Showing posts with label Concerns. Show all posts
Showing posts with label Concerns. Show all posts

Monday, October 5, 2015

Why Do We Send Teens With Autism To School?


Before you read this I am going to ask a favor, stay calm. You might even want to put your hand under your chin to catch it when it drops, in the event these comments shock you. 


I just heard this "Your son is never going to be independent, so why are you so concerned about him working? He's never going to be able to hold down a job. I mean he can't get seem to get by without one to one support. Are you sure it isn't a waste of time and you're not just pushing to have him learn things he will never really use, and maybe doesn't even care about?. I mean I understand your wanting the best for him, and that's great, but how do you know you're just not wasting both of your time chasing a life he will never live?" 

I was frozen for what seemed like forever, and I fought to push away the tremendous greif I felt hearing her words. I didn't feel angry because I really did hear this persons compassion, albeit misguided and uninformed. 


Finally I said, because he deserves as much opportunity to live his best life as anyone else!!. Then I just starting rambling and it went something like this. From the day our kids are born we start thinking about school. Why do we send our kids to school? To learn, and why do we want them to learn? So they can get a job. And, why do we want them to get a job or have a career? We want them to be able to survive, care for themselves, make friends, take pride in accomplishment and have purpose, both of which society tells us will bring happiness. We want the best for our kids. I want the same for my son and he deserves the same. There are many people who are not living quote "Successful" lives in this world who no one questioned their right to have access to learning all they could, and exposure to opportunities. Nick is a unique person, with skills and talents and he deserves the opportunity to build the most independent life he can. So that's what I am fighting for. And if he is never able to do it alone, so be it. At the same time everything he learns to do, everything that makes him more independent, gives him an opportunity to contribute to society and reduces how much financial support he will need from me and state and federal resources. 

In a nutshell, Nick being given the opportunity to be his best is the right thing to do on a human level, and it's the right thing to do on a financial level. 


Tuesday, September 9, 2014

Superior Court Encourages Lawyers to Violate Rights of People with Developmental Disabilities


Thanks to a mom who's been through Hell and wanted to share her story to help others, I've been made aware of the unthinkable challenges that can happen around Conservatorships, especially in families where the parents are divorced.  When I first heard their story my automatic response was "This can't be, it's just too terrible. It must be an isolated case". When I began asking more people I learned many families were dealing with this, and it was not something I could afford to ignore. My son will be 18 soon enough, and his rights will kick in and I need to know the realities of raising an "adult" with autism and conservatorships. Below is a summary of the issue, and a link to a guide showing recent research findings, and it suggests ways our attorneys can challenge these guidelines when needed.
________

The Disability and Abuse Project released a new report today that focuses on deficiencies in the performance of attorneys appointed to represent people with developmental disabilities in limited conservatorship proceedings in California.
The report was released in the form of a guidebook, designed to help court-appointed attorneys challenge judicial guidelines that encourage them to engage in practices that may violate ethical and constitutional requirements.
Here is a description of the guidebook, taken from the Project's website:
This guidebook releases research findings by the Disability and Abuse Project regarding the policies and practices of the Los Angeles Superior Court.  It reveals how court guidelines encourage attorneys to violate the rights of people with developmental disabilities in limited conservatorship cases.  The guidebook calls for systemic changes, but until they occur, it suggests ways that attorneys can challenge these guidelines by using advocacy methods consistent with the ethical and constitutional duties and that protect the right of clients to due process of law
The report was sent to 50 attorneys who regularly represent clients in limited conservatorship proceedings.  It was sent two weeks in advance of a mandatory training seminar they will be attending on September 13.  It was also sent to the panelists who will be making presentations on many of the topics covered in the report.  We hope that the receipt of the guidebook prior to the seminar will stimulate a lively discussion about the proper role of attorneys in such cases and what attorneys should do to comply with ethical and constitutional requirements.
It was also sent to all members of the Board of Trustees of the State Bar of California, with a request that the State Bar convene a Task Force on Limited Conservatorships to study the problems outlined in the report and to make recommendations to the State Bar about how to improve the performance of attorneys handling such cases.
For more information, including a link to the guidebook and links to the letters mentioned above, go to:   http://disabilityandabuse.org/pvp/index.htm

















