aikya newsletter october

JAGRUTHI AIKYA NEWSLETTER Issue#14

Jagruthi

AIKYA Newsletter

October 2014

From the Director Friends,

The birth of a child is an exciting, life-changing event. A

beautiful new baby comes to your house, family, and

neighborhood. It is a time for celebration. Family members

look at the new child and wonder: Will he be a football

star, will she be a famous musician, will he discover the

cure for cancer, will she become President of the country?

But what happens when this new child has a disability?

What if there are health problems? What if, as time goes

by, it seems as if the child isn't learning and progressing as

quickly or easily as other children?

Well, don’t worry…

In fact, there are many supports available for infants,

toddlers, and preschoolers with disabilities. Services for

very young children, from birth through age two, are

called Early Intervention. Early intervention is an effective

way to help children catch up or address specific

developmental concerns as soon as possible in their lives.

From top left: Reaching for toys, Newborn

assessment, Eye-hand coordination and Walking.

Broadly speaking, early intervention services are

specialized health, educational, and therapeutic services

designed to meet the needs of infants and toddlers, from

birth through age two, who have a developmental delay or

disability, and their families. Services can also be provided

to children who are considered to be at-risk of developing

substantial delays if services are not provided.

Sometimes it is known from the moment a child is born

that early intervention services will be essential in helping

the child grow and develop. Often this is so for children

who are diagnosed at birth with a specific condition or

who experience significant prematurity, very low birth

weight, illness, or surgery soon after being born. Even

before heading home from the hospital, this child’s parents

may be given a referral to their local early intervention

office.

Some children have a relatively routine entry into the

world, but may develop more slowly than others,

experience setbacks, or develop in ways that seem very

different from other children. For these children, a visit

with a developmental pediatrician and a thorough

evaluation may lead to an early intervention referral, as

well. However a child comes to be referred, assessed, and

determined eligible—early intervention services provide

vital support so that children with developmental needs

can thrive and grow.

What areas of child development are Early

Intervention services designed to address?

In a nutshell, early intervention is concerned with all the

basic and brand new skills that babies typically develop

during the first three years of life, such as:

Physical (reaching, rolling, crawling, and walking)

Cognitive (thinking, learning, solving problems)

Communication (talking, listening, understanding)

Social/emotional (playing, feeling secure and

happy); or,

Self-help (eating, dressing)

Children in the age group of 0- 6 years benefit from this

programme and can be admitted in this programme where

apart from the skills basic reading and writing skills can be

imparted.

This issue of Jagruthi is dedicated to Early Identification

and Early Intervention. Hope you would find this

informative. Do write to us if you need more information /

send your feedback.

-Parvathy Viswanath

JAGRUTHI AIKYA NEWSLETTER | Issue #14 2


Early Intervention

Over the past decade, there has been a growing recognition of the educational, social and health needs of young

children at risk or with disabilities. The early experiences of children who are at risk provide the basis for subsequent

learning, growth, and development. These first years of their life are critical to the overall development of children,

including those defined as at risk. Early stimulation is critical to the later development of language, intelligence,

personality, and sense of self-worth.

Early intervention is a term often used in a many ways. For our purposes, early intervention is defined as a wide

range of services which aims at education, health care, and social service for young children who are disabled or at-

risk for developing developmental disabilities and their families. These services are focused on children from birth to

about 3 years of age.

There are four basic factors which support the rationale for providing early intervention services to children at

risk:

The importance of early environmental interactions;

The prevention of secondary disabilities/effects;

The needs of families of children who are disabled or at risk;

The benefits of early intervention to society.

Advocates of early intervention services for children at risk believe that intervention should begin as early as

possible in an environment that is free of traditional categorical labels (e.g., mentally retarded, emotionally disturbed),

particularly if there is any uncertainty about the permanency of the present assessment of the child’s condition.

Carefully selected interventions have the potential to lessen the long-term impact of the disability and counteract any

negative effects of waiting to intervene. The postponement of services may, in fact, undermine a child’s overall

development as well as his or her acquisition of specific skills.

Every year with increase in the technological advancement in the means and ways of combating diseases, the

resulting disabilities have also been increasing. The disabilities have now become more complex due to the

sophisticated level of medical services, increase in the survival rate and highlife expectancy. Many children who would

have died before or after birth due to critical complications are surviving and are now living with some disabling

conditions or multiple disabilities. The medical efforts are always noted to be positive as far as lives of children are

concerned, but unfortunately such children, in most cases, suffer physical or sensory losses. This decrease in mortality

due to improved technology is a major reason for the increased demand for trained early intervention specialists.

