Tag Archives: autism

My special needs reads #2

Alright, so I’m back with a list of all things special needs-related I’m reading this week.

I’ve been interested for a while in the suggested link between diet and autism, and while this article’s usage of the word “cure” annoys me, it’s an interesting piece on how there are differences in the bacteria found in the intestines of people with autism, and those who are neuro-typical. It also suggests pro-biotic therapy as something that might one day be an option.

Media is also an important part of how the general community views people with special needs. This article is about a mother and other groups pushing for mediums like advertisements showcasing people with all kinds of abilities. I personally feel it’s going to be a while before this becomes “normal”.

An unfortunate set of incidents I often end up reading about are guardians/parents who end up killing their charge with special needs, and more often than not, kill themselves as well. In response to many people on the internet showing sympathy for the mom who committed the latest murder, Squidalicious has posted a succint piece on the matter. There’s also an audio discussion on the same issue.

This one is a short article, which I found interesting, about a 22-year-old who is pursuing research about the potential link between Down Syndrome and Alzheimers. It’s not a hypothesis I’ve come across before, so it’s interesting to see if this goes anywhere concrete.

There’s a piece that hit closer to home – about the ‘hidden community in autism‘. It’s the set of families that deal with the extreme end of autism – with the biting, the hair pulling, the tantrums, aggression, and much more. It’s not easy to manage, and can scare people if they haven’t seen it before. While there are instances in that post which are more extreme than I’ve ever seen, even Karan sometimes has bouts of tantrums/aggression that aren’t pretty. It’s draining – and I’m not even his caregiver! While the article talks about appropriate services, there aren’t the kind you’d find in the Western countries over here. I think it is important though, that extra help is given to caregivers, as they cannot be expected to look after the autistic person 24/7. Plus, I agree with the article that families with more severe problems get marginalised. Everything is “happy” in the media, but there are those with autism who aren’t going to live “normal” lives. Ever. But people don’t realise that. It frustrates me sometimes to see the side of autism in the media where people are “cured” (BAN that word in relation to autism FFS), where autistics get jobs and earn money and get married. Not all of them reach that stage!

But let’s finish off with this feel-good story about Joshua, who called 911 when his Mom had a bad fall, surprising everyone with his knowledge of what needed to be done. Just goes to show, special needs children absorb a lot of information, even when we’re not sure if they are!

Anyway, that’s all I got this week … till the next time!

Documentary about children with autism in the UAE in progress

A press release landed in my inbox about a documentary about children with autism in the UAE. I already watched “The Brain That Sings” by Amal Al-Agroobi at the Dubai International Film Festival (DIFF) so another movie on the same topic was great news. Yes, there’s a lot of awareness nowadays in terms of campaigns, fundraisers, and so much more, but movies I think contribute a lot to the public understanding of autism.

At present, ‘autism’ is this thing that the public, I think, is aware of, but doesn’t really understand. Movies are a great visual way of connecting with them to say, THIS is what it is, and this is how it looks.

The new documentary is being directed by Tricia Regan which is part of The Autism Project, an initiative started by Her Highness Sheikha Shamsa bint Mohamed bin Zayed Al Nahyan, to raise awareness about autism.

The film features 10 children between the ages of 4 and 17, and are on different levels of the spectrum, as well as being from different backgrounds and nationalities.

Looking forward to seeing it!

 

Full press release: 

IMAGE NATION TO PRODUCE DOCUMENTARY ABOUT CHILDREN WITH AUTISM IN UAE

Project aims to raise awareness about Autism and inspire hope in families

Tricia Regan with the children

Tricia Regan with the children

Abu Dhabi, 2 April, 2014: Image Nation announced production of “As One”, a new feature-length documentary about Autism directed by Emmy Award-winning director Tricia Regan.

The film is part of The Autism Project, an initiative started by Her Highness Sheikha Shamsa bint Mohamed bin Zayed Al Nahyan, to raise awareness of Autism in the United Arab Emirates. Autism currently affects almost 1 in 50 children globally with more young people being diagnosed each year.

The documentary focuses on the children, parents and teachers involved in a unique theatrical and musical program in the UAE for children on the Autism spectrum. The culmination of the program was a musical staged for the cast’s friends and family, as well as UAE dignitaries.

Her Highness Sheikha Shamsa bint Mohamed bin Zayed Al Nahyan, said of the initiative: “It is my sincere hope that The Autism Project will have a positive impact on the lives of the children and families who are participating in it, and that this documentary will help to inform the wider UAE public about Autism and its nuances.”

“Overall, we want to ensure that our society does not fail to recognize and embrace the amazing skills and abilities of autistic children, and that these children are given the opportunity and confidence to be active members of our community”.

