A Mother and her Child in the World of Down Syndrome in Nepal

Dr. Lalita Joshi, a retired Br .Gen. of Nepal Army Medical Corps with strict principals, simple and honest is driven by a deep love for her son Ashish, born some 22 years ago with Down Syndrome.   She married  Dr. Prabhu Joshi, an anesthesiologist, in 1980 and their first son, Amit, was born in 1981.  Amit completed his MBA in the US and is now working for an investment company in Nepal.  In 1989 Lalita became an OB-GYN.

In 1991 their second son Ashish was born.  For 14 days Ashish was in NICU before he was able to come home.  He possessed some facial features of a child with Down Syndrome and although the family suspected something, there were no real issues.  When Ashish was three the family went to  Madras for an elder 

sister’s renal transplant.  At that time Ashish was tested and it was confirmed that he had Down Syndrome.  Fortunately for the Joshi’s, Ashish has been accepted by all family members who refer to him as Lakshan Kobacha or lucky child.

The most common type of Down Syndrome[1] is called Trisomy 21, which accounts for about 95% of people affected.  Ashish has a less common type, known as Mosaic, which is a milder form of Down Syndrome enabling him to function at a much higher level. 

In 1995 Lalita accompanied her husband while doing Cardio –thoracic anesthesia training in Sydney, Australia . She also got a chance to do training in Infertility in Paddington Royal Women Hospital where she met Dr Stephen Horrowitz OB/GYN , her mentor. He too had a son with Down Syndrome.  Dr Horrowitz provided Lalita with the latest information on Down Syndrome along with a book written by a Pediatrician, Prince of Wales Children Hospital, Sydney and VCD on early Intervention developed by Macquaire University. All this helped her immensely to take care and train her son bringing him to his present independent and confident position.    

When Ashish was five years old he attended The South Point Boarding School in New Baneshor.  The school didn’t know that Ashish had Down Syndrome, as Lalita had kept this hidden for fear of him not being accepted by others. At age 11 the school realized that something wasn’t quite right with Ashish and that he had some learning disabilities. Lalita spoke with the principle and told him the truth., that Ashish had Down Syndrome.   Instead of rejecting him, the school decided to keep Ashish and take on this “challenge”.  The teachers, other parents and children treated Ashish with a great deal of respect, often helping him with his homework.

Ashish stayed at South Point until he was 18.  He sat for his SLC but couldn’t clear it.  Ashish at 22 has a full life and attends aerobics training twice/week, keyboard  (music) training 3x/week and basic computer training.  He also attends painting classes.  Lalita continues to look for avenues in which Ashish’s real talents can come out. Ashish is getting home training from an occupational therapist who comes to the home once/week which has helped him to handle money and independently takes public transport.

Unlike in India where I spent three years working in the field of development disability, In Nepal there are few services specifically focused on people with Down Syndrome.  Because of this and the goal of wanting more for Ashish, in 2006 Lalita founded the Down Syndrome Association of Nepal (DSAN).  Lalita says that “If every child matters, every child has the right to a good start in life. If every child matters, every child has the right to be included. And that is so important for children with special needs." DSAN’s vision is a Nepal where children with Down Syndrome can grow up to be independent, based on their capabilities, and be respected and productive members of society.

In Nepal there are no official figures on the number of children/adults living with Down Syndrome.  Lalita isn’t sure of the exact scope of her work but the goal of DSAN is to create awareness regarding Down Syndrome and opportunities  for those living with DS.  Lalita also provides pre-conception and pre-natal counseling to high risk couples who have the chance to give birth to a child with DS and also  translates Down Syndrome documents into Nepali, of which there aren’t many.  Lalita’s dream and major focus is to develop an early intervention centre which will provide therapies and trainings so that more people can have an early start in life helping them to become more independent and reach their own potential.  Lalita is also concerned about providing services for a full “life-span approach” in order for people with Down Syndrome to lead a full life. 

Drs. Lalita and Prabhu  Joshi want to find a partner for Ashish and hope that one day he will get married.  They would like Ashish to have a small business in order for him to earn  and be able to live on his own once they are no more.  In the end this is nothing more than any parent would wish for their children. 

You can reach Lalita Joshi at (lalita@dsanepal.org.np)

Michael Rosenkrantz can be contacted at mikerlakers@yahoo.com

What is Down syndrome?[2]

·         Down syndrome is a chromosomal condition that is typically caused when a baby is conceived with 47 chromosomes instead of the normal 46. Starting in the womb, this additional genetic material alters the course of the child’s development.

·         The most common form of Down syndrome, Trisomy 21, occurs when a child is born with a full three copies of the 21st chromosome, rather than the normal two.  In rare cases, Down syndrome is caused by other chromosomal arrangements.

