also suggests that some children miss out on a regular childhood because they have to be there to take care of the special child at home.

· Also sometimes, the siblings of special children have to face embarrassment for their sibling’s situation and do not know how to deal with it. This may manifest itself in their experiencing negative emotions in general or even against their special sibling which may prove harmful for the family.

NGO Ummeed: Ms. Yashna (Psychologist)

· After talking to a psychologist working with Ummeed, an NGO for children with special needs, based out of Mumbai, we came to know that working with siblings of special children could be a potential area. They themselves quite recently introduced a session in their curriculum involving only the siblings, something like a support group, because they felt that it can make a lot of difference in the family wellbeing.

· They supported our idea of enhancing the sibling bond and also involve the siblings of special children in suggesting constructive ideas aimed at social development of the special children.

Vishesh School: Ms Dipali Upadhyaya (Psychologist)

· On approaching Vishesh School for special children, we got to know that they had not thought about including siblings of special children in the activities but believed that it would work.

· They were very supportive and willing to give us a chance to implement our idea of involving special children and their siblings in a curated activity because it would help in their mutual development.

After the aforementioned visits, we decided to collaborate with the Vishesh School because firstly, they were in compliance with our requirements of our target audience, and secondly, they expressed their keenness over our research and wanted Akkad Bakkad to conduct the service in their premises.

SECONDARY RESEARCH

A combination of societal and legislative changes have made the lives of individuals with disabilities and their families more comfortable in comparison to the way things were throughout history. From educational to industrial institutions, the accommodations and sensitivity offered to individuals with disabilities have created a less restrictive and more accessible environment. Families of individuals with disabilities have also gained attention and now have an array of services provided for their education and support.

However, there is one member of the overall family system who has been neglected as part of the effort to attend to disability issues: namely, the siblings of those with disabilities. Sibling issues in general is an area that has been neglected in research, application, and the law despite the fact that siblings play an integral role in the lives of people throughout life. This neglect of sibling issues is even starker when examining the attention given to siblings in overall disability services.

To begin shedding some light on this problem, below are several common issues faced by siblings of children with disabilities:

SIBLINGS MAY DEVELOP MULTIPLE DIFFICULTIES

Siblings of children with disabilities are at a greater risk than average of developing emotional issues, anxiety, and stress. These problems are known as internalizing issues, not obviously visible, and may be an attempt by these siblings to hide their problems; they may want to be well-behaved or protect their already overburdened parents. Other issues that these siblings may face are peer problems, as well as a lack of engagement in extracurricular activities and academic issues as a result of limited time and money.

SIBLINGS BECOME OVERLY RESPONSIBLE AND INDEPENDENT

Considering the attention given to the child with the disability, siblings may neglect their own issues. In some cases, siblings experience parentification where they are expected to have many responsibilities for themselves and their sibling, developing duties similar to those of a parent and overlooking their need to act like children. This responsibility may seem positive to parents but may actually be precursors to emotional distress.

SIBLINGS MAY FEEL NEGLECTED BY PARENTS

The family focus on the child with the disability may take away from the attention desired by the sibling. Time spent on medical and therapy appointments for the child with the disability limits the amount of time parents can spend with the other siblings resulting in their feeling neglected. Furthermore, parents may spend a great deal of emotional energy on the child with the disability leaving little emotional energy to support the sibling.

SIBLINGS FEEL IN THE DARK FROM PARENTS AND SERVICE PROVIDERS

Siblings may have similar questions about the sibling with the disability as do parents but have little information or resources available to them. During doctor visits, they are often left in the waiting room. Parents may want to keep well siblings away from the treatment environment or may want to protect the privacy of the sibling with the disability leaving the well sibling feeling in the dark about what is going on with their sibling. They may have many unanswered questions about their sibling including whether their disability can be transmitted and what will be in the future. With little or no information, siblings may develop their own ideas about what is happening, often much worse than is actually true.

SIBLINGS EXPERIENCE MIXED EMOTIONS

Sibling may experience a range of emotions about their situation. They may feel guilt wondering if they caused the disability of their sibling or they may feel guilt about why the disability did not happen to them. They may feel fear about the health of their sibling or about what may happen to their sibling in the future. Siblings may also experience resentment, anger, or jealousy towards their sibling considering the attention and resources expensed on their sibling. An additional common feeling is embarrassmentas a result of the behaviors and appearance of their sibling. In some cases the embarrassment may be so great that they disassociate from the sibling with the disability. They may claim to be an only child or may not invite over friends so that they do not have to answer questions about their sibling.

There are a few organisations abroad, that are working in this regard:

Sibs services

Sibs (https://www.sibs.org.uk/) is the only UK charity for children and adults who are growing up with or have grown up with a disabled brother or sister. We provide information, support and training on sibling issues for adult siblings, young siblings, parents and professionals.

Siblings Australia

Siblings Australia (www.siblingsaustralia.org.au) is the only organisation in Australia that is dedicated to addressing the needs of brothers and sisters of people with special needs (chronic illness, disability and/or mental health issues).

In India, most families have more than one child. 0.44% of total population are special individuals. Our focus is on children above eight who have a special sibling. Generally, these siblings grow up very fast and do not get to experience a normal childhood. Parents spend a great deal of emotional energy and time on the special child leaving little emotional energy and time to support the other sibling. Akkad Bakkad steps in to give solutions focused on the sibling and help enhance their relationship with their special sibling.

At Vishesh School

To get to know about their child/sibling better, general points of discussion were brought up and questions were asked.

Examples of questions asked by Akkad Bakkad to families:

1. What is your child's/sibling's daily routine?

2. Which family member is the child most attached to?

3. What are the child's/sibling's interests/hobbies?

4. Is there anything that the child is averse to/fears?

5. Are there any major difficulties faced at home?

6. What do you have to say about the society and how do you think they take your child's/sibling's presence in a place?

7. What are those changes that you wish to make in the world around you, so that it becomes more comfortable for your child/sibling?

INSIGHTS

• Every child with special needs has a fixed daily routine because of which their body is automatically clocked.

• Siblings have a major role to play in their lives because the special children were found to be more attached to them than to anybody else.

• It was found in two families that the siblings are older than the special child, and they have made compromises in their career and given up on professional opportunities so that they can take care of the special child.

• The special child desires a lot of attention from his loved ones which is why it gets challenging for the siblings to concentrate on their work while at home.

• In one case, the sibling always took her younger brother (who is a special child) to outings with her friends, until one day, her friends asked her to come without her brother for reasons that they knew better. The sibling was disappointed in them and since then, she stopped going for outings. This example speaks volumes of the feelings of resentment that the sibling went through and other such siblings in similar situations may be going through, in their lives.

• Parents rely on their other child/children to a huge extent for helping them take care of the special child at home. Therefore, the role of siblings is just indispensible.

• Families having a special child feel that the society should be more accepting and supportive rather than looking down upon children who are a bit different from their own children because they believe that a child is a blessing of the Almighty and should be embraced unconditionally.

comments from amresh :-

1. your planning of the research is absent.

2. how you have choose the case study

3. whom you have meet what are their profile.

4. what kind of question you have asked

5. what is the insight