Letter of Hope-International Down Syndrome Day!

Dear Parents,

21st March is World Down Syndrome Day.It is a global awareness day which has been officially observed by the United Nations since 2012. The day is is focused on raising awareness for individuals with Down Syndrome.

In my previous article i have put together a few medical facts of Down syndrome which cannot be changed.This article is about what you can change!It's the future of your child and you.

The most important highlight of Down syndrome is its not a disease,its a syndrome.
They are special babies,different from the typically developing.
DS may attract people because of characteristic features which makes your baby look cute and appealing.

There is an emotional roller coaster ride of doubt, despair and acceptance.From expecting congratulations your baby is healthy and fine to 'the baby is born with Down Syndrome ,there is a bridge of  surprise,sadness to belief for many families.
The diagnosis of DS is many times devastating for many parents however the fact is there a lot of external resources available to help you carve a beautiful future of your child.

I always tell parents of these strong and beautiful babies,Let your child lead by an example.Be an inspiration to many who are not as strong as you to accept and embrace the fact.Your despair will inevitably reflect in your child's development.
Be an armor and a strong wall to protect your child from any sympathy.Rather build a place of inspiration to be a role model for many.

Persons with Down syndrome are slower to learn with delayed development being present but once they get a hang of it, they can be very good at whatever they are doing.

They will be needing interventions like Occupational therapy,physiotherapy and speech therapy with regular follow up with developmental pediatrician.

These therapies will be a facilitator to their milestones and further socio-cognitive development.

Occupational therapy will help child in developing milestones,providing appropriate strategies to groom the child in achieving independence in Activities of Daily living.
As the age of the person increases, an occupational therapist could help identify jobs, careers, or skills that match their interests and strengths.
The multi sensory intervention will further enhance child's cognitive and social development.

Few questions i commonly come across!

 Can kids with Down Syndrome go to school?
 Answer: Yes! Some may require special schools, and others may take special classes, but many are also part of classrooms with other students who don’t have Down syndrome.
With the school authorities and your therapist it can be worked upon as they may need extra time to do their work, but they can learn the same skills as their classmates.

 Do kids with Down syndrome like the same things as other kids?  
Answer: Yes! When you get to know someone with Down syndrome, you will find that they have unique personalities and interests, just like everyone else!  If they want to, they can be on sports teams, make art, play instruments,work on academics and join clubs at school. They want to have fun and make new friends, like all kids do.

Can kids with Down syndrome live a normal life?
 Answer:It's an ambiguous question.Who has defined what is normal.Its subjective and society's perception. They will laugh,feel sad and express themselves like everyone else.Like i said previously they will be unique themselves which should be given due respect and regard than trying to fit them in our definition of normal.

How to handle kids with Down syndrome?
 Answer:Just like the way have handled other kids with a strong mind, little updated knowledge of resources and extra effort.Rest is possible!

Can kids with down syndrome earn a living?
 Answer:Why not,there are countless examples for the same.And so i say lead your child to set an example.There are many organizations providing vocational help support as well as training.

On this day of Awareness,i have tried to put together the available external resources which can be of help and guide to many families.

• http://www.downsyndrome.in “Down Syndrome Federation of India” (DSFI) is an organization that offers support to individuals with Down’s Syndrome and their families through various Down’s Syndrome Institutions across India. DSFI is registered with the Office of the State Commissioner for the Differently Abled, Government of Tamil Nadu under Section 52 of the Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995.
• https://www.ds-int.org/asia-pacific
• https://www.babycenter.in/a557917/downs-syndrome
• http://www.podsindia.org/- this is by parents of down syndrome .Based at Mumbai, India; PODS believes in action. Action to make the society aware, action to ensure these children get an enabling environment, action to ensure they realize their true potential, action to make a difference.
•  /http://www.kshitij-mumbai.org/-Kshitij (meaning “New Horizon” in Sanskrit) is a Mumbai-based NGO that employs adults with intellectual disabilities to create exquisite hand-crafted items and chocolates. 
• https://www.facebook.com/DownSyndromeSupportGroupIndia/-Down syndrome support Group India
•  

Above websites will be a useful guide in Indian context.

Below is a list on international platforms:

• Brighter Tomorrows
  www.brightertomorrows.org
  Brighter Tomorrows is a web-based resource for parents who have received a diagnosis of Down Syndrome either prenatally or at birth. The site provides answers to common questions, educates about Down Syndrome and shares the stories of other parents with similar situations.
• Down Syndrome Pregnancy
  www.downsyndromepregnancy.org
  This site provides information and support to expectant parents preparing for the birth of a baby with Down Syndrome.

