Emuwa: Challenges of Managing an Autistic Son

2010-04-27
THISDAY Newspaper- Funke Aboyade

Chidubem loves to touch things. At this moment, it’s Dave’s digital camera. He seems quite fascinated with the images and touches them. ‘Daddy’, he says, as he recognises his dad. Dave allows him to touch and feel the expensive camera for a while. His father smiles on a trifle uneasily, concerned perhaps that he may inadvertently damage the sensitive camera.
‘Aelex is able’ I say mischievously to Dubem’s dad. Mr. Theo Emuwa is a partner at Aelex, one of the more successful law firms in the country. Last year, they were rated Law Firm of the Year, Nigeria by Who’s Who Legal. What’s a camera, expensive or not, to them?

It’s almost 9 O’clock, and we (myself, Jude Igbanoi, Dave Njoku and his camera crew) are at the Emuwa’s residence. Dubem is all set for school but his departure has been delayed to enable us conduct the interview.
The nine year old is a natural in front of the camera as he strikes different poses unprompted.
‘Cheese, cheese, cheese’ he says repeatedly. Yes, he also likes to repeat things too.
In between, he bounds up and down with endless energy and seems your typical nine year old.
Chidubem is however a special child. He is autistic.
‘Cheese, cheese’ he happily chants.

‘Echolelia’, his dad explains.
Echolelia. The repetition or echoing of words and sounds a person has heard either recently or some time back. It is often present in autism.
‘He may sing a song he heard 12 hours ago’ his dad continues.
Delayed echolalia then.
Defined as the “echoing of a phrase after some delay or lapse of time”. Persons with autism who repeat TV commercials, favorite movie scripts, or parental reprimands come to mind when describing delayed echolalia. Delayed echolalia appears to tap into long-term auditory memory, and for this reason, may be a different phenomenon from immediate echolalia. Because it can involve the recitation of entire scripts, delayed echolalia, is often thought to denote evidence of near-genius intellect. http://www.autisticsociety.org/Encyclopedia/op=list_content/eid=36.html
Dubem maintains his fascination with the images on the digital camera as he proudly points out his daddy, then his body parts.

‘Elbow, knee’ he says.
Touching his other knee, ‘elbow’.
‘No, Dubem, that’s your other knee’, his dad patiently corrects.
After some slight hesitance, ‘Knee!’ he shouts happily.
‘Toilet, toilet, toilet’ says the child in a determined manner as he tugs at his father to get up. He needs to go. Now.
‘Give me a full sentence, go on Dubem, full sentence’ coaxes his father.
‘Isn’t that a bit harsh? Tough lawyer!’ I joke.
‘No, it’s called tough love. He has to be forced to think about it. Autistic children are reluctant or find it difficult to work out these sorts of things’ Theo calmly explains.

Normal Beginnings…
Chidubem was 18 months old when his parents realised he was different.
‘Up till then he had been developing more or less normally. He is the third of three children, so one knew what to expect. From then on, for the next few months, he started losing his words and by 24 months he wasn’t talking at all’ Theo reveals.
It also helped that he had a friend who, many years earlier had gone through a similar experience and so, Theo recognised the signs.

‘I did have a friend who had a child with autism and he didn’t know what it was at the time. He eventually did, but he had lost a few years. They say that the earlier you start with treatment, the better the chances of the child improving. It’s an ailment that is still being understood by the medical community. There are still medical people around the world who don’t understand this. That is part of the problem. This is because it can be confused with other things. If for instance a child’s hearing is bad, that child will not learn how to speak.

Early Signs
‘When a child stops speaking it doesn’t necessarily mean that the child has autism. It may be just a hearing problem that needs a test to eliminate.
‘Some doctors would say, “Oh well, it’s just a temporary problem, the child will get better”. Not every child learns to speak at the same rate. Some may not speak for the first two years and some may start speaking at about six months. Some doctors will tell you, “Oh, it will come, it will come.’ In many cases, it does come. But in the case of a child with autism, it’s when they wait for a while and it hasn’t come they start to get worried whether something else is wrong.
‘So, yes there is a problem with the medical people understanding it and you also have a problem with parents being in denial. If you see things which you don’t think are usual and you tell yourself that “Well, he will grow out of it”, and time goes and he doesn’t grow out of it, you’d better start wondering what is going on!’

