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.

At #manzilbooks at @wildpeeta

First, have a look at the lovely timelapse video that Shruti (aka @shru_) created. Then we’ll get on to the other stuff!

Along with @TwitBookClub, I hosted a event at Wild Peeta OS at DWTC (thanks @wildpeeta!), asking people to donate their unwanted books. Manzil, a centre for challenged individuals, is a small institution doing a lot of work for people with special needs and they’re hoping to host a fundraiser soon where they will sell all the books they have collected.

We’re still collecting books for them, so please get in touch with myself (@DevinaDivecha) or Anastasia (@TDAllonsy) or email me at autism at devinadivecha dot com and we can arrange to pick up the books from you. They were initially hoping to host the event in June, but frankly, it’s mostly been our efforts through Twitter that have seen results, so they don’t have very many books yet to justify hosting an all-day fundraising event, so the date has been pushed back. So I urge you to please help with this…spread the word…that’s all I ask.

A BIG thank you to everyone who showed up (we collected 102 books that day!), and I hope you can pass this info along so the school benefits from whatever contribution people have to make.

To round it off, here’s a look at some pics from the event, where we’re mostly just having a laugh:

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Walk for #Autism, Dubai

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The Walk for Autism took place at Za’abeel Park yesterday, April 30, 2011. Registrations opened at 4pm and the walk was meant to start at 5pm; Mom, Karan and I got there around 4:50pm because we knew that if Karan was made to wait around for too long, he’d get irritated. We registered and got our hands stamped so we could enter the park without paying the customary Dhs5 entry fee.

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Then we faffed around with a few pics and clicks:

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It was a few minutes past 5pm and we figured we should take Karan to the toilet. The perennial problem of disabled toilets being *inside* the male/female enclosure arose, but I walked into the female toilet, cleared my throat and told the women inside that my brother has autism and he cannot go to the toilet alone, so could I bring him in? Everyone said, yes of course and I quickly took him in.

When I came out, the walk had just started!

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The walk is usually quite short. So we took two rounds instead of just the one. There were many people there, families, individuals, companies even. My placard got quite a bit of attention. I was asked about 4-5 times if I would allow a photograph taken of me and Karan together; I said yes. Video cameras also joined in; I was followed for a good few seconds by at least two videographers. Yay, more awareness!

After the walk, the base of the amphitheatre-like area was filled with stalls, and Dubai Drums was putting on a performance.

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Karan was thirsty, natch 🙂

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And we found Karan’s school, Manzil (for whom I might add, we’re collecting books next weekend, to donate to them for their fundraising booksale) had a stand at the walk too!

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When we were leaving, Karan decided to plop down near the fountain and take a good and long look!

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Thanks to all the organizers of the event, to the people who put up stalls and to everyone to attended. A lovely evening.

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.

Karan’s first Tuesday Workshop @thejamjar

Guest post by Adita Divecha, Karan’s mother

Note: Sorry I didn’t take any pictures; Devina already told me I should have!

Devina had arranged for Karan to join the Tuesday Workshops organized by START at the Jam Jar in Al Quoz. They have 1/1.5 hour sessions every Tuesday where children with special needs get to do some artwork.

Karan has been doing a lot of painting in school and we thought this might be something he would enjoy and hopefully get involved in.

I was a bit nervous initially; I’ve never taken him outside for painting or art before. But I drove to the Jam Jar yesterday and found it easily enough. It’s a big open space inside and there were a few people already there, sitting at the long table with thick sheets of paper in front of them.

We met with Nicola who was from START and I signed in. There were also people from Dubai One filming, although I’m not exactly sure for what. They were asking volunteers questions about their work at START I think.

The volunteers were getting the kids to dip their fingers in thick paint and copy the artwork in front of them. Karan isn’t very good at imitating yet, and he hates his fingers brushing against in any new substance, but we tried. He dipped one finger into a bowl of blue paint and had the most pained expression on his face as he did so. He then wiped his finger all over his t-shirt. Then we hurriedly put an apron on.

So I asked for a brush for him and then he was okay. He did four paintings; didn’t copy the design very well but had wonderful splotches of bright paints all over his sheets.

After an hour and a little more, he got a bit whiny so we decided to leave while he was still in a reasonably good mood.

I think he liked it … let’s see what he does next week.

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