Early intervention and prevention pay substantial dividends to children as well as to their families and society at large.

In all likelihood, many children who, in the past, grew up with severe limitations could have developed normally if

appropriate preventive steps had been taken early in their lives. Additionally, in most cases, people with disabilities

are far less disabled if effective interventions have been applied from birth.

The intent of intervention programmes for children at risk is multifaceted. Goals include diminishing the effects of

the disabling condition on the child’s growth and development and preventing, as much as possible, the worsening of

the at-risk condition. Timing is critical in the delivery of the interventions. The maxim “the earlier, the better” is very

true. Moreover, early intervention may be less costly and more effective than providing services later in the

individual’s life. The interventions for infants and young children who are at risk or disabled must be “intensive,

comprehensive, continuous and focused upon the individual needs of each child.”


Intensity refers to the frequency an amount of time an infant or child is engaged in intervention activities. If the

intensity requirement is to be met, the child should participate in intervention activities that involve two to three hours

of contact each day, about four or five times a week.

Comprehensive intervention services are broad in scope and it should include:

Family training, counseling and home visits.

Specific needs based training.

Speech and language training.

Occupational therapy and physical therapy

Psychological testing and counseling

Medical services necessary for diagnostic and evaluation purposes only

Early identification, screening and assessment services.

Health services necessary to enable the child to benefit from other early intervention services.

The most ideal situation will be when newborn babies and infants receive vision/hearing tests as a routine and

then proper follow-up is put in place. The professionals, in early intervention programmes play an important role and

may include physiotherapists, occupational therapists, nurses, speech and language therapists, audiologists, orientation

and mobility instructors, psychologists, social workers an teachers certified in the areas of early childhood special

education, mental retardation, cerebral palsy, visual impairment, hearing loss, deaf, blindness, or multiple disabilities.

An early interventionist is a professional providing direct services to children (birth through 36 months) with

disabilities and their families.

Children who are developmentally delayed or who have cerebral palsy, and those with Down Syndrome have a

higher incidence of refractive errors and other ophthalmological problems than non-disabled peers. Indeed, children

with severe and multiple disabilities are more likely to have a vision impairment or a hearing loss than any other group

of children. They are also likely to require early intervention services to facilitate their learning and development.

Early intervention programmes for children with disabilities focus on teaching skills to improve opportunities and

access within family, school, and neighbourhood environments. These children are prepared as early as possible for

meaningful experiences with same age peers. Additionally, such programmes lessen the impact of conditions that may

worsen or become more severe without timely and adequate treatment and may prevent children from developing

other, secondary disabling conditions.

The early intervention programme helps young children with disabilities in living in and adapting to different

environmental settings, including the home, neighbourhood, and school. Depending on individual needs, programmes

may focus on such content areas as language development, social skills, motor skills and pre-academic instruction. The

young children with disabilities have the right to services and the earlier we begin, more effective they will be in

improving quality of life. Services that involve families are more effective than those which keep parents away. The

intended outcomes of early intervention programmes can be successfully accomplished with consistent family

participation and professional collaboration.

Movie on Early

Intervention

https://www.youtube.com/watch?v=sclFG2i1jD8&authuser=0

Early Intervention at AIKYA

Early Intervention Programme for Infants & Young

Children aims to give infants and young children whose

ages range from 2 months to 4 years and have either

Down syndrome, developmental delay, cerebral palsy or

multiple disabilities, a good head start in helping them

in their development. Depending on the level of the

child, EIPIC aims to help facilitate the development of

gross motor, fine motor, perceptual-cognitive, language,

socialisation and self-help skills.

Due to the diverse needs of the children, the

children are grouped according to their special needs,

level of functioning and potential. All children have an

Individualized Education Plan (IEP) which covers the

six different domains (see below). However, the

emphasis for each child is different. For example, there

is greater emphasis on cognitive skills for the high

functioning children. For those to be referred to Day

Activity Centres and Sheltered Workshops, more focus

is placed on adaptive living and pre-vocational skills.

For the more severely disabled, work on their functional

skills is seen as a priority so that children could be as

independent as possible in the community.

