Author Archives: Devina Divecha

Zurich’s #TrulyLove social media campaign to raise funds for Manzil Centre for Challenged Individuals

Just got information about this Ramadan campaign which supports the Manzil Centre for Challenged Individuals in Sharjah (disclosure: my brother attends that school so I have a vested interest in this campaign succeeding!) – do share!

So many social media enthusiasts out there sharing photos about things they love… I’m sure people can find time to add an extra hashtag to them to help a good cause.

Information about campaign:

This Ramadan, Zurich International Life Middle East (Zurich) has partnered with RAKBANK to help give some love back the community.

Zurich’s #TrulyLove social media (Twitter, Facebook and Instagram) campaign aims to raise funds and awareness for Manzil, and for each photo and caption posted, Zurich and RAKBANK will donate AED 5 – with the aim of raising AED 75,000 for Manzil over the 4 week campaign.

Participants also get the chance to:

  • WIN! Each week, 6 shopping vouchers worth AED 500 will be given away to those with the most likes and shares.
  • BECOME A STAR! The top posts will get to feature in a future Zurich advertising campaign.

So, do your bit for Manzil today and get posting! All you have to do is post a photo and caption of something you #TrulyLove

To participate go to trulylove.zurich.co.ae or www.zurich.co.ae

1. Submit a photo and caption
2. Use #TrulyLove to post
3. Get friends and family to vote
4. WIN!

My special needs reads #3

Back to what I’m reading!

Couple of old links I looked back on but great ones… This one is on popular special needs blog Love That Max, and shares results of a survey taken of over 300 adults who have siblings with disabilities. These kind of stories always interest me, to see what other siblings think or feel. Have a read!

Here’s one I have on bookmark – and it’s about honesty in special needs families. Much love to Lisa Domican for blogging about this; it’s titled “coming clean about that autism taboo“. It’s about being able to have an ‘off day/month/year’ when it comes to living with special needs. The media loves a feel-good story, but it’s not rainbows and miracles every day and families who live with special needs know that. We look on the bright side, A LOT, but sometimes, heck, you just want a rest. So it’s ok to feel annoyed, angry, upset, frustrated… this is normal. And Lisa’s post is very insightful on the matter.

This is a great post from Mashable which has five different simulation videos that show you exactly what people with autism experience on a regular basis in “normal” life experiences. To quote from the article: “To the extent that these simulations can illustrate how noxious sensory stimulation can be for individuals with ASD, they may help the general population to better understand the difficulty of living with ASD.”

This one is recent and topical – as a journalist myself, it annoys me no end to see media outlets shout out crap like “person with autism shoots XXX number of people” and “serial killer autistic” and stuff like that. What pissed me off even more recently was an “article” that shouted out that there was a “significant statisical link between mass murder and autism”. But buried in that article was a line that the study was speculative and anecdotal. Uhhhh. My thoughts summed up perfectly here by autism father Stuart Duncan: “Dear news media, this is how you fail the autism community so badly”.

A pretty comprehensive study that covered 2 million children from 1982-2006 (out of which over 14,000 had autism) was undertaken by researchers at Karolinska Institutet in Sweden, King’s College in London, and Mount Sinai in the United States which states that “Autism risk half genetic, half environmental“. Have a look!

That’s it for this week … till the next time!

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!

What I’m reading about autism this week

I read quite a lot of news stories, watch videos, comment on blogs – all about autism – quite a lot. I realised it might be useful to record, and share, what these are!

Here’s the first in the series of my “What I’m reading about autism this week”.

Technically this isn’t a read at all (way to go Devina); it’s a YouTube video. A TED talk by geneticist Wendy Chung about the possible causes of autism, which uses hard-core science to try and find out what’s going on, and emphatically debunks the “vaccines cause autism” myth. Here’s a look:

The next story is one on BBC News, titled “Admiring Autism: Busting ‘autism myths’ with a camera“. It’s about a photographer, based in the UK, who has documented her experiences with her son and other families who deal with autism on a regular basis through the medium of photos. Sarah Dunn and her photographic journey can be followed on Facebook and Twitter.

Then it was off to the NY Times for an opinion piece called “Autism and the Agitator“. It’s essentially about Jenny McCarthy‘s sudden declaration that she’s been misunderstood and that she’s actually “pro-vaccine”. What do you think about this brouhaha, I’d be interested to know.

Potentially the most famous autistic in the world, Dr Temple Grandin participated in an online chat Q&A over at Talk About Autism. It happened on April 22, but you can still read the transcript over at the link.

