Tag Archives: awareness

Late night thoughts on autism

One night, I don’t know what came over me. I sat and tweeted everything in my mind at that moment that had to do with autism and my brother. My brother is nearly 16, and we’ve been living with autism since he was about 3. Thirteen years and I still haven’t figured everything out…everything there is to know about autism.

The people who support me and my family, you’re absolute darlings. Thank you.

I’m also on a quest to find special needs/autism bloggers in the UAE and Middle East. If anyone knows or hears of anyone, please buzz me 🙂

Also…Happy Birthday Mom! Karan would’ve been nowhere without everything you do for him, and you know it!

So…for a recap on my late-night thoughts, here: 

View the story “Talking about autism” on Storify]

The #manzilbooks update

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Bookmarks designed by Saurabh Chhabra (@2S8)

What’s happening with ManzilBooks? For those joining in now, here’s my plea to the community asking to donate books, and here’s the first #manzilbooks event we held at Wild Peeta.

Initially, the school wanted to hold their booksale in June, but haven’t hit the required 10,000 books the people helping them organise the event have requested for the sale to be held in the first place.

Where have they reached? With our donations and independent ones, they’ve passed 4,000. For this reason, they’ve decided to extend the duration of collection over the summer, and hopefully hit the target and carry out the event after the summer, and after Eid.

So…what’s happening?

I’m the contact person for pick-up points near Dubai Media City, Dubai Internet City, Emirates Hills, Greens, Meadows, Springs, Lakes, JLT, JBR, the Marina. Anastasia (@TDAllonsy) will be looking after Dubai Silcon Oasis, Dubai International Academic City (DIAC) and the surrounding areas.

Alternatively, Wild Peeta has generously donated its Dubai World Trade Centre outlet as a drop-off point. If dropping the books off there is more convenient, then please do so. Do drop me an email (autism [at] devinadivecha [dot] com) to let me know you’ve done so. There’s a collection of books people have dropped off along with these lovely bookmarks for people to have a sit-down and read while they eat (make sure you don’t drop any food or drink on the books!).

We hope you’ll spread the word…if anyone is thinking of getting rid of their books, please point them our way!

What to say and not say to a parent that has a child with Autism | Stuart Duncan

What to say and not say to a parent that has a child with Autism

Written on May 30, 2011 by Stuart Duncan

Filed Under: Autism

I’ve written quite often about how having a child with Autism forces you to have far more patience than you ever thought you could have… but there are still limits. And even though your patience levels can seem limitless for your child, you may find that you don’t have the same tolerances when it comes to others or some of the ignorant things they say, whether innocently intended or not.

There are a few lists out there of things not to say to us parents, but this is more of a list of things not to say or else you may just push us beyond the breaking point. Don’t worry though, I’ll follow it up with some things that I think would actually be nice to say.

do not say

Do not say

  • Your kid just needs proper discipline
  • My kids would never get away with that
  • What made your kid autistic? Was it something you did?

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via stuartduncan.name

Read the rest of the post by clicking the link above.

Really identify with this post, and I’m sure Mom will agree with me. We’ve been told some of those things many times and it really, really, really gets our goat. This is a great list of things you should and shouldn’t say to us, so pay attention!!!

Eight things to remember about a mother of Autistic children – Cleveland Stay-at-Home Moms

I am the mother of three developmentally disabled boys; each falls at a different place on the Autism Spectrum. This is what I wish others knew.

1. I love my children, very much so. If you watch us together and it appears that I have not connected with my child; please don’t judge me. I have done everything within my power to connect; we have managed to the best of our ability.

2. My child is not spoilt. I do believe in discipline. He also has a serious disability, which makes him appear unruly by choice. This could not be further from the truth most of the time.

3. Yes, my children will talk and even babble while we sit and try to enjoy a nice dinner out of the house. They are not screaming, fighting, or even throwing food. You have no idea how unusual this is. However, I apologize; they do not mean to “ruin” your evening. We are simply trying to enjoy something that every other family in America takes for granted.

