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, dont 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 childs 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 eligibleearly 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



JAGRUTHI AIKYA NEWSLETTER | Issue #14 3


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 childs 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 childs 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 childs 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
individuals 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.

JAGRUTHI AIKYA NEWSLETTER | Issue #14 4



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

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

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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 childs 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 childs needs, Early Intervention Program will:
Tell you where you can get information about your childs
disability; Teach you to care for your child at home; Help
you make important decisions about your childs care;
Provide counseling to you and your family.


Genetic Counseling Newborn Screening







JAGRUTHI AIKYA NEWSLETTER | Issue #14 6


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 Huntingtons 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.
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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.

JAGRUTHI AIKYA NEWSLETTER | Issue #14 8


JAGRUTHI AIKYA NEWSLETTER | Issue #14 8

New born screening with Mediscan








Newborn Screening for Early Detection of Hearing Loss










JAGRUTHI AIKYA NEWSLETTER | Issue #14 9




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




































JAGRUTHI AIKYA NEWSLETTER | Issue #14 10


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 AIKYAfoundation1989@gmail.com
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:
JAGRUTHI AIKYA NEWSLETTER | Issue #14 11



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