Education Malaysia Project #11371

Educating young blind children for a better future

by St. Nicholas' Home, Penang

Project Report | May 9, 2014
Mirza's Story

By Jayita Sen | Resource Development Officer 3

Early intervention is a process, whereby babies and young children with visual impairment (both totally blind and low vision children who face considerable risk developmentally, are given help and support in learning skills, thus helping them to develop in the areas of psychomotor, cognitive and social to the most optimum level possible. Early intervention extends support and counseling to parents of children with visual impairments to help them cope with the trauma, emotions and challenges of caring for their children.

The Early Intervention Program is a home-based program whereby our full-time coordinators, makes frequent visits to the homes to give advice, support and help parents with strategies and approaches on how to raise their child with visual impairment. An interdisciplinary approach is adopted whereby the assistance of ophthalmologists, optometrists, social workers and other health care workers from various agencies and ministries are sought in the coordination of early intervention services to the family.

An Individualized Training Plan (IEP) is drawn up to meet the individual needs of every child every 6 months based on assessment profiles and priority goals of the parents.

In one of the visits, our team found out about Mirza. The child was born on 01/01/08 and was detected with “Retinopathy of Prematurity”. In layman’s terms, it is a disease that affects immature vasculature in the eyes of premature babies. It can be mild with no visual defects, or it may become aggressive with new blood vessel formation (neovascularization) and progress to retinal detachment and blindness. He was completely blind and our team took charge of him since 26/02/09.

The little one was the youngest of his five siblings. The parents were not equipped to deal with his incapacity . The task of the EIP was to make the child improve in basic skills of living . The milestones which are easy for a normal child is a humungous task for the impaired and often the parents are incapable of understanding it.

Since then Mirza has been under the constant supervision and training and is expected to go out of the EIP programme and step up to the next level by end of 2014. Apart from being blind , he is affected with cerebral palsy . He has inability to stand on his own and all his cognitive skills are delayed. Soft diet is what he is able to have.

Continuous effort of the team has enabled him to reach milestones though in delay. He is now able to walk with help. His cognitive skills have improved from 12% to 69% . He is able to chew his food and grasp as well . He makes significant movements and is able to be happy in his surroundings . He recognizes his parents and also makes a sound for calling the mother as “ mamam” .

Mirza has shown great improvement and has graduated now to primary school at the age of 5. He is in the process of learning alphabets as well and is showing skills to lead a more independent life then what he was deemed for. His physiotherapy sessions are now being done by Program Pemulihan Dalam Komuniti (PDK) which is the “Community-Based Rehabilitation" (CBR).

Although Mirza may not be able to lead a perfectly normal life because of his multiple disabilities, yet with early intervention to tackle his disability, we are sure he would have much better compatibility with his surroundings. Most encouraging is the fact that his household is now equipped to deal with him with grace and accept him as a member with special needs.

Mirza would cease to be in EIP this year end and hopefully would graduate to the next level. We hope and pray for his success to cope well.

We at St Nicholas Home are very proud of Mirza’s good progress and with donations received through Global Giving; we can continue to help Mirza and other children in the programme towards improving their lives for a bigger and brighter future! Therefore, we would like to thank all our contributors for your support and donations.

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Feb 17, 2014
Finding Hope for the Future

By Sharmilla Mohan | Resource Development Officer 2

Farah is a 6 year old girl who lives with her parents. She is the eldest and the only child. She was diagnosed with Hypoxic Ischaemic Enephalopathy and cerebral palsy. She is slow and delayed in her development.

When she was first attended to in April 2009, she was only able to lie down and not able to react to any form of stimulation. Her parents were depressed and worried about her future and were not sure what to do.

After being in the Early Intervention Programme (EIP), she is now able to eat soft food and drink milk given to her in the bottle. She can move her neck and respond by making a sound when she cries and is able to recognize her parents’ voices. She cannot do much as she is still an infant and is just learning to sit up and move about.

Farah is trained in six different skill sets which are cognitive, language, social, motor skills, gross motor and daily living. One of the annual goals set for her for the year 2013 is to be able to explore new objects with both hands systematically. After being trained a few times, she is now able to shake toys attached with strings or bells.

