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My Son Has a Kind of Autism No One Talks About This

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Like most parents of children with autism, I have been reading about the family in California who is being sued by several families in their neighborhood. The lawsuitcontends that their child is a public nuisance because of his behaviors that his parents failed to fix.

One of the plaintiffs in this case stated “This is not about autism. This is about public safety.”

But he is wrong. This is absolutely about autism. It’s just not about the autism people hear about.

The media shows us all of the feel-good stories, like the child with autism who gets to be the manager of the high school basketball team, or the boy with autism who goes to the prom with the beautiful girl, or the girl with autism who is voted onto the homecoming court. We light it up blue every April and pat ourselves on the back for being so aware.

But we aren’t aware.

Because for every boy with autism who manages his high school basketball team, there are 20 boys with autism who smear feces. And for every girl with autism who gets to be on the homecoming court, there are 30 girls with autism who pull out their hair and bite their arms until they bleed. And for every boy with autism who gets to go the prom, there are 50 boys with autism who hit and kick and bite and hurt other people.

This is the autism that no one talks about. This is the autism that no one wants to see.

We aren’t aware.

One of the plaintiffs said “We’re not upset about him being autistic. We are concerned and upset about his violence (toward) our children.”

There is no way to be upset by this child’s behaviors and not be upset about autism.

Autism and behaviors go hand-in-hand. Why? The behaviors are communication. Individuals with autism often can’t communicate in a way that typically functioning people can understand. So they do things to get their needs met. And often the things they do are scary and violent.

My Son Has the Kind of Autism No One Talks About — Part 2

We aren’t aware.

My son, who is the same age as the child in this story, was extremely aggressive when he was younger. He did all of the things that the child involved in this lawsuit did. My son ran after other children on the playground just to push them down. He hit. He kicked. He bit. He pulled hair. And I never knew what was coming. For the longest time, I would flinch when he ran up to me…I didn’t know whether he was going to hug me or hit me. Can you imagine, as a mom, what that’s like? To flinch when your child runs to you?

We aren’t aware.

Because I didn’t know what my son was going to do to other children, we stopped going to the park. We stopped going to the Mommy and Me class at the library. We started going to the grocery store at 6:00 a.m. when most people weren’t around. He didn’t go to daycare but had a sitter at home so he wouldn’t be around other kids in a daycare setting. I essentially isolated him in order to keep other people safe. Can you imagine what it’s like to be a mom and not be able to take your child to the park? Or have your child attend birthday parties? Or have play dates?

We aren’t aware.

Because of my need to isolate my son, I also isolated myself too. I watched from my window as other moms in the neighborhood sat in their camp chairs and chatted while their children played. I couldn’t join them because my son couldn’t be around the other kids. Once a mom asked if my son could come to their house and play with her son. Can you imagine what it was like to feel so excited and then feel so ashamed when, after explaining my son’s issues to her so she would be aware, that invitation was rescinded?

We aren’t aware. Not at all.

But we can be. We can open our eyes and understand that autism isn’t all about the high functioning child who is “quirky” but OK to be around. Autism isn’t all about the six-year-old who can play Piano Man better than Billy Joel. Autism can be hard. Autism can be sad. Autism can be messy. Autism can be violent. Autism can be isolating.

My Son Has the Kind of Autism No One Talks About — Part 2

Once we become really aware, lawsuits like this won’t happen. Why? Because instead of putting blue lights on our front porches, we will go outside with our kids and we will help them play together…typically functioning kids and kids with autism. We will get to know our neighbors and we will embrace the children with behaviors and embrace their parents along with them.

We will learn what things trigger our child’s classmate who has autism so that we can help the children interact while avoiding things that will cause aggression. We will be a true village, including those who can model appropriate behaviors and those who are trying so hard to learn them. We will work on teaching our children not to hit and how to avoid being hit.

The parents involved in this lawsuit, on both sides, need to do more. More education, more understanding, more inclusion and more involvement.

Now tell me, is autism the real public nuisance?

We can become aware … if we really want to.

 

 

 

 

 

 

source;huffingtonpost.com/

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10 Things Every Child With Autism Wishes You Knew

Some days it seems the only predictable thing about it is the unpredictability. The only consistent attribute–the inconsistency. Autism can be baffling, even to those who spend their lives around it. The child who lives with autism may look “normal” but his behavior can be perplexing and downright difficult. Autism was once labeled an “incurable disorder,” but that notion has crumbled in the face knowledge and understanding that increase even as you read this. Every day, individuals with autism show us that they can overcome, compensate for and otherwise manage many of autism’s most challenging characteristics. Equipping those around our children with simple understanding of autism’s basic elements has a tremendous impact on their ability to journey towards productive, independent adulthood. Autism is a complex disorder but for purposes of this article, we can distill its myriad characteristics into four fundamental areas: sensory processing challenges, speech/language delays and impairments, the elusive social interaction skills and whole child/ self-esteem issues. And though these four elements may be common to many children, keep front-ofmind the fact that autism is a spectrum disorder: no two (or ten or twenty) children with autism will be completely alike. Every child will be at a different point on the spectrum. And, just as importantly, every parent, teacher and caregiver will be at a different point on the spectrum. Child or adult, each will have a unique set of needs.

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Here are ten things every child with autism wishes you knew:

1. I am a child. My autism is part of who I am, not all of who I am. Are you just one thing, or are you a person with thoughts, feelings, preferences, ideas, talents, and dreams? Are you fat (overweight), myopic (wear glasses) or klutzy (uncoordinated)? Those may be things that I see first when I meet you, but you’re more than just that, aren’t you? As an adult, you have control over how you define yourself. If you want to single out one characteristic, you can make that known. As a child, I am still unfolding. Neither you nor I yet know what I may be capable of. If you think of me as just one thing, you run the danger of setting up an expectation that may be too low. And if I get a sense that you don’t think I “can do it,” my natural response will be, why try?

2. My senses are out of sync. This means that ordinary sights, sounds, smells, tastes, and touches that you may not even notice can be downright painful for me. My environment often feels hostile. I may appear withdrawn or belligerent or mean to you, but I’m just trying to defend myself. Here’s why a simple trip to the grocery store may be agonizing for me. My hearing may be hyperacute. Dozens of people jabber at once. The loudspeaker booms today’s special. Music blares from the sound system. Registers beep and cough, a coffee grinder chugs. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can’t filter all the input and I’m in overload!

