The One Where Mom and Daughter Weigh In

Read the past posts here:

Devina’s Final Thoughts
I’m exhausted. And I’m only 24. Every day, mostly the only thought I had was: “I cannot wait to feel that soft bed underneath my body and rest.” It’s tiring. It’s draining. And when you have no help, it’s even worse. You’re assaulted by feelings of not having enough time for anything other than your responsibility to your child and to your house. You end up feeling guilty for not having enough time. You feel alone. Sometimes you doze off on the sofa, or your eyes feel scratchy when you’re driving on Emirates Road because the monotony of that route definitely doesn’t help your sleepiness. But you do it anyway because you have to and nothing is too much for your child (in this case, my brother, but he feels like my baby most of the time!). It hits you that what you would’ve normally done only for a few years of your child’s life, you will do forever. It’s not exactly uplifting but when you sink into bed every day having gotten the job done, there’s a sense of satisfaction and the hope that when you wake up the next day, you’ll do it well, all over again. When you wake up, yeah you’re worried today is the day you’ll collapse and just not be able to do it anymore, but…you soldier on. Because this is your child. And if you don’t support him/her and don’t fight for him/her, then no one else will.

Adita’s Experience
It was a nice change though in the beginning I was feeling very stressed and not getting sleep because I was constantly worrying about both my children. Then slowly I got used to it. Since every day I normally do things with and for Karan, throughout the trip I was feeling very empty, like I didn’t have anything to do. I felt lost quite a bit because of that. Even towards the end of the trip, I wasn’t getting sleep properly, not because I was worried but because I’m used to waking up all the time to check on Karan. It was nice to meet people and just go wherever I wanted without a second thought because otherwise I always have to think about what Karan will be happy with. So liberating in a way. Everything is always according to his routine, but here I was free to do as I wished. I was going out for movies, staying out for dinner with family and friends…but I think I’m so used to this life, I missed my routine too! After 16 years, because I’ve been doing everything according to him, even though I went out and did everything that is fun, I don’t miss that sense of social life I think. I was sort of waiting to get back to my routine life. But it was definitely a nice change to get a few days off.

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…

The One Where the Autism Siblings were Alone Together

First post in the series here

Read it in parts, or settle down with a cuppa for a bit.

DAY ONE (9/12/2011)

Okay 6am…why is Karan awake? Okay. He needs to use the toilet. I wonder if I can go back to sleep after this? I dozed off for a bit but my grandmother called a few times so we had to wake up. Karan is disoriented by this point. He looked confused about being in my room, for one. Then spent the rest of the day walking in and out of Mom’s room, trying to find her. He still hasn’t got the hang of grabbing the iPad to show me what he wants so when I gave it to him, he quickly navigated his way to the Grace app and selected Mom’s face. I couldn’t bring her back from Bombay in a minute, so we settled for Skype and a phone call. He just got more annoyed. I’ve lost count of how many times he’s left to look for her in all the rooms of the house and has come back to where I am, looking utterly disappointed. He’s still got a bit of a cold, leaving him slightly tired. 

DAY TWO (10/12/2011)

Karan’s still looking for Mom. Going to her room, sitting on her bed, waiting for her to appear. He refuses to talk to her on the phone or Skype. He’s angry, that’s for sure. I cook today…scary! I watch nervously as Karan bites into my chicken curry. What if he turns up his nose at it because it doesn’t taste like Mom’s? But he eats and seems to like it. Whew. But this is insane…I look at all the dishes piling up and how much I’ve to clean and it seems insurmontable. Why are there so many dishes?! Why does my father not help clean up?! Oh wait, he never does. But…I now see how much work there is in the house. I’ve even put the dishwasher to work and empty it at the end of the day. I’m pooped by the end of the day and just want to sleep!