·         Children with Down syndrome typically have intellectual disabilities, hypotonia (low muscle tone) and characteristic facial features, such as upward slanted eyes and a flattened nasal bridge.

·         Except for Translocation Down syndrome, which occurs in about 4% of people with Down syndrome, the condition is not inherited, which means that it doesn’t run in families.

What are the different types of Down syndrome?

There are three different types of Down syndrome:

·         Down syndrome (or Trisomy 21) accounts for ninety-five percent of people with Down syndrome. A child with Trisomy 21 has three copies of chromosome 21, rather than the normal pair.

·         Translocation Down syndrome accounts for just three to four percent of people with Down syndrome. Translocation is what people are referring to if they say that the condition is inherited, because usually one parent is a carrier. The extra #21 chromosome is present, but attached to a different chromosome in the egg or sperm. The clinical features of people with Translocation Down syndrome are indistinguishable from those with Trisomy 21.

·         Mosaic Down syndrome accounts for less than one percent of all people with Down syndrome. Children born with Mosaic Down syndrome have some cells with three copies of chromosome 21 and some cells that have the usual pair. Clinically, babies born with Mosaic Down syndrome can have the same features and health problems seen in babies born with Trisomy 21 or Translocation Down syndrome .However, the presence of cells with the normal number of chromosomes may result in fewer characteristics of Down syndrome.

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[1] See table below.  

[2] http://www.childrenshospital.org/az/Site803/mainpageS803P1.html

Communications and Customer Service

Communication and Customer Service

In the short time that I’ve been on the earth, the methods used for communicating have changed dramatically.  I used a typewriter throughout my university work along with lots of white out, started using e-mail when I was in my early thirties and didn’t have a mobile until I was 40. (I recently read that a Kremlin Security Agency is buying typewriters to prevent information leaks).   I own a laptop and regularly use e-mail, SMS, Skype and Facebook, but don’t own a smart phone or tablet.  All of these advances have made it so much easier to “flatten” communications and remain in contact with friends and family no matter where I might be living. 

It would seem obvious that given the state of technology, communication and customer service have improved, but I’m not sure that this is the case.  Part of this has to do with how busy our lives have become, at least from what I’ve observed in urban areas.  How often are we talking to someone face to face and get interrupted by a phone call or SMS or feel a need to check e-mails?  How often is it that one sends out an e-mail and gets no response? How often do we engage in active listening and really “being present” with others?  How often do people make promises and then not deliver by an agreed upon date? 

When I was Director of the Central Market, in Lancaster, Pennsylvania  the oldest farmers’ market in the US located in the heart of the Amish Country, I didn’t understand enough about the environment in which the market was operating, about being present, i.e. focusing on another person  and truly listening, greeting someone by looking into their eyes and taking the time to talk.  Living overseas has helped me to have more understanding regarding the depths necessary for intentional, conscious communication to take place, especially given that I am not fluent in any other language besides English.

It is important to consistently communicate, even if the response might be considered negative.  A good example of this is applying on-line for a job and receiving a mechanical response, “due to the high volume of applications received, only those short listed will be contacted”.  Another example is sending an e-mail asking a specific request and not receiving a response because the person might not be able to help.  How about when you call someone, there being no response and the person never returns the phone call;  or chatting on Skype or Facebook or other platforms and the conversation suddenly ends?     

On some level those of us fortunate enough to avail ourselves of technology have the capability to be in constant communication, but somehow we have become so inundated with information that we end up ignoring another person who is trying to make a connection with us.  By having the ability to use technology and not following up, we take relationships for granted and end up losing them.  This is true in all faucets of our lives.

Many years ago when I was Director of a small HIV/AIDS NGO in the US, I was so enamored with e-mailing and sending out many mails, that I began to lose a personal connection with my colleagues.  Instead of walking down the hall to chat I would have an e-mail conversation because I thought that it would be more efficient.  In fact, it only served to put up barriers. 

In both my personal and work lives I try to focus on the person that I’m speaking with, but it is not uncommon for me to be having five chats at one time on Skype and FB.  In this way I’m not serving anyone and can’t be present for the person on the other end.  I wouldn’t be surprised if the people that I was speaking with were in a similar boat and chatting with a number of others. Multi-tasking is such a way of life and even I do it.  While recently in the US, I spent time on the computer, chatting with friends, not wanting to lose these connections; I enjoy being connected throughout the world,  but maintaining my ability to have face to face relationships is key.

How we communicate with others, determines the strength of our relationships and the service which we’re willing to provide.  Prior to going to the US I had to change my flights a number of times and literally spent hours and hours on Skype with the on-line travel company.  They were always courteous and I felt as if they provided excellent customer service, being very responsive and attentive to my needs.  Some of the results of our conversations responded to my request but some didn’t.  The important thing for me was that somebody was listening and doing their best to help.   Upon returning to Nepal I had a customer service request for a local company.  Initially I was somewhat hassled and told that nothing could be done because of the rules.  I spoke with three people who said they couldn’t do anything.  I then sent an e-mail explaining the situation and miraculously, without any notification, the issue was resolved. 