My sense of smell may be highly sensitive. The fish at the meat counter isn’t quite fresh, the guy standing next to us hasn’t showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they’re mopping up pickles on aisle three with ammonia. I feel like throwing up. And there’s so much hitting my eyes! The fluorescent light is not only too bright, it flickers. The space seems to be moving; the pulsating light bounces off everything and distorts what I am seeing. There are too many items for me to be able to focus (my brain may compensate with tunnel vision), swirling fans on the ceiling, so many bodies in constant motion. All this affects how I feel just standing there, and now I can’t even tell where my body is in space.

3. Distinguish between won’t (I choose not to) and can’t (I am not able to). It isn’t that I don’t listen to instructions. It’s that I can’t understand you. When you call to me from across the room, I hear  Jordan.  Instead, come over to me, get my attention, and speak in plain words: “Jordan, put your book in your desk. It’s time to go to lunch.” This tells me what you want me to do and what is going to happen next. Now it’s much easier for me to comply.

4. I’m a concrete thinker. I interpret language literally. You confuse me by saying, “Hold your horses, cowboy!” when what you mean is, “Stop running.” Don’t tell me something is “a piece of cake” when there’s no dessert in sight and what you mean is, “This will be easy for you to do.” When you say, “It’s pouring cats and dogs,” I see pets coming out of a pitcher. Tell me, “It’s raining hard.” Idioms, puns, nuances, inferences, metaphors, allusions, and sarcasm are lost on me.

5. Listen to all the ways I’m trying to communicate. It’s hard for me to tell you what I need when I don’t have a way to describe my feelings. I may be hungry, frustrated, frightened, or confused but right now I can’t find those words. Be alert for body language, withdrawal, agitation or other signs that tell you something is wrong. They’re there. Or, you may hear me compensate for not having all the words I need by sounding like a little professor or movie star, rattling off words or whole scripts well beyond my developmental age. I’ve memorized these messages from the world around me because I know I am expected to speak when spoken to. They may come from books, television, or the speech of other people. Grownups call it echolalia. I may not understand the context or the terminology I’m using. I just know that it gets me off the hook for coming up with a reply.

6. Picture this! I’m visually oriented. Show me how to do something rather than just telling me. And be prepared to show me many times. Lots of patient practice helps me learn. Visual supports help me move through my day. They relieve me of the stress of having to remember what comes next, make for smooth transition between activities, and help me manage my time and meet your expectations. I need to see something to learn it, because spoken words are like steam to me; they evaporate in an instant, before I have a chance to make sense of them. I don’t have instant-processing skills. Instructions and information presented to me visually can stay in front of me for as long as I need, and will be just the same when I come back to them later. Without this, I live the constant frustration of knowing that I’m missing big blocks of information and expectations, and am helpless to do anything about it.

7. Focus and build on what I can do rather than what I can’t do. Like any person, I can’t learn in an environment where I’m constantly made to feel that I’m not good enough and that I need fixing. I avoid trying anything new when I’m sure all I’ll get is criticism, no matter how “constructive” you think you’re being. Look for my strengths and you will find them. There is more than one right way to do most things.

8. Help me with social interactions. It may look like I don’t want to play with the other kids on the playground, but it may be that I simply do not know how to start a conversation or join their play. Teach me how to play with others. Encourage other children to invite me to play along. I might be delighted to be included. I do best in structured play activities that have a clear beginning and end. I don’t know how to read facial expressions, body language, or the emotions of others. Coach me. If I laugh when Emily falls off the slide, it’s not that I think it’s funny. It’s that I don’t know what to say. Talk to me about Emily’s feelings and teach me to ask, “Are you okay?”

9. Identify what triggers my meltdowns. Meltdowns and blow-ups are more horrid for me than they are for you. They occur because one or more of my senses has gone into overload, or because I’ve been pushed past the limit of my social abilities. If you can figure out why my meltdowns occur, they can be prevented. Keep a log noting times, settings, people, and activities. A pattern may emerge. Remember that everything I do is a form of communication. It tells you, when my words cannot, how I’m reacting to what is happening around me. My behavior may have a physical cause. Food allergies and sensitivities sleep problems and gastrointestinal problems can all affect my behavior. Look for signs, because I may not be able to tell you about these things.

10. Love me unconditionally. Throw away thoughts like, “If you would just—” and “Why can’t you—?” You didn’t fulfill every expectation your parents had for you and you wouldn’t like being constantly reminded of it. I didn’t choose to have autism. Remember that it’s happening to me, not you. Without your support, my chances of growing up to be successful and independent are slim. With your support and guidance, the possibilities are broader than you might think. Three words we both need to live by: Patience. Patience. Patience

View my autism as a different ability rather than a disability. Look past what you may see as limitations and see my strengths. I may not be good at eye contact or conversation, but have you noticed that I don’t lie, cheat at games, or pass judgment on other people? I rely on you. All that I might become won’t happen without you as my foundation. Be my advocate, be my guide, love me for who I am, and we’ll see how far I can go

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Award-winning author and mother of sons with ADHD and autism, Ellen Notbohm’s books and articles have informed and delighted millions in more than nineteen languages. Her work has won a Silver Medal in the Independent Publishers Book Awards, a ForeWord Book of Year Honorable Mention and two finalist designations, a Mom’s Choice Gold Award, Learning magazine’s Teacher’s Choice Award, two iParenting Media awards, and an Eric Hoffer Book Award finalist designation. She is a contributor to numerous publications, classrooms, conferences and websites worldwide. © 2012 Ellen Notbohm www.ellennotbohm.com Contact the author for permission to reproduce in any way, including posting on the Internet. 

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A Different Way of Thinking About Autism

What if the world stopped seeing autism as abnormal? Many people with Asperger’s syndrome or autism embrace their condition. They seek respect for ‘neurodiversity’, not a cure.

Even after Dawn-joy Leong was diagnosed with Asperger’s syndrome in her early 40s, she felt there was something missing. The description was too pathological, too focused on the gaps. Everything she valued about herself, including how she saw the world – patterns within patterns – was called an impairment.

She didn’t think she was impaired. She has challenges, sure: being in a crowded room is like experiencing a Wagner opera, a bombardment of sound from every direction. She’d rather be somewhere quieter, where she can distinguish conversation as if she is picking out the harmonies of a four-part Bach piece.

