What I experienced with my autism sibling as his caregiver

First post: Mission: Two Weeks Without Mom
Second: The One Where the Autism Siblings Were Alone Together 

Same advice as last time…read in parts or keep 10-15 minutes aside. Or 20 if you read verrrry slowly.

The One Night Where Dee was Dancing
One evening, Karan decided he was going to cry his heart out. Now he has these rare moments where he cries properly with a quivering mouth, real tears and his ears go red. He started crying. For real. I freaked out, called Mom and asked her what could be wrong (he’d eaten, gone to the loo…everything). “Put on his favourite songs,” she said. I paused Dollhouse, and looked and found a CD of…Dabangg. Yeah, really. And so that evening for one hour, if anyone looked through our windows, they would’ve seen me jiggling away to Munni Badnaam Hui. Seriously. I decided since he couldn’t see Salman Khan and Malaika Arora Khan, by the billions of blistering barnacles, was I going to give him a show (to be clear, I was channeling Salman Khan in my moves)! I couldn’t move him upstairs and play it on my laptop since it’s generally a bad idea to try and bug him further than he already is at the moment. After a while, he calmed down and could be found rocking to the tunes of the song himself.

The One Where Dee Wakes up at 5:30am. Every Day.
When he finally got better, the week starting December 18 (a Sunday) was when I started sending him to school again. His school is in Sharjah, off the infamous National Paints roundabout. I live in “new” Dubai (Springs/Meadows). Yeah. That. Mom says she wakes up at 5:30am and advised me to do the same. I do. I wake up, brush and all the usual morning stuff before heading down to make Karan’s snack for school. Right now he’s in a pasta phase (apparently he’s been refusing his sandwiches) so pasta it is. Every day. Fresh. Little bugger. Once the pasta is made, dishes are washed and all that, I wake him up. Brush his teeth. Give him breakfast. Get ready. Get him ready. Jet off between 7:30am-7:45am. On the third and fourth day of the week, my alarm fails me (read: it correctly follows my “snooze” button instructions) and I wake up only by 6:30am. I don’t know how I manage but I do (in a rush) and leave by 7:45am or 7:50am max and make it in time for school (time = 8:30am). Then I wait till 1pm when I have to pick him up. Then drive back home and go back to work (feeding, cleaning, cooking, cleaning, dishwashing, clothes washing, vacuuming, bathing, feeding). 

And the dishes?! Where do all these dishes come from? There’s just two of us, for crying out loud! I shudder to think of how many dishes there are when four of us are in the house. I’m very sporadic with my dish washing otherwise. To be fair we have a dishwasher, but for some reason, the day after my father left…it stopped working. Ummmm. Yeah, I didn’t do ANYTHING. It stopped on its own on the day of the height of my flu situation. Poor, sick ol’ me washed EVERYTHING.

The One Where Dee Feels Lonely
Wow. It’s lonely here. You have no idea. I knew Mom felt alone but I experienced it first-hand now. It’s insanely bad. There’s nothing, you know? You wake up, take him to school, either finish grocery shopping or quickly have some breakfast while you wait, drive back home on the same, deserty stretch that is Emirates Road every day, cook, clean, wash, try and put your feet up for a little while and sleep. Rinse and repeat…forever. You feel so tired at the end of it, you don’t feel like doing anything else. The thought of even blogging for me was repugnant during this time because I was just so bloody pooped. And I love to write; I make my living by writing, for heaven’s sake! And to be honest, no one else was there. I don’t know how to explain it…I was still tweeting for example, talking to friends/chatting…all that. But there’s this sense of isolation that prevails when you take care of a child with special needs. Two friends visited me during the 16 days I was alone…one to bring me cake because I was having flu-cravings (she claims this does not exist…I do), and the other drove all the way from Deira to my place to pick up a very heavy water bottle to place on the water dispenser since my back issues prevent me from doing so myself (thanks Shruti and Ayub!). Every one else is busy…I don’t blame them. People have lives to lead. But when you are caring for a special needs child, they lead their lives as it was with no thought for you (as it should be…no one else is responsible for you or your charge. Never expect. EVER.) and it just makes you feel more alone than before. Bear in mind most of my friends have cars and I would’ve liked some company sometimes… but you know. Shit happens.

The One Where Karan Goes Out
I was very conscious of the time that he was sick and I was sick that we didn’t go out very much. As soon as we both were in varying stages of flu recovery, I tried taking him out. Once I ended up at a café on Sheikh Zayed Road with a few friends…he ate a bit from my plate and I left in time to get him home for his dinner. He was alright during that time…apart from wanting to grab the food off my plate without waiting for me to cut/scoop/feed. Impatient boy. Another time, in an impromptu fashion, I went to a tea joint near my house after a friend tweeted and said why not come over. I demurred at first…what if Karan didn’t like it? Friend said come anyway. I was still divided. Called up Ayub and asked his opinion…he said gooo! I went for about 40 minutes. Karan was alright…didn’t want to eat the cake I ordered though. He scratched the beejesus out of the rattan chair (he likes the texture) and eventually I left when I thought he was nearing the end of his tether. I’m glad I went both times though…my way of thinking is he needs to be exposed to different things and if people have a problem (ie other people at a public venue), then I am there to fight for his right to enjoy the same things they are. Innit?

The One Where We Eat Popcorn
Movies. I’ve talked before about how I want to get cinemas in theatres to have special needs showings like they do in UK and I haven’t been able to follow up on this yet, but this is still something I want to work on and I think I’ll have more time in the new year to do that. But till then, I brave the crowds and hope I find people in the theatre who will be understanding. But even so, why make it harder on myself? I pick an animation…Puss in Boots (or Cat in Boots as it’s called on the posters in the UAE). I pick the first morning show on a Friday. As empty as it can be, the better. Still, there are about 6 people in there apart from us. Karan devours that popcorn bucket like a starving man (he wasn’t Mom, I WAS FEEDING HIM I SWEAR!) and watches, closes his eyes, then watches again. Towards the end, he decided he was going to join Puss with the dialogues and went “Mmmmmmmmmmmmmm” and “AAAHHHEEEMMMMMM” for extended periods of time, but most of this was during action sequences so no one heard him. He did try it during a dialogue-y scene, and while a few kids did look back, they didn’t say/do anything since Karan wasn’t making it so that they couldn’t hear anything. He did seem to like the music though, which is only a good thing.

To be continued…

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