My 27 year old sister, the toddler

Let me explain; My twin sister (senior by 7 minutes), is mentally challenged. She was diagnosed as ‘brain damaged’ at approximately 8 months old. That’s all they said and my mom was left to deal with it at her own devices. We didn’t have easy access to specialist care back then, but my mom saw doctors more than she can say.

She found a school/ day care for special needs children when we were in primary school. It helped a great deal but as my sister got older life became harder for everyone. As far as I can remember, she woke up in the early hours of the morning and each of us took turns to look after her (even me as a 7 year old). She’s hyper so the house was in a constant whirlwind.  She started getting seizures when she became a teenager. Eventually a psychologist encouraged my mom to send my sister to a boarding school for special needs children. It took a lot of convincing for a mother to ‘hand over her child’ but it was in the best interest of my sister and also for our family- My brother and I also had to endure the emotional distress of seeing her ill (she screamed and cried while banging her head against the wall and there was nothing we could do but watch) and tantrums she threw (literally threw i.e. the furniture).

Anyway, just recently I made a connection between her behavior and autism. She was never officially diagnosed with this however.

Someone asked me what her abilities were and what ‘age’ she acts. Her abilities thank God is vast but I couldn’t pin point an age. Since my son turned one, it hit me like a train; my sisters a toddler!

She can walk but not talk, we know what she needs i.e. when she’s hungry etc.  She’s not potty trained but we take her to the toilet when we think its time. She understands certain things and just like my 15 month old son; she pays attention to our requests IF she feels like it. e.g. you can’t ask her to pass the remote, but tell her to come fetch biscuits and she’ll come running. She can’t feed herself with a spoon but chips scattered on the counter is fine.She unpacks the cupboards when she’s home, looking for luxuries but we keep it out of reach or hide it lest she overdoes it. Once I was pleasantly shocked when she pulled my arm and tapped on the opaque shopping bag we left in the back room. Not even I knew what was in there but she did! It was chips my dad bought her, she wanted me to open it because she doesn’t know how the zipper works.

I’m so grateful for the facility she’s at now. They have a program that they follow and she learns things. The facility itself is very privileged, underfloor heating, a swimming pool for therapy, loving staff. Her diet is healthier than ours, food donated by A Grade producers. It takes a huge burden off our shoulders knowing that she’s safe and has 24/7 specialist care that she needs.

A few months ago she regressed had a set-back which really scared us. She wasn’t the hyperactive, noisy hurricane she always is; she was like a Zombie. She was very somber and when I visited her, she looked at me straight into my eyes with such awareness, I froze. I saw sadness but acceptance, it’s hard to describe.  I broke down crying and asked her to please tell me whats wrong, I begged her to just this once say something, show me, anything. It was like she knew something and wished she could tell me, honestly I thought she was going to die.  I was helpless. She was content with the short cake chocolate bites I brought her.

She’s better now and back to ignoring me until I have desert in my hands.

I don’t know where I’ll be in the afterlife but I have one request. Even if it’s just one day I get to spend or even just an hour; I’d like to have a conversation and get to know the twin sister I do but don’t have.

Woodside Special Care Center

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8 responses to “My 27 year old sister, the toddler

  1. This was deep, raw and beautiful at the same time. You guys sound strong to have had to deal with that and it must be frustrating for your sister as well to not be able to communicate with you all. The last paragraph…I hope that request is fulfilled 🙂

    • Shukran, I almost didn’t post it because its so personal but I felt I had to. I’m glad you appreciate it.
      And yes.. In Sha Allah, Ameen 🙂

  2. A touching story indeed!
    To add to the info: I would like to say that from the medical and biological point of view, the one who is born next (in twin cases) is the oldest.
    Vassalam.

  3. Yes, technically the one born first is considered oldest as this is how the way looks at it. (For the sake of record of birth)
    But actually what happens in the womb of the mother is that the first egg is fertilized first, and then the second egg. In the embroyological process, the one fertilized first goes down, and while delivery it sends the younger one first and then the older one comes out.
    The first egg is Twin B, and the other one is Twin A.
    I am not a medical student but a student of the Qur’an and I learned this in one of my tafseer classes. 🙂

  4. Uff…..slight correction in the previous comment:
    Yes, technically the one born first is considered oldest as this is how the WORLD looks at it. (For the sake of record of birth)

    • Wow that’s quite a revelation… hard to think of myself as the eldest (even though my sister was like a baby our whole life). I always considered myself the ‘baby’. Either way, Allah knows best.

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