RESOURCES

1. CHILD DEVELOPMENT

1.1 WHAT EVERY MOTHER SHOULD KNOW

Was my baby healthy at birth?

“Dear Mom, you brought me into this new land, don’t you want to know how I’m feeling?” this is what the newborn baby seems to be saying imploringly. Sure, the new mother should be abreast of her baby’s condition:

• What’s his birth weight?

• Is he premature?

• Did he cry after birth?

• Is he feeding properly?

• Is he sick?

• Does he have any abnormality?

• Does he need any special treatment?

During the baby’s stay in the hospital it is preferred that the mother be constantly involved in the baby care. This early mother-child bonding is the 1st step of early intervention to support normal development.

Is my child developing normally?

This is a question that comes to every mother’s mind as she fondly cradles her baby. But unfortunately, very few have a clear concept of the developmental milestones and we professionals fail to provide the required information to them. In an attempt to make up for this shortfall, I put forth here a simple list of achievements of your little master, for you mothers to go through:

At three months of age, most babies:

• turn their heads toward bright colors and lights

• move both eyes in the same direction together

• respond to their mother's voice

• make cooing sounds

• bring their hands together

• wiggle and kick with arms and legs

• lift head when on stomach

• become quiet in response to sound, especially to speech

• smile

At six months of age, most babies:

• follow moving objects with their eyes

• turn toward the source of normal sound

• reach for objects and pick them up

• switch toys from one hand to the other

• play with their toes

• recognize familiar faces

• imitate speech sounds

• respond to soft sounds, especially talking

• roll over

At 12 months of age, most babies:

• get to a sitting position

• pull to a standing position

• stand briefly without support

• crawl

• imitate adults using a cup or telephone

• play peek-a-boo and pat-a-cake

• retrieves a hidden toy

• wave bye-bye

• put objects in a container

• say at least one word

• make "ma-ma" or "da-da" sounds

At 18 months of age, most children:

• like to push and pull objects

• say at least six words

• follow simple directions ("Bring the ball")

• pull off shoes, socks and mittens

• can point to a picture that you name in a book

• feed themselves

• make marks on paper with crayons

• walk without help

• point, make sounds, or try to use words to ask for things

• say "no," shake their head, or push away things they don't want

At two years of age, most children:

• use two-to-three-word sentences

• say about 50 words

• recognize familiar pictures

• kick a ball forward

• feed themselves with a spoon

• demand a lot of your attention

• turn two or three pages together

• like to imitate their parent

• identify hair, eyes, ears, and nose by pointing

• build a tower of four blocks

• show affection

At three years of age, most children:

• throw a ball overhand

• ride a tricycle

• put on their shoes

• open the door

• turn one page at a time

• play with other children for a few minutes

• repeat common rhymes

• use three-to-five-word sentences

• name at least one color correctly

Of all these, 4 achievements must be noted:

• Social smile by 2 months • Head holding by 4 months • Sitting alone by 8 months • Standing alone by 12 months

1.2 WHAT IS DEVELOPMENTAL DELAY?

A developmental delay is any significant lag in a child's physical, cognitive, behavioral, emotional, or social development, in comparison with the normal.

A baby's rate of development is determined partly before birth, primarily as a result of genetic make-up and partly due to various physical insults during and just after delivery. Normal development is again quite flexible, occurring over a range of time. Definite deviation beyond that range in any sector of development is developmental delay. When a child consistently reaches developmental milestones much later than other children, a professional consultation is usually warranted. Few babies develop at a uniform rate; most develop quickly in some areas and slower in others. Some babies reach most or all developmental milestones slightly later than "average." As long as a child's development falls within the broad range that is considered normal, reaching one or more milestones late is generally not a cause for concern. Several developmental areas are of interest: gross motor skills (e.g., crawling, walking), fine motor skills (e.g., grasping and manipulating objects), receptive (understanding) and expressive (speaking) language, self-help (e.g., feeding, dressing), and social and play skills. While it is important to consider each of these areas, some are more important predictors of developmental difficulties than others.

Gross motor skills tend to be of particular importance to parents. They are readily observable and easy to compare from one child to the next. The timing of concrete achievements such as first steps is usually easy for any parent to pinpoint. But a particular achievement such as early walking bears little relationship to later intelligence. Communication and social skills are generally more important in understanding a child's developmental progress.

During the first half of the first year, baby's communication skills are largely nonverbal. Smiling, making eye contact and turning in the direction of a familiar voice, are all signs that baby is connecting with and relating to his social environment. Later in the first year, babbling begins and words may start to appear. In most cases, baby's vocabulary will continue to grow by leaps and bounds as he moves through the second year. Again, however, it is the ability to use language to communicate and relate to the social world that is most important. A child who has a limited speaking vocabulary late into the second year, but is able to communicate needs through gestures, point to named objects in books, and follow simple directions, is most likely not exhibiting significant developmental delay.

The nature of a child's play also provides important information about intellectual development. Very young children tend to play alongside, rather than with, other children. Early play consists largely of using body and senses to interact with the environment. During the toddler years there is a move toward pretend play and increasingly interactive play with other children. Flexibility and creativity become more evident as a child begins to engage in symbolic play (e.g., using a block to represent a car) and role-playing (e.g., "I'll be the mommy and you be the baby"). Steady progression toward more social and complex play suggests that development in this area is on track.

Some red flag warning signs that a child's development may not be on track include:

Upto 2 years:

• Little interest in surroundings and caregivers

• Absence or minimal eye-contact or smiling

• Lack of responsiveness to sound

• Absence of babbling by end of first year

• Failure to walk by 15 months of age

• Failure to use hands to manipulate and explore objects.