• International Mosaic Down Syndrome Association
  www.imdsa.org
  Offers support and resources to families of and individuals with mosaic Down syndrome through the lifespan

• Medline Plus: Health Topics – Down Syndrome
  www.nlm.nih.gov/medlineplus/downsyndrome.html
  An overview and list of resources on Down syndrome and prenatal testing from Medline Plus, a service of the US National Library of Medicine and the National Institutes of Health   
•  
•  The International Down Syndrome coalition
  
• The International Down Syndrome Coalition
  The International Down Syndrome Coalition is dedicated to serving individuals with Down syndrome from conception throughout their lives. IDSC provides support to families who have been given a prenatal diagnosis of Down syndrome. IDSC also provides up-to-date information, resources and support groups for families with Down Syndrome
   
• Down Syndrome Research And Treatment Foundation
  The Down Syndrome Research and Treatment Foundation is dedicated to finding a treatment to improve cognition including learning, memory and speech for individuals with Down syndrome.  Since their founding in 2004 DSRTF has become the leading private source of funding in the United States for Down syndrome cognition research.  The website provides detailed information about the latest down syndrome research and clinical trials as well as information about applying for a research grant from the foundation.
   

• Down Syndrome Family Network

  The Down Syndrome Family Network is a network in which parents or caregivers of persons with Down Syndrome are able to access the resources, support and answers they need to educate and develop the full potential of these individuals throughout their lives.
   

•  Down Syndrome in Arts & Media

  Down Syndrome in Arts & Media provides a casting liaison service for individuals with Down syndrome and other developmental disabilities who want to be actors and models. On Facebook the post Down Syndrome resources and pictures with a focus on art and entertainment.
  
  

  Kids With Down Syndrome

  This Facebook page was started  so families of kids with Down Syndrome could connect and ask questions, share exciting new milestones, post pictures, or just get support

A Few Inspiring stories:Below is the link

https://www.thebetterindia.com/117142/harini-sivakumar-talks-about-raising-a-down-syndrome-child/

https://timesofindia.indiatimes.com/city/mumbai/A-battle-against-Downs-Syndrome/articleshow/463323562.cms

https://edtimes.in/meet-aditi-a-23-yr-old-with-downs-syndrome-who-battled-all-odds-to-open-her-own-eating-joint

https://www.thebetterindia.com/134336/an-art-studio-in-gurugram-called-banana-studio-is-run-by-shaurya-who-has-down-syndrome/

https://www.dnaindia.com/health/report-kids-with-down-s-syndrome-make-great-employees-1522699

https://www.patientsengage.com/personal-voices/persons-down-syndrome-can-should-become-independent

https://www.business-standard.com/article/pti-stories/national-conference-on-down-syndrome-held-118032601009_1.html

https://www.hindustantimes.com/lucknow/kids-with-down-syndrome-can-do-well-if-given-right-exposure/story-CXWl5Onh7DIOKT532bpZwM.html

https://www.hindustantimes.com/patna/down-with-down-syndrome-but-not-out/story-BwwUvY9OjB20K8V7OhmRjK.html

https://www.thehindu.com/features/magazine/My-son-Alan-was-born-with-Downs-Syndrome/article16442874.ece

https://www.thebetterindia.com/31644/living-with-down-syndrome/

• All of the mentioned content is with due courtesy web based information with personal review of the sites.

This is just a drop of the ocean,i have listed a few support groups however there is much more and beyond this.

The world seems dim until we let the light come in.Open your doors to this new exploration,there are a lot of hands to hold you in this journey.

I being an Occupational therapist will always be at your service to guide in best possible way.

To end this article i quote my colleague Dr Sachin Rathod(OT)

Trisomy 21?A defect?
No! Sorry!
A Gene of Eternal Cuteness!

He shares this image of Cafe Arpan at Mumbai, run by the very special people of our society where he volunteers to spend time and provide his expertise.