Structured Teaching

Although Autism is a lifelong disability, early

intervention helps children to manage the demands of

daily living. It also provides others with the opportunity

to understand their needs so that they can lead more

independent lives and achieve their full potential. The

structured programme is geared towards the

development of the following skills:

Social interaction

Social communication

Imagination

Behaviour

The focus of the Individualized Education Plan (IEP)

varies from child to child depending on their cognitive

and language skills, behaviour and educational needs. It

ranges from pre-academic and academic for those who

show potential for mainstream schooling to functional

skills such as self-help, dressing, making simple

purchases, travelling on public transport for those who

are later referred to day activity centre. Children are

grouped according to their language/communication,

cognitive and behaviour needs.

Each child has an IEP which comprises the following domains:

Language and Communication skills

Cognitive skills

Social and Emotional Skills

Fine Motor Skills

Gross Motor Skills

Adaptive Daily Living Skills

Socialisation


IF YOU HAVE JUST FOUND OUT THAT YOUR CHILD HAS A

BIRTH DEFECT----- SEEK EARLY INTERVENTION

When your child has a birth defect, early intervention is

usually the best strategy. A team of experts taking into

consideration each child’s unique needs designs early

intervention services. This helps in establishing a program of

treatment. Early intervention services include feeding

support, identification of assistive technology that may help

your child, occupational therapy, physiotherapy and social

work services. In addition to identifying, evaluating, and

treating your child’s needs, Early Intervention Program will:

–Tell you where you can get information about your child’s

disability; –Teach you to care for your child at home; –Help

you make important decisions about your child’s care; –

Provide counseling to you and your family.

Genetic Counseling Newborn Screening


Genetic counseling is the process of

evaluating family history and medical records,

ordering genetic tests, evaluating the results of this

investigation, and helping parents understand and

reach decisions about what to do next.

Genetic tests are done by analyzing small

samples of blood or body tissues. They determine

whether you, your partner, or your baby carry genes

for certain inherited disorders.

Current science indicates that human

chromosomes carry about 30,000 genes. An error in

just one gene (and in some instances, even the

alteration of a single piece of DNA) can sometimes be

the cause for a serious medical condition. For

example, some diseases, such as Huntington’s disease

(a degenerative nerve disease) and Marfan syndrome

(a connective tissue disorder), can be inherited from

one parent.

Most disorders cannot occur unless both the

mother and the father pass along the gene. Some of

these are cystic fibrosis, sickle cell anemia, and Tay-

Sachs disease. Other diseases, such as Down

syndrome, are not inherited. In general they result

from an error (mutation) in the cell division process

during conception or fetal development.

Genetic tests don't yield easy to understand

results. They can reveal the presence, absence, or

malformation of genes or chromosomes. Deciphering

what these complex tests mean is where a genetic

counselor comes in.

Every year an estimated eight million

children – about six percent of total births

worldwide – are born with a serious birth defect

of genetic or partially genetic origin, according

studies.

“six to seven percent of the 130 million or

so children born every year being affected by a

serious birth defect that will either cause a child

to die, or if a child doesn't die, it will place the

child at serious risk of disability,”

Additionally, hundreds of thousands more

are born with serious birth defects of post-

conception origin due to maternal exposure to

environmental agents, such as alcohol, rubella,

and syphilis.

Many reports reveal that at least 3.3

million children less than five years of age die

annually because of serious birth defects, defined

as any serious abnormality of structure or

function. An estimated 3.2 million of those who

survive may be mentally and physically disabled

for life.

Birth defects are a global problem, but

their impact is particularly severe in middle and

low income countries where more than 94

percent of births are with serious defects.

“But about 70 percent of birth defects can

either be prevented, or with treatment we can

significantly reduce the chance of a child

becoming disabled.”

About Newborn Screening

Newborn screening is the practice of testing every newborn for certain harmful or potentially fatal disorders that

aren't otherwise apparent at birth. Many of these are metabolic disorders (often called "inborn errors of metabolism")

that interfere with the body's use of nutrients to maintain healthy tissues and produce energy. Other disorders that

screening can detect include problems with hormones or the blood.

In general, metabolic and other inherited disorders can hinder an infant's normal physical and mental

development in a variety of ways. And parents can pass along the gene for a certain disorder without even knowing that

they're carriers.