Pragmatic Acceptance
How did the Emuwa family take the news when confronted with the reality that Dubem was indeed autistic?
‘I am pragmatic and actually said, “If that is what it is, that is what it is. Deal with it”. My wife and I started looking for solutions and treatments. Like I said, they did a hearing test to eliminate a hearing problem.

‘They do an ECG to see what is going on in the brain circuitry. The therapy is mostly behavioural therapy; there is really no medication that cures it. You have to treat the child’s behaviour. It involves a teacher or tutor sitting down with him for many hours a day teaching him basic modes of behaviour. That is the sort of thing they have to struggle with. They have to learn how to relate with other children and how to play with other people’.

Theo’s wife, Angela, is an Advertising Executive but now stays at home full time to care for their son. This care involves three or four trips to South Africa for periods of a month each, every year. He also has a carer round the clock.
‘There’s a dearth of facilities locally, that’s the truth. It requires people who have an understanding of child psychology, behaviour and things like that. I don’t think that is something that you find many people trained for in Nigeria. We did go to see a few people and eventually got referred to some facilities in South Africa. That is where we have been going since 2004, six years now.

‘We go there about three or four times a year and spend about a month and have one-on-one training. What is required is one-on-one. They can’t learn in a class of 10 or 15 people. You have to focus on them and get their attention, because they are easily distracted’.
The intervention has evidently been successful.
‘How you see him is not how he was seven years ago. Seven years ago he probably wouldn’t have been able to focus on anything for even two minutes. If you tried to teach him and he hears a leaf falling outside, he would turn to look at that.
‘If he can’t pay attention, he can’t learn. That is one of the challenges, so, you find ways to get them to increase their attention.
‘Another thing is that you allow them to exercise; that takes away the energy and if they don’t have the energy to jump up and down even if they wanted to, that way they’re able to pay attention for a few more minutes. It doesn’t mean that they will focus for half an hour uninterrupted’.

A Dearth of Local Facilities
One would have imagined that there would have been more facilities, that someone would have started something to help these children develop instead of having to go abroad?
‘The truth of the matter’, responds Theo ‘is that it’s not something that you can make a business out of. Even when you set up a regular school and you are running it properly with good standards, there won’t be much of a profit there. That is why most of the good schools are not profit making. They are either owned by Churches, charities or NGOs. Even around the world, it’s not something that you set up and say you would make an income out of it as a business.
‘There is therefore no incentive for someone to try set it up as a business. There are quality people who have set it up as charities. There is Patrick’s School of Learning, there is CDC (Children’s Development Centre) and they are oversubscribed.
‘There are more people that need help and there are few places to go. They have survived by the generosity of their benefactors.
‘It’s also an expensive ailment to treat, when you think about the things you need to do’.

The Dos and Don’ts
As he explains it, there are dietary dos and don’ts for autistic children. No dairy, no wheat, no flour, no barley, no gluten, no glucose.
Broken down, that means no ice cream, no milk or cheese, no cake, no bread, no Quaker Oats, no spaghetti. A lot of NOs for a child to have to contend with…
‘The alternatives are corn bread, for example, or rice-based foods. There is spaghetti that is made from rice, but things like that are not readily available here.’
Dubem, like any other child, would happily down some cake if given half the chance. At birthday parties, he’s been known to sneak off to a corner with a piece of cake and munch away happily!
However, as his dad points out, though the connection is not quite understood by the field of medicine, removing dairy products from autistic children’s diets greatly enhances their improvement. For this reason, they must be closely monitored.
‘You have to get people who would spend time with the child. The child cannot be left alone even at night. He has a carer who’s with him 24 hours a day. Then he has a tutor. These are the things that make it an expensive ailment to manage’.