Mohammed Al Mubarak, Chairman of Image Nation said of the documentary: “The Autism Project is something that we are immensely proud of. Autism is such a prevalent condition in the UAE, but there is still a stigma attached to it”.

“We hope this film, and all the hard work from everyone involved, will help bring a sense of hope to families and increase awareness of this issue.”

Tricia Regan, the film’s award-winning director said: “I am very honored to have been invited to create a musical theatre program in the UAE for kids on the Autism spectrum, and to have had the privilege to direct this documentary film.”

“This is a story of magical kids and dedicated parents struggling to understand autism, and build meaningful lives for themselves. It is joyful, funny, and also often heart wrenching – as is most of life. Clearly cultures from all over the world are dealing with autism, and this film not only makes that clear, it also shows us that we are all more alike than we are different.”

The ten children who were chosen to take part in the film are between the ages of 4 and 17 and are at various levels on the Autistic spectrum. Children from different backgrounds and nationalities joined the musical and theatre program, reflecting the diverse and international community in the UAE.

Information about the Autism Project and the upcoming “As One” documentary is available on this website: http://www.asoneautism.ae

Principle photography has been completed and the film is expected to launch before the end of this year.

Contribute your voice to the initiative on Instagram – @AsOneAutism Facebook, As One: The Autism Project and Twitter @AsOneAutism.

Autism coffee morning – let’s talk about camel milk!

Have you ever tried camel milk? I have. I admittedly don’t have a lot of it, but we did have quite a few bottles of it in my house on a regular basis for a while – when research emerged that camel’s milk is an alternative to regular milk or soy milk etc for people with autism.

It’s Autism Awareness Month in April, and to herald that, there’s something pretty interesting happening in a dew days. If I wasn’t travelling, I’d definitely be there! So here’s something for families or professionals who deal with autistic spectrum disorders on a regular basis:

What?
EICMP (Emirates Industry for Camel Milk & Products) is hosting a coffee morning in co-ordination with Autism UAE and the Child Early Intervention Medical Centre to talk about the issue that camel milk might support in the therapy of autistic children.

US author (A Real Boy: A True Story of Autism) Christina Adams will speak at the coffee morning about her experience with her autistic son and the use of alternative therapy methods.

FYI she will also be speaking at the Child Early Intervention Medical Centre charity gala dinner on April 2, 2014.

When?
Monday, March 31, 2014 at 10am.

Where?
The Majlis Dubai, next to Jumeirah Mosque on Jumeirah Beach Road.

I spy with my little eye, something beginning with the letter “a”

I guess people who deal with special needs of any form can identify with this.

Often, it feels like having a superpower – the power to spot special needs where others don’t. I know it sounds overbearing, awful and sad.

Some people don’t have external, identifying “marks” of having a special need. But I can see them (it’s starting to sound all Sixth Sense even as I type).

I was out yesterday in a mall, and I was walking towards my destination in the mall, my eye moved towards a boy (perhaps 17? 18?) with a bright pink t-shirt with a slightly unfocused look. And in around 10 seconds, I thought, “he has autism.”

Then I observed a little more.

He was accompanied by a man and woman whom he resembled slightly – his parents I surmised. With them was another man, didn’t look like them at all, had (how do I write this in the most PC manner? Perhaps there is no way) slightly worn/not very expensive clothes on…I pegged him as their helper. He had a shopping bag in his hand, and I think the father asked him to give it to the boy. He did. The boy held it limply for a while, then dropped it, not realising, not caring. The other man picked it up, stayed close.

I stayed for a minute or two, and figured I was right.

And then I mentally wished them all the best, and felt glad that at least they had some help with the boy. It’s not easy, and frankly not recommended, to take care of a person with special needs with no extra help – especially if it’s within your means to get that help.

Cats, autism and overcoming prejudices

Karan and the cat

So that’s Karan sitting on the doorstep of our house. That’s an abandoned cat. To cut a long story short (although if you want the long story, here it is), she was most likely left behind by her owners and she’s adopted our garage as her base, while she roams around for most of the day along with many other stray cats in the area.

One day, we were doing something in the garden so I brought Karan outside, and here they are, sitting next to each other, ignoring each other. I love this photo since it just shows how aloof both are. Yesterday, Karan and the cat (female, but I’ve named her Vader) were just staring at each other… Karan standing, with Vader at his feet looking up at him. It was really cute to see!

BrainPop: What is Autism?

Came across a link to a video on Twitter which explains what autism is in a simple way and is created for children.

With a cartoon character and a robot discussing the issue, it breaks down the bare elements of autism in a concise and easy-to-understand manner.

Try and help your kids understand what autism is, and hey, if adults don’t get it either… this is a good place to start!

Link to video

Autism awareness month supported by Hyatt Capital Gate Abu Dhabi

Note: I don’t normally post press releases on my blog, but I felt this one warranted a post 🙂 There’s a few activities for members of the public to get involved with, so if you’re in Abu Dhabi around that time, why not?

