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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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!!!

Manzil’s annual concert – “I Can”

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(First picture in the slideshow was taken at the dress rehearsal a few days before the concert by @SaharLatheef. I don’t have very many pictures from the concert – I’d left my camera with my parents while I helped @shru_ the best I could with the video she was taking of the event.)

As always, Karan’s school hosts a concert for its students to participate in. I’d missed last year’s concert because I was away in UK, so I was quite excited about this year’s. It was held at the Sharjah Cultural Palace and this year was called “I Can”.

The event started off as always with a slideshow of all the students photographs, then the UAE national anthem and the Surah recitation by one of the students. After a singing performance by the students and the Best Buddies from Millennium School, Sharjah, there was a dance performance called Fire and Water. We saw two students graduating from the school this year, much to everyone’s applause and encouragement. Then we had the musical play, I Can, which was an adaptation of Helen Keller’s life. The concert ended as always, with a vote of thanks.

I always love going to these events … whether it’s their concert or their sports days (which I’ve said before). Even if you’re going through a particularly bad patch, attending these events never fails to lift spirits. It works for me anyway. You can go in feeling really bad about something, and walk out feeling on top of the world. Just seeing the student’s enthusiasm, hard work and effort paying off is such a lovely thing. You see the students really giving their all to put on an awesome show for their families and you see how much they’ve progressed since joining the school. The atmosphere is even more charged because of the expectations and hopes the audience has; it seems like such a normal thing…to perform at an event, doesn’t it? Preps for these concerts are even more than what other “normal” schools would go through. The students are given roles according to their ability and are trained to do it well. Karan had to walk in and then go to the fringe of the stage – he was playing a mountain hehe.

Can’t wait for their next event; one of the most exhilarating experiences I have every year.

The theme park for #specialneeds children

Where EVERYONE can play: Father builds theme park for special needs children… and names it after his own precious daughter

By
Daily Mail Reporter

Last updated at 6:37 PM on 25th May 2011

It’s the theme park with a difference. Queues are deliberately kept short, attendance is restricted so there’s not too much noise and it there’s no gaudy advertising promising thrills and adventure.

Yet Morgan’s Wonderland in Texas has proven a huge hit since it opened last year, attracting just the right number of visitors from 16 countries across the globe and from every American state except one.

The difference? Morgan’s Wonderland is aimed squarely at children with disabilities, even if three out of every four of the people who pass through its gates are able bodied.

Fabian Mendoza whoops with delight as he rides a carousel at Morgan's Wonderland. The disabled are allowed into the park for free, while tickets for those with them cost just $10Fabian Mendoza whoops with delight as he rides a carousel at Morgan’s Wonderland. The disabled are allowed into the park for free, while tickets for those with them cost just $10

The carousel has chariots for wheelchairs. Braille games decorate side panels on the jungle gym and table-high sandboxes allow just about any child to build a castle.

Those suffering from autism, orthopaedic problems, the mentally handicapped and children who have seizures are among the most regular visitors.

The park, outside San Antonio, is the first of its kind in the U.S. philanthropist Gordon Hartman named it after Morgan, his 17-year-old daughter, who can’t perform simple maths and struggles to form sentences because of cognitive disabilities.

Despite being designed for those with special needs,
the park is playful enough to be enjoyed by anyone. Its motto is ‘Where Everyone Can Play.’

Refugio Valls enjoys a wheelchair swing, one of 20 attractions at the park. Many are specially designed to allow two wheelchairs to ride side-by-sideRefugio Valls enjoys a wheelchair swing, one of 20 attractions at the park. Many are specially designed to allow two wheelchairs to ride side-by-side

That inclusion was
important to Mr. Hartman, who watched heartbroken as his
daughter tried to join in with three youngsters tossing a ball in a pool
but couldn’t interact. The children were just as unsure how to involve
Morgan, so they simply stopped playing.

The park is one-tenth the size of SeaWorld on the other side of San Antonio. But spending an afternoon at Morgan’s Wonderland — the average guest
stays about 2 1/2 to 3 hours — is deliberately designed not to be an
exhausting, endless trudge from one overcrowded ride to the next.

Reservations are encouraged because of the daily attendance limits, but general manager Dave Force admits, “We’re not going to turn
away a family that’s driven all the way from Arkansas.”