Toddlers (2-3 years):

• Little interest in other children

• Limited use of words or gestures to communicate needs

• Repetitive non-communicative or parrot-like speech

• Very repetitive, non-purposeful play (e.g., focuses only on parts of objects such a wheels, knobs; obsessively turns pages of book without attending to or recognizing content).

Pre-schoolers (3-5 years):

• Speech that is very difficult to understand

• Little or no pretend or imaginary play

• Little interest in social interaction

• Difficulties with balance, running

• Difficulty using crayons or scissors, manipulating small objects.

What are the different developmental disabilities (NDD)?

At least 8 percent of all children from birth to six years have developmental problems and delays in one or more areas of development. Some have global delays, which means they lag in all developmental areas. Common neuro developmental disabilities (NDD) include:

• Cerebral Palsy

• Mental Retardation

• Speech and language disorders

• Attention Deficit Hyperkinetic Disorder (ADHD)

• Autism

• Learning disabilities

• Visual and hearing defects

Where do I go to?

Consult your Pediatrician immediately. Remember to get an Eye and Hearing test done. You will be referred to a Child Developmental Clinic for Early Intervention Therapy through a team approach.

1.3 wHAT IS EARLY INTERVENTION?

Early intervention starts right from the baby’s stay at the NICU. The environment is rendered developmentally supportive through the following:

• Optimizing lights in the Nursery & mimicking diurnal variation

• Reduce noise to minimum

• Use of soft music

• Club painful procedures & interventions

• Non nutritive sucking

• Tactile stimulation through soft stroking and caressing.

• Kangaroo mother care

Later, early intervention is continued through the provision of :

• Stimulation in all sectors of development

• Stimulate the child through the normal developmental channel and help him to achieve the next milestone every time.

• Passive exercises to prevent stiffness

• Parents are encouraged to constantly provide appropriate stimulation.

• Counsel the parents.

Assess the parenting skills and provide necessary education.

What can I expect?

Early Intervention is neither a single dose therapy nor a magic medicine. We do not expect miracles that the child will be absolutely normal, coming 1st in class or winning an obstacle race. But we help him to win his own obstacle race. Through EIP the child gradually achieves the best of his potentiality. He is taught to perform to the best of his ability to survive independently in society. His strong points are brought into focus, through which his life is made purposeful.

And again, in some, much is achieved beyond expectation, bordering on a miracle! The take home message is “Be patient and sincere, you will be rewarded.”

1.4 HOW IMPORTANT IS EARLY INTERVENTION?

We often refer to a person as a ‘complete man’. Have you ever wondered what we exactly meant by ‘complete’? We all seem to be complete; nobody has seen a half-man after all! But no, completeness encompasses many a parameters & dimensions.
A baby grows from a neonate to a toddler, and then through the stages of childhood and adolescence, gradually evolves into an adult. All the while he grows in length, breadth and weight; his sensory perception, cognitive ability & intelligence develop so that he gradually gains control over his own self, then over his surrounding environment. The better control he has over himself, the more poised his personality becomes. The extent and magnitude of his control over his environment determines his level of success. This constant evolution starts from the moment of conception of life. It occurs in different dimensions: physical, mental, intellectual, emotional and spiritual. Evolution to the fullest in all these dimensions ultimately produces a complete personality.
We, the care-givers of small babies, visualize this evolution when we think of his growth & development. Any deficit, any deviation at any point will curb the blooming process. A thousand and one deficits may be silently residing in the baby’s system, which, if not identified in time, will manifest as a hindered development in later days. For example, a child who doesn’t learn to smile in time may not learn to interact and play like other children and he may develop mental retardation later on. Similarly, a baby who is late in holding his head may be late in all limb activities like sitting, standing, walking, etc. So all who care for babies and children must know the markers of normal development and must learn to pick up deviations EARLY.
How does this early detection help? Any inherent deficit in a developing child can be supported and the process of development in that area enhanced through early intervention. It’s like offering a hand to a person unable to climb a high step. He can make it with your help and the next time he has the confidence to try it himself.
What exactly is early intervention? It is a comprehensive process, by means of which stimulation is given to the child in areas where his development is faltering, thus guides him through the normal developmental channel. Through these techniques the affected brain parts are stimulated to become more active. But how can a dead cell in the brain become alive and active? It has been proved that though brain cells do not regenerate, synapses (connections between cells) are regenerable and with early stimulation healthy brain cells, through new synapses, take up the job of the damaged cells. Thus brain activity can be made to improve. This plasticity of the brain is made use of in early intervention techniques.
Who does this early intervention? As different aspects of brain function, like gross motor (sitting, walking etc), fine motor ( picking up things, handling etc), cognitive (understanding, imagination etc), language, learning etc may need to be assessed and supported, this process calls for a very well co-ordinated team approach. The team comprises of a developmental Pediatrician, Ophthalmologist, Psychiatrist, Physiotherapist, occupational therapist, developmental psychologist, speech therapist, special educator and counselor. Whatever these specialists have to offer need to be conveyed regularly to the child, and, who else, but the mother, will happily render this effort 24 X 7? So she remains the pivot of the early Intervention program. It is thus obligatory for her to be well informed and convinced about the whole approach, to get the best benefits for her child. This is a long process and calls for a lot of perseverance and patience to reap the ultimate reward.
So, mothers (& fathers as well), get informed about your child’s normal development and danger signs to be identified. Next time we will talk about these issues.