DAY THREE (11/12/2011)

Karan wakes up again around 6am. I can’t handle it…I go back to sleep and he walks up and down the room as I probably snore my way through for a few more hours. Today I don’t cook; there is enough left over from yesterday. I do walk downstairs to piled up dishes…what a surprise…my father hasn’t done anything. Again. I clean up behind him and after Karan’s dishes, go out to the garden to pluck some tulsi leaves to make a homemade cough remedy. But then I have to put the clothes in the washing machine. For this I’d written down instructions on how to use it (yeah I know…I knew how to use the washing machines in Sheffield and London but those seemed far simpler!) and followed them to the T, hoping nothing funny would happen to the clothes. But everything seemed to go well. The clothes were clean at the end of it, which is great. Karan has stopped waiting in Mom’s room but he still asks for her on the iPad. Uh oh…I’ve started coughing. I hope I don’t fall sick…when I’m sick, I’m pretty much useless.

THE NEXT 10 DAYS

I give up trying to write every day. I’m just so knackered all the time! I told a friend I didn’t mind tweeting because outbursts in 140-characters only seemed much less of a task than actually doing any work. I did fall sick…Karan essentially passed on his cold to me.

He eventually stopped looking for her constantly. Although he did occassionally ask for her by navigating to her picture on the iPad. Then there was the massive meltdown night.

To be continued in next post…where instead of days I write down incidents that I want to share.

Mission: Two weeks without Mom

Not many people understood. “I’m taking two weeks off from work in December,” I said. “Oh where are you going?” they asked. “Nowhere,” I replied. I was staying in Dubai and planned to spend these two weeks off looking after Karan while my parents went to India. It was hard as it was to get my Mom on the plane to be honest. “I’ll be more stressed out leaving you two!” she said to me. Go, I told her. I kept forcing her. Telling her that once she went, she’d have so much fun she’d want to leave us all the time.

Bear in mind my brother was born in February 1996, and this was the first time in nearly 16 years she has left him alone for more than a few hours. Nearly 16 years without a break. Let that sink in your brain before we move on.

She pleaded me not to tweet/blog about her trip while she was gone (because she didn’t want anyone to know it was just Karan and myself at home). So I didn’t. But I recorded my experience during those two weeks and now that she’s back, I’m going to post them as my insight into trying to truly be Karan’s primary caregiver, house-runner and general all-round superwoman (that’s her, not me…I was just trying!).

Allonsy!

“You want to update…Twitter?”

“I bring you to a paradise planet two billion light-years from earth and you want to update… twitter?”

“I bring you to a paradise planet two billion light-years from earth and you want to update… twitter?”

A non-timey wimey quote that made me chuckle… To be fair to Amy Pond, I’d want to update Twitter too!

Dialogue goes like this:

Amy: Have you seen my phone?

The Doctor: Your phone?

Amy: Yeah.

The Doctor: Your mobile telephone. I bring you to a paradise planet two billion light-years from Earth and you want to update… Twitter?

Amy: Sunsets, spires, soaring silver colonnades. It’s a camera phone.

The Doctor: On the counter by the DVDs.

Amy: Thank you.

Participate in a special Sports Carnival + the #manzilbooks update

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That’s just a small fraction of the books that was loaded into the bus that came to pick it all up a few days ago. I want to thank everyone who donated their books to raise money for Manzil. I had nearly 2,000 in my house, and my father for one, is extremely happy that his storage room is empty now so he can stuff his things back in! I also picked up the books from Wild Peeta; a very big thank you again to them for letting me fill their shelves with the books we were collecting (I’m going to still collect until January, so please keep donating!).

Okay, so when IS the booksale? Many people have been asking me and I’ve been quite puzzled about it myself. After loads of delays, I’ve been told the plan is to hold it during the school’s Sports Carnival. I’m attaching the information given to me about the event here, sent to my by email:

Our theme for this year is “Together We Can”. To promote the same, we are organizing a Sports Carnival on Saturday 28th January 2012, from 10.00 am to 5.00pm, at the Khalifa University, Sharjah.

We are inviting mainstream and special needs schools from the U.A.E to participate in various activities. There will also be different kinds of stalls and games. The stalls are sold for minimum amount of AED 300. This is in the form of a donation. You may choose to pay more.

Please come forward to be part of our team to show the society that you care. Entries for participation will be received on or before Thursday 22nd December 2011.

