Dr. Samir Dalwai on Child Development and Disabilities

In your experience, what is disability in the medical context?

In a medical context, you must understand, things are always comparative.

All science is comparative because you have to have a norm to compare it with.

So when you look at disability, it is an impairment in some function of the person, either motor, that is movement, or intellectual, that is cognitive or sensory, like vision or hearing, that, or attention span, or being able to communicate, as compared to the norm at that age, and that is a comparison which tells us that this person has an impairment in this or these areas.

It follows that this person will not be able to perform the function as well as somebody else who’s endowed with a near normal capacity for that ability.

Thai disables the person from being able to perform at the level or function at the level, somebody else with a better ability is functioning.

This is worsened because the entire world is made or created to suit the needs of that who is the average ability and if you lack that average ability, then the world disables you or impairs you or handicaps you from being able to perform what the world wants you to perform, when it has adapted itself to the norm and it has not adapted itself to the person’s who’s a little below or above the norm.

So, both of them are disabled, the person who’s performing less as well as a person whose ability is superior to the norm because the world is in a compartment that wants you to do only that which is average.

If you’re not able to perform, thereby it’s not just a fault of the individual, it’s also the problem of how the world has been created around you.

I’ll give you a simple example, if my attention span is only two minutes whereas at my age it is supposed to be five minutes, the lesson in the classroom will be designed for a child whose average attention is 5 minutes.

I lose my interest after 2 minutes, hence I will not learn the information and the knowledge that I would have gained from the third minute up to the fifth minute.

So, my impaired ability to uh concentrate for 5 minutes prevents me from learning a great part of what the world wanted to teach me or I had to learn from the world.

The better part is to come, the next day the teacher starts from where she left off yesterday.

Again, I have only a 2-minute span, not a 5-minute.

The guy who had a 5 minute span learned everything in 5 minutes, so today when the teacher starts he’s at the spot and he picks up again.

Today I again have a problem that I have only a 2-minute uh attention span but it’s worse for me today because I haven’t understood the entire lesson of yesterday.

What are some common disabilities you see in children?

As a developmental pediatrician in private practice across six centers in the…across the city, the commonest child complaint that we see today is my child is not speaking or related to speech.

The second commonest is my child is not sitting in the classroom.

So, the commonest are those around speech and behavior and communication and as a pediatrician I’ve always been seeing children with uh neuromotor disorders like cerebral palsy.

So, to classify it, we have neuromotor, we have neurobehavioral, we have neurocognitive.

We have sensory in terms of vision and hearing.

So these are largely the disabilities that we see in children.

What are the signs and symptoms that an adult should look for that might indicate that a child has a disability?

Well, before you understand disability, it’s very important to understand ability.

So, these are norms which the child develops according to…So, what is child development?

Child development is defined as the acquisition of new skills for new functions.

For example, at birth, what does a child do?

Nothing.

By the time the child is 18, he is developed.

We say he is developed because he’s able to walk, run, jump, speak, study etc., have a social interaction etc.

So, we divide the developmental domains into two or three major areas.

For sake of simplicity, one is the motor area and the second is a social communication area, how we see the child developing.

So in the motor development, as you are aware, that by the time the child is about 4 months old, the child should be holding up the head independently, the child should be rolling over.

Thereafter, the child should be sitting, then standing, then walking, then running.

And these are…there are norms for every population, gender.

There are norms for those who are born pre-term.

So we know that this is a norm.

What do you mean by norm?

If you take, if you want to find out, uh what is for sitting, so you will have to put up thousand children, for example, and the one who sat earliest versus the child who sat latest and then you look at two standard deviations and you look at the child bang in the middle, but the two standard deviations are the norm which is considered, that if you are within this much, then we can assume you’re normal, if you’re outside the two standard deviations, we will assume that you have a problem.

Now though this is not a very perfect way of doing it, the advantage is, it tells us which child is really lagging behind significantly enough for us to pay attention.

It doesn’t mean every child who’s lagging outside those two standard deviations is abnormal and it doesn’t mean that every child within those two standard deviations is normal but at least there is a measure at a public level or public health level, for us to focus on certain children.

So the child who does not hold a head as per the appropriate norm, say 4 months, at least by 6 months, so that’s the range, or does not roll over or does not sit independently, does not stand independently, does not walk independently and you have these norms…are all available.

Similarly a child who does not have very good eye contact, a child who does not respond to name call, a child who does not learn to point at an appropriate age, a child who does not show stranger anxiety at the right time and more importantly, a child who does not have non-verbal communication and thereafter verbal communication.

Later on if you go to an older child, a child who’s not able to sit in the classroom, does not sit in his place, keeps moving around, is not able to control or regulate his own physical activity, we end up calling them hyperactive or impulsive or a child who is not able to pay attention to what’s being taught or spoken to, in the class.

