Varuni's brother talks about his relationship

I didn’t realize that she was a very different child for the first few years. i knew something was different - she looked different from all the other children i had seen - sorta mongolian, but everything else was the same. Mom and Dad seemed as loving, and i was still the apple of their eye. So i didn’t really care.

I guess it was only after the first few years, once the differences became more apparent. She couldn’t talk as easily, her walk had a funny limp to it, and her body mannerisms weren’t as normal as mine or other kids. Plus, i'd always see Mom and Dad super paranoid about her all the time. We wouldn't let her out of our sight, and if she did go missing, it was pretty scary. Slowly the classes and courses and teachers came into the picture, but honestly if you ask me, there wasn’t any one particular day where i woke up and suddenly realized that my sister was a downs syndrome. I don't remember having a 'chat' about it with Mom or Dad either.


I think a big reason was that we always had children in the house. And all of us had our strengths and weaknesses. I would get worried easily, namrata loved adventure, shagun had a ear problem and varuni was, well just slow. We accepted that and moved on with our lives. She was part of all the plays, maybe in the background, as a prop, side actor, but she was there. As you were once you were born. We just filled you two in, it didn’t really matter.

I don’t' really think i missed out on any attention during those years. Sure mom and dad were busy with figuring out her life, but i guess i've never really been a craver for attention. I don't think it mattered much to me. Plus i had dadi who called me her 'the prince'. She also told me from a very young age that i was going to inherit the house and the business...haha.

Our relationship as siblings has obviously matured over the years. I used to be apprehensive to meet her friends, I would be scared to get her infront of mine. I never really tried talking to mom about the problem, never tried to understand how i could help and din't really talk to any of her teachers. I guess i was a little self-obsessed during those younger years and varuni's life seemed to be on track - Mom had taken charge and i never offered to help. But i guess the big change happened once i left for college. Everytime i'd come back for a break, i'd see something different. And these werent big improvements, but small tiny changes that would suprise me like hell. She'd started focussing on dressing suddenly, she'd tried to talk in english, she found her niche of hindi movies, she' had a bunch of friends to talk about. And i think you had a big role to play in that. As you grew up, Varuni saw the need to grow up as well. I guess it was forced to some extent, but if she had to keep up with you, she had to shed a bit of that kiddy behavior. Brick for brick i guess. I suppose the teachers program was the culmination of all this work - she's a completely transformed girl after that. Her confidence levels were soaring sky high, she had a social life just like hers, a friend circle, the same trials and tribulations. 

And like i mentioned, this development eases a lot of guilt in my mind. Sitting here, i feel she's in a good place, settled with a comfortable normal existence. I don't feel bad about not contributing on day to day level, which i wouldve if things were'nt as pretty. 

I think gender has definetly impacted the relationship. There are lots of things i cant talk to her about and she doesnt choose to discuss them with me. Also i do try and avoid the 'boy-girl' question as much as possible but i feel that's a discussion we are bound to have soon. But i like giving her attention in front of her friends. I think it makes her feel special - she can show me off in front of her friends, which i think boosts her ego. And its not a competition or a threat - which might be the case if she takes you or bugs to meet her friends. Namz is older so she isnt a threat again.

A way that I use to explain our differences is to find an analogy. If she can't do something i can, then I try and find something she does, that i cant. I can type in english and spell, she cant. But then she can dance on hindi songs and remember their names, and i cant. I try and tell her that everyone's different and that she's got her own, different strengths just like everyone else.

I think having her around has impacted me immensely. I look around at people around me everyday, and i find people very judgmental about others. People use words like ugly, retard, dumb, very loosely and it troubles me. I think I’ve learnt to not be judgmental about anybody and to give the benefit of doubt to everyone. I've learnt to be patient and listen. Most of my conversations with varu are about really listening, understanding what she's saying and then giving her a simple answer. The other thing is that one's got to be able to get down to the other person's level. Its not really difficult, but most people are afraid to get off their high horse. I think that's another thing I’ve learnt by interacting with varu. Today, i feel comfortable talking about bihar with a riksha driver on my ride back home, talking to ambika - the eunuch i end up bumping into once a week atleast at the bandra junction, or the MD of a company. I think varu has a big role to play in that.


I still need to figure out my responsibilities towards varu. I answer her quieries but i don't really think im adding anything substantial to her life. I can help you with projects and give you career advice, but varu doesnt need a guide or a mentor. I guess its about spending time, and constantly finding ways to enrich her learnings.