1.5 AN OPEN LETTER

It is such a pleasure to see you all so happy with your children. As I close my eyes I see children of all ages, from newborns to teenagers, clinging to their parents, sometimes happy & merry, sometimes sad and crying, some healthy, some sick, some content and pleasant, some irritable and cranky. But one thing is common in all the parents-- their eagerness to help their children. Every parent has numerous questions to ask pertaining to better child care. As a paediatrician I have been responding to these questions for long many years. But now when I look back I feel, much has remained unspoken and unexplained. So in this open letter I will try to address the parental queries that I can recollect.

Newborn -2 months

Let’s start with the young mother with her newborn baby, who is ready to give all for her baby but just doesn’t know what is best. Dear Mom, don’t waste time, start breast feeding as soon as possible and feed her as frequently as she wants, holding her close. The best gift you can give her is your milk and your lap. This will provide not only nutrition and warmth, but also sense of security and gratification.

As the baby grows in your lap, look into her eyes, smile at her and talk with her. Very soon she will start to recognise you and reciprocate with her own cues. This is the beginning of social interaction. Whenever the little baby cries to express any need, respond immediately. This pacifies the baby and gives her a sense of control over her environment. She learns the meaning and impact of her own cry. This is her first exposure to the cause and effect phenomenon. We must remember that the newborn baby can see, hear and feel too, just like us adults; they are not inert! They can also express their feelings and needs with their cry, their gestures and body movement. It is for us to honour their senses and pay attention to their cues...and the mother is the best at it. Strong or flickering lights, loud noise, harsh touch, hot or cold temperature...all these irritate a baby, whereas he/she is soothed by soft music, soft light and soft, warm touch. This is why the little one is so peaceful and comfortable when mama holds him in her arms, humming a lullaby.

Even a newborn can see and they preferentially focus on human faces. So you will notice that in a few days the baby is looking at your face as you feed him. Look back with a wide, warm smile. Here, we must remember, during the first six weeks of life the baby is much like a demanding, grumpy old man, either feeding, sleeping or showing discontent. He will need frequent feeds and a lot of sleep but doesn’t seem to pay heed to your smiles. Don’t lose heart, your efforts aren’t lost. He feels the comfort of your lap and warmth of your smile and is developing an attachment, though still unable to express happiness.

Come 6 weeks and he will start showing responses. As you look into his eyes, he will stare back and gradually a smile will appear anytime between now and 2 months. This ‘social smile’ implies that he is beginning to understand human behaviour and can win your attention with his smile. This is the beginning of his communication skills. Your consistent and animated response will boost his confidence and self control. He will learn that his feelings are important and he can affect his environment. A lot of things you see the baby do during these early days may seem unnatural and problematic. He may want to feed almost every few minutes, he may pass watery stool with yellowish granules upto 8-10 times a day, or, not pass stool at all for a week, there may be peeling of skin all over, big blue patches on his back, a baby girl may have bloody discharge from her vagina, there may be a blister on the upper lip or maybe a tooth or two...these are all normal variants. Do not panic, but consult your doctor to make sure. Enjoy nurturing God’s special gift for you....and if, in the process, you have any questions for me, mail me at udbhaas@gmail.com I will be back for the baby turning 3 months.

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1.6 Calling all parents again

Talking with parents: Is the baby now 3 months old now? Then this letter is for you!

The newborn has now grown into a ‘smiley’ 3 month old infant. He is now learning to turn over, hold his head up, look around, search his mother’s face, cry when hungry or uncomfortable, and then smile meaningfully. He looks at dangling colorful toys, tries to reach out and finally grasps it at around 4 months. Now he can laugh aloud with pleasure! Infants at this age also begin to explore their own bodies and a sense of self emerges. How does that happen? Let’s try to explain with an example. The little infant wiggles his hands in-front of his face and also touches a dangling toy. Each time he can see his fingers moving and realizes they are fully under his control, he realizes that they are his own. Those hands will touch the toy whenever he wants it to. On the other-hand, when he cries, most often he sees the known smiling face (mom’s face), but not ALWAYS. So that is not his self. In this way slowly the ‘self’ versus ‘non-self’ concept evolves in the little one’s brain.

Four-month-old infants seem to be “hatching” socially, as he starts taking more interest in the outer world. During feeding, infants no longer focus exclusively on the mother but become distracted.

In another few months he can sit up and crawl. He notices small objects, tries to pick them with a ‘pincer’ grasp with 2 fingers and put it in his mouth. By now, he is making a lot of sounds and trying to communicate with those around. He loves to play with whatever is around by holding, dropping, poking and mouthing whatever he can lay his hands on.

His attachment for his parents becomes intense and the preference is also very clear by 4- 5 months. The primary emotions of anger, joy, interest, fear, disgust, and surprise appear in appropriate contexts as distinct facial expressions by 4-6 months.

As he progresses along the development ladder, he is always banking on new stimulation and responses. Each new endeavor is backed by a cause and effect analysis in the little brain. So, an enriched environment ensures growth while stressful experiences can impede proper blooming. As a parent we need to pick up the little one’s cues and respond appropriately and consistently. Inconsistence in the parent’s behavior will confuse the child.

Babies develop attachment right from birth to the primary care-giver, most often the mother. Her touch, her smell, her voice and her face evokes a special response in the newborn baby and he responds by looking into her eyes as she feeds him, or by calming down when held and caressed by her. This attachment increases as the baby grows and the love and care is reciprocated by the parents. This reciprocation generates stability in the baby. Parents who are emotionally available, sensitive, perceptive, and effective at meeting the needs of their infant throughout the early months of life are likely to have securely attached infants. Parents who are affectionate and responsive to the child’s physical and emotional needs, who provide adequate stimulation, carry a positive attitude, and give adequate emotional support see their babies grow into stable and sociable individuals. Children’s secure attachment to caregivers also is associated at a later age with more effective coping with stress and better performance at school.