4. I am a stay-at-home mom. I often forget that we do not live in a house in a bubble and the rest of the world is able to hear us. I am aware that you are able to hear my boys screaming and throwing massive fits. I am not abusing them; they are simply very upset. You don’t have to believe me on the abuse. If you so choose, you could decide to speak with any of the government agencies we are currently working with; quite a few of whom are in our home on a regular basis.

5. I am also a woman with feelings. I know that the odds of me being able to attend your party or Girls’ Night Out of dinner at AppleBee’s and a movie at Tinseltown are slim. However, that doesn’t mean I wouldn’t like to be invited. It’s just a little gesture that shows you haven’t forgotten I exist.

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6. Please try to remember that I’ve lost many friends and even some family along the way on this journey that is Autism. When I call you to vent I am not trying to burden you with my life. I simply need a sympathetic or perhaps an empathetic ear to listen, nothing more.

7. In addition, each of my boys also has Sensory Integration Disorder. They either seek out or seek to avoid sensory related things. If these sought after actions results in a trip to the Emergency Room, please do not treat me as if I have Munchausen by Proxy. I also am likely not over-reacting; however, I have to be overly cautious. My boys can’t communicate effectively so it’s best for me to take them in to be sure. Think of how you might feel if you were me and you didn’t check and something was broken or seriously wrong.

8. Above all else, please just try to be supportive. I love my children more than life itself. You don’t have to live my life or agree with my methods but everything I do is for them. A little support and perhaps some love from my friends and family would be nice.

via examiner.com

I read this and many points resemble my life… all except 7 because Karan doesn’t have SID although I can completely identify with the author of this post.

The R-Word. Stop using it. Now. @EndTheWord

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Image courtesy http://www.r-word.org

Over a year ago, I’d written something to submit as part of my portfolio for my Master’s degree. Here’s a short excerpt (read the entire piece here):

Too often people use disabilities as an abusive way of insulting the so-called normal human beings. A few years ago, my family and I were in a restaurant, my then 4-year-old autistic brother started crying and refused to calm down. A patron sitting at the next table looked over and said very loudly: “What’s wrong with these people? If they have retarded children, they should keep them at home.” Then we were asked to leave the restaurant by the management because ‘the other diners were getting disturbed’. It hurt. It hurt because my brother is not retarded. He, like thousands of other people has an autistic spectrum disorder. It also hurt because it was acceptable then (and still is) to insult someone by way of calling them ‘retarded’ and prevent them from experiencing a routine aspect of life. It’s absolutely abhorrent when one hears the word ‘retarded’ being thrown around as if it were commonplace even in classrooms in secondary schools.

Last night I saw this tweet from Ellen Seidman (or @LoveThatMax as she’s known on Twitter):

Twit friends: For next week I’m tweeting at people who use “retard” as a hashtag—and asking them to take this pledge http://www.r-word.org

I had a look at their website and signed the pledge, and plan to spread the word as well. It just drives home the point that I was trying to make a long time ago: the r-word, or “retard(ed)” just hurts. It’s incorrect, offensive and derogatory.

The website has informative pages on why you should take the pledge, as well as an explanation of why the r-word is hurtful. While you’re at it, have a look at how many times the word has been used on the world wide web, on the R-word counter.

My brother isn’t retarded. He has autism. He doesn’t suffer from it. Give him, and anyone with intellectual disabilities, respect.

Would you stand up for a special needs person you didn’t know? via @AutisticHelper

via autistichelper.org

I spotted this video yesterday on AutisticHelper.org (from Twitter, via @cookiemonster82) and started sniffling and shedding a few tears while watching.

Edit: The video seems to have been taken down, but you can view it here

Karan’s had to deal with similar verbal outbursts and non-verbal glances of disgust. And it’s not like he can respond, being non-verbal and blissfully unaware (as far as we can tell) of insulting looks/words that come his way. Mom and I usually blast whoever it is if they say something, and throw back equally dirty looks if we get those.

Would you speak up for a special needs person, or stay quiet like some of the people in this video who thought it wasn’t their place to get involved?

On my part, I’d urge people to get involved. It raises awareness and no one deserves to be treated with disrespect. No one.

Shutdown or speak out? What November 1 means to me.