And that’s a responsibility both you and i have to fulfill. We can't expect mom and dad to do this their whole life - the onus is on to take charge. I think the community for siblings is a sweet idea, and we should definietely implement that. But we need to think of more stuff, find more ways. I've been thinking of it since we had our last conversations - the both of us really need to pull up our socks and make a substantial contribution in her life now. 


We'll talk more when i come to Delhi this time.
Lets make this community thing happen properly. I'll get my buddies from the online agency to help us out too and find out a bit about the bombay chapter.

Findings from my conversation with Kanika's parents

Main Goal

To make her as independent as possible so that’s its easier for anyone to look after her.

We don’t know what tomorrow has, we can only focus on today so lets try and do whatever we can today. Take each day as it comes.

If the fiscal part is taken care of then the physical part can be taken care by the sibling.

Things that parents did

Kept them in different schools so that the sibling does not take the pressure of the other. It’s unfair for the sibling to take that load at such an early stage in life. It gave them the opportunity to have completely different worlds of their own. It forces the special child to become more independent and build her own relationships whereas it takes the weight off the sibling and give an opportunity to build their own world and relationships.

Make life as normal as possible. Kanika is the elder sibling so parents ensured that she was ahead of the curve vis-à-vis her sibling. She was the 1^st to get a cycle or mobile. Let her feel like the older one

Share rooms. If the sibling got their own room while growing up, Kanika would get cut off from a lot of things that would have been good for her to get exposed to and you run the risk of getting distant. You learn to share and respect each other’s interests. Till your growing years it’s good to share a room but after that it’s important to move out so that you learn to manage your own space. They learn to give and take.

You can’t tell the sibling what to do but you can set the track and create an environment where they both end up caring for each other and respecting each other. As parents we can hope that we inculcated the right values to make sure they recognize that its a family unit and not a burden on them.

You don’t focus on the differences but on the similarities.

Don’t differentiate but integrate.

It is much easier to make them weak, than it is to make them strong.

If two elements sit together and you grind them together, they fit closer to one another. Their rough edges are removed and smoothened out.

It’s very important for parents to have a second child if the first one is disabled. You don’t enjoy the joys of parenting. You don’t realize that half of what is happening to the special child is not because of the condition but because that’s the way children are. There are so many issues that are there have to do with every child and not with the problem but because there is a label, it gets hung around their neck. Until parents don’t have that exposure they will never know that these are simple human nature issues and have nothing to do with the problem.

Marriage: Explain what responsibilities come with marriage. When you can manage and maintain a house, start earning enough is the day you start thinking about marriage.

Driving: When you can be chauffer driven then why do you want to drive.

What the sibling felt

The sibling as a kid never noticed the differences until the age of 8 and started going through a stressful situation. She started visiting friends’ homes, noticing what their elder siblings are doing and would have started making comparisons in her mind.

The interactions made them work out their own equation and work as a team. The sibling used to be very shy but learnt how to be confident from the special child.

She wants kanika to learn how to defend herself and would often provoke her but kanika would just refuse. Somewhere she has made her peace.

There were times when she was a little impatient. She came to terms with it much better when she was about 15. As she gained security in her growing up she became a lot more protective of kanika. Earlier it was a little ambivalent but then she was more open in going out. Parents have to allow their normal child time to cope with it

What the special child felt

Marriage:

Gender

You have that comfort that a sister will look after a sister particularly when you have physical or mobility issues. There is a very strong component of the emotional and physical part you are looking at. You are basically looking at a maternal angle form the sister

You learn the best when you have peer interaction.

33:00

Explain to them that there will be change but the fundamentals remain the same.  As siblings you can focus on things that you can do today, rather than what you used to do.  Build a special routine or activity that is unique to you two and that matters to her.

Different people are good at different things. Some people are good at sports and some at studies.

Findings from my conversation with my parents

How different is this relationship from any other sibling relationship?

A DS child develop slower than his peers and so requires a little more stimulation in life. Due to the condition he cannot create all that excitement himself or herself. Having siblings around brings a feel of normalcy i.e. the environment is more normal than it would have been for a single DS child. The extra stimulation, which he receives, form a sibling around goes a long way in helping the child develop.

Imitation and observation

Efforts to imitate

If you don’t have a sibling to observe the stimulation is much less.

Eg. Jumping…9:00
Her milestones were delayed. Instead of walking at 1 she was walking at1.5
docs said that something like jumping and hopping is something she might never achieve, but looking at all her siblings jump around she kept trying until she was able to. She would not have been dancing if she had not been able to jump.