During these early months, just as the baby is developing an attachment, the parents are also getting to understand their baby and his needs. It is a two way bonding, each strengthening the other. By 3 months of age, the child and parents achieve a synchronized reciprocation through vocal and affective exchanges. A happy, smiling interactive parent evokes smiling, cooing, and playfulness in the infant. This is the seed laid down for effective social reciprocation in later life. Good attachment with parents provides a secure base, which allows infants to explore their world with confidence.

This little infant has begun to bloom and is just learning to explore her immediate environment. Her tiny grip on your finger, her winning smile, and her squeals will win your heart. What does this little angel want from you? Your active presence and your milk. So, go ahead with breast feeding on the baby’s demand and play with her, enjoy her company. She now has a definite bonding with you and enjoys every smile, every caress every glance you give her. The more active stimulation she gets in the form of handling, caressing, feeding, smiling, laughing and singing, the more responsive she will be. And it is so much fun to see her do something new almost every other day!

The baby, by now can express his basic emotions, as we have discussed earlier. He also seeks reciprocation of his expressions. The infant makes face-to-face behavioral expressions, which reveal his ability to share emotional states, the first step in the development of communication. If the parent does not respond, he tries to draw her attention and engage her and cries angrily if he fails to evoke the required attention. If this lack of response perpetuates, infants gradually make lesser efforts to re-engage. Rather than anger, they show sadness and a loss of energy when the parents continue to be unavailable. This is often seen in infants of depressed parents or abandoned infants.

Now a busy mother might repent that she is unable to be with her baby as much as she wants to. No fear dear, babies will accept separation provided it is predictable and Baby realizes that Mom will be back. It is consistent availability that matters, not necessarily constant availability. Little babies are unable to handle unpredictable circumstances and get frustrated. It is the quality time that she demands. So please remember the golden rule to be Consistent, Responsive, Predictable and Comforting (CRPC). Your lively, animated presence will spark the expressions in the little one and help her develop newer skills.

For most parents, this is a very happy and rewarding period of parenting. Don’t you agree?

Enjoy nurturing God’s special gift for you….and if, in the process, you have any questions for me, mail me at udbhaas@gmail.com I will be back for the baby turning 7 months.

Bye for now,

Dr N Chatterjee Paediatrician, Udbhaas

Dear Parents,

It is such a pleasure to see you all so happy with your children. As I close my eyes I see children of all ages, from newborns to teenagers, clinging to their parents, sometimes happy & merry, sometimes sad and crying, some healthy, some sick, some content and pleasant, some irritable and cranky. But one thing is common in all the parents– their eagerness to help their children. Every parent has numerous questions to ask pertaining to better child care. As a paediatrician I have been responding to these questions for long many years. But now when I look back I feel, much has remained unspoken and unexplained. So in this open letter I will try to address the parental queries that I can recollect.

Newborn -2 months

Let’s start with the young mother with her newborn baby, who is ready to give all for her baby but just doesn’t know what is best. Dear Mom, don’t waste time, start breast feeding as soon as possible and feed her as frequently as she wants, holding her close. The best gift you can give her is your milk and your lap. This will provide not only nutrition and warmth, but also sense of security and gratification.

As the baby grows in your lap, look into her eyes, smile at her and talk with her. Very soon she will start to recognise you and reciprocate with her own cues. This is the beginning of social interaction. Whenever the little baby cries to express any need, respond immediately. This pacifies the baby and gives her a sense of control over her environment. She learns the meaning and impact of her own cry. This is her first exposure to the cause and effect phenomenon.

We must remember that the newborn baby can see, hear and feel too, just like us adults; they are not inert! They can also express their feelings and needs with their cry, their gestures and body movement. It is for us to honour their senses and pay attention to their cues…and the mother is the best at it. Strong or flickering lights, loud noise, harsh touch, hot or cold temperature…all these irritate a baby, whereas he/she is soothed by soft music, soft light and soft, warm touch. This is why the little one is so peaceful and comfortable when mama holds him in her arms, humming a lullaby.

Even a newborn can see and they preferentially focus on human faces. So you will notice that in a few days the baby is looking at your face as you feed him. Look back with a wide, warm smile. Here, we must remember, during the first six weeks of life the baby is much like a demanding, grumpy old man, either feeding, sleeping or showing discontent. He will need frequent feeds and a lot of sleep but doesn’t seem to pay heed to your smiles. Don’t lose heart, your efforts aren’t lost. He feels the comfort of your lap and warmth of your smile and is developing an attachment, though still unable to express happiness.

Come 6 weeks and he will start showing responses. As you look into his eyes, he will stare back and gradually a smile will appear anytime between now and 2 months. This ‘social smile’ implies that he is beginning to understand human behaviour and can win your attention with his smile. This is the beginning of his communication skills. Your consistent and animated response will boost his confidence and self control. He will learn that his feelings are important and he can affect his environment.

A lot of things you see the baby do during these early days may seem unnatural and problematic. He may want to feed almost every few minutes, he may pass watery stool with yellowish granules upto 8-10 times a day, or, not pass stool at all for a week, there may be peeling of skin all over, big blue patches on his back, a baby girl may have bloody discharge from her vagina, there may be a blister on the upper lip or maybe a tooth or two…these are all normal variants. Do not panic, but consult your doctor to make sure.

Enjoy nurturing God’s special gift for you….and if, in the process, you have any questions for me, mail me at udbhaas@gmail.com I will be back for the baby turning 3 months.