Leong, an artist, was researching autism in 2007 for her multimedia composition Scheherazade’s Sea, which portrays her world from the inside out. Just like the famous storyteller, she survives the social world by spinning narratives others want to hear.

Dawn-joy Leong with Lulu

Dawn-joy Leong with Lulu

“So has many an Autistic person,” says the slight 50-year-old, sitting on a sofa in a Rose Bay apartment where she’s moved to finish her thesis in art, design and media at The University of New South Wales. Her assistance dog Lulu, a rescue greyhound, is lying beside her, all angles and haunches.

In her research one day, she came across ‘neurodiversity’ for the first time. A radically simple concept, coined by Australian sociologist Judy Singer in the 1990s, neurodiversity states that conditions like autism are natural brain variations, not brain malfunctions.

“Finding out about neurodiversity was life-changing,” says Leong. “I wasn’t ill. It’s just a neurological difference. It’s like having a Mac computer operating system when other people run Windows.”
She stopped using labels like “high functioning” and “low functioning”. They define a person’s abilities by how much they can mimic “neurotypical” behaviour – the name given to people with neurologically common brains.

Autistics experience the world differently. People call her high functioning, saying, “You don’t seem Autistic! You’re so normal!”

Relating this, she looks annoyed: “It’s not a compliment. To me, it’s like saying, ‘You don’t seem to be Chinese, you’re so Western!’”

“I want to show that autism doesn’t mean limited.”

The Autistic self-advocacy movement began to form in the early days of the World Wide Web, 30 years after the first autism groups were founded by parents. The community capitalises the A for Autistic, just as the Deaf community does with its D.

In 1994 there were already online spaces where people “on the spectrum” congregated, according to 47-year-old Tony Langdon, from Bendigo in Victoria. A year later, he set up a web page telling of his life as an Autistic gay man, at a time when the focus of autism was on children.

Langdon was diagnosed with Asperger’s Syndrome at 24. That explained why he’d always had trouble fitting in and why he’d developed tricks to cope with sensory sensitivities. Over time, it has given him a sense of identity.

A casual primary school grounds-keeper, Langdon has trouble hearing words in the presence of low-frequency noise and struggles with some goal-oriented tasks. But he can be rational in a crisis, which must help in his role as a volunteer fire-fighter. He can ‘hyper focus’ and sees patterns which give him an unusual window on the world.

He’s good at some things and bad at others. He doesn’t like repetitive work, or sitting inside playing video games. Despite coordination issues, he likes sports. He also enjoys meeting people.

“I want to show that autism doesn’t mean limited,” he says, “or even conforming to preconceived notions.”

“I ran my fingers over its trunk, feeling every bump and fell in love with what I saw.”

Being able to distinguish patterns in anything – sounds, sights, ideas – is common to Autistic people. Elinor Broadbent, of Langwarrin in Victoria, uses a picture taken in Dunolly to illustrate how she sees the world. Most people would glance and see a dead tree, the 36-year-old says. But from 50 metres away, she had a different reaction.

“I could see the cracks in the trunk, the weather-worn surface and the patterns the lines made, as they curved around together,” she writes, via email. Typing gives her room to think.

“As a sensory seeker, I ran my fingers over its trunk, feeling every bump and pit and fell in love with what I saw. So I took a photo, to capture that moment, and it still leaves me with a sense of awe.”

As a service supervisor for Coles, Broadbent says her autism brings bonuses and negatives to her work. She’s good with routines and pays attention to detail. Observing patterns has helped her teach time management to other supervisors. But she finds it difficult to filter out noises, using coping strategies such as earplugs.At any given time in her job, she hears registers opening and closing, music playing, keys rattling, bags shuffling, feet scuffing on the pavement outside, car doors opening, people talking, the staff room door at the other end of the store opening and closing, noises from other departments and more. Her managers support her when her senses are flooded, which makes a “huge difference”.

She says Aspie supremacists “dream of islands full of people with Asperger’s”.
Katharine Annear

Neurodiversity received a profile boost with the recent publication of US writer Steve Silberman’s Neurotribes. He argues that people with differently wired brains have always existed – some of them geniuses because of their autism, not despite it – and details how diagnostic criteria have expanded. The rate of autism has risen from 1-in-2000 in the 1970s, to 1-in-68 this decade.

Meanwhile, the Autistic Self-Advocacy Network (ASAN) was founded in North America in 2006, to promote neurodiversity and give Autistic people a voice in discussions about autism. Its slogan is “nothing about us, without us”.

“Don’t try to cure me. Try to understand me.”

Another major US advocacy group, Autism Speaks (AS), has come in for sustained vitriol over its campaigning. “Autism Speaks wants you to hate Autistic people by demonizing autism as a fate worse than death,” reads a YouTube comment posted on one of its documentaries. “They tell you it steals your children and ruins marriages. How do you think it feels to be Autistic and hear that?”

Another comment: “Don’t try to cure me. Try to understand me.”

Neurodiversity activism is not like that in Australia. There’s no local equivalent of AS. Mainstream autism organisations have toned down their rhetoric from that seen six years ago in a fundraising advertisement from Autism Awareness Australia (AAA), which darkly warned that “30,000 Australian kids have been kidnapped – by autism”.

Local ASAN head Katharine Annear, diagnosed with Asperger’s Syndrome in her 20s, calls the ad part of a “shock, horror” approach that makes Australians fear autism. The 42-year-old, who speaks via Skype from her Adelaide home, is a part-time lecturer at Flinders University who also works in the disability field. She has swept-over hair, dyed different colours, and exhibits slight weariness from decades of campaigning.

A wooden box was built to lock up distressed clients at a Victorian day care centre run by Autism Spectrum Australia (Aspect), reported The Age. A 10-year-old boy was caged in a Canberra public school in March, according to the ABC. And The Sydney Morning Heraldreported a 16-year-old boy was found chained to his bed in Sydney’s Blacktown in November.

Other spaces used to seclude children with disabilities were listed by disability advocate Julie Phillips, in an August 2015 submission to the Senate Education and Employment Reference Committees. They included a locked cupboard, outdoor pens and a disused schoolroom otherwise used for junk.

One Special Developmental School, the submission alleged, had placed children in a room, the size of a disabled toilet, with wooden walls and no windows. It was bolted from the outside.