So all these are now considered as disabilities and of course it’s obvious that children who cannot see or children who cannot hear, who have these sensory issues and then there are those children who are slow in most things.

They’re not very bad in any one thing but they are slow in most things, we call them global developmental delay and later on perhaps intellectual disability.

These are one…this is one way of looking at and then there are some who have a physical problem at birth itself.

For example, somebody may have a problem, physical problem with the arm or the or the leg, so all these things would be looked at.

If the child is lagging behind in achieving any of these milestones or achievements as per the norms for that age, I think the parent should suspect this and bring it to the doctor, but, but, but I don’t think it’s right to put the pressure for this only on parents.

Millions of children in India are seen by a pediatrician today, we have 44,000 pediatricians in the Indian Academy of Pediatrics, many more outside it as well.

So what we have done is, we have come up with guidelines which tell every pediatrician what must you see at what age.

For example, what are the things you must see on the child’s first vax and we have times it along with the vaccination schedule.

So what should you see on the 1 and a half month vaccination, 2 and a half months’s vaccination, 3 and a half month’s vaccination.

So typically by the time the child comes for the first, around the first year, is the child able to look at you?

If you call out to the child, does the child look back at you?

Does the child show human engagement? Social interaction?

I like to use the word human engagement better because it’s more clearer, rather than just using jargon.

Is the child, of course, by one year, able to stand very independently and walk, at least a little bit of support, but walk some steps independently?

And very important, is the child able to identify familiar people or relatives versus unfamiliar people or strangers?

And is a child able to, at least, respond to his own name being called and call out to the mamma and dada.

So if these things are seen by the developmental pediatri…by the regular pediatrician or by the regular family physician or whoever is trained in this science, we should be able to help the parents understand, that ‘look, I don’t think there’s a serious problem, but on the norm, your child is lagging behind’.

For example, if somebody, you touch the child’s forehead, the mother feels it may be warm, you put a thermometer, you may be getting, say 100 degrees.

Now, when you see hundred degrees, it shows that the body temperature is more than the normal, it doesn’t mean somebody has typhoid or malaria right away, it could just be a viral fever.

It could be because you were out in the sun for so long or something like that.

But the fact is you cannot ignore that it is showing 100 degrees.

And then what do you do?

Whatever you do, if it comes back to 99, you’re sorted..

But you don’t do anything and don’t test for it and don’t do anything to bring it back to normal, wait and watch is not the right policy.

How important is early diagnosis and intervention in the management of disability?

Oh it’s most important because development is a track.

It’s like you’re moving from say, Bombay to Calcutta by train, if you are late, you will miss reaching where you needed to reach at that point of time and the world is prepared, like we said earlier, only to give you that at that point of time, expecting you to have achieved whatever is needed.

For example, if you go to a uh pre-primary school, the pre-primary school syllabus is designed for the age of entry, assuming that all children have achieved all the milestones at that point.

If your child has not achieved it at that point, then he starts with a disadvantage.

I’m using the word ‘disadvantage’, but it ends up as an impairment or a disability because he doesn’t know what’s happening or he or she is not yet appropriate for that developmental level.

So, what is more important is the developmental age, not the chronological age.

If, at all, you are able to correct this early, then you prevent all the disadvantages that would have accrued because you are late.

And hence the earlier you work on the developmental delay, the earlier you’re able to set the child back on the trajectory, the better it is for the child to absorb everything else from the world around him or her.

The later you do it, there is a significant gap that the child has lost, which is very difficult then to make it up.

Beyond delay there is also an issue of deviancy where the child may have a different trajectory altogether, which means rather than going towards Calcutta, this child is headed towards Delhi.

The problem is that, in a delay, even if you wait, the child will eventually do catch up but of course there will be significant problem, like I said, the problem with deviancy, the more you wait, the further away the child is going.

So, the whole idea is, if you pick up, there is a developmental challenge with your child, I’m not saying problem, challenge, with your child and if you suspect that the child is not meeting the milestones as appropriate…very important to consult a specialist who is trained to look into it, decide whether there is a problem or no and advise you the right thing to do.

And that is very important because the earlier you do it, the faster your chances of getting the best possible for your child.

Can you explain the roles of the different specialists in the care of children with disabilities?

Alright, now, this different role of different specialists comes because uh historically how did entire…the rehabilitation develop, for example, as you know there were children who had or people who had a physical impairment and we had only something called physiotherapy, many many years back.

It was only during the war when soldiers lost a thumb or a finger or something and before the war, they were recruited for the world wars, they were maybe a weaver or they were doing some work with their hands, they were recruited into the army, after the war they went back, but they lost that crucial part of their anatomy or physiology, which prevented them from doing their occupation again.

And hence out of physiotherapy evolved another specialized branch called occupational therapy which would help that person uh go back to his own occupation or profession but they would guide him or help him or assist him or aid him to be able to function, though he had had a uh some kind of a disability.