My personal acknowledgement as to how to communicate better has come with maturity. It isn’t that I will slow down in my work and interests, but it does, as my VSO training emphasized over and over, come down to building relationships and this comes through personal communication. 

Beauty and Gender

Ultimately it isn’t about how externally beautiful a person is, but is more about what someone does with their abilities

I’m not sure how many times I’ve told  a woman that she is beautiful, resulting in a smile appearing on the woman’s face.   On my part, stating that a woman or a girl is beautiful or a man or boy is handsome is intended as a compliment.  However, I don’t often tell a man that he is handsome, after all,  men don’t say this about other men.   I’ve been thinking about how commenting on physical beauty reinforces gender stereotypes, something seemingly considered to have societal importance, leading to a very superficial understanding of and connection with others.   I question  though what really is beauty and why should it take on so much importance, especially when it comes to how we view women? 

In my eyes, my daughter is very beautiful, slim, tall, lovely facial features, but her depth goes well beyond her appearance as she is an actor, dancer, musician, writer, director and singer.  Beyond her physical features, she is smart, sensitive and has a depth of personality which makes her very interesting.  She doesn’t change her Facebook profile picture, which is anyway, usually not her face,  very often and although she cares about her appearance, isn’t hung up on this, a quality that I’ve found to be highly unusual, especially among young women.

We may harm our children, especially our daughters and other female members of our families  by continually describing them as being  beautiful , a comment that if not followed up with an equal statement of you are, e.g. smart, on  some level means that females may not be taken seriously .  (Would we only say to boys that they are very handsome without also stating that they are also, e.g. good athletes or smart?)  Reminding a girl or a woman that they are beautiful  maintains a need for attention,    a striving to look like the celebrities who are so very prominently “displayed” in our daily lives.  On the other hand, when we see someone who looks “different” or is considered “ugly” we tend to shy away, make unkind comments or see the person as “invisible”.  A judgment is made and possibly even a dismissal based upon how we perceive someone’s outer beauty. 

Breaking down gender stereotypes, i.e.  how one is supposed to look, act or dress is a difficult task and requires broadening our thinking, and in our male dominated societies, treating women as equals.  Recently I saw a number of women wearing green and yellow bangles and mehndi painted on their hands.  I decided to have  a neighbor paint a pattern on my left hand, something which I had done twice while living in India.  The comments of this experiment ranged the gamut from “not suitable” to smiles to seemingly it is ok because he is a Badeshi (foreigner).  Did wearing mehndi mean in people’s minds, especially those of other men, that I should be treated differently? 

I understand the differences in dress between men and women, how clothes might be designed to highlight a person’s body.  But who  is this for?  In Kathmandu I haven’t seen many men in short shorts, or low cut shirts exposing their chests.  It is a person’s right to choose how they dress and express their individuality, I would never argue with this, but does the person feel empowered or  does this only serve to reinforce society’s views of the differences between men and women, including how someone is viewed by others?  If a women is to be truly powerful and taken seriously, must she wear a business suit and have the “toughness of a man, i.e. must women conform to “men’s dress” in order to change men’s attitudes?  Are women, in general, considered too fragile by men to not be tough enough to take on difficult corporate and political assignments? 

One method for creating further equality is through legislation, but then one might question who  is the implementer and is the legislation being properly implemented.  Can having reservations for women or for that matter anybody, e.g. in politics, really help or is it more about having strong advocates running for political office and  breaking down barriers?  Does this issue really come down to those holding power, whether they be part of a caste, gender or political group,  creating an enabling  environment for the sharing of power? 

Women in the land rights movement seem to be able to avail themselves of power, but this might have more to do with the fact, that in the views of society, the landless and land-poor men of Nepal, hold little power.  Never-the-less this is a major shift in how Nepali men view their wives or daughters enabling a more equitable distribution in power sharing and decision making.  As more women and men share land certificates, at least, part of society may change their gender views.  But will this translate into further equity throughout all of society?

Continuing to think about and make small changes in gender equality issues is vital for societal health.  I try to do this on the basketball court when I’m conducting trainings for young men and women.  Whenever I see the children self- segregate, which also may be a function of their age, I immediately ask them to integrate.  At first this is somewhat of a “chore”, but over the course of the training gender differences seem to disappear.  I explain to the children that on the court there is no gender, only teammates. 

We all look for beauty in the natural world as if somehow finding this leads to more happiness.  But if this is all that we aspire to, we miss out on the many shades of diversity and what this brings to our lives.  It is up to us to recognize how beauty is more than skin deep.  Once we change our perceptions, and lead by example, in the longer-term society will also change to become more equitable.