A special child

My sister was born on the 19th of November, 1995. She looked like any, ordinary baby, though perhaps a bit smaller than average. I was six years old at that time, neither my parents nor I realised that there was something quite extraordinary about that baby.

We named her Mou. Although it was only a few months before my parents discovered the truth about her, I did not notice anything until she was three years old. I saw that even at that age, she had difficulty walking properly, and could say very few words.

I asked my parents about it. Though they were reluctant to say anything at first, they eventually realised that the time had come for their son to know.

My mother said gently, albeit mysteriously, “Your sister has Downs.”

What on earth was Downs?
My parents then gave me a simple explanation that my nine-year-old mind could make sense of. Since then I've learnt more and more about Down Syndrome. So for those of you as bewildered as I was then, let me tell you some basic things about it.

Down syndrome is caused by a genetic mutation. You know that all genetic information is stored in DNA molecules. These DNA molecules can be found in form of chromosomes. Chromosomes are found in the nucleus of most cells.

Normally, a human has a total of forty-six chromosomes in each cell of his/her body. However, a person with Down syndrome has a total of forty-seven chromosomes s/he has one extra chromosome.

The effects of this are clearly visible in my sister, Mou. She was nearly seven when she first managed to speak in full sentences. Since her muscles are slack, her words are still rather slurred. My sister has a slightly large tongue, characteristic with most Downs people. This interferes not only with speech, but with eating as well. Her slack muscles also prevent her moving with composure. However, her loose joints make Mou unusually flexible! However, Down syndrome people have suffered accidents because of their loose joints.

Mou, as with all Down syndrome people, find it difficult to imagine things. This becomes a problem when it comes to learning math, which involves a lot of imagination. But they have surprisingly good memories! It is an interesting fact to note that Mou knows all her times tables up to twelve, and can solve multiplication problems better than addition and subtraction.

However, she has special interests in arts. Her school gives her activities such as cutting shapes and pasting them onto a copy, which she enjoys doing. She also enjoys colouring in a colouring book, though she took some time to learn that Bananas are generally yellow, not blue! Mou also has a special interest in housework, and especially enjoys drying the plates and setting the table for dinner. Mou is passionate about our culture, and really enjoys singing, as well as traditional dancing.

As with any child with special needs, the biggest obstacle a person with Downs Syndrome has to face is the society. The society finds it difficult to accept a person with Down syndrome, just because s/he is a bit 'different'. People with Down syndrome have difficulty communicating with others, so they are often misunderstood.

Some schools are reluctant to take in such students, worried that other parents would not want to admit their child because they wouldn't want their child mixing with an 'abnormal' child. However, it has now become illegal for schools to refuse children only because they are not like 'normal' children.

In most cases people with Down syndrome also face difficulty in getting jobs. Job competition has increased, and only the best people are taken.

Mou is lucky in this sense that she has parents who are both doctors and understand her problem. However, in most cases in Bangladesh, the parents are not doctors, and are at a loss as to what to do with their child.

Dr. Shaheen Akhtar, Associate Professor, Paediatric Neurology, Bangabandhu Sheikh Mujibur Medical University (BSMMU) encourages parents with Down syndrome to educate their children in mainstream schools as far as possible. That is why my sister, Mou has been studying in ordinary schools up till class three. In this way Mou has been able to interact with other children, and her mind has thus been stimulated to develop. It has been, hard, especially as she gradually got promoted to higher classes, it became harder for her to cope with the increasing difficulty of her lessons. In the end, more than a year back, Mou was admitted to Caring Glory, a school that specialised in the education of children with special needs. There are children there with various disabilities, and Mou is by no means the only Downs child there. Mou is now taught a special syllabus designed for children like her.

It is of utmost importance to raise children with Downs in such a way so that they grow to become independent. A person with Downs is capable of doing almost everything a normal human can. It is just that a Downs person takes more time to learn, and that he/she needs a bit of extra help.

It is an unfortunate fact that such help is not easy to find in our country. A person be it a parent or a teacher needs to understand the Down syndrome child and his/her problems. But such understanding people are hard to come by in Bangladesh.

Here in Bangladesh is a lack of awareness and knowledge about this condition. There are also many myths and misconceptions about Down syndrome. For example, many people assume that if a normal person marries a person with Downs, they are likely to have children that also have Down syndrome. This is absolutely incorrect. A case in which Down syndrome is passed down through generations is extremely rare. Most times, it simply happens by chance. As a matter of fact, there are many occasions where two people with Down syndrome have married each other, and have had children which are perfectly normal!