Thursday, September 4, 2014

Whistleblower: CDC covered up vaccine’s autism effect in black boys

cdcWhistleblower: CDC covered up vaccine’s autism effect in black boys


A top research scientist working for the Centers for Disease Control and Prevention (CDC) played a key role in helping Dr. Brian Hooker of the Focus Autism Foundation uncover data manipulation by the CDC that obscured a higher incidence of autism in African-American boys. The whistleblower came to the attention of Hooker, a PhD in biochemical engineering, after he had made a Freedom of Information Act (FOIA) request for original data on theDeStefano et al MMR (measles, mumps, rubella) and autism study.
Dr. Hooker’s study, published August 8 in the peer-reviewed scientific journal Translational Neurodegeneration, shows that African-American boys receiving their first MMR vaccine before 36 months of age are 3.4 times more likely to develop autism vs. after 36 months.
According to Dr. Hooker, the CDC whistleblower informant — who wishes to remain anonymous — guided him to evidence that a statistically significant relationship between the age the MMR vaccine was first given and autism incidence in African-American boys was hidden by CDC researchers. After data were gathered on 2,583 children living in Atlanta, Georgia who were born between 1986 and 1993, CDC researchers excluded children that did not have a valid State of Georgia birth certificate — reducing the sample size being studied by 41%. Hooker explains that by introducing this arbitrary criteria into the analysis, the cohort size was sharply reduced, eliminating the statistical power of the findings and negating the strong MMR-autism link in African American boys.
Dr. Hooker has worked closely with the CDC whistleblower, and he viewed highly sensitive documents related to the study via Congressional request from U.S. Representative Darrell Issa, Chairman of the House Oversight and Government Reform Committee.

Thursday, July 10, 2014

Drowning Leading Cause of Death for Children With Autism

As a mom who lives in California, where there is seemingly a pool in every backyard, a key reason we purchased our home was it did not have a pool. I don't have a statistic on wandering compared to non-wandering related drowning’s, either way it’s clear we have to tackle both. My son is a wanderer, actually he's a seeker. He intentionally finds ways to escape our house in search of things he wants, and he has ZERO safety awareness. By zero I mean Nick has the safety awareness of a two year old. The difference is when we see a 2 year old alone we all stop and help. When people see my son alone they just stare.
The good news is I know this about him and I've put systems in place to protect him. My neighbors who have looked up to find Nick in their house UNINVITED, know it too. Their awareness creates a safety net.
If you have a pool I recommend a highly secured pool area, and I've asked my neighbors with pools to lock their gates.  
Articles like this are not new news to parents who have children with autism, it's just confirmation people are listening and getting the word out. 

Drowning Leading Cause of Death for Children With Autism
Researchers at the University of Sciences found that drowning is a major cause of death among children with autism.
Families with autistic children are most concerned about water safety. The study led by Varleisha Gibbs, occupational therapy professor at the University, found that autistic children get overstimulated in crowded areas and escape into unsafe environment.

Autism is a lifelong neurodevelopmental disorder that impairs social interaction, verbal and non-verbal communication and forms of repetitive or restricted behavior. The Centers of Disease Control and Prevention reveals that 1 in 68 children have autism spectrum disorder (ASD). It is five times more common in boys and costs at least $17,000 more every year to care for a child with ASD.

"Among the plethora of concerns for families dealing with autism, includes addressing water safety practices as early as possible in a child's life," said Dr. Gibbs. "Although water safety is a concern for all parents, children with autism are especially at a higher risk for drowning because they may seek isolation by fleeing to unfamiliar territories."

According to the National Autism Association, accidental drowning led to 90 percent of the total U.S. deaths reported in children with autism of age 14 and younger in 2009-2011.  Also, 50 percent of the children with autism try to escape into safe environment which is nearly four times more than children without autism.

Some of the safety tips researchers suggest are: enrolling children in swimming and water safety lessons as early as possible, using video narratives to discuss water safety and if they respond well to visual cues then signs like STOP or DO NOT ENTER on the doors that open to outside must be used.