Each guest is given an electronic wristband that allows families
to keep tabs on their group in the park, and scanning the wristbands on
some rides even emails a free photo back home.

Taking Flight, a bronze sculpture of hands and a butterfly is a focal point at the 25-acre San Antonio park which includes live versions of the insects in its Butterfly PlaygroundTaking Flight, a bronze sculpture of hands and a butterfly is a focal point at the 25-acre San Antonio park which includes live versions of the insects in its Butterfly Playground

‘It’s so nice to have a place like this,’ said Tifani Jackson of Austin, Texas, who visited the park with her son Jaylin who has Williams syndrome, a rare genetic disorder that causes learning disabilities and slows development.

As she spoke, Jaylin, 11, tried to pull her back to the off-road adventure ride, where rugged-looking Jeeps that are wheelchair accessible twist and turn through a short track.

Other attractions at the 25-acre, $34 million park include jungle gyms wide enough to fit two wheelchairs side-by-side, and a Sitting Garden, a quiet and meditative place, that’s a favourite among parents with autistic children.

In Sensory Village, an indoor mall of touch-and-hear activities, is a mechanic’s shop with tools mounted to a low table. A light touch
of the drill triggers the crank-like sound of a bolt driving flush into
an engine block. Next door is a pretend supermarket with plastic
lobsters, ears of corn and cans of tuna, and cashiers who always hand
back the right amount of invisible change.

A specially adapted train slowly takes visitors on a mile-long loop around a lake, one of the favourite attractions at the parkA specially adapted train slowly takes visitors on a mile-long loop around a lake, one of the favourite attractions at the park

Most interactive is a
low-lit space with a touch-sensitive floor, giving the illusion of
walking across a pond as the water ripples and colours burst with every
step. White canvases on the walls, meanwhile, transform into butterflies
chasing a shadow any time someone steps in front of the projector.

Sprouting
from the sandboxes are shovels and rakes that can
be operated sitting down from a wheelchair. Another nearby sandbox is
elevated 4 1/2 feet, next to a musical garden of giant xylophones and
chimes. The chariots on the carousel are reserved for wheelchairs, and
many of the horses are fitted with high back cushions for children who
need the support.

When Mr. Hartman first envisioned the park, he could only dream of its success. Now youngsters enjoy such attractions as a regular playground swings and swings for wheelchairs in the same
park.

That’s where nine-year-old Kriste was on a recent afternoon, her
wheelchair rolled onto a platform and being swung back and forth by two
park volunteers.

‘She doesn’t talk,’ said her father, Michael Hernandez. ‘But you can tell she really enjoys it.’

Loved, loved, loved reading this story. Karan has never really been to a theme park. Well, we were in Disneyland, on the one-and-only vacation we’ve been taken on, but he was 2 and eventually missed out on most of the rides because he was crying a lot/was upset. He hadn’t been diagnosed yet so we had no idea why he was upset in the crowds and amidst the noise.

iPad2: will it help or won’t it?

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The iPad2 arrived yesterday and I think we’re keeping our fingers crossed. Karan’s only played with the Talking Tom app right now and so far he’s loving it. He’s been blabbering to Tom for a while, much to our delight. We’ve also started populating the Grace App with pictures he is familiar with and have started getting him picking a picture for whatever he wants before he gets it.

We’re definitely not expecting miracles…he’s not going to suddenly start communicating in a day and we know that. I think we’re just hoping he takes to it, gets comfortable with using it and is able to convey what he wants and what he thinks to us.

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.

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.

Awareness is not Enough – What Autism Means to Me (The sibling’s view)

Awareness is not enough.

We (The Autism Community) need for you to know what Autism is.
We can only achieve that through Autism Understanding and Acceptance.

Awareness of autism has risen dramatically in the past few years, and awareness is certainly a good place to start. Increased awareness has helped parents get earlier diagnoses for their children, and it has helped secure funding for research. However, it hasn’t done much to change public perception of what autism really is.

This is a call out to the world to understand the people and the disorder.
This is a call out to the world to accept the people and the disorder.

You can not understand or accept the people until you understand and accept the Autism they have.

Autism is a part of who they are.