And the formal letter that invites participation from members of the public:

invitation_for_Stalls_-_11-12.pdf
Download this file

Please spread the word to anyone whom you think might want a stall at the event! Thank you 🙂

The image of women in advertising

I can’t recall who tweeted this link a few days ago (sorry!) but when I clicked and started viewing the video, many random thoughts flew through my consciousness. I’ll attempt to bring these thoughts together in a coherent whole:

The video discusses what advertising says about women, and how it’s most important what they look like. When Jean Kilbourne (the speaker in the video) mentions how advertising and the media show is the “ideal” women are expected to achieve, I agree whole-heartedly. It’s insane the number of images we see every day, in magazines, in movies and more, where the woman is drop-dead gorgeous, no flaws, and no pores, as Kilbourne points out. And of course, forget feeling guilty when you don’t like that, it just arouses feelings of shame within you. Ashamed of failing and of not being “beautiful”. Women base their entire self-worth on how they look, thinking no one will like them if they don’t fit that ideal. Heaven knows I felt like that constantly in my teenage years, where it was so bad I couldn’t even bear to look at myself in the mirror because I didn’t look anything like the women I’d see in advertisements every day (I still don’t!!!). While that constant sense of zero self-esteem doesn’t exist anymore for me, even now in depressed moments I feel butt-ugly. 

And in the video…making Jessica Alba look smaller?! Ummm she’s really small already! Leave some curves on the woman, for heaven’s sake!

Objectification of women is another issue. The video shows women’s bodies morphed onto alcohol bottles and cars; things like that. Self-esteem is one thing, but violence towards women is potentially a result of ads like these. Definitely not a direct causal link, as the video points out, turning a person into a “thing” is just the first step towards justifying violence towards him/her. A slight detour here, albeit related; this is a tweet I posted yesterday…read the article and tell me you’re not shocked by what lad’s mags are promoting:

A bit of Googling led me to this quote in an article also written by Kilbourne:

A recent Wall Street Journal survey of students in four Chicago-area schools found that more than half the fourth-grade girls were dieting and three-quarters felt they were overweight. One student said, “We don’t expect boys to be that handsome. We take them as they are.” Another added, “But boys expect girls to be perfect and beautiful. And skinny.”

What that student said? Yeah. Many women and men believe in that concept. So we spend a lot of time trying to fit that ideal that men often want in their partners. So listen up women: if the man tells you you’re fat and he’ll dump you if you don’t lose weight, YOU dump HIS sorry ass.

Looking good and feeling good about yourself is different from your body size. Yes, being obese is a health issue…I will not deny it, so it’s important to take care of youreslf and make sure you don’t face cholestrol issues or diabetes or something. But even if you have a few lumps here and there, even if your body isn’t that perfect hourglass…it doesn’t mean you’re not healthy! Focus on your health, then your body size.

Rant over.

EDIT: After reading my post, this is what a friend on Twitter posted, and I whole-heartedly agree with what she said.

Other posts on my blog related to women’s issues:

The issues of diet and expenses when dealing with autism

I harp on so much about autism awareness and how I think there’s not enough information about it out there in this region, and how there needs to be more resources for families…well, I read something last night and then again today that sort of proved my point (in my head anyway).

I saw this tweet last night, clicked and started reading. Dealing with autism on a daily basis, we’ve heard and seen it all. Including the idea of gluten-free diets, gluten-free casein-free (GFCF) diets and more.

Many years ago, we took the decision to put Karan on a GFCF diet. He was quite strictly controlled for many, many months. We saw no difference from before the diet and after, and eventually decided to re-introduce gluten and casein back into his food. No difference whatsoever. We realised there was no point in putting so many restrictions in front of Karan since it didn’t affect his behaviour one iota.

The doctor in the article refers to 90% of children with autism having milk and wheat allergies. While it does not link to what study these findings are based on, I never knew it was conclusive, ie that dietary changes most definitely affect “autistic” behaviour. I did know that some people think changes in diet do help kids with autism and if that’s true, then that’s great you know. Whatever helps – there’s nothing right or wrong I think. I guess what this just reinforces is how different every person with autism is, and how a method that benefits one person doesn’t necessarily benefit another.

Then I saw these sentences:

Experts said there was a general lack of knowledge about autism in the UAE. Even the extent of the problem was not well recorded.

