Experience Article
Before I started volunteering as a physiotherapist at the Down's Syndrome Association of Nepal, I had very little clinical experience in working with children affected by Down's Syndrome. However, the children, staff and parents have been the best teacher I could have ever imagined and with their tremendous help and support, I was able to quickly expand my knowledge immensely.
Children with Trisomy 21 show a lot of potential in the are of gross motor skills which include, but are not limited to, walking, running, jumping and dancing. In Down's Syndrome, a number of physical and medical difficulties, for example weak muscle tone and congenital heart problems can delay the development of gross motor skills.
Physiotherapists deal mainly with these gross motor skills. Down's children usually develop slower than other children, so a physiotherapist will aim at helping them achieve all necessary developmental milestones.
It was very interesting for me to observe and work with the Down's children who are all at different stages of their individual development. The approach of physiotherapy in pediatrics differs greatly from therapy done with adults. Therapy should be a part of normal play and should be as enjoyable as possible for the child. Nevertheless, it should focus on the child's individual needs and problems, bringing out the best personal results possible. This was at times difficult to achieve for me. However, I feel that I was able to give and share some valuable ideas to be implemented into the children's daily routine.
I greatly enjoyed y time volunteering at the Down's Syndrome Association. The children are a joy to be with and managed to put a smile on my face every day. All the teachers and staff are very dedicated and loving. they were a great inspiration for me. The Association is doing a unique and wonderful job in working with children affected by Dow's Syndrome as well as educating their parents and the general public. I wish them all the best for a bright and successful future!
By Steph Haase
Physio-Therapist from German
When I came to Nepal for the first time last year, I was told : "do not think how you could change things there but let Nepal change you". It did indeed change me in so many ways. Especially after seeing the struggle that most families have raising children. The more that I read about the children's situation the more interested I became in knowing how life is in Nepal for kids that have disabilities. Being the mom of six year old with Down Syndrome I had a special interest to know what the situation was for children with that condition in Nepal and how my experience could become useful there. I came across the Nepal DSA website and I felt that I needed to contact Sheela and find out for myself what the situation was.
Now that I am here, I can see how in a short two years, Sheela and her family have established an incredible amount of much needed network of positive interaction, programs and support. But most of all they're fostering acceptance, awareness and love as well as a heaven for parents and their children. This is just the begining. I can observe and venture to say that through Sheela's determination and honest labor of love, the future for children with DS in Nepal is looking brighter for the first time in history.
In the year's to come, many of these nepali parents will have to become their child's advocate and other children's advocates. They will see the results of of their efforts. Their child's achievements will make them feel like the winner of small but important battles.
Having a child with Down Syndrome is really an event that most of us did not forsee in our lives. But being here today in Nepal, I can see how it has brought us all closer in sharing what we all want the most for our kids: to be loved, respected, given opportunities to grow as a person and obtain education, to share life with the rest of society, to be proud of them and so much more.
Well, it seems that finally through the DSA Nepal those goals seem more attainable. The challenges ahead for the association are still big but they become smaller if we think that having a child with DS has brought all of us together. For many of us it has been a life lesson on how to truly appreciate our existence and our individuality, to celebrate small achievements and each second of life.
Through our children we see daily that we have to live more in the present and simply enjoy it. How bad can that be? Now it is our duty to show the world that about our children. The DSA of Nepal is well on its way to do that.
By Viviana Fernandez
NDSC Board Member
Journalist from New York
On My Experience at the Down’s Syndrome Association
The day before I started my volunteer work at the Down’s Syndrome Association, I was nervous. I was anxious because I didn’t know whether I would be successful in directly dealing- one on one- with children who have Down’s Syndrome. To be frank, I didn’t think I could do it. I had heard a lot about Down’s Syndrome and I knew what it was. Well, I knew its scientific definition at least. What I realized later was that it takes more than just being aware of the scientific definition to actually know and understand Down’s Syndrome and its impact. By spending time with the children at the Association, I feel like I have achieved a deeper level of understanding of this syndrome and its effects, so that I can really appreciate and adore these children just the way they are.
Despite their being physically and biologically slightly different, children who have Down’s Syndrome are, in essence, the same as others. From the moment I first started to interact with them, I realized that not only were these children as innocent and adorable as all others, but also very warm and amiable human beings. Not once did I feel unwelcome in their playroom nor were they ever unfriendly towards me. Far from unfriendly, my very first impression of Satyam, Sabinaya and Sambriddhi, (the only three who were there when I first joined) was that they were such forthcoming and affable little children. They had no inhibitions what so ever, so that the very first day I met them we ended up having lots of fun acting out "Twinkle Twinkle Little Stars" together. Over the weeks, as I helped them solve puzzles and watched them dance to nursery rhymes they seemed, to me, just as enthusiastic and energetic as any "normal" child.
Sadly, I cannot say that everyone looks upon these children with the same adoration that I, along with everyone at the Association, do. I have seen the way many in my family respond to Satyam, who is my cousin, and I justify their reaction as being a result of ignorance. Definitely, many do not understand this illness and the complications that encompass it, and wariness towards people with Down’s Syndrome as a result of ignorance is acceptable. What is unpleasant however, is the way educated people, like doctors, look down upon them and go as far as holding the belief that they would be better off not alive. Mother’s of these children with Down’s Syndrome have told me shocking stories of how people are of the belief that those with such illnesses would be better off not living. Much the same as you me or any other human being, people with Down’s Syndrome have the right to live.
These people are very special human beings and I can say this with the utmost conviction because I have spent time getting to know them As an outsider I understand that people can be wary of those who have Down’s Syndrome, since I, too, had been unsure of what kind of individuals they would be. However, without spending time with them, without making an effort to get to know them and understand them, nobody has the right to judge their existence. I am writing, not with the hope that you will start to feel for these people the way I have learnt to, nor with the hope that you will pity them, for they deserve more than just pity. I write to entreat everybody not to judge them just because you perceive them as being different from you.
By Sanya Thapa