WORKING WITH CHILDREN WITH DISABILITIES AND THEIR FAMILIES

Working with children with disabilities and their families since 1993.

Anandini works directly with children with Developmental Disabilities, Dyslexia and other Specific Learning Disabilities.

"Developmental Disabilities" is an umbrella term that includes disabilities such as Cerebral Palsy, Intellectual Disability, Autism.

ABOUT CEREBRAL PALSY

Cerebral Palsy is a condition, wherein the part of the individual’s brain that controls motor function- [i.e. controls muscles and body movements] is affected. Besides fine and/or gross motor difficulties, the person may also have associated difficulties such as speech, vision, and hearing.

No two children with cerebral palsy are totally alike as the physical manifestations vary from person to person in the degree and extent of the impairment.

The individual with cerebral palsy faces:

- Movement and posture difficulties;

- Inability to move or maintain balance and coordination required for his/ her daily activity.

- Depending upon the area of the brain that is affect, the manifestations vary- while one person may have gross motor difficulties, another may have fine motor difficulties. The nature and degree of the impairment varies from person to person. Some are able to walk independently, some require supports to walk and some may be unable to walk.

The area of the brain that is affected doesn’t change over time. This means that Cerebral Palsy is a non-progressive condition. However, as the child grows one may see changes that result due to development, maturation and intervention. It is often said that ‘an intelligent mind in a disobedient body’ as most persons with cerebral palsy are cognitively at par with their peers.

ABOUT INTELLECTUAL DISABILITY

A child with Intellectual disability faces limitations both in intellectual functioning (reasoning, learning, problem solving) and in adaptive behaviour, which includes everyday social and practical skills. An IQ score of less than 70 on a standardized test of Intelligence, along with difficulties faced in carrying out daily living activities; understanding and learning concepts of time, money, numbers; picking up literacy skills that are at par with peers their age. In addition, difficulties with communication and other skills necessary for independent living are generally used as criteria for determining whether the person has intellectual disability.

There are times when life forces you to pause and reflect...

Perhaps leaving you with more questions than answers

We go through most of our lives without pausing to think what we are doing. Many of the things that we do during the course of a day go almost unnoticed.

Life offers us so many choices that we go through many of the routine things without even giving a second thought

Meet Rohan. He is 21 years old.

Rohan is a happy person and always greets everyone with a huge smile and a twinkle in his eyes...a look that tells you all is well and life is great.

A young man at the threshold of life you would think??

A closer look at Rohan’s life reveals a different reality.

Rohan is a person with special needs. He has Cerebral Palsy that has left him severely affected in terms of his physical abilities.

Cerebral Palsy is often defined as ‘" an intelligent mind caught in a disobedient body" and no one illustrates this better than Rohan.

Rohan is dependant for all his needs on others.

Rohan is awake but has to wait for his father to come and lift him out of bed and help him with all his needs – toileting, bathing, dressing...then it is time for breakfast. Rohan has to be fed. His hands are affected and movement is restricted -making it near impossible for him to feed himself.

Once out of the safe, secure bounds of his home, Rohan is dependent upon others, who may at times, choose to look the other way.

Look the other way- not because they don’t care...but because they don’t know what to do.

Choices you would say??

How many times have you seen a child with disability ... how many times have we reached out? Paused to smile and say a hello? And how many times have we looked the other way and gone on with our lives??

It is time to stop and think...is there a choice here too??

Care to think...

Is it alright for us to move from shop to shop, within shopping malls, restaurants, parks – walking up and down stairs that we don’t think twice about. Why can’t Rohan and millions like him access these places without their dignity and their personal space being compromised? Do we really think that they are not equal citizens born with similar rights??

I am afraid of your silence because of what it could mean.

Perhaps it means you are getting bored or losing interest or making up your own mind about me without my guidance.

I believe that as long as I keep you talking I can know what you are thinking.

But silence can also mean confidence. And mutual respect. Silence can mean live and let live: the appreciation that I am I and you are you.

This Silence is an affirmation that we are already together - as two people.

Words can mean that I want to make you into a friend and silence can mean that I accept your already being one...

Hugh Prather ‘ Notes to Myself’

Do we take things for granted in life??

Are we grateful for the small things that we do without giving it a second-thought, like picking up a glass of water and drinking from it when thirsty?

What is the big deal with that you may ask?

Care to ask Sara?

Meet Sara. Sara is eighteen, extremely intelligent and full of life.

Sounds like a college going, young girl starting out in life- moving from home to college, singing, dancing, hanging about with friends in a multiplex, a cafe perhaps?

Not really. Sara’s life is slightly different.

Sara is at home all day- in bed to be more precise.

She has muscular dystrophy that has caused her muscles to weaken gradually over time. Starting when she was seven- the muscles of her legs started getting affected. She started falling frequently in school. A medical examination led to a series of tests that gave the condition a name.

Though the doctors were able to give the condition a name, they were unable to advise the family on what to do.

Leaving the hospital with a card that told them that their precious Sara has ‘Muscular Dystrophy’ they were left to their own devices to figure out what next.

In their attempt to protect their child from the frequent falls and an uncertain future, they decided to home-tutor her.

In the early years it wasn’t so difficult. Sara was happy to be home. She went out with her family everywhere.

Gradually walking became an effort and Sara needed to use a wheelchair. She continued to go everywhere- for shopping, watching movies and even visiting her family in different parts of the world.

Now at eighteen, she is confined to her room- confined to bed - to be more precise. Sara requires assistive breathing and feeding, making her dependent on people and machines.

Her day is spent worrying about the future. She finds it difficult to sleep... almost afraid... The fear of an uncertain tomorrow... the fear that closing her eyes tonight, might mean not being able to open them again tomorrow.

Sara too has dreams...

She wants to be a fashion designer. To be able to keep in touch with her cousins through Facebook; She wants to know what is happening in the world. She wants to talk to family and friends.

But for Sara, everything is a struggle at the moment. Due to the machines that regulate and monitor breathing and other vital parameters, communication means ‘lip sync’ thus making her dependent upon someone to interpret for her.

Besides, sleepless nights and tiring days leave her too exhausted to do anything.

Her family rallies around her, brave and smiling.

Giving her the will to fight on...

This is when small, seemingly insignificant, unnoticed things also take on a whole new dimension...