As part of Hyatt Hotels & Resorts’ international Global Month of Service, Hyatt Capital Gate Abu Dhabi has partnered with Abu Dhabi Cause Connect to support World Autism Awareness Day (WAAD) through a full month of initiatives to raise awareness on autism.

“As part of our on-going commitment to Hyatt Thrive and our local community, hosting and organising weekly activities throughout April (World Autism Awareness Month) was undoubtedly an important yet easy decision as it is a cause all our employees are committed to,” said Ashwini Kumar, Hyatt Capital Gate Abu Dhabi general manager, in the statement.

One in every 88 children is diagnosed with autism and each year, more children are diagnosed with autism than with juvenile diabetes, AIDS or cancer, combined.

“Awareness is the first step to early detection. It is important for us to engage the community so that there is increased dialogue about how to recognise autism and how to find the proper help and support for your child,” said autism consultant Nipa Bhuptani. “Early intervention plays a large role in increasing the quality of life of children, family and their caregivers.”

“Our employees are volunteering their time towards increasing awareness and acceptance of autism families in Abu Dhabi,” added Kumar.

These are the activities Hyatt Capital Gate Abu Dhabi is working on:

Hotel Fundraising – 2 April
From WAAD until the end of the month, Hyatt Capital Gate Abu Dhabi will ‘Light it up Blue’ by switching all of its exterior building lights to blue – the recognised hero colour of Autism Speaks – to mark its commitment to the cause.
Guests visiting Hyatt Capital Gate Abu Dhabi will have the opportunity to assist children with autism by adding a ten dirham donation to the end of their bill at any food and beverage outlet, Rayana spa and at check-out.

Employee Education – 2 April
To ensure all employees of Hyatt Capital Gate Abu Dhabi are able to share informed knowledge about persons with autism, awareness and early detection, Nipa Bhuptani will provide an educational seminar to not only increase awareness amongst hotel staff, but to also allow staff to share their learning with all guests they interact with. All employees will be wearing a colourful puzzle piece ribbon on their lapel throughout April, and thus the hotel encourages all guests to please speak to its employees about this important initiative.

Art Display and Auction – 7 April
To celebrate the unique talents and skills of people with autism, from 7 – 30 April, various art pieces will be on display on level 18 of Hyatt Capital Gate Abu Dhabi, in reception, the lounge and the hotel’s signature restaurant, 18 Degrees (18˚).
Painted and drawn by children with autism, approximately 25 pieces will be displayed and showcased to all guests entering the hotel. Art pieces are available for purchase at a price dictated by the buyer as a donation. All monies received from the sales will be put towards purchasing ‘wish list’ items for autism schools and centres.

Fun Day – 20 April, 9:30am
To warmly welcome and embrace children with autism, a day for these unique individuals and their families will be hosted by Hyatt Capital Gate Abu Dhabi at the Corniche Beach. The hotel will not only be donating snack boxes for the children, but employees will also join the event to personally play and engage with, and support all that attend.

Inaugural Launch of Support Network for Parents – 24 April, 5:00pm – 6:00pm
Hyatt Capital Gate Abu Dhabi will host the launch of Abu Dhabi’s first parent support network for autism families, led by Nipa Bhuptani. Although the prevalence of persons with autism is high in the capital, no formal support network currently exists. All parents that have children with autism are invited to attend the launch.
For parents in need of additional relaxation, a complimentary coffee break and yoga/meditation session will also be hosted from 6:00pm – 7:00pm by Rayana Spa, located on level 19 of the hotel. Prior registration is required and availability is on a first come first serve basis.

For those wanting to attend the Fun Day and / or Launch of the Support Network, please contact Nipa Bhuptani at nipa@nipabhuptani.com or +97150 7929965.

When lunch didn’t go according to plan

As I’ve posted before, I have been trying to take Karan out for lunch to different restaurants to get him used to new places, and not stick to a usual routine.

Anyway, one place which we regularly go to is Aappa Kadai in the Dubai Marina. Not only is the food good, they’re pretty accomodating when Karan decides now is the time to belt out loud noises.