“If you were non-verbal, a young child, and in grief and pain all day, wouldn’t you be violent?”

Annear says sensory challenges can be suddenly overwhelming. Frustration with not being able to communicate can lead to challenging behaviour. Leong poses the question: if you were non-verbal, a young child, and in grief and pain all day, wouldn’t you be violent?

ASAN-AUNZ, which has 170 members, engages in systemic advocacy – submissions to the NDIS, for example, on how to include Autistic voices in services – and social media campaigning. Annear says new Facebook groups run by other Australians form almost daily.

Melbourne has a growing media and arts scene for younger people who are less interested in the local ASAN affiliate’s patient coalition-building. Monash University student Julia Pillai is founder of the Great Minds Don’t Think Alike podcast, which discusses neurodiversity from the view of neurodiverse people.

“People say they ‘understand’ why a parent would chain up their son.”

“We are stereotyped and objectified [in the media],” she says.”We tend to be either put in the gutter, such as when people say they ‘understand’ why a parent would chain up their son when they went out, or on a pedestal – insert genius-savant trope here.”

That kind of binary thinking isn’t helped by the description of autism as low- or high-functioning. In his book, Silberman quotes British psychiatrist Lorna Wing: “The spectrum shades imperceptibly into eccentric normality.”

Joel Wilson, 29, from Perth, says, “I function well at some things and horribly at others. I know Autistics who are pre-verbal – don’t speak – but, through accessible technologies, have university degrees.”

Within the Autistic community, there are differences over how to protest everyday indignities. Wilson was called a “scab” after he wouldn’t ridicule Aspect online for its day-centre wooden box. But he asks, “If a large organisation is shut down, then what happens to the [many] Autistics they support?”

And there is a gulf between self-advocates and mainstream autism organisations, often formed and led by parents.

“I haven’t had a positive interaction with any of them,” says Ashley Waite, a Melbourne Greens candidate who was diagnosed Autistic in her 20s.

“It’s a ridiculous notion that we’re doing something evil to these children.”

AAA’s CEO Nicole Rogerson, who calls AAA a “parent group”, admires the move to self-advocacy. She worries, though, that neurodiversity might obscure “very real challenges”.

Some Autistic people can’t speak for themselves and need others to advocate on their behalf, she says. Others need skills to reach their best potential.

“It’s a ridiculous notion [that] we’re doing something evil to these children,” she adds. “We love them to death.”

She has been criticised for not condemning the mother of the Blacktown teenager chained to his bed. But she stresses, “It’s never OK to abuse a child. Ever.”

“Of course, I’m a mum, and I’m going to look at it through a mum’s perspective. We need to support the family. That boy only has his mum. Demonising her online is not okay.”

ASAN’s Annear recognises there is often a lack of services, but says, “If you feel you can’t parent your child for whatever reason, we do live in a society where you can relinquish them. You don’t have to abuse and neglect them.”

There are common goals. Annear shares Rogerson’s concern that not all people on the spectrum are thriving. Much has been written of how some Autistics can flourish in professions such as engineering and IT. Annear worries about the person with an IQ of 160 and no independent living skills, who pees in a jar because they can’t face leaving their room.

Tony Langdon agrees many Autistics need help with challenges which can also include communication, sensory issues, self care and mental health.

“I’m not against treatment,” he says, “but treatments should be to improve the person’s quality of life, not to make them look ‘normal’ to society.”

In Neurotribes, Silberman wrote of young Autistic twin boys being given electric shocks in a California-based experiment in 1965 if they didn’t obey the researcher. Cattle prods were widely used that decade, in an attempt to stop a child’s Autistic mannerisms, such as rocking backwards and forwards.

Leong questions a behavioural modification technique called Applied Behaviour Analysis (ABA), which aims to teach Autistic children common social interactions such as looking someone in the eye. She says ABA wants to draw the neurodiverse into a neurotypical world. Looking into someone’s eyes can make her afraid because she doesn’t know why she’s doing it.

She says, “I agree that children need to learn basic manners, and if your Autistic child is violent because of an unknown reason, it has to be addressed … [but] is it to suit your social norms, or do you want your child to suffer less?”

The push for more Autistic representation has been realised at the Brisbane-based Autism Co-operative Research Centre (CRC), a world-first national co-operative body which brings together dozens of different organisations to study diagnosis, education and adult life. Each of their 43 projects has an Autistic person involved.

CRC head Judy Brewer, who has a 22-year-old Autistic son, says she was determined from the start to involve Autistic people. It took years for them to find a suitable board member.

“We didn’t want a token person,” she says, speaking in a personal capacity. “We wanted someone with a skills base we need.”

“There’s you and there’s me, but let’s develop a new concept of us.”

ASAN-AUNZ can trace its roots to the days before Facebook, when people communicated via internet relay channels (IRC) and Yahoo groups. Three of its current board, including Annear and Langdon, first met on the #a4 IRC channel.

Now social media plays a big role in activism – criticising news stories for an inappropriate focus, for example. The Twitter hashtag #actuallyautistic is popular. Ashley Waite also promotes neurodiversity via politics. “I think it’s necessary. A bunch of people yelling about it on social media is never going to be enough on its own.”

The politics of neurodiversity reminds her of where the queer rights movement was 20 years ago.

Waite says how political parties approach neurodiversity – wrong most of the time – reminds her of where the queer rights movement was at 20 years ago. “it’s very similar in terms of public perception and legal rights.”

Similarly, many parents used to want their gay children ‘cured’, she notes. “They used justifications like ‘they’ll never be able to have a family’, ‘they’ll never have a quote normal unquote relationship’. Ostensibly, what parents wanted was for the good of their children.

“The same thing is happening now – a large number of parents of Autistic children want them cured because it’d be ‘better’ for the child, but very, very few Autistic people agree with that.”

The word “cure” is a four-letter flag for many Autistic people, who see it as a negation of their existence. Annear says decades spent trying to find one “fundamentally says to Autistic people there’s something wrong with you”. Any number of causes have been suggested over the years, including being born in summer, diabetes during pregnancy, older fathers, low birthweight, high birthweight, being a second born, being a later born, living near a motorway, ‘cold’ parenting by mothers and, notoriously, vaccines.

Parents go to extreme lengths for a cure. Some make their children drink a bleach solution called Miracle Mineral Solution, in the belief it will kill worms which ’cause’ the condition. Diet and energy medicine form part of an “integrative healthcare solution” promoted online. Stem cell trials have been conducted. There’s even an Ayurveda treatment, based on traditional Indian medicine.

