Iron Ladies

During this attachment, autism made up a large proportion of cases that i have seen. Therefore, in order to know more about this, i borrowed a book from the NETWORK which is a resource centre (NGO) for disabled children and their family. The name of this book is 'There's A Boy In Here'. This book is written by both the mother and the autistic child about their experience and hurdles that they have been through. When i read this book, i roughly got the idea of how taxing is it for the parents to deal with this children but when i interview a mother of an autistic daughter, it even strenghten the idea as what has this mother whom i interview was almost the same as the experience written by the author (Judy Barron) of this book.

After the interview with the mother of child with Down Syndrome last week and now a mother of an autistic child, i wondered that where do they get the strength to overcome this. I tried to imagine myself in their positions and wondered how would i handle but all i got was it is just not easy for me. For me, they are iron ladies. They not only take care of their daily life, but they use what Dr. Amar used to call 'strong love' to educate their children with special need. I just do not know how to put their effort and strength in words but all i know they really deserve compliment. When everything is on the right track, they started to help out other parents with the same problems.
There is one very basic principle that one of the mothers use it to encourage other parents. If u want to help your child to overcome this condition (disorder), please help yourself first. Help yourself means that u got to accept this in the first place then the social stigmata.Just these 2 stuff would take you a long time to overcome. Then only u can start training or educate your child.
i really hope that we are able to do something to make life easier for them.

Faith, Love & Charity

Again, i was given a chance to follow my supervisor's clinic. I really like to see the way he approached different patient. It is so much different from other doctors and so much for me to learn.
One of the case i saw during this visit i saw was a 10 ten year old boy with Duchenne Myopathy. Usually this kind of patient will not live long and most would pass away at the age of 20. Therefore, my supervisor tried to find out whether the parents had told their child about the fact that he was going to 'leave' soon. As expected, the parents were not wiling to tell that cruel truth to their child but my supervisor adviced them to do so as this would deprived the opportunities of the child to fulfil his own wishes. He might have a plan for himself in the future and if he never got the chance to know that his life would not be that long, by the time he found he could never fulfill his dream he might blame or even condemn his parents for not telling him. Besides that, he is already 10, it is good to tell him as early when he is mature enough to face that so that he is given sufficient time to fulfill his dreams due to fact that most like he would not be able to move both his upper and lower limbs at all by the age of 16. Eventually, the parents accepted the advice but they wanted to have more time to think about it. I think the parents must have struggled a lot to accept his fact themselves and now they have to overcome another hurdles of telling their son. It is not easy but i know the parents will finally make a decision that they think is the best for their son.

The other case which i was quite sad about was another case of myopathy. The parents of the child had lost confidence in the doctors who carried out the muscle biopsy done on her child as the doctor retrieved adipose tissue instead of muscle which wasted all the effort and pain that the patient had gone through. Besides that, she also did not want to send her child to physiotherapy again as believe more in only traditional massage. I do not mean that traditional massage is useless, but i am very confidence that the physiotherapy can really do 'something' for this patient as i have seen quite a number of successful cases. However, it is hard to gain back the confidence from the parents once they had lost it. Thus, i think patient education from the very beginning is very important regardless of the disease, investigations or management. Anyhow, all i can hope is this parent would change her mind one day and do not give up.

Evolution

In 'Heroes', a very popular american series, some of the people have evoluted and have some kinds of special ability. In real life, i believe that this occurs among people around us as well.

E.g. schizoprenia and autism, though these are considered as diseases, i personally feel that these diseases are a kind of evolution of the patients as a protective measures. Why i said this is (just personal opinion), people who get schizophrenia are usually those who are less outgoing, lonely or may be feeling helpless very often and hence they develop this hallucination or illusion e.g. an imaginary friend to help them get through all kinds of situation. There is a movie 'A Beautiful Mind', which is also the best picture Academy Award 2002. This movie is about about John Forbes Nash, the Nobel Laureate (Economics) mathematician. If he did not have his delusional friend that accompanied him throughout the years he would not be survived so long 'alone'.

As for autism, this brain disorder is on the rise in recent decades and the prevalence is about 3 per 10 000 of boys. In Malaysia, the rate is highest among Chinese boys with professional and well educated parents. The main characteristics of Autism are impairments in social interaction, impairments in communication, restricted interests and repetitive behavior.

On my 3rd day of attachment, i observed a session of speech language therapy by Dr. Richard Logan for an autistic child. On my first impression, the child appeared to be so normal to me. He was a bright little active child who was able to converse in both chinese and english. During the session, i found out that the child , who was only 4 years old, he was able to read 2 different english books with so accurate pronunciation and recognized so many vocabularies that i think i would not be able to read until i was 10. However, i was told later by the speech language pathologist that this child was actually having hyperlexia (a syndrome observed in children with precocious ability to read words, far above what would be expected at their chronological age or an intense fascination with letters or numbers, having significant difficulty in socializing and interacting appropriately with people). Though he can read very well, when he was asked about the information on the words that he read, he was not able to answer and sometimes he did not understand the questions asked and kept repeating of what was asked (echolalia).

All these make me think that it was also an evolution going on with these autistic children. Since most of their parents are professionals, they may have higher expectation of their children and without realizing it, they have attempted to accelerate their speed of development until it becomes abnormal. These children, in order to achieve their parents' expectation, have outgrown their ability and thus, become autistic. Again, this is just my opinion.