Karan has been really good every time we went out – so I wasn’t too surprised when we had an off day. Even for an “off day” though, it wasn’t too bad. We settled down in the restaurant, ordered some food, and Karan started eating the kababs (which he is madly in love with). He’d eaten maybe two kababs when…

… a small girl at the next table (perhaps 4 or 5) started talking. I don’t know what it was about her voice, bless her, but it riled my 17-year-old hulk up. I have a hunch it was her pitch and tone, because he’s normally okay around kids for most part, but sometimes noisier ones just upset him. It’s not their fault – they’re being kids! Karan’s just got sensitive hearing :-/

Anyway, she kept talking, and Karan started getting irritated. I was sitting next to him and he started doing something he hasn’t done in a while and reserves only for when he’s getting annoyed: pulling my clothes with a grip that’s nearly impossible to escape. I think initially when it used to happen, it was embarassing – one, because we live in the Middle East, and two, because my family is Indian. Both reasons lend to embarassment when clothes are pulled, bra straps etc are shown and whatever else. I’ve always maintained when he used to do this before, that I better wear good underclothes when I go out because I’ll be damned if he pulls my clothes and shows off icky underwear (people who deal with similar situations…you’ll understand! Even my Mom got around to this method of thinking).

So he started doing that and refusing to eat. I just placed my hand over where he was pulling so as not to give away more of a free show than he was offering. My dad suggested we leave. I refused saying if Karan didn’t want to eat, that’s his problem, but I’m getting my food first. However when my bra strap peeked out despite my best efforts, my parents needed to be calmed down. A centimetre of my bra strap showing ISN’T going to tarnish my honour guys, just calm down. Yeah other tables might be staring, but that’s their problem, not mine.

I eventually told Karan I didn’t appreciate having my clothes stretched, slowly extricated myself from his grip (which is tough because it’s vice-like) and sat on the edge of the table where he couldn’t reach me. We finished our food, and only then did we leave. His food was packed, and at home he was hungry and ate it up.

He’s got to learn that we’re not going to pack up and run – there are going to be many kids in the world being annoying/grating to his ears. I think the more he goes out, the more he’ll adjust. If we pack him away, he’ll never learn to cope with a range of experiences.

I don’t want to expose him to more distress than necessary, but we need to get him comfortable with this big, crazy world, right?

Accept the difference. Don’t ignore it.

The following image from www.postsecret.com

[autism.jpg]

When I saw this post, I started thinking about those who deny the existence of special needs in their children, and withhold from them the opportunity to get any therapy that might be needed.

I’ve come across those who are offended at the idea that their child might have “something wrong” with them. I’ve come across others who find the suggestion laughable: “My child? Special needs? Haha, what nonsense!” and then, there are those who just behave as though everything is fine and blankly ignore any suggestions from well-meaning others to perhaps get some help? When people say: “I can’t believe her teacher/doctor/whoever said we should get her checked for <insert whatever special needs term you like here> … I mean, she’s just a little different, but that’s no reason to label her!” I’m not sure what to say … what’s wrong with getting your kid tested?

And what is this stigma attached to special needs? The concept that people who are differently abled from the majority of the population as being “lesser” than everyone else is revolting. Sure, not all those with special needs are geniuses…but they’re pretty cool anyway. Just like you and me.

I wish parents would understand: if there is even a small chance your child has some kind of special needs, getting help is not a bad thing. Labels mean nothing nowadays. Labels are what you make of them. IT’S OKAY if your kid has autism. Or Down Syndrome. Or Fragile X. It’s going to be difficult, sure. But the “label” is not going to ruin anyone’s life. Not unless you let it.

I’m not even saying to go with one opinion. Take two. Or three. But if everyone says the same thing, get help. Please. Don’t ruin your child’s life by being too late.

Lunching with my brother

I’ve been trying to get Karan to go out for lunch every weekend, at least once, so that he gets out of the house instead of staying cooped in. So far we’ve experimented as a family (all four of us), as a trio (Karan, my Mom and I) and today, it was a duo date – just Karan and I.

I took Karan to Aappa Kadai in the Dubai Marina a while back, and he fell in love with their kababs and mango lassi.

So today, when it was just the two of us, I decided to go back there. I quite forgot about the time, and ended up there around 2.40pm rather than much earlier.

It was packed.

I decided to order the food as take-away, but the staff members there (who recognised Karan and I from our many outings there) said one of the tables was clearing soon. So I gave my order and waited. They were really cool about it…gave Karan a chair to sit on so he wouldn’t get agitated.

I did get the usual stares from the pre-dominantly desi crowd. But there was one woman there, with her husband and two kids. She looked at Karan for a bit, but it was different from the usual weird stares I get. She then looked up at me and smiled.

I felt much better instantly – till that point I was fretting a bit about whether Karan would wait for the tables to clear, whether he would get upset because he was angry. She, however, with a smile that said to me: “Hey, hope you’re okay!” , made me feel just a little less worried.

A table did clear up within 10 minutes or so, and Karan gobbled up loads of kababs and his customary mango lassi. He was really cute… he was quite hungry and every time a waiter walked past with a tray of food, he would straighten up and look at the tray hoping it was for him.

Honestly, the staff at Aappa Kadai are absolutely lovely when it came to dealing with us. We’ve never told them Karan has autism or anything, but they’ve always treated us well. And that is why I love going back. Apart from their crazy good food of course!