A question I've often heard asked is, “Is there no cure for this disease?” Well, first of all I would like to point out that Down syndrome is not a disease. It is a genetic disorder. The two are not to be confused. People with Down syndrome are not 'sick'; they are perfectly healthy, thank you very much! As it is not a disease, there is no way to 'cure' Down syndrome in any medical process. Perhaps in the future, there may be some 'genetic' way to remove that extra chromosome. However, genetic technology has not advanced that far yet. Also there is much debate upon the ethics of such a treatment.

There is also no way of preventing Down syndrome for certain. However, it has been seen that the probability of a mother giving birth to a child with Down syndrome increases with her age. In fact, for mothers that are more than forty-five years old and giving birth to a child, it is a one in fifty-four chance that the child will have Down syndrome.

When I think about my sister, and the way the present society generally view people like her, I laugh at the irony. Mou's view of the society is perhaps the most impartial. If Mou was introduced to a king, and a common beggar, she would possibly beam at the both of them, and then drag them over and insist that they play 'Pretend Tea Party' with her toy dinner set!

By Iftikhar Azam

When I did an article a few months back on alternative Hindi soaps, I thought I had reached the pinnacle of lame television. I mean, how lamer could things get, right?

Well, then I moved to Texas. And I discovered. Hindi soaps were just the tip of the lame television iceberg. Because right here in the land of the free did I see some of the lamest television I have ever had the good fortune to see.

The news
Right off the bat, one has to understand that when there's no cable, you have to watch the local channels. That means virtually around-the-clock news. And if you thought that our deshi news broadcasters were lame, if you thought only ATN and Etv were worthy of criticism, you're wrong. Just turn on Fox @ 5 and you'll know. First they'll bore you with the weather. In fact, the weather comes on in the beginning, middle, and end. Then they're going to broadcast some tornado warnings. They will report 'baseball-size hail' and 'excessive damage' and show some footage of a poor cow being whizzed around in the wind. Then, depending on which channel you're watching, the anchormen and anchorwomen will move on to the real scoop. The murder. The vandalism. The little kid who got stung by a bee. And, if you're watching Fox News, you'll get a sneak peek at next week's American Idol.

My mother and I, because we have nothing better to watch on television, amuse ourselves by scouting out the lame features on the hourly news. Last week, ABC news was all about a runaway goat that had been taken away in police custody. The clip of five able-bodied police officers running after one lone goat down I-121 was enough to make even the coldest-hearted amongst us chuckle. Not to be left behind, PBS News ran a three-hour long feature on 'T-storm warnings'. I have no idea what a T-storm is, since it had the good sense not to plough through my part of North Texas, but PBS News wasn't going to let me off the hook that easily. Every other minute the BREAKING NEWS was the T-storm. Winds of 12 mph, scary-looking clouds on the horizon, the pitter-patter of rain…wow, that's enough to make anyone tremble with fear. If I hadn't seen quite a few kalboishakhi jhors in my life, I'd be cowering in my bathroom with a quilt over my head, in the off-chance that the roof would come cascading down on me.

The commercials
The commercials are in a league of their own. A survey (conducted by my mother and me) showed that three-quarters of all the commercials aired on the local channels had something to do with either cars or pills. Because Texas is apparently the Truck State, everyone needs a Ford or a Nissan or a KIA. And because the air is thick with allergens and pollen, every mother needs instant allergy relief medicine for her kids in her purse. Seriously, the amount of sanitization that goes on around here makes one wonder how the kids will ever develop their immune systems if they never so much as come this close to a cold virus. Then there are the pills exclusively for women ('Do women have to take the same multivitamin as men?' 'You mean, we have a choice?'), the ones exclusively for men ('Flomax is there to relieve all your weak stream symptoms!'), the ones exclusively for children, and the ones you take to soften your stool, relieve a headache in fifteen minutes, clear up a wart, and get rid of your athlete's foot.

The infomercials
Come 11 o'clock, you are assaulted by a barrage of infomercials. What are infomercials, you ask? Well, you must have seen the Asian Sky Shoppe commercials for AB King Pro and Magic Bullet and the Evil Eye Repellent. Those are infomercials, also known as 'commercials that inform'. People come up and rant and rave about the product in question ('SlimFast changed my life!' 'RevitaLift took ten years off my face and I feel GREAT!' 'Now with Instant Gro, I'll never have to worry about bald spots again! Thank you, Instant Gro!'). Sometimes they cry. Then the 'experts' come and expound the merits of using the product in question. This product will change your life, it will revitalize your look, it will change the way you feel about yourself blah blah blah. And then comes the 'pitch'. The people in the commercial will now throw a barrage of free offers and great deals in your general direction, so much so that within fifteen minutes you'll be picking up your phone and dialing that 1-800 number. It's no different from Asian Sky Shoppe, just more persistent.

I look forward to the day my dad calls that 1-800 number and Time Warner Cable comes and installs our cable with the 500 HD channels. I don't know how much more of T-storms I can take.

By Shehtaz Huq