With a simple blood test, doctors often can tell whether newborns have certain conditions that could eventually

cause problems. Even though these conditions are considered rare and most babies are given a clean bill of health, early

diagnosis and proper treatment can make the difference between lifelong impairment and healthy development.

Screening Tests

Newborn screening varies by state and is subject to change, especially given advancements in technology.

However, the disorders listed here are the ones typically included in newborn screening programs.

PKU

When this disorder is detected early, feeding an infant a special formula low in phenylalanine can prevent mental

retardation. A low-phenylalanine diet will need to be followed throughout childhood and adolescence and perhaps into

adult life.

This diet cuts out all high-protein foods, so people with PKU often need to take a special artificial formula as a

nutritional substitute. Incidence: 1 in 10,000 to 25,000.

Congenital Hypothyroidism

This is the disorder most commonly identified by routine screening. Affected babies don't have enough thyroid

hormone and so develop retarded growth and brain development. (The thyroid, a gland at the front of the neck, releases

chemical substances that control metabolism and growth.) If the disorder is detected early, a baby can be treated with oral

doses of thyroid hormone to permit normal development. Incidence: 1 in 4,000.

Galactosemia

Babies with galactosemia lack the enzyme that converts galactose (one of two sugars found in lactose) into

glucose, a sugar the body is able to use. As a result, milk (including breast milk) and other dairy products must be

eliminated from the diet. Otherwise, galactose can build up in the system and damage the body's cells and organs, leading

to blindness, severe mental retardation, growth deficiency, and even death. Incidence: 1 in 60,000 to 80,000. Several less

severe forms of galactosemia that may be detected by newborn screening may not require any intervention.

Hearing Screening

Most but not all states require newborns' hearing to be screened before they're discharged from the hospital. If

your baby isn't examined then, be sure that he or she does get screened within the first 3 weeks of life. Kids develop

critical speaking and language skills in their first few years. A hearing loss that's caught early can be treated to help

prevent interference with that development.


JAGRUTHI AIKYA NEWSLETTER | Issue #14

Should I Request Additional Tests?

If you answer "yes" to any of these questions, talk to your doctor and perhaps a genetic counselor about additional tests:

Do you have a family history of an inherited disorder?

Have you previously given birth to a child who's affected by a disorder?

Did an infant in your family die because of a suspected metabolic disorder?

Do you have another reason to believe that your child may be at risk for a certain condition?

How Newborn Screening Is Performed

In the first 2 or 3 days of life, your baby's heel will be pricked to obtain a small blood sample for testing. Most

states have a state or regional laboratory perform the analyses, although some use a private lab.

It's generally recommended that the sample be taken after the first 24 hours of life. Some tests, such as the one for

PKU, may not be as sensitive if they're done too soon after birth.

However, because mothers and newborns are often discharged within a day, some babies may be tested within the

first 24 hours. If this happens, the AAP recommends that a repeat sample be taken no more than 1 to 2 weeks later. It's

especially important that the PKU screening test be run again for accurate results. Some states routinely do two tests on

all infants.

Getting the Results

Different labs have different procedures for notifying families and pediatricians of the results. Some may send the

results to the hospital where your child was born and not directly to your child's doctor, which may mean a delay in

getting the results to you.

And although some states have a system that allows doctors to access the results via phone or computer, others

may not. Ask your doctor how you'll get the results and when you should expect them.

If a test result comes back abnormal, try not to panic. This does not necessarily mean that your child has the

disorder in question. A screening test is not the same as diagnostic test. The initial screening provides only preliminary

information that must be followed up with more specific diagnostic testing.

If testing confirms that your child does have a disorder, your child's doctor may refer you to a specialist for further

evaluation and treatment. Keep in mind that dietary restrictions and supplements, along with proper medical supervision,

can often prevent most of the serious physical and mental problems that were associated with metabolic disorders in the

past.

You also may wonder whether the disorder can be passed on to any future children. You'll want to discuss this

with your doctor and perhaps a genetic counselor. Also, if you have other children who weren't screened for the disorder,

consider having testing done. Again, speak with your doctor.



New born screening with Mediscan

Newborn Screening for Early Detection of Hearing Loss


This project was undertaken to study the newborns in corporation maternity hospitals in Chennai aiming to

do as an ongoing project forever with Lions Club International District 324 A5 and MERF Institute of Speech and

Hearing and Corporation Maternity Hospital at Saidapet.