Eg. She wants to imitate driving but unfortunately cannot drive.
How do parents deal with it: You are short so your feet might not reach. Don’t shatter her dreams. Don’t maker her lose her self-confidence and motivation to achieve. Divert her attention to what she can do but does not. Set a target that she can achieve.

Negative- can acquire bad qualities from the sibling also

Observation and Comparison

Benefit of social interaction.

Watching her siblings lead their independent lives made her want it too. Watching them with their friends made her want to develop her network of friends who are now like siblings to her.

While growing up she was always surrounded by siblings and cousins, who were of the same age and the differences were not that apparent. This need for a group of friends started when the siblings growing up and moving away created a vacuum. That vacuum is necessary for parents to understand the need of creating a group of friends. If you don’t have something you don’t miss it. You don’t feel the need for company unless its gone. That’s the best thing that could happen because these friends answer each others questions from their own individual experiences. They stand united and their lives are as normal as it can be.

Gender

It’s easier for her to compete with her sister in terms of clothes. Wants to wear the same but cant since she is less aware of her body and don’t want her to be mistreated in public. She wears those sorts when parents are with her. So that balances out her desire for a certain type of lifestyle. She gets that opportunity also.

Having a sibling of the same sex has increased her awareness of clothes, cosmetics and friends. The entire act of dressing up, putting make-up came naturally to varuni because of observing her sisters.

Expectations from the normal sibling

Care giving responsibilities

Taking care in the future. Both siblings are likely to outlive the parents.

Lead an interactive life. Knowing the responsibilities is not enough.

Impact on normal sibling

Become a more sensitive person and more tolerant to any challenge.

You have been chosen to have a sister like this because of the qualities that you possess.

Siblings become ambassadors of such sensitivity and pass it onto their social circle.

Research Questions

I am getting really confused in framing these questions. Since my entire research is psychology-led I plan on taking interviews which will be unstructured so that it flows as a conversation. The basic layout is as follows but it will keep changing according to the person I am interviewing-

1.     How does the relationship affect the ‘normal’ sibling’s behavior?

Sibling

·       What was your reaction when your parents told you that your sibling is different?

·       What are your earliest memories of your sibling?

·       What were your friends’ reactions and how did it affect you?

·       What sort of quality time do you spend with your sibling? What are your responsibilities?

·       How has having a sibling born with DS changed your life? How different do you think your life would have been without your sibling with DS, or if they were “normal”?

·       Did you ever feel that your parent’s attention got divided unjustly?

·       Where do you see your family 10 years from now?

Parents

·       What are the responsibilities given to your normal child regarding the special child? What are your expectations out of them?

2.     How does the relationship affect the special child?

Parents

·       How does the interaction benefit the special child?

·       How do you feel the existence of your normal child has helped in the development of the special child?

3.     How do the differences in ability affect the relationship?

Sibling

·       When did you first start noticing the differences in abilities and how did you parents explain it to you?

·       In what situations do you have to explain it to your sibling that there are some things you are permitted and they are not?

Parents

·       How are the differences in the abilities of the 2 explained to the special child?

4.     How do the genders and age of the 2 siblings affect the relationship?

Sibling

·       Does your gender make it easier or harder for you to tackle different situations at home?

·       Does the age make a difference in the acceptance of your authority?

Parents

·       Do you feel that your special child accepts your normal child’s authority because of his gender?

Proposal-Again!

What is the theme or topic area that you are hoping to investigate in your research project?

Sibling relationship where one of them is a Down’s Syndrome child

Can you identify two or more questions that the research will help you go some way towards answering?

1.     How does the relationship affect the ‘normal’ sibling’s behavior?

2.     How does the relationship affect the special child?

3.     How do the differences in ability affect the relationship?

4.     How do the genders and age of the 2 siblings affect the relationship?

What sort of approaches will you employ to collect data for your research enquiry?  For example, if you were going to interview students – how many would you interview? What sorts of themes would you be questioning them about?

Interview Siblings

Interview Parents

Interview Special educators

Literature Review

Secondary information

What is the purpose of your research? Why is it useful?