Judy Brewer defends Autism CRC’s funding of genetic research, saying results should only be used to understand and help Autistic people. “Those who want to do this for a cure should not be supported,” she says. “Neurodiversity adds to every aspect of society. I’m not looking for a cure and I’m a parent. I love my son 100 per cent.”

Some Autistics, though, want a cure. One of the most prominent is Jonathan Mitchell, who runs Autism’s Gadfly blog. The 60-year-old American thinks the lack of pro-cure voices is because the people who want curing are more severely afflicted and find it harder to communicate.

“Autism would be like a blue screen for Windows,” he says.

Mitchell’s autism has affected his whole life, stopping him from having a full relationship and hindering his ability to earn a living. He has bad fine-motor skills, and struggles to write and do chores.

“Neurodiversity provides simplistic solutions to hard problems,” he says, by phone from Florida. The analogy of Autistics having a different computer operating system “trivialises” a “bad disability”. He says, “Autism would be like a blue screen for Windows.”

“I’ve been called a self-hater,” he adds. “I don’t hate myself, I just wish there was a cure so I could function better – and others like me who are younger would have a chance for a better life.”

A now-defunct website of the same name told of a forgotten civilisation called ‘Aspergia’. Its inhabitants thrived in a social structure unlike that which dominates today. They were born with a specific talent and enjoyed solitude to pursue their passions, with periods of uncomplicated company. The ocean rose and reclaimed Aspergia, leading to a diaspora and integration with people whose customs were alien to them.

“In many ways, while we try to assimilate into society, we live in an entirely different world and as a result many have begun to see themselves as the Autistic Peoples,” says Elinor Broadbent, a moderator on two Facebook autism groups.

“That does not make us superior or inferior to anyone else, it just means that we connect on a level of understanding that very few on the outside can grasp”.

At the far end of Autistic pride sit the “Aspie supremacists”, says Annear – usually “white and male”, believers in Asperger’s syndrome as another stage of evolution, which gifts them a superior brain. She does not share this view, which she finds divisive.

“They dream of islands full of people with Asperger’s.” She pauses and chuckles. “Which would probably be an unmitigated disaster.”

Elinor Broadbent knows of a “very small group” that’s even looking into buying land and setting up its own state.

“They have a vision of creating an environment where they would be 100 per cent in control of their social structure,” she says. Fitting into a society which makes no compromises is too difficult for them.

The flip side of separatism is a concept called ‘neurocosmopolitanism’ – a way of trying to understand different perspectives, just as multiculturalism tries to understand different cultures.

Leong wonders whether this could be lead to engagement between the neurodiverse and the neurotypicals.

“There’s you and there’s me,” she says. “But let’s develop a new concept of us.”

source;www.sbs.com.au

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I Know What Causes Autism

Last week I was surfing the Internet and came across a headline proclaiming autism and circumcision are linked. I couldn’t help myself. I laughed out loud.

In no certain order, I have read the following explanations for autism over the years:

Autism is caused by mercury.

Autism is caused by lead.

Autism begins with poor maternal bonding.

Certain pesticides may trigger autism.

Plastics.

Gluten aggravates autism spectrum disorder.

People with autism should eat more strawberries.

Too much automotive exhaust is a leading cause of autism.

Chemicals found on non-stick cookware may trigger autism.

The one about maternal bonding is sort of painful for me. The truth is, I did have a hard time bonding with infant Jack. The little guy shrieked and whined and cried for a solid year. He started sleeping through the night at six weeks, and stopped at three months.

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I was exhausted, and Joe and I were fighting constantly; bickering and arguing and having long screaming matches. For the first time, I could feel my marriage slipping away from me like sand through my fingers.

And my first child, Joey — sweet, uncomplicated, good-natured Joey — was a year old at the time. His easy nature only highlighted his new brother’s fussiness.

But I am certain there is no one on Earth more bonded to my son Jack now, and guess what? He still has autism.

I am happy to announce that I do know what caused Jack’s autism, and without further ado, I’d like to tell you.

Wait for it.

It’s kind of a big deal.

Drum roll, please.

Jack has autism because, as his 5-year-old brother Henry says, he was bornd-ed with it.

Yes, I believe autism is a genetic condition. I believe that somehow Joe’s DNA mixed up with my DNA and together we had a child who thinks Wednesday is orange. Perhaps his unique genetic coding makes him more sensitive to things in our environment like lead and mercury and plastic.

I don’t know about the strawberry thing, though.

(For years I blamed Joe’s side of the family for the autism gene. But a few years ago I went to a funeral for someone on my side of the family, and I looked around the room and was all like hmmmmm.)

I was in a coffee shop last week and a woman came up and introduced herself to me. She said her daughter, Lily, is in Jack’s fifth grade class. I nodded and smiled, took my cup of coffee — OK, OK, and my cupcake — from the counter, and turned to leave.

“Wait,” she touched my arm. “I just wanted to tell you something. Lily told me that a boy called Jack weird the other day in class.”

I cringed. “Oh, well, yes. That happens.”

“Lily said she told the boy that Jack isn’t weird. She told him he’s exactly the way he’s supposed to be.”

You can see my dilemma. If I start running around declaring autism an epidemic and screeching about how we need to find out where it’s coming from and who started it and how to cure it, well, that sort of contradicts the whole message of acceptance and tolerance and open-mindedness.

This fragile glass house we’ve been working so hard to build over the past decade will explode into a thousand tiny pieces.

But on the other hand, it sort of is an epidemic. Other families are going to have babies and maybe they would like to have some idea of how to prevent this tricky spectrum disorder from striking. My own children will have their children, and if autism is indeed caused by automotive exhaust, it would be good to know so we could all buy electric cars.

At the same time, I don’t want to focus so much on the what and when and where and how that I forget about the who.

Because I don’t care where it came from.

But I am kind of curious.

It doesn’t matter to me why Jack has autism.

But it might be good information to have.

There’s nothing wrong with him.

Maybe there’s a little something wrong with him because he just spent the last 45 minutes talking about all the different kinds of gum that Walmart sells.

I wouldn’t change a thing.

I might change a few things.

I celebrate autism and all of its spectacular wonder.