So this is how different functions have evolved.

There were children who had a speech problem, so there were some professionals who specialized in how to deal with or help those children.

And then there were some children who had a educational problem, so you had an entire branch of educational or remedial uh profession who helped these children.

And of course there were people who had some psychological issue and you had psychologist.

Then amongst pediatricians, when they started to observe that these child…children have some delay or they had some neurological problems, then became a specialty of developmental neurology.

But quite late, I would say, came up the…then there was behavioral psychology, so psychologist would look after that.

The orthopedicians would look after the cerebral palsy, pediatricians would try to look at the general part of it, and then in the earlier part, the middle part of the last century, there came about a time where people thought that development and behavior are part of the same continuum or the same spectrum.

And this specialty of developmental behavioral pediatrics was born and the developmental behavioral pediatrician is a fulcrum around whom all these specialties are based because each one is a specialty in itself.

It may be difficult for each sub-specialty to look at the overall picture.

At the end of the day it’s always a holistic picture.

I get children who bring a report of, say, learning disability from Sion Hospital or wherever else, that ‘this child has learning disability, we want remedial education’, for example, somebody who will work on this education.

But by the time the child came to 9th or 10th he has suffered so much humiliation and abuse, that by now, and like I said, he wasn’t understanding what was being taught from class one or two, he has no clue of what’s happening in class 7.

So he would obviously not be looking at the teacher, he would be interested to occupy himself on his own by doing something or distract somebody else.

Now this child also gets tagged as a child with hyperactivity, impulsivity and inattention.

But it’s plain simple inability to understand what’s being taught, at the same time it’s plain boredom, it’s plain lack of motivation because he knows what’s going to happen next after an exam, ‘my parents will be called, I’ll get a big fat zero and then everybody will crib, my mother will cry, my father will get angry, I’ll get bashed up at home and the same thing is going on’.

How do you expect this child to be motivated emotionally?

So when I see the child, the last thing that I want to focus on, beginning, is education.

The first priority is to make sure the child is emotionally safe, emotionally alright, and that doesn’t begin by me giving a lecture to the child.

It’s by sitting down with the parents, explaining to them the entire genesis of the problem, but besides the educational problem which I’m sure they’ve read up because they got it as a diagnosis, I need to explain to them why the child has such a big emotional crisis, why he’s totally demotivated, why he’s totally believing that ‘my parents will never understand me and there’s no point in me talking to them and there’s only this gang of boys in the school who are having the same problem, only we understand each other’ and he’s going on that path which a few years later we’ll call Conduct disorder and then we’ll call it as Antisocial Personality Disorder.

So, we need to make the parents understand that everything is holistic.

And hence the biggest challenge is, how does a team of professionals or sub-professionals work together for the common good?

At New Horizons, you have an organogram.

At the top of the organogram is not the developmental pediatrician or the neurologist or the therapist.

At the top of the organogram is the child, because the child and the family…when I say child I mean the family dictates or, you see, what is the problem with the entire situation there?

That dictates what the child and the family needs.

You sit down and arrange everything and tell, ‘you do this – you do this’, I mean it’s just like a movie set.

There is somebody who writes a script, there is somebody who shoots the film, there’s somebody who writes a dialogue, there’s somebody who makes the music, there’s somebody who looks at the lighting.

Everybody needs to be told their job.

But if this is not coordinated, you’ll have a mess.

If you’re constructing a building, you need a plumber, you need an electrician, you need a mason, you need a carpenter but if you don’t know exactly what is to be done well according to a blueprint, you’re not going to end up with anything, you’re going to have chaos.

The second part is even more important, you’ve got…if the child has come in, you’ve made a holistic diagnosis, then you’ve made a holistic plan, but the biggest problem is who’s monitoring it?

If I’ve seen the child, holistically, I’ve made a plan with my entire team of therapist, psychologist, special educators, occupational therapist, physiotherapist, speech therapist, the geneticist, the pediatric neurologist, the pediatric orthopedic surgeon, the psychiatrist, then once I start the program I need to monitor.

At New Horizons the development pediatrician sees the child and family and monitors them every month and unless we monitor, that this is the plan I had made for your family and child last month, then we worked on it, you worked on it, let’s see where have we reached, did we achieve the steps that we wanted to, if you’ve reach…achieved that 100%, then let’s plan for the next month and so on so forth.

If we’ve achieved only 50%, let us find out whether we were wrong or whether there was a problem in the…you know, we misdiagnosed the problem or whether there was a problem in us communicating to you as parents what should be done or whether you as parents had some genuine challenges in doing that and then we need to look in a month, one month later, 30 days later that, ‘hey hang on there’s a new set of problems that has presented itself in one month, which is why you are not able to achieve our one month goals, let us now immediately try to work on them.

If I made a mistake I’ll …I need to immediately correct.