Down's syndrome is a genetic disorder cause by the presence of an extra chromosome, which causes delay in the growth of a child. People with Down Syndrome (DS) develop slower than their peers and thus require special care and attention.
I always knew that I wanted to do my degree project on this topic because my sister, Varuni was born with DS. When I looked at the available information, most of the guidance was for the special child and the parents, but there was not much research done on the sibling. As a sibling, I felt the need to understand and document this unique relationship of a special child and his/her sibling. I took this perspective as I can have a personal take to it. For me, my sister is my biggest inspiration and I want to take up a topic that I would do justice to.

Relevance to the external environment/ Need           

Help other siblings to understand their relationship with the DS child better.

What parents should know

Brothers and sisters will be in the lives of family members with special needs longer than anyone. Brothers and sisters will be there after parents are gone and special education services are a distant memory. If they are provided with support and information, they can help their sibs live dignified lives from childhood to their senior years.

Acknowledging Siblings' Concerns.

Like parents, brothers and sisters will experience a wide array of often ambivalent emotions regarding the impact of their siblings' special needs. These feelings should be both expected and acknowledged by parents and other family members and service providers. Because most siblings will have the longest-lasting relationship with the family member who has a disability, these concerns will change over time. Parents and providers would be wise to learn more about siblings' life-long and ever-changing concerns.

Sibs' Concerns about the Future.

Early in life, many brothers and sisters worry about what obligations they will have toward their sibling in the days to come. Ways parents can reassure their typically-developing children are to make plans for the future of their children with special needs, involve and listen to their typically-developing children as they make these plans, consider backup plans, and know that siblings' attitude toward the extent of their involvement as adults may change over time. When brothers and sisters are "brought into the loop" and given the message early that they have their parents' blessing to pursue their dreams, their future involvement with their sibling will be a choice instead of an obligation. For their own good and for the good of their siblings who have disabilities, brothers and sisters should be afforded the right to their own lives. This includes having a say in whether and how they will be involved in the lives of their siblings who have disabilities as adults, and the level, type, and duration of involvement.




http://www.siblingsupport.org/publications/what-siblings-would-like-parents-and-service-providers-to-know

Articles

Down syndrome and Siblings

The birth of a child with a disability or chronic illness, or the discovery that a child has a disability, has a profound effect on a family. It is important because the nondisabled child's reactions to a sibling with a disability can affect the overall adjustment and development of self-esteem in both children.

Powell and Ogle (1985) present several strategies suggested by nondisabled siblings themselves for parents to consider in their interactions with their nondisabled children. These siblings suggest that parents should:

• Be open and honest
• Limit the caregiving responsibilities of siblings
• Use respite care and other supportive services
• Accept the disability
• Schedule special time with the nondisabled sibling
• Let siblings settle their own differences
• Welcome other children and friends into the home
• Praise all siblings
• Recognize that they are the most important, most powerful teachers of their children
• Listen to siblings
• Involve all siblings in family events and decisions
• Require the disabled child to do as much for himself or herself as possible
• Recognize each child's unique qualities and family contribution
• Recognize special stress times for siblings and plan to minimize negative effects
• Use professionals when indicated to help siblings
• Teach siblings to interact
• Provide opportunities for a normal family life and normal family activities
• Join sibling-related organizations

Children with special needs, disabilities, or chronic illness may often need more help and require more attention and planning from their parents and others in order to achieve their maximum independence. Brothers and sisters can give parents some of the extra help and support they need; the special relationship of brothers and sisters, disabled and nondisabled, is often lifelong. This special and unique bond among siblings can foster and encourage the positive growth of the entire family.

DOWN'S SYNDROME AND SIBLING LOVE

By GLENN COLLINS

Published: November 19, 1981

The New York Times

Before 1960, more than 80 percent of children with Down's syndrome were institutionalized, ''and the other 20 percent were hidden away,'' said Dr. Jessica G. Davis, a medical geneticist who is an associate professor of clinical pediatrics at Cornell University Medical College. ''Recently, close to 100 percent have been coming into communities.''

Down's syndrome, a genetic defect that causes mental retardation and may be associated with some physical and facial characteristics, has no known cure. It is not uncommon: One out of every 1,000 live births in America - some 3,000 a year - is a Down's syndrome child, regardless of racial, economic or regional differences.

Recently a national organization called the Sibling Network was formed to coordinate research and share information among educators, physicians, parents and social workers at Vanderbilt University in Nashville, Tenn.

''Traditionally, there was the tendency to hide these problems away, to shroud them in mystery,'' said Dr. Davis. ''Siblings were encouraged not to talk about it - and so often the siblings felt angry and isolated.''

