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"Do you mind me asking what is wrong with him?" Yes, I do.


"Do you mind me asking what is wrong with him?" Yes, I do.
By COURTNEY DAWSON   Sunday 30 June 2013
I am the mother of a fantastic eight-year-old boy who is severely disabled. He has Autism, developmental delay, Cortical Vision Impairment, hearing loss and he is still learning to walk. He has no communication, he cannot feed himself and is still in nappies.
Last week I read the story about Miles Ambridge’s class photo(Mile Ambridge was a little boy in the US who was excluded from him class photo because was in a wheelchair) and it reduced me to tears.
schoolphotoapart1 380x213 Do you mind me asking what is wrong with him? Yes, I do.
I read it while watching Masterchef with my child’s Behaviour Support Worker (we are on a huge and exhausting eight-week journey to get kiddo to sleep in his bed all night) and I felt the tears burn in my eyes.
When I was alone, I cried. I am still crying. Not because of the outrage or blame or any of that, but because this story about a child with a disability was such real talk, real life – this is happening.
owen1 Do you mind me asking what is wrong with him? Yes, I do.
This is Courtney’s darling son Owen.
I felt really stupid that my son’s school photos came home on Friday and I was mad that he wasn’t wearing his adorable sweater in them. He was sitting in a row with his fellow special needs classmates, being adorable (as they all were, good looking little dudes!) and it never even occurred to me that he wouldn’t be included, ever. Owen attends an incredible special needs school in our area and I have never seen anyone excluded in a school photo. Or in any school activity.
Not every child with a disability has access to a special needs school, nor may their parents want to place their child there, but I wouldn’t have it any other way. At his school, the only way he is different is in his personality, likes and dislikes – just like any kid at any school – because all kids are different.

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How To Make Museums More Inviting For Kids With Autism


How To Make Museums More Inviting For Kids With Autism



Last January, Noelle Murphy and her family were on their way to the Please Touch Museum for children in Philadelphia. Right before they arrived, 3-year-old Dylan had an accident.
"He wet himself," Murphy said, "And we were thinking, 'Oh no, how are we going to deal with this?' "
Dylan has autism, and his mom, Noelle, tends to choose at-home activities over unpredictable outings like a day at the museum. If Dylan becomes overwhelmed by his surroundings, he might yell loudly, or drop to the floor and refuse to get up. For Noelle, that's not out of the ordinary. But when strangers around them are added to the mix, it can make for an embarrassing scene.
But that day at the museum was different for the Murphys.
They took advantage of Play without Boundaries — an hour of museum time for kids with special needs. No weirdness, no awkward explanations, just families with other families who understand the challenges of being in public with kids who are on the autism spectrum.
"When we got there, they had a pair of hospital scrubs in his size, they took his dirty pants and washed them," Murphy said. "It was an extremely different experience than what we are used to."
study released Monday by the American Alliance of Museums finds more and more of these centers for learning and preservation are also places where health awareness is on display. The Please Touch Museum is one of over 30 museums in the U.S. that has responded to the special needs of visitors with autism.
"My first reaction in the car on the way home was to cry," Murphy said. "My husband asked why I was crying, and I said it was so nice to finally take him somewhere other kids go without having to worry about an unpleasant experience ... for us and those around us."
But it's not always easy to take a kid with autism out into the world, especially a museum. Arecent tally found that 1 in 88 children in the U.S. is somewhere on the autism spectrum. For these youngsters, if a place doesn't have appropriate accommodations, museum-going is a no-go for much of their childhood. That's because so often, what seems like a fun diversion ends up causing feelings of anxiety and sometimes panic.
That's why some museums have made special accommodations. "During those hours the museum looks different," said Leslie Walker, Please Touch Museum's vice president for community learning.
Flashing lights are dimmed, and booming music is turned down. Kids who want a sense of security about their visit are encouraged to create custom schedules and maps beforehand. And museum employees who will teach kids about the exhibits go through sensitivity training to learn what needs a child with autism might have to interact like their peers.
"They know now to bend down and get on that kid's level, and to wait awhile before following up if they ask a question," Walker said.
At museums that acknowledge not every kid craves raucous, stimulating sights to have a good time, parents of children with autism find public places where they can be themselves. And they don't have to miss out on experiencing another childhood pastime with their kids, like getting lost in a museum...
Read More at NPR

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5 Ways to Prepare for the End of Your Autistic Child's School Year


Be Ready Your Child's 18 and 22nd Birthdays 
Take Charge of Your Older Child's Changing Needs 
By: Lisa Jo Rudy, About.com Guide
Updated June 20, 2013
If the media is reporting accurately, there are an awful lot of parents out there who are surprised and appalled when their child with autism turns 18 and becomes a legal adult -- and even more surprised and appalled when they turn 22, and age out of the educational system. There are plenty of surprising things about autism, but this should not be one of them. Bottom line, children with autism do, in fact, become adults with autism. Whether or not you’re ready and set, here it comes.
What can you do to prepare for those inevitable moments when (1) your child becomes a legal adult and (2) your child ages out of the educational system? Here are a few tips to get you started.