The media has focused almost entirely on children with autism – but children grow up. In a society where one in 110 children is diagnosed with autism (the latest figures from the Centers for Disease Control), no one can afford to ignore the significance of this disability. People with autism are children, teenagers, adults, men, women, scientists, programmers, engineers, unemployed, in care homes … too many of them continue to be bullied, to be judged, or to just be ignored.

Each person is unique. Each person has their own unique set of strengths and weaknesses just like you or I.

The charities, the organizations, the groups, the parents, the people with Autism themselves… we ask you… no, we need you to know what Autism really is.

Today, we ask for your Autism Understanding and Acceptance.

This is what Autism is to me…

Echoing what my mother said…it’s a way of life. I don’t know if there is any other way to be, any other way to live. Families that go on outings, plan weekend trips together, go for movies, dinners, lunches…it seems surreal to me. It seems like a completely different world. And I’d imagine that’s what my world seems like to you. I grew up with autism. It is my life now. Some pictures from our growing years…

Italicized open letter courtesy Autism Understanding and Acceptance

Awareness is not Enough – What Autism Means to Me (The Mother’s view)

Guest post by Adita Divecha, Karan’s mother

Awareness is not enough.

We (The Autism Community) need for you to know what Autism is.
We can only achieve that through Autism Understanding and Acceptance.

Awareness of autism has risen dramatically in the past few years, and awareness is certainly a good place to start. Increased awareness has helped parents get earlier diagnoses for their children, and it has helped secure funding for research. However, it hasn’t done much to change public perception of what autism really is.

This is a call out to the world to understand the people and the disorder.
This is a call out to the world to accept the people and the disorder.

You can not understand or accept the people until you understand and accept the Autism they have.

Autism is a part of who they are.

The media has focused almost entirely on children with autism – but children grow up. In a society where one in 110 children is diagnosed with autism (the latest figures from the Centers for Disease Control), no one can afford to ignore the significance of this disability. People with autism are children, teenagers, adults, men, women, scientists, programmers, engineers, unemployed, in care homes … too many of them continue to be bullied, to be judged, or to just be ignored.

Each person is unique. Each person has their own unique set of strengths and weaknesses just like you or I.

The charities, the organizations, the groups, the parents, the people with Autism themselves… we ask you… no, we need you to know what Autism really is.

Today, we ask for your Autism Understanding and Acceptance.

This is what Autism is to me..

It’s a way of life. Everything in my life is centred around it. It dictates what I can and cannot do. Because of it, sometimes I do feel that I don’t have a life. And it’s not just me…it’s Karan as well. Does he really have a life? He can’t do so many things other 15-year-old boys do, he doesn’t have fun the way they do. It’s limiting. When I look at other 15-year-olds, I feel bad for him because he is, in a way, missing out. It’s not so much about me than it is about him. Normally you’d think when your child is 15, they can look after themselves and you’d be free from certain responsibilities. But my son is going to be a baby, mentally, all his life. Hopefully he will be completely independent in a few years but he will always be a child compared to other people his age. Your child has not grown up. Karan hasn’t grown up. He will not really grow up. It makes me sad to think that he isn’t truly experiencing everything as he should have done. But for me, it gives me constant stress because all I’m worried about is what will happen to him when I am not there. It stresses me out to an extent you will not believe.

Yes, autism has taught me to be more patient, to be strong, to be loving…more than I could have ever thought. It also helps in the sense that you come to know what people are really like; faced with autism, some people turn out to be nasty in a way.

It’s very easy for people to give talks and seminars and tell me to go out and do this and do that. Most of the time I want them to just shut up. It’s easy to give talks and lectures, but it is not easy to actually do what they say.

But Karan is my sweetiepie…the apple of my eye. He is so loving…so loving. The thing that amazes me is that Karan does not understand how to hate or to dislike anyone. He’s always smiling, trying to hug you or kiss you. It always amazes how he never gets angry with anyone. How we get angry with people, suddenly hold grudges. People with autism are so loving; Karan is a sweetheart. I’m thankful he is who is. He is my blessing. Because he is never going to lie to me, he’s never going to hate me, he will never break my heart. He is what he is…he will never be two-faced. Other parents have so much else to be worried about with “normal” teenagers, none of which I have to contend with.

You know, he loves it when I tell him he’s a handsome boy. A “normal” 15-year-old would probably cringe at his mother being so affectionate. But my son will always love me and want to be close to me. We will never grow apart.