Bye for now,

Dr N Chatterjee Paediatrician, Udbhaas

2. PARENTING

2.1 BEING A PARENT IS A BLESSING

Being a parent is a blessing, an honour, a privilege; also an enormous responsibility, an extreme commitment. This is a new role you have to take up as you hold that little bundle of joy in your arms. A role for which you can seek all the advice your family, friends, books and above all, Mr Know-all, the internet can give you to equip yourself, or you can simply depend on your intuition, emotion and gut feelings. Either way, it works out fine if the basics are clear. You have a precious gift, love him, nurture him, support him but do not try to possess him or live his life for him. You are that very fortunate gardener with an unique baby plant, that will grow up with your care. You will witness the blooming of an unique flower with the colour, shape and fragrance she is ordained to have. You just make sure she happily blooms to the fullest, emanating love and joy. As a parent you facilitate the growth of the child at every stage, you set the goal and pave the road to the goal, you hold the torch light so he can see, you cheer, you warn, you support all along. But all the while you remember ‘he is growing, I am not making him grow.’
Parenthood does call for a lot of mental preparation. Firstly, one must be ready to feel a surge of unconditional love, which she may have never felt before. This love surpasses the self, knows no bounds, is spontaneous. Yes, it spurts out like a fountain head, but the big thing is to contain it in the heart, cherish and nurture it as the child grows, never attaching conditions to this purest love. A mother’s love never wanes, no matter what. How a child behaves or how he appears or what he achieves can have no effect on the parent’s love. Being a parent means hardships, deprivations & sacrifice, but that magical love makes it all acceptable with no resentment.
This parental love, though unconditional, generally never goes unrewarded. The little one gives back a million times with his first gaze into your eyes, his tiny grasp, his heavenly smile and all his hugs and kisses, all expressing his love and affection. For any parent, this is the best rejuvenating gift. Parenthood also means a huge responsibility. You are gifted with a ball of play-doh and you dream to make a flawless doll out of it. Suddenly you discover it’s a magical play-doh that changes shape and colour on its own, that sometimes stings and sometimes slips out of your hands. “Can I do it? Am I on the right track? How do I handle this?” are constant worries plaguing you. So how can we prepare ourselves for this mammoth responsibility? A few simple rules can help a lot. Firstly, try to figure out what you intend to do for your child. Our intention should be to guide and support him to i) attain the best to his ability ii) to imbibe the values we honour iii) to lead a happy, purposeful life with happiness and content. For this we ourselves first need to adopt a consistent, stable life style with definite principles, values and goal. The child’s nature will evolve automatically according to the ambience he is in. You will just need to give the right guidance at the right time and in the right manner.
We have to remember that bringing up a child is not fulfilling your own dream. It is his/her own life to be framed in his/her own way, which depends on his/her genes, nature, environment and your rearing. So don’t feel shattered if the doll you make is not your dream doll. It is your doll anyway, so love it as it is, make sure it does not break. Remember each doll is unique and beautiful in its own way. As one grows up, he is confronted with criticism from every corner. Let there be someone there beside every child, who will just love without judging. That is the greatest gift a parent can give a child.

Before discussing parenting, we, as parents need to be clear about a few things.

What is the goal of human life to us?

What do we want to see our child achieve?

What are our expectations?

Goal of Life

The goal of life varies from person to person widely. Some want to be rich, some want to lead, some want a relaxed easy-flowing life, few strive for higher goals…. But at the end we all want peace of mind, we want to be happy. As a child we all talked about becoming a doctor or lawyer or football player or a businessman or maybe a truck driver or fashion model or astronaut or a scientist. We all tried to pursue our dreams, some made it, some didn’t. But in the process we hardly ever stopped to ponder whether we got peace of mind or joy or happiness or content. One day we realized, we had become something, but those magic words, ‘peace’, ‘joy’,’ content’, ‘happiness’, were still far away, because we forgot to reach for them. So, why don’t we, as parents set the goal such that our children strive towards peace and happiness, through whichever route he goes, no matter what he wants to become? Can our parenting lead him in that direction? It can.

Well, we need to be very cautious with these two words: ‘want’ and ‘achieve’. When we say ‘achieve’, we automatically think of the end point and too much emphasis on the end point can take our focus away from the means, which is far more important. Getting good marks in an exam is important, but learning the subject is more important. If the child is taught to aim at good marks, without a focus on sincere learning and honest attempt, the result may be disastrous. Let not parental demand take the child’s attention off the means of attaining the goal.

As a parent, if you think you ‘want’ something out of your child, please sit back and think again, why? Is it to fulfill some of your dreams, your expectations? Then you have to beware. Your child has a life of his own, for him to live his way, you are there only to help and guide him. He is NOT your second chance live life over again. His nature and your nurturing will bring out the person that he is. Then, won’t a parent have any expectations? Of course he/ she will, but we have to learn to accept it if they don’t match with the child’s dreams and aspirations. The parent can live the life, be a role model, slowly steer the child in the direction she thinks right, then leave it to the child to follow spontaneously.

