Saturday, May 23, 2009

My Little Sister

I actually deliberated for a very long time with myself about whether or not I should write this. But, after a public reading event I participated in last week, I was given some advice by someone I met there who said, "if you get worried about how people would react to your written works, you will never be a good writer." So, in the spirit of what he told me, I have decided to write this post.

My little sister was born in 1995. She is the youngest one in the family and was diagnosed with Down Syndrome disorder when she was born. It's a chromosomal disorder that affects the child's cognitive abilities and facial appearance (in varying degrees). It was her who inspired me to write a "Work of Fiction" which eventually got published.

My sister grew up as a happy child. She learned to walk when she was a year and a half, I believe, and learned to talk when she was 3. In other words, a bit longer than what the average time it would take for a normal child to master these two vital techniques. But, she managed to develop a refined sense of humor much faster than any kid I know could. She always managed to make us laugh in the house. It was such a raw sense of humor that you could never really see coming.
For example, I used to go up to her kiss her and ask curiously,

"how much do you love me?"
"as much as the sea." she would answer in the most nonchalant tone.
"and how much else?" I would ask.
"as much as the sky" she would reply in the same tone.
I would then see how far I could take it and would repeat
"and how much else?"
she would pause for a few seconds and then say,
"as much as the Boat" in an aha! kind of tone.

I remember she used to love watching music video clips and liked to dance like the girls on the clips did. She loved to sing as well. And reenact her favorite moments of the Khaleeji Soap Dramas. I remember this one time I was with my aunt upstairs, and all of a sudden my little sister comes barging in wearing a small hijab that she put on her head and started shouting at me. I knew she was reenacting a scene from this 'mosalsal' or Gulf Soap drama we saw together on TV that afternoon so I just played along. I tried to calm her down by apologizing. But she continued shouting back at me and finally said "NO! I am divorcing you!". At that moment my aunt and I exchanged surprised shocked glances at one another. 'I don't remember seeing anyone on the show we watched this afternoon say that' I thought. Then I heard myself say, "but why!?" and she replied "... cuz I am pregnant!" then simply walked out after leaving that bombshell of a line. At that moment my aunt and I just burst out laughing... My sister was around 8 yrs old at the time and she just had the biggest imagination ever.

The day I was suppose to leave the country to head to the UK to attend my first year of University, I came back home at night and went straight to the sitting room downstairs to say goodbye to my little sister whom I knew will have to go to bed soon. As soon as I walked into the sitting room, I found a bunch of my little cousins there with my sister and they all came to hug me and say goodbye (one of them asked me to get her a present when I come back right after the hug) but my sister refused to get off her chair and say goodbye. I walked up to her and said:

"I am leaving habeebti, don't you want to hug me before I leave?"

She did not even acknowledge what I said. I won't lie, I was a bit hurt by that. I kissed her really quickly and ran up to my room to pack my bags (last minute packing is my thing). As I was closing the last suitcase, sitting on the floor, trying to figure out how this number lock works, I heard small footsteps in the corridor behind me. Before I had a chance to turn around to see who it was, I felt these small arms wrapping around my body from behind. As soon I saw the arms, I knew it was those belonging to my little sister, who kept hugging me real tight for awhile. She then kissed me on the cheek and left the room to sleep.


While I was in the UK studying to get my law degree, I used to get phone calls from back home every now and again giving me updates of what is happening there. I grew concerned when they told me that my amazing, sensitive, funny little sister has stopped speaking. At first they thought it was her just being very moody. I feared something worse but decided to wait it out, maybe it was my little sister's form of rebellion, I thought. Weeks passed, which became months, and still not even one word was uttered by my little sister. It was like she has taken a vow of silence. I went back home on one of the holidays, saw it with my own eyes. She would communicate with hand gestures, she would stare at her hands for a long time and would do repetitive movements over and over again. She would, for example, continuously stack her numbered cards in a pattern on the carpet (usually a square, sometimes rectangle) and would rock back and forth on her chair over and over again when a song comes on tv. She would also get highly irritated if you interrupt her continuous movements and sometimes, when we call her name she wouldn't even hear us. It was like she was in another world. My mom and other sister would get quite ticked off by this. They assumed my little sister was being arrogant or stubborn and to be honest, I don't blame them; at times I thought that too.


A few months after that, I was back in Cardiff to continue my University studies, my mom took my little sis to get her diagnosed by a child psychiatrist back home. I didn't know at the time about that. But I remember calling my mom one day and telling her what I feared... which is that my sis is showing signs of autism. She said no, the doctor told her my little sister was depressed and prescribed some antidepressants for her a few months ago. I almost flipped out. There is no way she was depressed. She was only 10. I asked my mom to please take her to another doctor and ask specifically to check whether she has autism or not.
After noticing my sister getting worse after taking the antidepressants my mom took my advice and took her to another doctor who was actually doing his doctoral thesis on autism and asked him to diagnose my little sister. According to the doctor, my mom's description of my little sister's behavior was an indication of an extreme case of autism. Since there is no definitive test for autism, nor any real definition of what autism is exactly ( autism is like an umbrella term for a spectrum of disorders or conditions ), one is therefore forced to rely on the parents assessment. What is known, however, is that autistic kids behavior follows a certain pattern and if it is not mitigated at an early stage it will only get worse over time.

Autism is usually identified in the time period before a child hits the three year old mark, but since my little sister had down syndrome (which affects her cognitive abilities) it was harder for my family and I to identify autistic behavior from down syndrome behavior. And to be honest, my little sister didn't show any autistic attributes until she reached 10 yrs old or so. Which makes me almost certain her autism is not the typical kind. What she has is, I believe, called Regressive autism which basically means, the child grows up and develops their speech and social skills normally but then begins to regress into their own world and lose those skills. This is what happened to my little sister.

I came back from university and the little sister that I knew... the one who loved to dance and sing, who used to tell me her love for me was as much as the boat, who hugged me right before I left the country to study abroad ... was no longer there.

I guess what I am trying to say here is that... I miss my little sister...