Many new parents are shattered to learn that their child has Down's syndrome; it isn't easy for the siblings either. ''It can be very scary for the next closest child in the family,'' said Dr. Davis. ''Mother goes off to the hospital and comes back - and there's a new baby with a problem. Young children may even wonder: Is this my fault? Also, in many families, the child with Down's syndrome may get more attention than other children.''

''The attempt now is to bring Down's syndrome children into the family circle in a natural way,'' said Fredda Stimell, the executive director of the school at the Association for Children With Down's Syndrome. ''We try to encourage the siblings to talk and learn from one another.''

One of the problems that older siblings have is coping with the word ''retard,'' which is commonly used as a pejorative among children. ''With the other kids, you have to explain to them - that they're talking about your brother,'' said 12-year-old Todd Probeck of Wantaugh, L.I., whose 3-year-old brother, Danny, has Down's syndrome. ''I don't think lots of kids really know what they're saying.''

Down syndrome and other disabilities
Advice on how to support siblings

July 5, 2006

Although little research has been done, recent studies suggest that brothers and sisters of children with Down syndrome are affected more positively than negatively, developing kindness, empathy and a matured respect for diversity. An article in the August 15 issue of the American Journal of Medical Genetics (published online July 5) offers eight recommendations for parents on how best to support these siblings. Be open and honest, explaining Down syndrome as early as possible. Brothers and sisters often prefer to have not one big conversation, but a continuing dialogue as new questions and concerns emerge. If children shy away from bringing up the topic, parents can help by periodically asking if they have any questions. Providing information may prevent unnecessary confusion and worrying. Allow siblings to express negative feelings. Like siblings of any child, brothers and sisters of a child with Down syndrome will experience frustrations and negative emotions; parents should know these feelings are generally temporary and allow the space to express them. Recognize difficult moments that siblings may experience. Parents can help prepare brothers and sisters to handle embarrassing or upsetting situations, such as seeing people stare at or make fun of their sibling. They should honor a child's need to establish distance from their sibling with a disability when out in public, especially during the preteen years when the need to "fit in" peaks. Limit caregiving responsibilities. While these duties make siblings feel helpful and capable, most siblings want them to be limited. Siblings often comment that they don't always want to be available for babysitting. Parents should be encouraged to remember that siblings are children first, and not substitute parents. Limiting responsibilities will help avoid feelings of pressure, resentment and guilt. Recognize the uniqueness of each child in the family. Brothers and sisters are quick to point out that they, too, need attention and acknowledgement of their accomplishments. Encourage children to reach their full potential, but without feeling the need to "compensate" for their sibling with Down syndrome. Be fair. Siblings often mention that parents allow the child with Down syndrome to "get away with more," and say that limits for acceptable behavior should be set and applied consistently. Parents should also allow brothers and sisters to have their own friends and interests, separate from their siblings and without guilt. Take advantage of supports for siblings. Brothers and sisters are often relieved to talk to peers who share their experience, and to voice both positive and negative feelings. There are many books for children and teens about sibling and disability issues; the National Down Syndrome Congress has a list:www.ndsccenter.org/resources/bibliography06.pdf. Skotko and Levine provide lists of "frequently asked questions" that siblings may pose -- ranging from medical questions ("How long is their life expectancy?") to philosophical questions ("Why does my brother have Down syndrome?") to questions about dealing with difficult moments ("How do you deal with people who use the word 'retard'?"). "The brothers and sisters we've met experience both positive and negative feelings in their sibling relationships, but positive emotions usually outweigh the negative ones," says Skotko. "Many find camaraderie and helpful information in sibling support groups." Siblings Siblings are likely to have the longest relationship of anyone with their brother or sister with Down syndrome. Siblings frequently also show unique insight – they may, for example, have less difficulty than others in understanding their sibling’s speech, recognise an underlying cause of difficult behaviour or see potential where others have failed to recognise it.  Young people will tend to mirror the attitudes of the adults in the family, so the attitude of parents to the disability will be the most significant influence on the way in which a sibling views their brother or sister with Down syndrome. Other children will tend also to take their cue from the attitude shown by the siblings to their brother or sister with Down syndrome. Siblings provide the range of benefits for a child with Down syndrome that they can in any family – language and role model, childhood companion and later social coach and mentor. Siblings in turn gain widened perspective from the experience of having a brother or sister with Down syndrome. All sibling relationships go through different stages as children grow and many teenagers are likely to experience a phase in which their sibling causes them embarrassment – parents need to be careful to handle this sensitively and it usually passes with increases in maturity.