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.

One of the most stupid things to say to special needs families

I’ve heard this line a million times, and believe me when I say that I constantly want to punch whoever says this ridiculous line to me:

God only gives special needs children to those who can handle it”

… or any variation on the same.

Honestly … if that’s the only thing that comes to mind when you speak to a special needs family, I’d kindly ask you to shut your trap.

Seriously? You genuinely believe that every single family that has a special needs child born into it is capable of handling it? I’ve seen tremendous success stories, and I’ve also seen what modern lingo would call ‘massive fails’.

Not just a failure in terms of getting the child what s/he needs to become independent (oh trust me, there are loads of parents/caregivers who don’t do squat to improve their charge’s situation), but there are occasional cases where children are mistreated, injured, or worse case scenarios, killed/murdered [see this post for example: Autism is Not an Excuse for Murder: A Mother Selfishly Takes Her Son’s Life] … thankfully rarely seen in the media, but it happens.

I don’t need explanations on the divine mysteries of why it happened, this is not what this post is about.

This post is about me asking you, politely, to never spout this nonsense ever again.

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