Following this will help parents to relax and enjoy the summer with their children who are diagnosed with autism.
"Swimming and aquatic therapy is actually a wonderful sport for children with autism because it can address many of their body's sensory and motor needs," said Dr. Gibbs. "By preparing and communicating with your child with autism, family, and friends, summer trips and activities can be much less stressful and more enjoyable."

Monday, November 4, 2013

Puberty: Boundaries & Impulse Control; From Boy to Man...Seems the Greatest Challenges Lie Ahead

Baby things are
irresistible to Nick!
"After years of therapy and programs it comes down to this for Nick; boundaries and impulse control. These are the two most important things for him to master now, or everything else community goes off the table."


I was in Costco pushing my cart through check out when Nick walked away. I looked up to see where he was, and my eyes went right to a mom clutching her baby protectively to her chest. Her frightened eyes were fixed  on Nick saying "Who are you?! Don't touch my baby!" My first instinct was to protect my baby, and give that mom a piece of my mind and perform an on the spot sensitivity training. Topped off by letting her know what a small person she was for not understanding that Nick was my baby, a vulnerable harmless kid with a disability and not the threat she was envisioning!!

Then it hit me, I know that look. It's the protective mom look we all have that isn't' conscious, it is pure instinct. Every mom's had that look. In that instant my heart and mind shifted, and it only took seconds for me to look around and piece together what was "really" happening.  Her baby was dressed as one of Nicks favorite things, Winnie the Pooh. Nick no doubt had rushed up on her cart, excited to see Pooh, and the mom didn't see a special needs kid, she saw a grown man rushing up to her baby and she was truly frightened.  I related to the frightened look on mom's face. I'd seen it before on my own face so many times. I remember how protective of my babies I was (and still am) and there's nothing rational about it. We feel a threat and we react.

Seems I've mellowed or grown up a bit, because the feeling inside me to puff up my chest and go toe to toe with the mom subsided as quickly as it flared up. Gone was my desire to make her see my point of view, have her apologize for thinking my kid was a threat, and my need to make her out to be an ignorant person who was mean to a special boy evil eye wasn't totally gone, but it was brief.  I took a deep breath and saw her side. I understood. Her reaction was perfect. The challenge, the responsibility was mine, not hers.

The transformation of my son from being a boy, to being a man is so fast I can't keep up. I don't' know about anyone else, but no matter how prepared I try to be, I'm still being caught off guard. Nick may be my baby, but in the eyes of the world, standing at 5'7" 175 lbs he is a man. And today he was a man who just ran up on a baby, and that's frightening. As much as he's my child this is not the time to be naïve and being right is not going to be very useful. No matter my personal views I have to protect him by facing the facts; no matter how special, adorable, good, kindhearted he is, he is also a man who has not yet learned boundaries and impulse control and that can get him in terrible trouble.

After years of therapy and programs it comes down to this for Nick; boundaries and impulse control. I've been talking about it for a while as I've watched Nick's progress and growth. These are the two most important things for him to master now, or everything else community goes off the table. If I knew 10 years ago how long these skills took to teach, to generalize, I would have made it a priority sooner. But, then again we've always been focusing on what seemed to be the priority at the time.

So last night I prayed.....
God help us and protect him.
Keep Nick safe in a world where he doesn't understand the rules.
Help me to be the best mom I can be.
Help me to teach him all he needs to know.
Help others to have kind hearts.
Keep him safe, please.



Thursday, January 31, 2013

ASD & Puberty Part II - “Parents, Part of the Problem, or the Solution?”

He's so big!!!



For all of you who thought my post on puberty "Boys without Boundaries" helped you, I have to share that it was perhaps an even greater help to me!  It was like letting go of a secret.  I've always believed that what we can’t put to words, we can’t put rest. We have to talk about things to really process them. Telling you the truth made it possible for me to process and let go of some of the shame, embarrassment, inadequacy and fear that shows up for me as I watch my boy become a man in a world where he doesn't fit.  