3. DEVELOPMENTAL CHALLENGES

3.1 BORN TO BLOOM BUT FATED TO BE NIPPED

A flower in full bloom is beauty personified. Every bud appears with the potentiality to bloom to the fullest, to radiate all its beauty and fragrance. Yet so many get nipped at the bud, so many wither away. Have we ever stopped to ponder whether this loss, this wastage could be prevented? Wouldn't the world be so much more beautiful, had all the flowers blossomed?
Every time I look at a developmentally challenged child, this question keeps coming back to me. Can we just sit back and watch the bud get distorted and wither away?
For every 1000 otherwise healthy babies born, 3 are going to be spastic, with stiff limbs and difficulty in ambulation, 2-3 will develop autistic traits, mental developmental delay & retardation to some extent will be noted in 20-25 children, of whom 4% will have profound retardation, 7% will have moderate problem % rest 89% will have mild retardation. Another 30 children are expected to develop Hyperactivity Syndrome, which we call ADHD. Later, as they start going to school, 16-20 children will develop learning disability of some sort. So out of these 1000 delicate buds how many are going to bloom to their fullest? Quite a grim picture, isn't it?
Let us take a closer look at the problem and try to find out whether we have anything to improve the present scenario, and who is to shoulder the responsibility?
A developmentally challenged child may present in various ways, with various disabilities, of different degrees, associate with a wide spectrum of complicated neurological diseases, all arising from a multitude of aetiological (read causative) factors. Confusing, right? No, I'll not go into any further medical jargon. To put it simply, the gamut of the problem is immense, both in prevalence and severity. But the silver lining lies in the fact that severe problems and grave presentations, though difficult to diagnose and treat, are relatively much rarer. Conversely, the milder varieties of developmental delay and retardation are more commonly met with. They are caused, to an extent, by environmental factors, hence are somewhat remediable and reversible. Milder mental challenges are prevalent in the weaker section of society where nutrition, basic health care, environmental stimulation and education has a lot to do with their intellectual and cognitive stunting. These challenged kids create a greater burden to the already compromised living of these poor families. Developmental challenge;;; a torture for the child, a source of anxiety and burden to the family, a burden and negative resource to the society.
I'm sorry if I'm sounding too gloomy. No, the scenario should not be so grim if we take a little effort, for much of this problem is amenable to correction, provided we act EARLY! Detect early & intervene early to prevent the disability from becoming really disabling! Moreover, much of the challenges & disabilities can be overcome or circumvented to allow the child to function much more effectively and efficiently, utilizing all his potential.
This is exactly what we mean by the common medical term of 'Early Detection and Early Intervention.'
Now the question comes, how early and by whom? In other words, who is to shoulder the responsibility and when?
By early we mean as early as possible, preferably at birth. Why? A baby's brain develops most when he is in his mother's womb & the 1st few months of life. And coming out of that pleasant home called 'mothers womb' to this angry world & surviving here is a trial for the delicate baby. Any maladjustment here can have a bearing on the child's developing brain, giving rise in later life to a developmental challenge. These perinatal and early infancy assaults can leave tell-tale signs, which if identified in time, will give us a premonition that the child may develop a disability. Also, as the baby grows, he can show subtle signs of a developmental lag, which can be picked up by a searching eye. We tend to ignore these minor signs and put it off by saying," It'll be OK as he grows older"....only to admit the disaster when it stares back at us when he really grows older.And this 'we' includes the parents, grand-parents, care-givers, neighbours, even physicians!!! Blissful ignorance!
So, dear parents and grand parents, please consult a developmental pediatrician if your baby was born too early (preterm) on too small (LBW) or was very ill after birth, had to be kept in the NICU. Keep a vigilant watch on how he grows : does he smile, does he hold his head up, does he sit & stand, does he talk in time? Does he see & hear properly? Does he look into your eyes? Does he play the way other babies do? Any suspicion, don't wait, consult your doctor. Dear doctors, please acknowledge a delay or aberration when you note it and for Heaven's sake, do not pacify your client with a "Don't worry, it'll be OK" unless you're dead sure. If it's not your special domain, refer to a 'development' colleague.
Early detection calls for early Intervention. Some problem in the tiny brain cells is preventing the child from functioning normally. If these weaker areas of the brain can be given constant & proper stimulation, they will grow to the best of their potentiality. Moreover, neighbouring areas of the brain can lend a helping hand. Thus the child can learn to improve his skills to the best of his ability. He is also taught to circumvent his disabilities by using his other acumen to perform a particular act. Thus he adapts to life in a more effective & purposive way. All this takes time and patience, but the reward at the end of the day is really fulfilling. The wide smile on the mother's face and the confidence in the child's look will surely tell you that.
This early intervention is not a single dose therapy. It has to go on and on and on. It needs specialized team effort : a team of specialists including a developmental pediatrician, a developmental psychologist, psychiatrist, ophthalmologist, ENT Specialist, a physiotherapist, an occupational therapist, a speech therapist, who will work with the child at regular intervals, through play based interventions, but the pivot of the team remains the mother, who will effectively work with the child day in and day out. It is her perseverance, on which the final show depends! A confident and patient mother wins the race. We have many an example of such battle-winners.
Every challenged child who learns to live a purposeful life, who attains the best of his potentiality, is one more happy person on this earth, with one more happy and content family surrounding him. We thus lighten the burden of one family, the social burden by one unit.
What a divine pleasure to see that smile of fulfillment on the lips of that little 'different child' at the back!
So, though a deformed bud, it wont wither away. It will bloom and it's deviant beauty may surpass the normal flower!