  • Plan ahead for your child’s 18th birthday. Even if your child with autism behaves as if he or she were much younger, the reality is that an 18 year old is legally an adult. That means, unless you have planned ahead, you have no legal right to manage your child’s finances, healthcare, or lifestyle choices. If you wish to continue to manage your child’s affairs, you’ll need to apply either for legal guardianship or have your child provide you with a healthcare proxy, financial proxy, and power of attorney. Do this immediately, as a medical emergency after your child’s 18th birthday could become a nightmare if you don’t have the legal right to make decisions on his or her behalf.
  • Plan ahead for your child’s 22nd birthday. On that date – even if it falls in the middle of the school year – your child no longer qualifies for educational programs under the IDEA (Individuals with Disabilities Education Act). What will happen next? If you’ve been working with your school district and Vocational Rehab to provide your child with gainful or at least regular employment, you’ll be all set. If not, you may have a full time adult on your hands – and no options for how best to keep him or her engaged, employed, and happy.
  • Set up a special needs trustThis is a legal entity that allows your child to have access (through a trustee) to funds you make available – but those funds are not considered relative to social security and other entitlements for people with disabilities. Don’t have extra funds to put into a special needs trust? That’s ok: you can set up the legal entity quickly and easily, and then make the trust the beneficiary of a life insurance policy. That way, your child will have funds to pay for his or her needs after you’re gone.

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MRI reveals kids with autism may find human voices irritating




It's long been observed that many kids with autism have a hard time communicating and socializing with others. Now a new study using MRI scans provides some clues as to why.
Thanks to a weaker connection between the brain's language and reward centers, the human voice may provide little to no pleasure at all to kids with autism.

As they report this week in theProceedings of the National Academy of Sciences, researchers were able to spot "underconnectivity" using functional MRI, which tracks blood flow to look for brain activity.

Researchers scanned the brains of 20 children (average age: 10) with so-called "high-functioning autism" -- normal IQs but trouble hearing emotion in voices -- and 19 kids without autism but in the same age and IQ range. Not only did they find that those with autism exhibited weaker connections between the part of the brain that responds to the human voice and two regions associated with reward, but there was also a weaker link between the brain's voice processors and the amygdala, which involves emotion -- including the ability to perceive emotion in others.
"This is an elegant approach to using neuroimaging to better understand [autism]," Andrew Adesman of the Steven and Alexandra Cohen Children's Medical Center of New York, who is not associated with this study, said in a news release. "The natural next step is to try to replicate these findings in further studies, and to expand the research to include younger kids."
It's still unclear which came first -- the weaker brain connections or the lack of use of those connections due to some other neurological deficiency. Either way, these weak links suggest not only difficulty processing emotion in others' voices, but perhaps difficulty getting any pleasure out of voices at all...

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Minority children with autism lack access to specialists


June 17, 2013
9:13 AM

Editor's Note: Dr. Arshya Vahabzadeh is a resident psychiatrist at Emory University's Department of Psychiatry and Behavioral Health.
African-American and Hispanic children are far less likely to be seen by specialists - for autism, but also other medical conditions - and also less likely to receive specialized medical tests than their white peers, according to a new study published Monday in the journal Pediatrics.
Dr. Sarahbeth Broder-Fingert and colleagues studied the records of 3,615 children with autism at the Massachusetts General Hospital,  specifically looking at the rates of both referral to specialists and medical tests undertaken.  They discovered that children from African-American and Hispanic families were far less likely to receive specialized care or specific medical tests such as a sleep study, colonoscopy, or endoscopy.
When compared to their white peers, African-American children were three times less likely to see a gastroenterologist or nutritionist, and half as likely to see a neurologist or mental health specialist, according to the study. The story is similar among children from Hispanic families.
If a child has autism, the best outcomes are achieved through a combination of early diagnosis of the disorder and early intervention with behavioral therapies.
Another important element is the treatment of conditions which often coexist with autism, such as  psychological, neurological, and gastrointestinal problems. A referral to a specialist is often needed.

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Mom Struggles to Love Twin Born With Half a Face


Feb. 21, 2013


The Machin boys are identical twins, but Harry was born with a rare disfigurement: his left eye, ear and nostril never fully developed.
Now that they are 7, Harry's face makes no difference to his twin Oliver, but their mother struggled for two years to love them equally.
"When I cuddled him for the first time, waves of terror swept over me," said Charlene Machin, 33, of Staffordshire in Britain. "How could I possibly love this little boy when he looked like this?"
"People assume that maternal instinct kicks in as soon as you hold your child for the first time -- but mine didn't," she told the Daily Mail newspaper. "I just couldn't love my son when he looked like this. Instead I just felt grief -- grief for a life that I felt had been taken from me, a normal life that should have been Harry's."
ABCNews.com talked to Machin's husband, Mark Machin, who did not want to participate in an interview. He said his wife was out of the country.
Today, her bond with Harry is loving and strong. But Machin's initial response, then her adjustment, illustrate the ways in which parents deal with the surprise of having a child who is disfigured. Advocates say that honest stories like theirs help others to accept the disabled.

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