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Italicized open letter courtesy Autism Understanding and Acceptance

Grace App for autism free on World Autism Awareness Day, 2 April 2011

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Screenshot of Grace App; supplied by Lisa Domican

We’ve recently ordered an iPad2 for Karan, having heard a lot about how apps are being used to encourage people with autism to communicate. My brother is non-verbal, which means he does not talk to communicate with us. He has a few signs, but a lot of times we guess what he wants, based on cues or routines.

I’ve heard about a lot of apps on the iPad/iPhone for people with autism and this is one of them – and it’s going to be available for free on April 2 2011, which is World Autism Awareness Day.

Lisa Domican is a mother of two children with autism. Her daughter Gracie is severely autistic girl who doesn’t speak a lot but uses pictures to communicate. Lisa explains the concept of using pictures well: “Many kids with autism or speech delay use pictures attached to a board to ask for what they need or say how they feel. These boards are stored in a book which they have to carry around with them. Even if and when they begin to say a few words, they may be difficult to understand and so they rely on a growing picture vocabulary which can become very unwieldy.”

She says, “I wanted to keep supporting her speech development by prompting her to use her own voice – with the support of her pictures anywhere.”

She developed Grace App for this purpose and explains how it works: 

Grace App replicates the picture exchange system by storing a basic picture vocabulary of Foods, Things I like, Places, Colors, Sizes and Shapes on an iPhone with a function for creating a sentence. It can also be used on iPod Touch and iPad. On the smaller devices you tilt and the cards are enlarged for you to point and read together. iPad works on Landscape or Portrait view with the pictures big enough to be read easily without enlargement. There is also a facility for finding, taking and sharing photographs of all the other things that you may need or want. You can sort the pictures into categories, delete those you don’t need and teach the child or user to add their own independently – giving them power over their communication choices.

The app was created with the support of O2 Telefonica and developed by Steven Troughton-Smith. Grace App was awarded a United Nations, UNGAID sponsored World Summit Award for m- Learning and Education in 2010.

So those interested in trying out the app can consider getting it on April 2 2011 when it will be available on the iTunes store for free. Once you have the app (whether you’ve downloaded it for free or bought it) you will be able to get whatever updates the app undergoes in the future. A major update will also be launched soon.

Lisa says, “My goal is to engage and inform as many educators, therapists, parents, carers and service providers about Grace App and hopefully as a result, get the gift of independent expression to as many people with Autism and other disabilities as possible. Everyone should have the right to say what they want. My aim is for them to get it!”

I think it would be interesting to see how users can customize the pictures to get the person with autism to communicate with a familiar photo. I know that when I try this app out I’d love to add our own pictures, just so that Karan has a sense of familiarity and it hopefully won’t be too hard for him to understand how to use the app. Last night, while we were getting ready to sleep, he pulled me downstairs and signed for food, then tried to open the fridge, then signed for toilet and ran back upstairs. It’s times like these I’d like to know what he really wanted. So fingers crossed, that apps like this one will clear up communication channels between us.

For more information, check www.graceapp.com

Disclaimer: I was contacted by Lisa regarding the app; I endorse her efforts to help people with autism. I have not tried the app myself, but will be doing so once I get the iPad2 I’ve ordered.

Donate books to help raise funds for special needs school

Hello,

I’m blogging to appeal for book donations. Manzil, a centre for special needs children, which is based in Sharjah, is planning to host a book sale sometime in June (I don’t have exact dates yet) to raise funds for their school.

My brother has been going to their school for quite some time now, and has made tremendous leaps and strides towards being able to care for himself. Their school isn’t as large as some of the more commonly known special needs institutions out there in the UAE, which is why they’re probably more in need of funds and support. They do great work and have a lovely, qualified staff who take pride in what they do.

If anyone has any books they’d like to donate, it’s terribly easy. Autism & Us has partnered up with TwitBookClub to host this tweetup: Books for … Manzil. We’re collecting books to donate to Manzil to feature in their booksale. #ManzilBooks makes it easier for the Twitter community to gather and donate their books for a good cause. And when the booksale is being hosted in June, they’re expecting to have 10,000 books to sell, so I’ll put up another twtvite closer to time. Books and charity…it all goes rather well together!

So anyone cleaning out their bookcases, get over to the twtvite page and RSVP immediately!

Thank you.