For the umpteenth time it was up to me to get out of the way, and be part of the solution not the emotional mom who unwittingly, and with all good intentions had become part of the problem. (I hate that!)  Here's what is; Nick is Nick  he doesn't see the world the way I do. I have to constantly remind myself that I can't superimpose my emotions on him!  Once I acknowledged it was my feelings, ideas, and issues keeping me from doing what’s best for Nick  things started to change. I pushed past my stuff and started talking about it, and asking more people for help.  And perhaps most important of all I started asking the questions I really didn't want to hear the answers too, but knew ignorance wasn't going to make it go away. 

As of today, none of his behaviors have changed, in fact in some ways they are worse. Puberty and how fast he's growing is playing a role in how he responds to medication, so he's way less focused, frustrated and not sleeping so good. We're working our way through it.   


On the upside, I've found that if I prepare myself and frame the really difficult conversations in clinical talk or humor or pretend I'm not really taking about my family, I can talk about the tough stuff.  This is good because our team is having direct conversations and as a result I've asked that they point out when I'm treating him like my baby, and not like the man he is becoming.  None of it's comfortable, and I’m still not ready for him to grow up. I’m just moving on the path of accepting there’s not a darn thing I can do about it. 

I’ll keep you posted. 

Tuesday, August 28, 2012

What do you think?: Ellen Barkin Sounds Off on After Utah TV Station Bans The New Normal


Personally this show doesn't strike me as my cup of tea, and I'm not likely to tune in. But, I feel the same way about all the reality TV which typically isn't reality at all, but a platform to show us the worst in people. Yucky! So count on me to "Vote with My Remote".  This is definitely a medium that responds promptly to public opinion. It only takes networks a few episodes to pull a show off the air if it is not getting enough views. 


In the United States of America we all have rights. Content creators have the right it put shows on the air and every individual in Utah and everywhere else in the U.S. has the right to turn it off and tune out. It may seem like a leap to you, but being female, African American, having a child with autism, I'm tuned is to all things "ism" sexism, racism, able-ism and I am opposed to anything in this country that sets presidents for prejudice, exclusion or censorship. I am instead very much in favor of personal responsibility, so if you don't like a show, exercise your rights and  turn your TV Off but let's not encourage individuals to make our decisions for us!  ... I'm just saying " 

Ellen Barkin Sounds Off on After Utah TV Station Bans The New Normal
Ellen Barkin is tweeting mad over a Utah TV station's decision to not air The New Normal. The show, which premieres in September on NBC, features a gay couple and the family of the woman who decides to become a surrogate for their baby.
Jeff Simpson, CEO of  Bonneville International, parent company of of Salt Lake City NBC affiliate KSL-TV, told the Deseret News in a statement Friday that the show's "crude dialogue, explicit content and offensive characterizations," were the main reasons the station decided to ban it.
"After viewing the pilot episode of The New Normal, we have made the decision to keep it off our fall schedule. For our brand, this program simply feels inappropriate on several dimensions, especially during family viewing time."
"Shame on u ‪@kslcom not airing ‪@NBCTheNewNormal So L&O SVU (rape & child murder) is ok? But loving gay couple having a baby is inappropriate?," Barkin tweeted Friday. "Anyone in Utah interested in @NBCTheNewNormal please clog up @ksl5tv feed 4 their blatantly homophic decision 2 not air the show #KSLBigots," she later added.
KSL isn't the first station to have issues with the show's content, though.
Last month, One Million Moms demanded that advertisers boycott the NBC comedy, calling The New Normal "harmful to our society."
"Every person and group has a right to protest something," show creator Ryan Murphy said at the time. "I find it to be interesting that they would take a position before they've seen it." (E! and NBC are both part of the NBCUniversal family.)

Sunday, August 26, 2012

Handicapped Children Restrained, Confined, Abused and Murdered - A headline from today, not the 1800's.


There are some days when I read something that upsets me so deeply; I cry like a baby and I just want to go back to bed and hide under the covers until I can come out and see a better world.  Today was that day. 

Like lots of other days I jumped online to see if there is anything really pressing going on in the world involving our kids that I would want to share. What I found today was my worst nightmare, headlines of abuse and torture of our kids. I stumbled upon a website called Autism News.com  and a headline that read, "Handicapped Children Restrained, Confined, Abused and Murdered", followed by videos and stories so horrible I went and grabbed Nicky and didn't want to let him go. 