The Challenge
The Emuwas have had to make other adjustments in their lives to address this challenge.
‘There is the time issue. They are hyperactive and they need to have somebody engaging them many hours of the day, teaching them behaviour. Of course you could give up your job completely and spend all your time with the child teaching him. But that would mean you don’t earn an income!
So, you’re better off employing somebody who would do that and who is also trained to do that so that you spend time earning an income and spend time with the other children, because he is not the only one.’
Theo and Angela have two older children, Obiechina who’s almost 19 and Chicheta, 17; both are currently schooling in the UK.
How do they interact with their younger brother? How do they cope with the challenge?
‘They love him and they have learned how to manage him. In that regard we are quite happy with the situation’.
Any sibling resentment because of the attention which has to be devoted to their brother or does the age gap ameliorate it?
‘We haven’t had any seeming resentment. Even when children are close in age it’s possible for the parents to teach them to support one another. I don’t think it necessarily follows that there must be competition. Yes, that is often what happens, but I think it’s possible for the parents to reduce that instinct to compete.’

Autism Awareness
What would he say is the general level of awareness in the Nigerian medical profession and society?
‘I would say they are aware of what they are aware of, like any other ailment. The problem we have is when you have an ailment, instead of recognising it for what it is you blame it on some evil forces or enemies! Somebody has typhoid or malaria, he says that is not what he has. He says it’s not his portion, people are attacking him, instead of going out there to get the appropriate treatment! That is more the problem than being aware. When they see a problem, they refuse to admit that this may be autism or this may be hypertension, diabetes or whatever. They don’t want to face what it is and they say, “That can’t be”. By the time they realise what it is they would have lost valuable opportunities to remedy the situation’.
Dubem goes to regular school – Greensprings, in Gbagada where they live.

To enable him develop social skills more than anything else, his dad explains.
How does he interact with other children in school? Children can be quite cruel. Has he experienced any difficulties from classmates?
‘His school does provide for children with challenges. They even have a section for such children, so he is in that section. One must commend them for having the right sort of atmosphere for that. But I don’t think he has had any such negative experiences in that school. They quite understand of this, in fact they have several children with similar challenges.’

Learning Readiness
As we speak, the camera continues to hold the young boy enthralled.
‘Curtain!’ he shouts excitedly and evidently pleased, on seeing the sitting room curtains in the background of some shots.
We learn that every morning, his household chores include drawing the sitting room curtains.
Shortly, his attention shifts to an encyclopaedia, The World Book, and he turns the pages and repeats the name of pictures he recognises.
I’m impressed that he spends quite an amount of time with the volume.
‘Learning readiness’ his father explains.
This has been useful in learning, for instance, how to ride a bicycle. It took a while to get the hang of it but now he loves riding. In fact, he rides too fast says his father ruefully.
Dubem is also learning to play the recorder and piano.
As he prepares to set out for school, he reaches for his cleaning stick and puts it back in the recorder case, at a perfect angle. Autistic children are often quite precise.
We get up to join him by the piano and I notice a school photograph of Dubem, quite the handsome lad. But what’s with the plaster on his forehead?
It turns out he has a habit of scratching himself until he’s sore and bleeding, and even then won’t stop - a common occurrence with children with autism. Some have to wear protective helmets to prevent them hurting themselves as they bang their heads continuously, for instance, against the floor without so much as feeling the pain or perhaps making the connection between the action and the pain.
Chidubem gets in the car and as the driver reverses out of the compound Theo reminds him gently, ‘Say bye bye’, demonstrating a wave.
Dubem does wave but as Theo explains, it doesn’t necessarily mean he has made a connection between the wave and departing.
‘You have to teach them’ he says, ‘they don’t make eye contact’.

Supporting Each Other
We return to the sitting room to conclude the interview. I notice a yellow T-shirt with a ribbon and the following letters in red:
Ask questions
Understand
Tell a friend
Include
Show your support
Make a difference
It’s a T-shirt Theo, along with other parents, family and friends of autistic children, wore recently for the Autism Awareness Day walk in Lagos to mark April as Autism Awareness month worldwide.
I ask him about support groups for parents.
‘There are different groups that are trying to support each other, but I’m afraid that they are not as integrated as they could be. They are dispersed. You have groups in different parts of the country and you have groups living in different parts of Lagos. It will be a good thing for all if they are able to come together, but everybody is challenged because they have limited resources. When there are limited resources, it’s difficult to convince people that there are benefits to be derived in coming together’.