I hate autism because it makes my son talk about gum and Walmart so much.

He is broken.

He is whole.

Autism is no one’s fault.

Maybe I should stop using Tupperware and make him eat strawberries even though he hates them and re-paint the house to make sure there is no lead on the walls or the windowsills.

Maybe I should throw away our frying pan.

Maybe I should have loved him harder, deeper, more when he was a tiny swaddled baby squirming in my arms.

Maybe this is my fault.

As you can see, my feelings about Jack’s autism diagnosis are as complicated as a prism with a thousand colors and angles and light. Some days, my doubts are soft whispers within my heart; other times it’s as though someone is shouting in my ear.

I am not a scientist. I am not smart enough for that. But I am a mother. And although I am not really smart enough for that either, I do know autism from that angle. I know the rigidity and the obsessiveness and the rage over having an aide in school. I know the disappointment and the fear. I know the quiet longing that comes with being different or weird, because I see it every single day.

When you live with someone who has autism, you say the phrase for now a lot.

For now, the radio is on the right station.

For now, he’s not screaming.

For now, he’s sleeping.

For now, he’s safe.

So, for now, I’m going to believe Jack’s autism is because of DNA and RNA and heredity.

For now, I will try to add broad splashes of green and blue and purple and orange to science’s black and white brush strokes. Together, we will fill in autism’s canvas until a clearer picture comes forward.

I don’t know exactly what that picture looks like yet, but I like to imagine it is a utopia of sorts: the perfect intersection of science and people. There are strawberries and puppies and lots of peppermint gum in Walmart, the kind in the blue container.

There are tall, blonde girls named Lily and boys with glasses named Jack.

And if you look hard enough, you can see a glass house in the distance — almost on the horizon. It glints and sparkles in the sunlight, and it is breathtaking.

If you look closer, you will see a sentence etched into the front door. This one sentence — this collection of eight words — well, they are very, very big.

They are a shored wall against a flood of uncertainty.

They are a million bright stars in an otherwise long, dark night.

They are peace and forgiveness, power and pride. They are everlasting absolution.

The first time I heard them, I was in a coffee shop buying a cupcake.

“He’s exactly the way he’s supposed to be.”

source;http://www.huffingtonpost.com

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Nonconformity and Freethinking Now Considered Mental Illnesses

Is nonconformity and freethinking a mental illness? According to the newest addition of the DSM-IV (Diagnostic and Statistical Manual of Mental Disorders), it certainly is. The manual identifies a new mental illness called “oppositional defiant disorder” or ODD. Defined as an “ongoing pattern of disobedient, hostile and defiant behavior,” symptoms include questioning authority, negativity, defiance, argumentativeness, and being easily annoyed.

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The DSM-IV is the manual used by psychiatrists to diagnose mental illnesses and, with each new edition, there are scores of new mental illnesses. Are we becoming sicker? Is it getting harder to be mentally healthy? Authors of the DSM-IV say that it’s because they’re better able to identify these illnesses today. Critics charge that it’s because they have too much time on their hands.

New mental illnesses identified by the DSM-IV include arrogance, narcissism, above-average creativity, cynicism, and antisocial behavior. In the past, these were called “personality traits,” but now they’re diseases.

And there are treatments available.

All of this is a symptom of our over-diagnosing and overmedicating culture. In the last 50 years, the DSM-IV has gone from 130 to 357 mental illnesses. A majority of these illnesses afflict children. Although the manual is an important diagnostic tool for the psychiatric industry, it has also been responsible for social changes. The rise in ADD, bipolar disorder, and depression in children has been largely because of the manual’s identifying certain behaviors as symptoms. A Washington Post article observed that, if Mozart were born today, he would be diagnosed with ADD and “medicated into barren normality.”

According to the DSM-IV, the diagnosis guidelines for identifying oppositional defiant disorder are for children, but adults can just as easily suffer from the disease. This should give any freethinking American reason for worry.

The Soviet Union used new “mental illnesses” for political repression.  People who didn’t accept the beliefs of the Communist Party developed a new type of schizophrenia. They suffered from the delusion of believing communism was wrong.  They were isolated, forcefully medicated, and put through repressive “therapy” to bring them back to sanity.

When the last edition of the DSM-IV was published, identifying the symptoms of various mental illnesses in children, there was a jump in the diagnosis and medication of children. Some states have laws that allow protective agencies to forcibly medicate, and even make it a punishable crime to withhold medication.  This paints a chilling picture for those of us who are nonconformists.

Although the authors of the manual claim no ulterior motives but simply better diagnostic practices, the labeling of freethinking and nonconformity as mental illnesses has a lot of potential for abuse. It can easily become a weapon in the arsenal of a repressive state.

Source: “Is Free Thinking A Mental Illness?,” from offthegridnews.com

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10 Myths Everyone with Autism is Tired of Hearing

Autism is a condition that is often misunderstood and misrepresented. While it continues to increase in prevalence, most of society doesn’t understand the condition and relies on hearsay and half-understood truths to form their perspectives.

Myths and misconceptions are not helpful for anyone living with autism, their families, or the people interacting with them.

Here’s some of the most common autism myths we hear and the truth behind them.

MYTH 10: AUTISM IS A NEW CONDITION

Truth: While the prevalence of autism is on the rise, autism is not a new condition. It was first described by scientist Leo Kranner in 1943. The earliest recorded descriptions of people exhibiting autistic behavior were documented in 1799.

MYTH 9: AUTISM IS CAUSED BY “REFRIGERATOR MOMS”

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This idea was created and popularized in the 1950’s when moms’ so-called “emotional frigidity” was blamed for the development of autism. It’s simply not true, and is totally unfair to the mothers of these special kids. Autism has nothing to do with parenting.

MYTH 8: AUTISM IS CAUSED SOLELY BY ENVIRONMENTAL FACTORS

The exact cause of autism is not known for certain. It’s believed that genetics plays a role in the appearance of autism. Studies have shown that parents whose first child has autism are more likely than the general population to have a second child with autism.

MYTH 7: AUTISM ONLY AFFECTS MEN

While autism is certainly more prevalent in men and boys, it isn’t solely a male condition. One in four people with autism are women and girls. It’s unclear what causes the uneven male-to-female ratio, but the current prevailing theory suggests that a nature vs. nurture issue makes diagnoses in girls and women less common.