I looked at these articles and I thought,"Yes, some parents are driven to extremes. Some people are just ignorant and don't know what to do with our kids and so they make really hideous choices, then justify their actions." I also know that there are some straight up bad people in the world who should never be within 100 feet of a child. But oddly, the truly hideous people are not the ones who scare me the most, it's the people who are not evil. These are individuals in legitimate positions; police, parents, educators, therapist, aides who live normal lives and would never be considered as menaces to society. They are people who, under extreme circumstances are afraid, or are ignorant, frustrated, careless or simply neglectful, and as a result make really bad decisions.  As a community it's these people we all have to be diligent and keep our eyes open for, seeing with our hearts, not our brains, open to the truth about how every human deserves to be treated...NO MATTER WHAT!!!!!!

Autism News website: http://www.autismnews.com/index.html 
Video's detailing abuses: http://www.youtube.com/watch?v=a1Ar4JZOD98

Friday, July 20, 2012

Farming and Technology Programs for Teens and Adults with Autism and other Developmental Disabilities.



For the second year in a row, CBS2 and KCAL9  hosted a resource fair called “Stephanie’s Day.” It was started by CBS2 and KCAL9 President and General Manager Steve Mauldin in honor of his daughter, Stephanie. The event was in my neighborhood so I ventured out in search of new resources devoted solely to life skills and vocational training for tweens, teenagers and young adults.   
Donna Ross Jones and Dr. Pam Wiley

It was great to see friends who offer an array of fantastic support and programs for our kids, like Ellen K. Reinstein, L.C.S.W.,& Ellen Pearlman of Cheerful Helpers (www.cheerfulhelpers.org), Dr. Barbara Firestone, founder of the “Help Group”( www.thehelpgroup.org/about.htm)  and Dr. Pam Wiley, author and founder of Los Angeles Speech and Language (http://speakla.com/). 

Yudi Bennett and her Exceptional Minds Team
As I wandered the fair with both my kids, in tow, it became strikingly clear how limited the options would be for Nicholas post high school. There were only a few vendors committed solely to programs insuring young adults with autism remain active, learn vocational and life skills. 

On the upside there were two groups who were very exciting!!!  "Exceptional Minds Studios" and "Farming Independence."  Both ideal for me because Nicky loves animals and the computer. “Exceptional Minds Studio,” created by the wonderful Yudi Bennett, is a non-profit  animation studio for young adults on the Spectrum with a vocational center and summer camp.  (See their web site:  www.exceptionalmindsstudio.org)  They are dedicated to helping young adults with ASD who have a passion for graphics and animation learn skills that can be transferred to the work force.  This could be a real option for Nicky.  I was also introduced to Farming Independence and their “Go Wild” summer program, another perfect fit for my young man who loves animals. The participants ages 16 to adult get to grow and create things on the farm, which they later sell. The program activities include everything from animal husbandry to culinary arts.  (Their web site: http://farmingindependence.org/.)

I also got a chance to talk to a group called CCI, short for Canine Companions for Independence. Very exciting.  They train and provide service dogs and cats!
I'll post more about them later.

There's no doubt we need many more options, nonetheless it's great to see these people jumping in and offering options for our kids. 

Monday, May 14, 2012

One in Every 2 Americans Live in Poverty....

I had my second opportunity to listen to these 2  men speak last week. I've been a fan of Dr. West for a long time and I've always appreciated his intellect and perspective. But the message hit me harder this go round because it's clearer to me that what they are saying in true. Facing the realities of putting my daughter through college, getting critical care for Nicholas, knowing one in every 2 Americans live in poverty, right now in the US...shakes me to the core. When I contemplate how such a society will care for all of our vulnerable populations including our children with developmental disabilities.  I don't feel optimistic, at least not today. 