And one of my favourite bloggers, Lisa Maree Domican has a guest post on her blog, titled “Guest post from Ethan, Eli and Jodi: Autism’s other half” and it features short write-ups from two young boys with autism, who have written from their perspective what they think about it! Loved the idea and the photos added to the post.

A feel-good story here about a Minecraft server called Autcraft – it’s for children with autism and their families.

Then I was following an interesting timeline by Stuart Duncan (also in the previous story), or as he is known on Twitter @autismfather. Here’s a look at some tweets a few days ago (there are more on his timeline, please have a look):

That’s all I’ve got this week… until 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.

Special needs event on Saturday, Feb 22, in Dubai!

Running a press release which I received about an event in Dubai this coming weekend, which aims to raise awareness about special needs kids and allows them to enjoy themselves in a relaxed setting while interacting with kids who go to mainstream schools.

Also, it’s Karan’s birthday on February 22 … so go celebrate! 😀

PRESS RELEASE:

TRIBE WATSON to Organize 7th Annual reaching you “party in the park”
(formally known as reaching you “family fun day”)

Dubai, UAE – 16th February 2014 – Under the patronage of HRH Princess Haya Bint Al Hussein, wife of HH Sheikh Mohammed Bin Rashid Al Maktoum, Vice- President and Prime Minister of the UAE and Ruler of Dubai, ‘reaching you’- a programme created to increase awareness and integration of children with special needs across the UAE- will be holding its 7th annual Party In The Park (formally known as ‘Family Fun Day’), at the Mega Bowl, Zabeel Park on the 22nd of February 2014 from 12:00 until 18:00.

Invitation to Reaching You party in the park

A complimentary day full of festivities, the reaching you “party in the park” is committed to providing a relaxed environment for special needs and mainstream children to interact and enjoy a fun filled day of activities, merriment and health.

“We see health and fitness as a key element in enhancing children’s lives and integrating them into their community,” said Nick Watson, Co-Founder of TRIBE WATSON and reaching you. “As such, we wanted to create a worthy cause, which encouraged this involvement, sharing with parents and the UAE community the wonderful joy this can bring to children of all abilities.”

“In Dubai alone there are over 6000 children with special needs, however caring for them is not always at the forefront of people’s minds, thus events like the reaching you “party in the park”, help in bringing us all together,” said Mr. Watson.

In its 7th year and expecting over 5000 visitors, the reaching you “party in the park” promises to be a fantastic day full of activities including – DJ’s, bouncy castles, obstacle courses, climbing walls, Dubai Drums, art work, puppet shows, theatrical shows, games as well as face & henna painting – delighting children in this renowned family affair.

“It is my personal belief that every individual has the right to receive the necessary support needed to live as a member of the community and benefit from experience and social relationships. reaching you and its various initiatives are a perfect way to achieve this,” concluded Mr. Watson.

Nick and Delphine Watson are parents of Rio, their beautiful boy who has special needs. Inspired by their own experiences, in 2006 they were motivated to establish the program reaching you, using their own understanding and appreciation for the cause, as the currency for their success.

Details of Reaching You Facebook page-
https://www.facebook.com/reachingyoudubai

Do parents of special needs children need training?

An interesting press release landed in my inbox (pasted at the end of this post), about training for parents of children with special needs.

I’m glad initiatives like these take place! When you get that call or are told face-to-face that your child is ‘different’ from the normative human being, it’s definitely a shock. You have to prepare yourselves for dealing with issues other families may not have to. And there’s never been a manual. My point is, yes I think families with special needs need training and a network of support. It’s great that there’s so much support nowadays, whether it’s through programmes like these, or even the internet!

I was only 12 when Karan was diagnosed, I never really found blogs of other special needs families until I was around 15 or so, when I started looking. I was frustrated, even as a sibling, with the lack of information on how to deal, how to cope. I discovered blogs I loved reading…other Moms listing their trials and tribulations, their successes and so much more.

My parents don’t like the idea of this blog in a way, they think I share too much about Karan and our life with him. And you may be able to tell this blog now has less of ‘life with Karan’, and more of my thoughts on the topic of special needs in general. One of them is probably reading right now and thinking that me saying they think I over-share IS over-sharing! 🙂 But I have found the special needs community online to be one of the best support networks out there. Someone else has already done the sleepless nights and shared what worked, someone else has already dealt with tantrums in the supermarket and shared their fatigue, someone else’s kid has finally learned how to use the toilet independently and they shared their joy with us.