She is also now alert to a wide range of auditory stimulation. She repeats the sounds that she hears such as the teachers’ voice, bell ringing sound and drum sound. She also responds to signals through gestures such as waving hand and clapping. In terms of motor skills, she is able to turn her head and her eyes are able to follow the lights. Also, she can feel and explore objects with her hands and mouth.

Now, her parents are all out to look into her needs. Her mother often stimulates her by talking to her and telling her what is happening around the house. They are committed to do everything possible so that she can lead an independent life in future.

One major objective of the Early Intervention Program is to educate children like Farah to adapt to a normal school environment. The teachers of the EIP work closely together with the children and their parents in order to develop their cognitive skills in functional academic skills such as paying attention, reading and writing braille, memory and participation skills. The Early Intervention Program has enabled Farah to lead a more independent life on the long term.

Your donations and generous contributions are the reasons that our children could blossom and build up their self-confidence. These kids are learning new skills in a safe and caring environment which is helping them to create a better future. We hope that you will continue to share your compassion for them. You can help us to continue planting the seeds of success and make a difference in the lives of these special children.

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Nov 15, 2013
Not Longer Just a Hope

By Jayita Sen | Resource Development Officer 3

Being born blind is perhaps the worst dreaded disability, an able world can think of. A life without light, is in askance of pity always and that is what, one thinks. Dignity takes a back step. Surviving is more important. The horror of a dark world is numbing to one who has experienced light. The predicament for an individual who is born blind is much larger, as one is not even aware what it is to “see”. It is survival, amongst those who see, that takes a toll and the fight is a life long.

Siti is one such child. Born with multiple disabilities and blindness she was a bundle of inactive life, till the age of 8. Born to an unwed mother, and abandoned in the care of an old and poor grandfather, she was growing up in penury lacking basic survival needs of independence.

She was born without eye balls and multiple clefts on the lower jaw. Nostrils were not properly formed and hence respiration was her problem. Her intake of air was only through mouth and lack of oxygen proper reaching the brain resulted in her stunted growth, both physically and mentally. She was lagging in her milestones immensely and today at almost 12 she is of a size of a 7 year old and mental ability according.

Yet Siti is the brightest star at the Home. She reiterates the fact that, all the world is made of faith and trust and pixie dust. When she was brought to the home, she was only eight and with a physical and mental growth of only a toddler. Helpless, introvert, totally unaware of surroundings, unable to communicate and walk, she was a life with no hope.

Abject penury, undernourishment had worsened her growth levels. Imperfect speech made her introvert as she was unable to communicate well. However she was blessed with perfect hearing and agile mentally to learn. Non conducive living conditions at her home had made her an unhappy, introvert, scared and shelled. She lacked toilet training, eating norms and many other basics which one actually learns as a way of life.

It was here at St. Nicholas that she got her proper home. Her vegetable, pitiable conditions had to end and the home took full charge of making her independent and worthy of living a life of self dependency.

Dedicated efforts from the teachers, house mothers and medical attention slowly made impact on Siti and she was able to mobilize her self towards facing life. She was slowly able to stand, move and now ably walks around the home without even an aide assisting. She pushes the wheel chairs of other immobilized friends guided by her teachers. A sightless angel, she lights up each corridoor, each path she crosses. Patience of her teachers have made her learn to do her own basic chores independently, She is able to take a bath, wash her plate, eat on her own. She also goes to her classrooms to learn tasks of ability. Identifying a known touch is her forte and she never misses to gurgle a sound of acknowledgment or passing on a hug.

Her deformity of face is her current problem as the low oxygen levels cause her delayed growth. The home has been succesful in getting her case well attended by medical team and Siti has undergone her first facial reconstruction earlier this month. Her lip cleft has been sealed and she has recovered well.

Our sincere thanks to you for providing a better future for the young blind and multi-handicapped children. You’re a lifesaver. Your contributions will continue to help many other children like Siti to lead a secured and better life regardless of their disabilities.

We at St Nicholas Home are very proud of Siti’s good progress and with donations received through GlobalGiving; we can continue to help Siti and other children in the programme towards improving their lives for a bigger and brighter future! Therefore, we would like to thank all our contributors for your support and donations.

Links:

St. Nicholas' Home website

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