Cornel West and Tavis Smiley Rightfully Scare Us

Posted: 04/30/2012 11:27 am
More often than not, lionized public figures like Tavis Smiley and Cornel West bring out the cynic in me. But both men were intellectual and spiritual giants as they captured the hearts and minds of the packed house at The Paramount theater in Oakland on Saturday evening. Oakland was their last stop in a national tour discussing their new book, The Rich and the Rest of Us: A Poverty Manifesto. We have the amazing KALW (91.7 on your dial) to thank for their incredibly hard work to make this important community conversation happen.
I cannot pretend to be objective in my opinion here. My own experiences growing up poor make this a very personal issue for me. I was deeply moved by their thoughtful commentary on the way the expansion of poverty is eroding this county from the inside out. Tavis Smiley told the crowd that a whopping 50% of Americans are in poverty now, or verging on poverty. This is clearly a devastating number. But what moved me even more was the powerful exploration by both men, of American values and the way in which our most cherished values are being terribly violated as they are expressed through our economic and political institutions.
The heart of Smiley and West's message is simple and profound: the United States is far more economically divided than most people want to acknowledge,and this chasm will destroy our nation. They make their case in their book by using vast amounts of very robust data from credible sources, like the Pew Research Center. (Indeed, this is the same data that drives the work we do atEARN to help low income workers save and invest to foster prosperity.)
There are some of you who will quickly dismiss Smiley, West, and their message. You may dismiss them because you don't like their politics, or don't like them as people. You make this dismissal at your own peril, and the peril of our nation. Irrespective of how you view Tavis Smiley or Cornel West, their passionate call to the American public to face the hard facts, is rooted in data that transcends politics or ideology.
In fact, the Smiley-West cautionary message is backed by groundbreaking research from economists Daron Acemoglu and James Robinson, in their new book Why Nations Fail: The Origins of Power, Prosperity and Poverty. Acemoglu and Robinson conducted expansive research to understand why some nations fail while others prosper. While much of the conventional wisdom among economists on the issue involves natural resources or cultural traits, Acemoglu and Robinson found that it is open political institutions that allow for shared power, and collective decision making about economic opportunity that drive prosperity.
This thesis cuts straight to the heart of what Smiley and West warn us is coming. Tens of millions of Americans toil endlessly, but never find their efforts rewarded with economic security. Increasingly, these hard working people will be disenfranchised and disengaged from the political process, and have less say in how economic opportunity is fostered and distributed. This is precisely the dynamic that Acemoglu and Robinson found at the heart of poverty, corruption, and human beings at their worst. We're moving down a dangerous path as a nation. Listening carefully to what West and Smiley have to say, however, is a good step back in the right direction.

Follow Ben Mangan on Twitter: www.twitter.com/benmangan

Friday, May 11, 2012

Autism + Bipolar = LOL + WTH

A new Dr. believes Nicky's new manic behaviors indicate he might be Bipolar! When he told me, I let out a spontaneous laugh as I thought  "why not?!!!".  It's just like adding nut's on top of our already overflowing banana split.  In truth at this point it's just one more label. More words people use to further define our experience. It really doesn't change our life at all.  So, what's to do? Just take it in stride, learn, listen, love and keep moving forward...one day at a time.

PS: Seems Bipolar can come on in adolescence and is at it's worst December - March. 

Tuesday, March 27, 2012

Outsourcing to the Autistic Rather Than to India


Loved this article! Just last week I thanked my local grocery store manager for having the insight to hire young adults on the spectrum, who I routinely see zooming about the store. In return he shared how incredible and totally reliable these kids were when it came to performing detailed tasks over and over.  From stocking "go backs" to collecting the carts his ASD employee's got the job done and were excited to work.  I was also very excited to hear that he was not employing them at a reduced rate through a subsidized  "work" program  he was paying them standard rate!  This story, gives me hope for my single minded, memorizing, repetitive task doing little man's future. 