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Twitter – that wonderful giver of delightful and disastrous news – was where I first read about Communication Shutdown. The web site said:

“It’s a global initiative to raise much-needed funds for autism groups in over 40 countries. By shutting down social networks for one day on November 1, we hope to encourage a greater understanding of people with autism who find social communication a challenge.”

On the face of it, I thought: “Well that’s great…they’re raising money for a good cause!”

But somewhere in the back of my mind, a tiny itch was forming.

It eventually hit me that it was the second sentence I had a problem with. How on earth is avoiding Facebook or Twitter supposed to help understand how people with autism feel when it comes to communication?

I fully understand that currently, social networking is a major factor in communication between people. However, it’s not the end of it. Let’s say I log out of Twitter or Facebook for the entire day. I can text, call or knock on my flatmate’s door and strike up a conversation with her. My not logging on to various social networks has nothing to do with social communication. If anything, it might help wean me off my Twitter addiction (which is an entirely different story!). Say I even manage to stay offline for the day. I’ll be back to tweeting and Facebooking the next day, won’t I? I’ll be smug and self-righteous about how I played a role in Communication Shutdown and now I TRULY understand autism. Not.

My brother has autism and I still don’t understand it fully. Until I moved to UK last year, I dealt with autism on daily basis and I still don’t understand it fully.

How dare anyone think that by giving up Facebook and Twitter for 24 hours, they will understand what it is like to be autistic?

I’ve seen various reactions on the internet that don’t agree with Communication Shutdown. I know where they’re coming from, but I don’t see the point of those either. April is Autism Awareness Month and innumerable events take place then in many countries to raise awareness about autism, much like October is breast cancer awareness month, November (or Movember as it’s called!) is prostate cancer awareness month. Surely these are there to facilitate awareness of the causes. Did we really need another day – that too, a contested day – to show awareness of autism?

You want to raise money for autism, go for it. But don’t tell people they will have a better understanding of social communication problems that autistic people face. For one, not all autistic people communicate the same way: my brother can’t talk. Another child with autism can. If you’ve seen one person with autism, you’ve seen ONE person with autism. This is NOT a one-size-fits-all scenario. And second, many people with autism use the internet to communicate, or use technology to do so (my brother can’t…see why one size doesn’t fit all?) … telling “normal” people to get offline is quite possibly going against how many autistic people communicate.

If you want to understand the problems my brother faces however, get offline, chuck your phone, stop talking to everyone and don’t communicate even by signs. And shut your eyes for good measure.

Then come and tell me you understand a bit more about autism.

For the record, I’m not shutting down. It won’t give me any understanding of what my brother goes through; I’d rather continue with how I always do. Autism is a part of my life. I’d rather stay connected, engage with others and spread whatever awareness I can on a regular basis.

“I have Invisible Disabilities”

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This is one of the postcards from the August 1 2010 PostSecret update.

When I saw this, I thought of Karan. His autism is invisible. It doesn’t show itself on his face, his limbs … there is no outward flashing sign saying: “Something is different!”

Which is probably why when we go out somewhere and something upsets him and he reacts, people think that it’s just another bratty kid misbehaving, with a family who doesn’t know how to teach him manners.

But wait a minute… look carefully people.

That 5-foot 5-inch tall boy you see towering over his mother and now his sister (but only by a few cms, I assure you!) is crying or screaming in fear/discomfort, not because he’s interested in acting up. He’s stuffing his fingers in his ears because he’s scared. Not because he’s trying to be funny. He’s jumping on the balls of his feet because rocking makes him feel safe. He’s grabbing my clothes and Mom’s clothes to be closer to us because he doesn’t know how else to show he’s upset. He might even bite us because he’s frustrated.

Not because he’s badly behaved.

Think about that the next time you see someone struggling with their child in a mall, a park, a restaurant.

The next time you point at my brother and tell your child/partner: “Look at that kid, his parents can’t even handle it” or say something to the effect of how weird he is, don’t blame me for doing what I always do: walking up to you, giving my best dirty look, and asking you if you have a problem. And then you can do what you always do: shake your head and slink away like a coward.

Don’t mess with people who deal with autism or any kind of special needs every day. We’re stronger than you and we sure as hell don’t care what people think of us.