My supervisor, also has his own theory about Autism. His theory is more of spiritual and it happens even during in utero. During pregnancy (especially unplanned pregnancy), both the parents may have the thought in their mind telling the fetus, "why do u want to come at this time?" " This is not the right time you should come.", "This world is ugly. i do not know how are you going to cope." and other stuff like that, and this may have impregnated autism in the soul of the fetus. Therefore, he advices us when we are pregnant, or even before that, try to tell our babies in utero that "although this world is ugly, we both parents will help and guide you through it," etc. Perhaps things would be better then if we have more positive mindset?

Listen To Their Hearts

When i was planning for the attachment for this holiday, i only thought of either going overseas or any other place which is just not Ipoh but i think i am just fated to stay here to do my community based paediatrics attachment .
Nevertheless, this is not as bad as i think because i am attached to Dr. Amar who is so much an inspiring figure to me. He is just an extraordinary person that his knowlege is boundless and to me, he is a TRUE doctor!He gives me a lot of freedom in arranging my own schedule and the trip he brought us to Parit centre was indeed meaningful to me.
Though i only started my attachment for just merely 3 days, i have really learnt a lot more than what i have learnt so far in the ward for the past one year. I found that this attachment is really eye opening for me.
I did an interview with a mother of a child with Down Syndrome who again, gave me a lot of inspiration. From her, i realized that there is still much to be done to educate the community about the the children with special need. I am going to put up part of our interview with her just to share this with you people. I hope you can learn as much or even more than what i have learnt from her.

Interview with a parent of a Down Syndrome Child

Q: What are the social stigmata that you face? How do you cope with that?

A: When I bring him out, other people will throw me a different kind of look. Some of them are even scared of getting near him. I still remember there was one time when he was young, I brought him to a shopping mall and he was playing with other children and I was watching them quietly from behind. Suddenly, a grandmother of one of the children came forward and pulled her grandson away and warned him that not to play with the mad child, or else he will get the illness as well. So my son was wondering why all of a sudden, his friends did not want to play with him anymore and when he turned to me and asked why, the grandmother only realized my existence and felt so ashamed and walked away quickly. I feel quite sad but there is nothing I can do. It is just their opinion and as long as I know my child is harmless to anyone and I treat my child normally, that’s good enough. Nevertheless, I hope that the community should be educated on this issue and become more considerate to these children with special need and not rejecting them like that.

Q: What is your most memorable experience with your son?

A: When he learnt to walk at the age of 3 on his birthday. I was so surprise and yet unbelievable as he was still not able to crawl and even more amazing was that he was able to run the next day. It was like a miracle to me.

Q: What is your advice to other parents with children of special need?

A: Never give up! Please have faith and in your children. Though your children may be of special need, they can grow and develop well if you nurture them appropriately since they are young. Please treat them as normal children. If your treat them as normal, the will grow and develop like normal children. They need your love and support. Please do not give up.

Q: What do you think that the government can do for the children with special need?

A: The government should not only provide care for children up to 19 years old but also care for those above 19 years old. The system now is in such that the children with special need who are above 19 years can no longer kept in the special schools and most of the time, the community does not provide job opportunity to these children and thus, the parents can either keep this children at home or depends on NGOs. But how much can the NGOs do for us? They have limited fund, man power and resources but if the government gives support to the NGOs and things would be different and a lot can be done.

Q: What do you think that the community can do for them?

A: Please do not have prejudice on them. Please accept them as normal people.

Q: What is your advice for us as medical students?

A: When you become a doctor in the future, please do not act like the doctors I had brought my son to see when he was young. I took him to see quite a number of doctors and I had quarrel with them because they told me that my son was hopeless, he will never grow and he will only remain like that for the rest of his life. I was so upset and argued with them that my son is all right and he will grow normally and see how my son has achieved so far. He is doing great! Therefore, please stand on the patient’s parents’ view and understand them and give them support. This does not mean that you should give false hope to them but to tell them the facts and help them to build up faith and hope in their child as well as to help them to overcome problems and hardships that they face.

I do not know how much inspiring is this for you but i hope you would get something from this. Let's work together by just giving a little consideration for them and please stop having prejudice on them!This little work that we do may change the world to become a better place to live.

PUREST CALCIUM

That day when my mum was talking to her colleague about something about their calcium supplement, suddenly, another colleague (88) heard their conversation and approached them,

“ U are also taking calcium arr?? Which brand is u taking ar???”

“ Dunno wor… It was given by my doc from the hospital” my mum said.

“U took it from the hospital arrr??? Aiyo! Hospital one no good one arrr… They put a lot of other chemical substance into it, got side effect one, no good for health.” 88 said.

“How come? It is provided by the hospital pharmacy and prescribed by the doctor worr??” my mum defended.

“Aiya! The doctor only knows how to treat diseases marrr, they dunno much about supplement one… I got one friend who is a pharmacist told me that the best calcium in Malaysia is . Have u ever heard about it? The calcium tablet of our company is the purest and the most original one, no other chemical substance added.”, She continued, “U should stop that calcium given by your doc and try this. I am a member; I can give your discount.”

“For me, whatever brand is it, it’s still the same larr… no need to change larrr. Anyway thanks a lot.” My mum responded.

“Where got same? This is for your own health, how can u not choose the best for yourself? Try this larr…Bla bla bla” that lady kept promoting and my mum got fed up and just walked away with her friend ignoring her.

Doctors do not know much about the ingredient in the drug and this lady actually knows more than doctors?

The ingredient for calcium is different between brands?

The calcium prescribed in hospital got side effect?

What did she meant by most original and purest?

I supposed the purest calcium that she meant was actually raw material collected from limestone.

Since nowadays everyone is emphasizing taking the most natural and original substance, I had even imagined that one day that I would bite on a piece of limestone for my calcium supplement!

By that time, the will be new production line for limestone factories!!!!!