Autism is a condition that is often misunderstood and misrepresented. While it continues to increase in prevalence, most of society doesn’t understand the condition and relies on hearsay and half-understood truths to form their perspectives.

Myths and misconceptions are not helpful for anyone living with autism, their families, or the people interacting with them.

Here’s some of the most common autism myths we hear and the truth behind them.

MYTH 6: AUTISM IS CAUSED BY VACCINES

There is no scientific proof that shows that vaccines cause autism. A 1998 study linking autism with vaccinations has been disproved and retracted. You can read more about childhood vaccines and their impact on child health in Childhood vaccines: Tough questions, straight answers by the Mayo Clinic.

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MYTH 5: AUTISM IS A MENTAL HEALTH CONDITION/MENTAL DISABILITY

Autism is a neurological disorder. Studies of people with autism show they have abnormalities in brain structure and neurotransmitter levels. It is not a mental disability, as people on the autism spectrum show a wide range of intellectual abilities.

It’s important to remember that “autism” is a spectrum and what is difficult for one individual is simple for another. Each case is different.

MYTH 4: ALL PEOPLE WITH AUTISM HAVE SAVANT ABILITIES

While people with savant abilities and autism often attract considerable attention, it’s not true that everyone who has autism will have these gifts. It is true that savant abilities have a higher prevalence among those with autism than neurotypicals, representing about 1 or 2 in 200 individuals in the autistic population. The spectrum of autism is wide and diverse, and simply having autism does not imply inherent savant abilities.

MYTH 3: REPETITIVE OR RITUALISTIC BEHAVIORS SHOULD BE STOPPED

One of the classic symptoms of autism is repetitive and ritualistic behaviors, according to the Diagnostic and Statistical Manual of Mental Disorders (DSM IV). While these behaviors can seem strange, the serve an important purpose of calming and reassuring people with autism.

Unless these behaviors are interfering with family life or prevent the individual with autism from functioning independently, they should not be stopped. Children might outgrow repetitive behaviors in time, but it’s not certain.

MYTH 2: PEOPLE WITH AUTISM CANNOT FEEL EMPATHY OR LOVE

It’s not that people with autism can’t feel empathy, but rather that they express it in ways that are harder for neurotypicals to understand. People on the spectrum often struggle with processing social signals and body language, which is the root of this insidious misconception.

Man comforting his sad mourning friend

A recent New York Times feature on a couple with autism has shown the world what many with autism already know: that autism doesn’t preclude them from being amazing partner, parents, or friends.

MYTH 1: AUTISM CAN BE CURED

While people with autism can be taught to cope with a neurotypical world, there is currently no way to cure someone of autism. Some with higher-functioning autism have even said they would not want a cure, because it is integral to who they are.

What other common myths and misconceptions are you tired of hearing?

source;http://blog.theautismsite.com

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A 5-Year-Old With Autism Creates Stunning Paintings

Autism can cripple an individual’s ability to socially interact and express themselves in ways that most of us can understand. However, this poorly-understood neurological disorder can also bestow extraordinary talents. Take, for example, 5-year-old Iris Grace, who creates beautifully expressive paintings in spite of – and perhaps because of – her autism.

Grace paints with an understanding of color that most 5-year-olds don’t have. However, she is only now learning to speak – something most 5-year-olds started to do when they were 2.

Grace’s mother, Arabella Carter Johnson, discovered her daughter’s talent when she introduced her to painting as a way to help her with her speech therapy. “Then we realised that she is actually really talented and has an incredible concentration span of around 2 hours each time she paints,” she writes on their website. “Her autism has created a style of painting which I have never seen in a child of her age, she has an understanding of colours and how they interact with each other.

The family sells Grace’s paintings for auction on their website and donates to various organizations that work with autism, so be sure to take a look!

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source;www.demilked.com

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Girl With Autism Sings A Stunning Rendition Of ‘Hallelujah’

“It’s not just good because she’s dealing with autism … It’s good because it’s good — really good.”

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My Five-Year-Old Autism Child Does Not Talk … Will He Ever?

This guest post is  by Connie Kasari, Ph.D., a Professor of Education and Psychiatry and the Center for Autism Research at UCLA.

This is the question and the worry for a quarter to about half of all parents of children with autism.  Research studies tell us that children who can talk by the time they turn five years old have better outcomes.  But is this age marker meaningful, and what does it mean exactly?

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The extraordinary success of early intervention programs has been shrinking the numbers of children who remain nonverbal.  Still many children develop slowly, becoming late speakers if at all.   What do we know that helps these children?

Late speaking children were the subject of a recent review paper, which was selected as one of Autism Speaks’ Top 10 Scientific Achievements in 2009 (Pickett, Pullara, O’Grady & Gordon, 2009).  The authors found 64 studies involving 167 children who learned to speak after age five.  Several important observations were noted.  First, the authors found that while most children who learned to speak were between five and seven years some children learned to speak for the first time at age 13 years!  The majority of children learned single words, but some were able to speak in sentences.  Finally, the numbers they report are probably an underestimate of actual cases since researchers often exclude children who are nonverbal, or under-report late speaking children.  Therefore, it may be harder to learn to speak after age five, but it is clearly not impossible.

What types of interventions are helping children to speak? Several approaches look promising.  Both behavioral interventions and ones using augmentative and alternative communication devices (AAC) seem to work.  AAC approaches (examples include PECS, sign language and speech generating devices) do not seem to inhibit the development of spoken language (Schlosser & Wendt, 2008); however, for many children the use of AAC allows them to become communicators without reliance on spoken language.  Thus, AAC interventions need to be adopted more often and studied.

Applied behavior analysis (ABA) is the most common approach to teaching children with autism; however, the results of intensive training have not always improved spoken language.  A promising hybrid behavioral and developmental intervention focuses on ‘joint attention’, nonverbal gestures that develop before children learn to speak with words, and involve the sharing of attention between a person and an object or event.  Preschool aged children who received a joint attention intervention made greater language gains than children receiving traditional applied behavior analysis interventions (Kasari et al, 2008) but it is not clear if similar interventions will work with older children.