There are some high risk factors which may cause hearing impairment in new born babies. A Proforma

highlighting these factors will be administered to the parents and the babies identified to have any one or more of the

factors will be taken for neonatal hearing screening. An objective test procedure with the instrument called Oto-

Acoustic Emission (OAE) will be carried out. The outcome of the procedure will be that the baby either passes or fails.

Those babies who fail in this procedure will be subjected for detailed objective and behavioral test procedures at the

MERF Institute of Speech and Hearing. The final diagnosis will be arrived at even before 3 months of age.

By the age of three months necessary intervention program can be started to help the child to hear, listen and

develop speech and language at the appropriate age. We are hereby trying to do secondary and tertiary prevention of

handicap in those who have hearing impairment. The high risk babies for developmental disabilities are screened and

intervened by AIKYA special school. This project aims to prevent liability to our country, and create productive

citizens to our nation.

AIKYA in collaboration with Mediscan launched Newborn Screening. Lion's clubs

collaborated in creation of awareness on Newborn Screening in colleges and corporates.

Feedbacks So Far…


On Feb Issue

Really great Madam

K.B. Raju

Your Aikya news letter is well designed and looks very much professional and the fonts used have good clarity. With your keen interest, knowledge and dedication the contents are apt and nicely written Congrats again Rgds Ln Bala

On April Issue

Thanks for the April (Issue #11) newsletter. It made an

interesting reading and made me wonder how it could

be shared with other potential donors. Do you have an

archive and an URL for this and the earlier issues at

your web site?

Bala Subramanian

Thanks for the wonderful edition.

Its really great.

Wishing you all the best and stay blessed.

Regards,

Rakesh Jain

“Child is the father of man" so goes an adage. It is of course an age old belief and an indisputable truth that children are messengers of god. Our family members do personally experience and bask in the unalloyed and unadulterated happiness that our son Bobby provides us.

I am proud to share with you that Bobby, our special child has blossomed into a very enterprising adult. This would not have been possible but for the early intervention that he received from Aikya. He has grown along with Aikya. This renowned Institution selflessly championing the cause of the differently abled for 25 long years continues to patronise our son-because Bobby is now a TEACHER in his very own school-Aikya. The stupendous growth of Aikya reflects the stupendous growth of its students. Our sincere wishes to Mrs Parvathi Vishwanth Director of Aikya and her dedicated team of teachers to grow from strength to strength.

Padma, Parent

I am amazed to go thro' your Aikya

25th anniversary issue. You have done a great service

to the community. Hats off to you.

Kindly send me the following For publication in our

LCPS E Bulletin

Ln Bala

On June Issue

Received your mail and found the JAGRUTHI AIKYA

NEWSLETTER for the month of June 2014. Simply

superb. The content and the materials are so good and

every parent has to read.

Your saying is most impressive.

Every single day is an exercise in patience (or lack

thereof) and forgiveness (you trying to forgive yourself

for lack of patience!).

Keep the good work. It is you only can perform

excellently.

With warm regards

Raja Venkatesh

Congrats and keep it up Rgds Ln Bala

On August Issue I have gone thro' your Aikya - Aug issue Ref page -4 Learning disabilities - a quick glance - one ager Is a good material for repeating in our LCPS E Bulletin- Can I publish the same with your name ?

LN Bala, Editor

Jagruthi

Do you want to volunteer with AIKYA?

Please call 9444960643 or mail to [email protected]

Where are we located?

2/9, Karpagambal Nagar Main Road, Luz, Mylapore, Chennai - 600 004.

Mobile: 9444960643.

Support us:

Volunteer / Donate / adopt a project / adopt a child

Visit our Website: www.aikya.org

Donate: http://www.AIKYA.org/payment.asp

Connect with us:


AIKYA foundation

conducts eye

screening programs

through its vision

centre throughout

the year…

What's Happening at AIKYA?

Integrated value education programme for children started.

Short term course on Special Education from October–

December. For details contact 9444960643.

Jagruthi

For special children

For other school

children

Sketches by AIKYA kids for Ganesh Chathurthi

mailto:[email protected]

http://www.aikya.org/

http://www.aikya.org/payment.asp

https://www.facebook.com/AIKYAcentre

https://twitter.com/AIKYACentre

http://aikyas.blogspot.in/

aikya newsletter october

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