No shit, Sherlock! I don’t know how many times I’ve needed to scream from the rooftops on how the knowledge about autism and special needs in general is not very high and it needs to be addressed. Now even experts have agreed with me. And this line here:

“We know it is a problem but we have no statistics to determine how many children are autistic,” said Dr Ali bin Shakar, the president of the Emirates Medical Association.

And if doctors here don’t have statistics on the issue…can I really expect the general public to know anything?

The second half of the story also focuses on costs associated with therapy and education for people with autism. This is true: it is expensive for families who deal with special needs if they want to go all the way. When I say all the way I think about schooling, then extra therapy such as speech therapy or occupational therapy or even physical therapy (for fine or gross motor skills etc). Not everyone can afford to do all of that here; when I read of how therapy sessions in certain countries in Western regions of the world are guaranteed no matter what, I despair a little. One-on-one sessions, which by the way, are highly recommended, can take a massive toll on the bank balance unless one is from a family of means. Here’s a quote from the article:

The result is huge bills – an average of Dh70,000 a year to treat an autistic child, according to Dubai Healthcare City, which has four private treatment centres. But Dr Abdul Kareem Al Olama, an executive director at Dubai Healthcare City, says parents should never lose hope.

“There are many [public] facilities, such as Rashid Hospital and the Dubai Autism Centre, that parents can approach,” he says.

“Parents shouldn’t panic, there is help available.”

Two issues here: the expense (which is a lot) and then the doctor saying “there is help available”. Yes, there is help available but there isn’t enough. Do you have any idea how long waiting lists are for special needs institutions in the UAE? Of course we’re going to panic when we wait, and wait and hope we get a call soon saying we have a place at the school! Of course we’re going to panic when we hear the enormous cost of getting my brother one-on-one sessions with a speech therapist for example. (He doesn’t go for one-on-one treatment FYI. I wish he did.) I’ve never lost hope for my brother…never will. I just get frustrated because I wish I could do more for him somehow.

On available therapies themselves, I’ve been looking at reports on how dolphin therapy helps children with autism. Do I even have the option of trying that out in the UAE? I saw news about a year ago saying this was in the pipeline but I see nothing to tell me it’s a reality now (please, please correct me if I’m wrong; I’d love to be wrong about this one). In addition, some kids with autism take time to pick things up, and sometimes they just get in an instant. So if Karan doesn’t take to something immediately, it will require many sessions to get something through to him…how much is that going to cost?

I also want to point out what this line in the article made me think of:

“There have been many improvements, but he’s still autistic and there are many barriers to overcome in the next few years.”

Heaven knows I’m not being harsh; I deal with autism myself every day… but no matter what therapy you put your child through, no matter how “normal” he or she will seem at the end of it if the therapy is very successful… autism isn’t a disease that can be cured. If a person is autistic now, he/she will always be autistic. Autism is a part of the person. For life. The sooner families dealing with it accept it, the better it will be I think.

I think this article just reinforced my belief that the awareness levels in this region on autism and special needs is just really low, which only contributes to the discrimination and derogatory behaviour some of us have to face from the general public.

It’s sad you know… people with special needs treated as “sub-humans” by other “humans” (not referring to doctors here but to the general public). What does that say about humanity?

Special needs children enjoy camping in Fujairah (via Gulf News)

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The first time we stayed away from home, the first time we travelled far with our friends and the first time we used a sleeping bag. How many of us will remember these experiences?

These and many more experiences were felt during Manzil’s overnight camp at Ain Al Madhab Gardens in Fujairah. What made this camp different was that students from Manzil, a centre for individuals with special needs in Sharjah, were accompanied by their “buddies” from The Millennium School, Dubai, where they attend a partial inclusion programme every Wednesday.

All students, escorted by the staff , filed into vans one Thursday afternoon and soon reached the camp site. After putting away their baggage, the students enjoyed a game of football. They then went and explored the play equipment in the park. Later, it was time for drumming, music and some dancing.

In the evening, there was a barbeque and all the students sat down for dinner and watched a movie. By 10pm all Manzil students were fast asleep.

The next morning, after freshening up, the students had breakfast and by 9.30am they were headed back to school where their eager parents were waiting to take them home. The parents were surprised to hear about all their activities. The students had even packed up all their things independently.

It was a wonderful experience for these truly special students.

— The writer is an Inclusion Programme Coordinator at Manzil