Autism on the Increase?
Is the Nigerian society is more open now or is there an increase in cases of autism due to say, changes in lifestyle?
‘It’s not for me to give a good answer to that, not being a medical person. I read reports that suggest that even in the developed world the incident is increasing. Even they are wondering whether it is increasing because there are more people who have it or if it is increasing because it is more readily recognised. It’s hard to say.
‘But yes, there are increasing numbers being recognised as having it, whether it’s because people are now more prepared to call it what it is or because there is actually a greater number of people who suffer from it, I’m not really sure’.
There’s no cure yet but as Theo points out, ‘The sooner you start therapy, the sooner you adjust the diet, the greater the chances of the child improving.
Some people improve to the point where by the time they are teenagers, they are almost non-autistic. We hear reports on that, but I think those are rare cases. Some people will always have some elements of autism in them’.

The Cause, the Trigger…
As to whether there’s an element of truth to the assertion that autism can be triggered by some childhood vaccines, his view is that it’s hard to determine.
‘In Dubem’s case, he started having the symptoms even before he had that vaccine. Whether it is something that would have happened for many children anyway, I guess parents would never know. I won’t ascribe it to that vaccine.’
He thinks it could be ‘something that is the chemistry’ or perhaps ‘just a matter of being triggered in the environment’.

We Thought He Was Dying!
The Emuwas have had their share of scary experiences. Autism sometimes presents with convulsions at the child gets older, but nothing quite prepares you for it.
‘Dubem had his first last year. He just went limp, speechless and blank, we thought he was dying!’
How supportive are his partners at Aelex if for instance, he’s unable to attend a meeting or travel to represent a client?
‘Luckily that hardly happens. My wife is at home full time at the moment. Then we have a carer and a tutor. So, it usually would be very rare that I have to take time off work to deal with an issue at home’.

Parental Mindset Helps
Is there any special way in which his profession has helped him to deal with the challenge?
‘I don’t know whether it has anything to do with one’s profession. Like I said earlier, many parents stay in denial for too long. Whether being a lawyer makes you more pragmatic, I don’t know. I don’t think it matters. Even lawyers could be in denial. It’s more of the psychology of the parents than the profession.’

Ah…Government!
Could government be doing more?
‘I probably would have asked what government is doing about health care generally! In every society, they expect government to provide for citizens by way of heath care, but here in our society even basic health care is not what it should be. It probably would be optimistic to expect that something like this would be done when they haven’t done enough for the health’ he points out quite logically.

Tough Choices…
Sooner or later, the Emuwas will have to make a tough choice about whether Dubem should continue his education and intervention abroad.
‘The questions is: do you want him to be too far away from you or do you relocate?’
The downside of sending an autistic child like Dubem abroad is that he suddenly finds himself in a different environment. Autistic children like a pattern to their lives.
‘Some can go to boarding school if they have progressed enough, but again, they will be away from people they are close to. And there are challenges of adjustment, even for normal kids.’

Happy Endings…
Are Dubem’s parents apprehensive about his level of independence later in life when they might not necessarily be around? Or would his siblings take on the responsibility?
‘Well, one hopes that he would be independent to live on his own. With autism you never can tell how far they would go. Some people improve to the point where they can live on their own. Some never do, but you cannot tell at this age. He is only nine years old. You can’t tell now what he would be like at 20, you can only hope for the best. We can only do our best while we are here. Other than that there is nothing more’.
As Theo points out, ‘To be independent is less about learning Physics and Chemistry, than learning how to manage yourself and your home. Some learn how to drive a car; they often have skills in certain areas, so you find them an occupation that taps into those strengths.
‘There’s no reason why he can’t look forward to a full family life himself’.

Fact Box
How to Tell if Your Child is Autistic
Dr. Laraba Anga, Consultant Paediatrician with Lagos State Teaching Hospital, told FUNKE ABOYADE some of the telltale signs:
•Don’t interact normally
•Not socially connected to their peers, parents or siblings
•Don’t show much emotion
•Delayed speech
•Poor eye contact
•Stereotypic actions – tend to repeat things
•Don’t play normally
•Don’t engage
•Convulsions or epilepsy could come later
Dr. Anga holds a B.SC from London University, an MBB CHIR from Cambridge University, a Diploma in Child Health and is a member of the Royal College of Physicians, as well as the Royal College of Paediatrics and Child Health.

 

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