3.2 ‘DOWNS SYNDROME’ WILL NEVER LET YOU DOWN

The new parents stare at the baby with awe. The tiny baby in the crib seems to be a bundle of despair. What was it the doctors said? This baby will never be the child we were dreaming about? She has some terrible disease called Downs Syndrome…. She won’t be NORMAL, she will be RETARDED & slow to learn. she may be an IDIOT… what a shattering experience.
Very often, this is the first impact we give to the parents when a baby is born with Down’s Syndrome, these are the cruel words we bombard them with, not realizing the terrible impact they create. And ‘we’ means all of us, doctors, nurses, friends, neighbours, relatives, etc, etc. Unfortunately, neither do we have the knowledge and awareness about Down’s syndrome, nor are we sensitive to the feelings of the awe-stricken parents.
So, let us take a look at the real scenario, which is not that awful at all! This tiny baby in the crib is just as cute and just as promising as any other baby. Only thing is that she has an extra chromosome21 in her cells, that gives her 47 chromosomes to a cell. This causes some differences in her appearance and her system too.
The appearance though characteristic, maybe very sweet too. A very loveable baby with a sweet smile and very supple limbs is the common look. One cannot resist loving this baby.
Their brain development may be somewhat different, which often make them slow learners, but the good part is that most often their intelligence is just mildly deficient. Though early development may be slow, they do eventually learn to sit, stand , walk and run, as any other child. So with talking.
What the doctor should alert the parents about is the possible medical problems that may be associated, because timely detection and early management can save a lot of complications. So you may need to get some blood tests, X-rays, Echo-cardiography etc done as per your doctor’s advice. Be on the alert for constipation, cough and cold, difficult breathing, and consult your doctor regularly.
Early intervention is very important for these babies’ proper development. Physiotherapy, play and behavior therapy, speech therapy and special education programs are all very essential to bring out the best in a child with Downs Syndrome.
What is the best that a child with Downs Syndrome can achieve? Most often they can live an independent life, with just a little support. They can often complete school education and train in various skills including fine arts and sports. Their special keenness in music and suppleness of limbs give them an extra edge.
As a baby they are easy to handle and least fussy. They grow into cheerful, sociable kids, easy to mix and make friends easily. Even as adults they remain simple, soft and gentle… a trait so rare in today’s world.
So parents, be proud you have a child with that extra gene. Though a Downs, he will not let you down if you take proper care of him. And he deserves that extra care and affection too.

4. AUTISM

4.1 AUTISM: FACTS FOR PARENTS

What is Autism?

Autism is developmental disorder that generally becomes evident by the third year of life. It causes impairment or disturbance in three main areas: Poor Social skills Poor Communication (verbal & non-verbal) Repetitive and restricted behaviors. Abnormal responses to sensations. All these difficulties manifest in altered behavior i.e. abnormal ways of relating to people, objects and the environment. Autism is known as a ‘spectrum disorder,’ because the severity of symptoms ranges from a mild learning and social disability to a severe impairment, with multiple problems and highly unusual behavior. The disorder may occur alone, or with accompanying problems such as mental retardation or seizures. Autism is not a rare disorder, being the third most common developmental disorder. Typically, about 2 out of 1000 children may have autistic symptoms. 80% of those affected by autism are boys. Autism is found throughout the world, in families of all economic, social, and racial backgrounds.

What is a child with autism like?

A child with high functioning autism may have a normal or high I.Q., be able to attend a regular school and hold a job later in life. However, this person may have difficulty expressing himself and may not know how to mix with other people. Moderately and more seriously affected children with autism will vary widely. Some autistic children do not ever develop speech, while others may develop speech but still have difficulty using language to communicate. Often, there is an unusual speech pattern, such as echoing whatever is said to them, repeating a word over and over, reversing “you” and “I” when asking for something, and speaking only to express needs, rather than emotions. A child with autism looks just like any other child, but has distinctive behaviour patterns. A child who is autistic may enjoy rocking or spinning either himself or other objects, and may be happy to repeat the same activity for a long period of time. At other times, the child may move very quickly from one activity to another, and may appear to be hyperactive. Many autistic children have sensitivity to certain sounds or touch, and at other times, may appear not to hear anything at all. Autistic children may have very limited pretend play; they may not play appropriately with toys or may prefer to play with objects which are not toys. Autistic children may be able to do some things, like sing songs or recite rhymes very well, but may not be able to do things requiring social skills very well.

How is autism diagnosed?

There are no medical or genetic tests to detect autism. A diagnosis of autism requires a sensitive and experienced doctor to observe the child very carefully, ask the parents about the development of the child, and then objectively follow internationally recognized criteria for diagnosis. Onset may occur at birth, or a child may have a period of normal development followed by a deterioration of verbal and social skills around 1 1/2-2 1/2 years. Where onset is at birth, the disorder can be detected as early as one year. Autism may occur alongside conditions such as mental retardation and hyperactivity, but the autistic traits in the person are typically what require attention.

What is the cause of autism?

We still do not know what exactly causes Autism. However, current research indicates that structural or functional damage to the central nervous system can lead to Autism. We know that certain viruses and known genetic conditions are associated with Autism. In addition, there are families that have more than one child with autism. At present, it is believed that about 10% of all cases can be accounted for genetically. It is difficult to tell parents why their child has autism, but it is not caused by an unhappy home environment, both parents working, mental stress during the pregnancy, poor handling by the mother, an emotional trauma, or other psychological factors. You cannot cause a child to become autistic.

Can it be prevented? Can it be cured?

At present, there is no medical cure for autism. The only consistently effective treatment for autism is a supervised structured training program, started early; therefore, a combination of a good school and parent training is very important. Autistic children can make significant progress if the intervention is early, appropriate and consistent. Early intervention, before the child is three, is especially crucial to the child’s progress. This is why an early and accurate diagnosis is so important.

How is it different from Mental Retardation?

In mental retardation there is equal lag in all segments of mental development, e.g., motor, communication, social, self-help, cognition etc. In Autism, there is an uneven skill development– in some areas the child may show age-appropriate skills, in some the skills may be below average and again, in some areas exceptional skills may also be seen.

Can the child ever live an independent life?

Children with Autism have potential for building up their skills and they can be helped if they receive early, well-focused intervention. Depending on the child’s individual skill profile and the appropriateness and intensity of intervention he or she receives, children with Autism can lead relatively independent lives.