At UCLA we are beginning to test out whether a joint attention intervention will be effective for children who are nonverbal and older than five years. The study is an Autism Speaks funded High Risk, High Impact study for Characterizing Cognition in Nonverbal Individuals with Autism (CCNIA).  This multi-site study involves researchers from UCLA, (Connie Kasari) Kennedy Kreiger Institute (Rebecca Landa) and Vanderbilt University (Ann Kaiser).  We are comparing our joint attention intervention with a focus on spoken language (using Enhanced Milieu Training; Kaiser, Hancock & Nietfeld, 2000) to an intervention involving the use of a speech -generating device.  A unique aspect of this study is the use of an alternating treatment design, recognizing that children may need a sequence of treatments for best response, or may respond better with one treatment versus another.  This design is called a SMART design (sequential multiple assignment randomization trial –SMART; Murphy, 2005).  Our goal is to determine the most effective intervention for increasing communication competence of children who are nonverbal, recognizing the variability in characteristics of these children, and the individualized nature of their response to treatment.

So the good news is that language development CAN progress after age five, but stay tuned for more research

source

Kaiser, A. P., Hancock, T. B., & Nietfeld, J. P. (2000). The effects of parent-implemented enhanced milieu teaching on the social communication of children who have autism. Journal of Early Education and Development [Special Issue], 11(4), 423-446.

Kasari, C., Paparella, T, Freeman, S.N., & Jahromi, L (2008).  Language outcome in autism: Randomized comparison of joint attention and play interventions.  Journal of Consulting and Clinical Psychology, 76, 125-137.

Murphy SA. (2005) An Experimental Design for the Development of Adaptive Treatment Strategies. Statistics in Medicine. 24:1455-1481.

Pickett, E., Pullara, O, O’Grady, J., & Gordon, B. (2009).  Speech acquisition in older nonverbal individuals with autism: A review of features, methods and prognosis. Cognitive Behavior Neurology, 22 1-21.

Schlosser, RW, & Wendt O (2008).  Effects of augmentative and alternative communication intervention on speech production in children with autism: A systematic review. American Journal of Speech-Language Pathology • Vol. 17 • 212–230.

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Mom Of Girl With Autism Writes Powerful Post About Kindness Between Kids

A Kentucky mom’s  post is showing the immense power in the kindness children show toward each other.

On July 23, Stephanie Skaggs posted a photo of her 5-year-old daughter Baylee, who has autism, having fun Hurricane Bay water park at Kentucky Kingdom in Louisville. In the caption, she shared a moving story about that day.

Addressing “the mom in the baby water park at Kentucky Kingdom,” Skaggs explained that going to the water park can be a challenge for Baylee, who is mostly non-verbal and has trouble coping with unexpected change. That day, she was getting accustomed to the routine of waiting in line for her turn to go down the water slide, but other children cut in front of her.

“[Baylee] really doesn’t mind much that she had to wait longer, but is very upset that the steps of the routine she just learned are now out of whack,” Skaggs wrote. “And to her it feels like the end of the world!”

Worried that the situation would escalate into a meltdown, the mom was pleasantly surprised when a little girl at the front of the line looked up and said “she can go ahead of me.” A little later, someone else cut Baylee in line, but a little boy, who observed what had happened and understood she had special needs, offered her his place at the front.

“I was struck that two different children would be so intuitive and kind,” Skaggs wrote. “Like most autistic children, Baylee does not LOOK any different than any other child. And it’s not really immediately obvious by her behavior either. It takes some observation and usually children their age don’t realize she has autism.”

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Stephanie Skaggs was touched by the kindness two children showed her daughter with autism at a local water park.

The mom said she praised the little boy and girl who let Baylee go ahead of them. “I told them both how great it was that they looked out for someone who was different … and the difference that small acts of kindness make even if it doesn’t seem like much,” she wrote. “They really touched my heart.”

When she later saw them together, Skaggs realized they were brother and sister. She asked them to point out their mother and then approached the woman to praise her parenting.

Addressing the thoughtful children’s mom, she wrote in her post:

“I made sure to let your kids know how nice it was for them to be kind and understanding, but I wanted YOU to know that you are raising two wonderful children. When I came to you and told you about my experience with your kids and told you that they were super kids and you are doing a great job, you said ‘I don’t know about that.’ Well, mom, you are. A small gesture like theirs may not seem like much. But I promise it was.”

As a mom of a child with autism, Skaggs said she is filled with worry and fear about the negative way people perceive Baylee because she’s a little different. But the kindness those children displayed at the water park gave her a sense of hope for her daughter’s future.

“When I looked at those sweet little faces, filled with pride as I praised them, it made me happy to know that more moms are raising their children the way you are!” she concluded her post. “So I just wanted to take the opportunity again to thank you and let you know you are doing a really really good job!”

Skaggs’ Facebook post has been shared almost 10,000 times. The mom told The Huffington Post that she decided to share her story because she was so touched by those children that she couldn’t stop thinking about the experience.

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“A small gesture like theirs may not seem like much. But I promise it was,” Skaggs wrote of the experience.

Hoping to give peace of mind to fellow parents of kids with special needs, Skaggs typed out the post and it quickly spread across Facebook. While Skaggs wanted the mom she met at the water park to see the post, she did not anticipate it would actually reach her. But within hours of posting the story, she received a Facebook message from Laura, the woman she spoke to that day.

Laura said her children, Matthew and Grace, were also touched by their experience that day. “She said they talked about Baylee all day after we parted ways,” Skaggs recalled.

The two moms became friends on Facebook and remain in touch. Skaggs said she’s received positive comments and messages from people around the world, from South Africa to Egypt.

“It means so much to me that Laura and her children can see the far reaching impact of their kind gestures that they thought were nothing really!” the mom told HuffPost. “My hopes are that this simple act of kindness will spread and inspire people to just be kind … not just to children or adults with special needs but that being kind to anyone can reach so many people in so many ways. It is definitely worth the effort!”

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Baylee always feels protected by her parents and five older siblings.

Though parents of kids with special needs feel that they must be vigilant, Skaggs said she hopes her experience inspires them to let their guard down and live in the moment sometimes.

“I would hope that, like me, they will have a renewed sense of hope and trust in those around them and are able to at least sometimes, even if it is jut for a few fleeting moments, just let that wall down and breathe and enjoy those moment with their kids,” she said. “To be able to stop and delight in their happiness and relish in their excitement and not be so worried about what everyone around them is thinking.”

Laura, Matthew and Gracie allowed Skaggs to do just that. The mom said they’re planning to get the kids together to play soon, maybe at Kentucky Kingdom again.

source;http://www.huffingtonpost.com