Lately I haven’t had the time to comment, but I am a lurker on the special needs community websites and read, and get happy and sad with them. Shout-out to these blogs for being some of my favourite special needs websites to read when I can: Living with Autism / Love That Max / Planet Autism / Adventures in Extreme Parenthood / Autism by Hand

Anyway, here’s the press release that triggered this post (copied in full):

Al Jalila Foundation announces the launch of its Ta’alouf Parents Training aimed at providing life-changing skills to parents of children with special needs

Dubai, UAE; 5 October 2013: Al Jalila Foundation, a global philanthropic organisation dedicated to transforming lives through medical education and research, has announced the launch of its first training course taking place for parents of children with special needs as part of the Foundation’s Ta’alouf programme. The course spans 12 weeks and provides behavioural training for these parents to empower them with life-changing skills. As part of its sponsorship, Al Jalila Foundation has committed to providing training for 400 parents of all nationalities over a period of four years. The course is being conducted in collaboration with the British University in Dubai (BUiD), the Middle East’s first research based postgraduate university, and is designed and led by Professor Eman Gaad, Dean of Faculty of Education and the Head of the Doctoral Programme at BUiD.

Ta’alouf, which means ‘harmony’ in Arabic, is Al Jalila Foundation’s flagship community programme, which was announced in June 2013, starts today with the parents training course. Established by His Highness Sheikh Mohammed Bin Rashid Al Maktoum, Vice-President and Prime Minister of the United Arab Emirates (UAE) and Ruler of Dubai, Al Jalila Foundation is committed to fostering a unified and inclusive society where parents, educators, strategic partners and the wider community work together to empower children with disabilities.

The training provided through this collaboration enables parents to complement the efforts of educators and caregivers for a continuum of care between the child’s home and school. The first 12-week professional course includes 55 parents of children with varying special needs and will cover a range of professional behavioural skills that will allow parents to better address their children’s needs. Among the participants are Sonia Al Hashimi, Chairperson of the UAE Down Syndrome Association, and Fatima Rashed Al Matrooshi, Chairperson of the Emirates Autism Society.

Dr Abdulkareem Al Olama, CEO of Al Jalila Foundation, said: “This training is deeply rooted in our premise that learning is not only confined to the classroom because, even at home, children are in a continuous process of intellectual growth in which parental engagement is essential. This parent-centred course will allow parents to be more perceptive in interpreting their children’s behavioural cues, thus making the learning process more interactive.”

Professor Abdullah Alshamsi, Vice Chancellor of BUiD, added: “The British University in Dubai believes that all students, including those with disabilities and special learning needs, are entitled to an excellent education. Equipping parents with the tools and knowledge required to provide their children with a genuine opportunity to succeed is a vital part of this educational success. In responding to this vision, we are very proud to be Al Jalila Foundation’s partner in this wonderful initiative.”

Sonia Al Hashimi, Chairperson of the UAE Down Syndrome Association, added: “Parents face challenges, stigmas and alienation and they need support that will enable them to be better equipped to assimilate information and act on behalf of their children. Increasingly, communities are recognising the critical need for inclusion – these courses are providing that necessary bridge between parents and school, addressing the needs of these children.”

Fatima Rashed Al Matrooshi, Chairperson of the Emirates Autism Society, stated: “There have been significant developments in the education of students with special educational needs in recent years. Keeping track of these developments and getting involved in your child’s special education are among the most important things you can do as a parent. I would like to thank Al Jalila Foundation for introducing this very important initiative to the UAE.”

This latest collaboration marks another significant milestone for Al Jalila Foundation since its launch on 1 April 2013. The cumulative effect of the parents’ training will advance the organisation towards its overall aim of impacting lives across the UAE population through medical education and research.

Support local special needs school’s craft initiative

Just received an email today from Manzil Centre for Challenged Individuals based in Sharjah about its latest initiative to support, and, most importantly, empower its students with special needs.

Individuals and companies who wish to gift their friends, family or colleagues presents created by children with special needs can contact Manzil with any customisable requests.

All proceeds from the sale of Manzil ME products will go towards supporting its students.

There is more information in the flyer below, and for more info call +97165347663 or +971509817767.

Manzil ME gifts

Disclosure: My brother studies at Manzil.

Ottawa chef cooks up plan to help young adults with autism in the kitchen

OTTAWA — For years, Christine Alexander, the executive chef and owner of Grenfell Catering Delights, stood behind her deli counter teaching young adults with autism from a nearby centre to use her debit machine to buy sandwiches, cookies and drinks.

“The service worker would always speak for them and interact for them. I said, ‘You know, I’m pretty patient if you ever want to bring them by on my not-busy times so they can learn how to do it,” said Alexander.

Within about six months, the young customers from Spectrum Intervention Group could make purchases on their own. Their success inspired Alexander to offer her skills and her kitchen for cooking lessons.

READ MORE AT: Ottawa chef cooks up plan to help young adults with autism in the kitchen.