What are the chances of his going to a regular school?

Autistic children can be integrated into regular schools, with the support of special education facilities. Most children with Autism have different learning styles from regular children and therefore teaching styles also need to be different. The chances of main-streaming depend on several factors, like, the child’s skill profile, early diagnosis and effective early intervention.

Will my child ever speak? When?

A large member of autistic children (about 30-50%) do not use speech. It is very difficult to say when and whether the child will ever speak. It is confirmed that there is no difficulty in their physical abilities to speak, but it is their lack of initiative to communicate that stops them from speaking. Some children who might have spoken as infants and then lost their speech may or may not get their speech back. Currently, it is unknown why some children develop speech and others do not. Experience with children with autism has shown that if the environment is accepting, and people are aware of the kind of speech they themselves need to use with the child, it can produce positive results.

Can Speech Therapy help?

Speech Therapy can help some children. It is absolutely essential for the speech therapist to understand Autism and the individual child. However, every child with autism can benefit from interventions that help build communication skills, verbal and non-verbal.

Why is he hyperactive?

Most children with Autism are restless because of an impairment of their imaginative and social skills. They cannot play with toys or other children meaningfully and find it very difficult to occupy themselves and become restless. Hyperactivity can be reduced as the children are taught new skills to keep themselves occupied.

Why does he keep playing with his fingers/ rocking himself back and forth/ spinning around etc?

Children with Autism respond to sensations differently. These unusual mannerisms like flapping and rocking etc. are natural responses or methods of coping with their sensory difficulties. These behaviours may help them to relax.

Is there any hostel for such children? 

India there are few hostels for people with mental disabilities and ones exclusively for autistic individuals do not exist here. In the early years of development, it is important for an autistic child to live and grow in a home environment. As the child grows up, he can be trained to live in a group home but it is very important for the autistic people living in such homes also to integrate with society in general and not just be abandoned in a home or hostel.

Are people with Autism also mentally retarded?

It is very difficult for people with autism to take an IQ test because they may have certain skills but are not able to use them or exhibit them in a test. About 50% of people with autism are also mentally retarded. Autism can occur in association with other difficulties like Cerebral Palsy, Dyslexia, Downs Syndrome, Visual Impairment, and Seizure Disorder.

4.2 asperger's syndrome

ASPERGERS SYNDROME

Asperger syndrome (AS) is a neurobiological disorder and comes under the group of conditions referred to as Autism Spectrum Disorder. The disorder was first described by Hans Asperger, a Viennese pediatrician in 1940.

Features of AS

This condition is common in boys. These boys typically have normal intelligence and language development, but, they have impaired social skills, are unable to communicate effectively with others, and have poor coordination. They may also have obsessions, odd speech patterns, and other peculiar mannerisms. Children with AS often have few facial expressions and have difficulty reading the body language of others; they might display an unusual sensitivity to sensory stimuli (for example, they may be bothered by a light that no one else notices; they may cover their ears to block out sounds in the environment; or they might prefer to wear clothing made only of a certain material).

Other characteristics of AS include motor delays, clumsiness, limited interests, and peculiar preoccupations. Adults with AS have trouble demonstrating empathy for others, and social interactions continue to be difficult.

Overall, people with AS are capable of functioning in everyday life, but tend to be somewhat socially immature and may be seen by others as odd or eccentric.

It’s important to note that, unlike kids with autism, those with AS might show no delays in language development; they usually have good grammatical skills and an advanced vocabulary at an early age. However, they typically do exhibit a language disorder — they might be very literal and have trouble using language in a social context.

Often there are no obvious delays in cognitive development or in age-appropriate self-help skills such as feeding and dressing themselves. Although kids with AS can have problems with attention span and organization, and have skills that seem well developed in some areas and lacking in others, they usually have average and sometimes above-average intelligence. Many have excellent rote memory and become intensely interested in one or two subjects. To summarise, the common symptoms & signs of AS are:

• Social problems:

Difficulty in making friends

Socially inappropriate behavior

Difficulty judging personal space

Rigid social behavior.

• Abnormal communication patterns:

Awkward or inappropriate body language

Unusual style of speaking

Difficulty with “give and take” in conversation; or Lack of sensitivity about interrupting others during conversations.

“Scripted,” “robotic,” or repetitive speech

• Activities:

Inflexible adherences to routines

Apprehensiveness about change; or an Intense interest in a particular subject or activity.

Obsession with complex topics such as patterns or music Odd behaviors or mannerisms

• Sensory sensitivity:

Sensitivity to sound, touch, taste, light, and smell.

• Motor skill delays: 

Clumsiness or poor coordination,

History of delayed development of motor skills;

Deficits in visual-motor and visual-perceptual skills; including problems with manual dexterity, handwriting, balance, and imitation of movements problems with reading, math, or writing skills

What Causes Asperger Syndrome?

The cause is not definitely known. Heredity may be a factor; environmental factors that affect brain development might play a role. AS is not caused by emotional deprivation or the way a person has been brought up. It is not a result of bad parenting.

Treatment:

Currently, there is no cure for the disorder — kids with AS become adults with AS. But many lead full and happy lives, and the likelihood of achieving this is enhanced with appropriate education, support, and resources. The following may benefit the child: parent education and training specialized educational interventions for the child social skills training language therapy sensory integration training for younger kids, usually performed by an occupational therapist, in which they are desensitized to stimuli to which they’re overly sensitive psychotherapy or behavioral/cognitive therapy for older children medications

All the child’s caregivers should be involved in the treatment. The health professionals who are caring for your child should know what the parents & other care givers are doing at home.