Pic Courtesy:Sachin Rathod

 -SSW

Adding colors to life

4th February marks a stand as it salutes to the millions of brave hearts fighting a battle with the most dreaded disease.Its world cancer day which deserves to acknowledge the spirit of the survivors,their families and those living with it.
Life is indeed an art ,a canvas we all paint with our experiences ,our attitude and our will to be ourselves.
In conquering our ways we often come across certain lows that hold us back but a few special ones struggle with their health.This not only affects the individual but everyone who is associated to him.I can't put in words to describe the turmoil it brings in life because for once even i have lived such moments and that's exactly why i have deeper understanding of this feel.Being both on doctor's and patients side i have learned life very closely at a very young age and have framed my set of lessons and indeed where there is will there is a way!

Today i am putting up about a very inspiring soul who would have never thought that his smooth career would change its course.Amidst achieving his dreams and setting new ones came the year 2016 when he got diagnosed with medulloblastoma,a type of brain tumour which changed his life perception.A marathon of hospital run ,from surgery to radiation left him not only with certain physical limitations that were seen but also an unseen ones.
This man could have lived questioning  his luck but he carved and built another way to heal himself.He found light in darkness when simple activity like making a straight line seemed challenging he started joining  dots which ultimately forms a line of happiness.
Making n number of dot paintings as medium of his liberation he decided to spread its power.
Hailing from Hyderabad, Mr Anand Reddy contacted a few organizations working with cancer of which the Assistant director of Cancer Survivorship, Indian Cancer Society Mumbai, Dr Vandana ,proactively agreed to his will of conducting an art workshop for brain tumor patients and survivors and i was fortunate to be part of it.So here is glimpse of...

Healing with dots, the Art Workshop was conducted by Mr Anand Reddy supported by Indian Cancer Society.Around 20 participants across different ages along with their caregiver seemed to be enthusiast on a saturday morning of what was coming up next.
An informal introduction was followed by inauguration by Dr Tejpal Gupta, Dr kurkoore and Mrs Savita Goswami.
An amazing display of art work was seen in the presentation of Mr Anand after which a creative blend amongst participants was restored.
Below is the images and what they have to say through my thoughts and of course a note to ponder
.

Event inauguration with motivating speeches of the chief guests and the Assistant Diector of Cancer Survivorship,
Indian Cancer Society.

Only, 
You know your strength & might!
 And,
Doctor's guide but survivors fight!



 Highlights of the events and the activity: 

Once stood in the queue one behind the other are now sharing a space together.

Rehabilitation indeed connects people their hearts and thoughts,their worries and smile.It gives a hope there is a life!

My favorite Smile!

The guy on left who has understood life at a very young age and was prompt in responding to all the positive vibes.
And the guy on right is excited to go back to his state and resume his studies and routine.

Family is always the back!
Be it running for the investigations or sharing tears together,Be it going through the surgery or every week at OPD.
Those continuous radiations to long waits.Chemotherapy to nausea and vomitting.
They are there,for the smiles and tears to share!

   
 And the  zeal to learn was all around the room...

I don't like painting he says...

And when something is done for us,we must attend is what one of the participant said...
Whether you are a patient,survivor or neither you can find time for everything but for self.
However the unstructured activity or a leisure is a must as it rewires the locked thoughts to feel free and adds to the quality of life.

Such group activity not only makes you feel good but also develops your inter personal as well as intra personal relationships.

As you walk ahead you will know there is always a help around.
The ICS Cancer survivors vertical unit.
To right,Mr Sachin,Ugam Member
and Left Ms Shreya ,clinical psycholog

A few more images describing the art play and the enthusiasm amongst our participants and the bonding that developed within few minutes.

And as the workshop was heading further post lunch i could sense a different comfort among everyone in the room.Right from the parents/relatives to the participants each one was engrossed in the ocean of colors.The worries of life seemed to be hidden at the shore and everyone was sailing on the boat of fun.
And that's the play of life.
An idle mind takes away all the energy to live to fullest ,it needs an occupant.
Don;t think is easy to say,but those who prove it deserve a bow.They are the epitome of inspiration.

Everyone achieves something or the other in their life.Some reach the zenith and are known to the world.While for some ,a night's meal is the world.
However special are the ones who loose their world and walk back to relive and form another world.
And survivors are the ones who prove to world 'It is Possible' !

And to end,
All the happy faces....

P.S:Medication saves lives,Rehabilitation makes you live life.A special mention of Mr.Anand Reddy for his courteous thought of sharing his idea/experience of healing and carving a smile on so many faces at once.

 -SSW
Proud occupational therapist.Happiness is seeing them smile.