Software

Outsourcing to the Autistic Rather Than to India

By Drake Bennett on March 27, 2012
Bennett is a staff writer for Bloomberg Businessweek.
Part of the reason autism has captivated Hollywood moviemakers more than other developmental disabilities is that, for all the difficulties it brings those who have it, it also gives some of them the ability to perform uncanny feats of brainpower: effortlessly memorizing train schedules or song lyrics, identifying the day of the week of any date in the past. Even among those who aren’t full-blown savants, many display an impressive ability, even a desire, to immerse themselves in what the rest of us would see as mind-numbingly boring, detail-orientedtasks.
What if we could turn that ability toward things besides memorizing train schedules? It’s not simply an abstract question: The vast majority of those with Asperger’s syndrome and high-functioning autism are unemployed. A few companies are trying to do just that, and all in the same sphere: software testing, the epitome of mind-numbing, detail-oriented work. The pioneer was a company called Specialisterne, started in 2004 by a Danish software engineer with an autistic son—it has since created offshoots in Iceland and Scotland. In 2008 a small nonprofit called Aspiritech in Chicago was started to put people with high-functioning autism and Asperger’s syndrome to work testing smartphone apps.
The newest entrant into the space in the U.S. is a Los Angeles-based software and design firm called Square One. The company has a small pilot program working to design a software-testing training program for people on the autism spectrum. The project grew out of conversations between company co-founder Chad Hahn and his wife, Shannon, who works with the developmentally disabled. Hahn, along with experts his wife led him to, has put together a software-testing curriculum that he’s now in the process of teaching to an inaugural class of three. The course he’s designed relies not on written instructions but on a software tool called iRise to create simulations of the sort of problems the trainees would confront in an actual work setting.
Hahn is also trying to develop a work environment that would be friendly to those on the autism spectrum, for whom the social interactions of a typical workplace can trigger paralyzing anxiety. For some people, Hahn says, that might mean ensuring that there’s a quiet room or a set of headphones they can put on to block out the buzz around them; for others it’s making sure there’s a counselor there to talk to whenever they need it. Hahn says he’s in talks with Warner Bros. and LegalZoom about software-testing contracts.
But what’s most original about Square One’s approach is how resolutely bottom-line-oriented Hahn is. Specialisterne only worked because of generous Danish subsidies for employing the developmentally disabled, and Aspiritech is a nonprofit. But for the time being Hahn is committed to the for-profit route.
A lot of software testing is done overseas by workers in India. The case Hahn makes is that his software testers will work for $15 to $20 an hour—pay comparable to, or even lower than, that of software testers in India, but right here in the U.S. After all, he points out, people with autism don’t have a lot of alternatives—when they do find work, it’s usually bagging groceries or sweeping hospital floors at the minimum wage.
Hahn, in other words, is proposing outsourcing to the developmentally disabled rather than the developing world. Asked whether it might be exploitative to pay people with a disability less than those without one for doing the same work, he says he doesn’t see it that way. For one thing, he says, Indian software testers aren’t exactly sweatshop labor; they make about $25 an hour. And if paying less makes the company able to hire the developmentally disabled in the first place, he doesn’t see a problem with it.
“I haven’t had one parent of an autistic child come to me and say this isn’t going to work,” he says. “They say, ‘This is a way for my child to make more money than they would have made otherwise, and allow them to be more independent.’ They worry, what is my child going to do when I’m gone? And this is kind of a way out.”

Thursday, July 28, 2011

Abandonment; Through the Eyes of Autism

Evyn went to a friends and stayed the night.  When it was time for Nicky to go to bed and his sister wasn't home he was upset, asking "Sister tomorrow?".  It wasnt' noon the next day before Nicky was incredibly agitated and on the brink of a meltdown.  He relentlessly asked me (and said to himself) “Sister coming home?”  He missed her; but it was more than that,  it was as if he didn't know if she would be back.   I was sad to see him so uncertain and needing constant assurance, but I understood given the world from his perspective. 

Nicky remembers every therapist he’s bonded with since he was two and they’re his friends.  He’s seen most of his “friends” leave one day, never to be seen again.  His father who always used to come and go, one day never came back.  He probably really doesn’t know for sure, who stays who goes or even when.   No wonder he’s so nervous.

The blessing in the 24 hours of sad Nicky is I now know how much I have to help Nicky prepare for when Evyn leaves for school next month. I’ve been working on getting myself emotionally prepared  and now I'm going to make a plan to help Nicky get prepared. BEFORE she leaves.    

Monday, March 21, 2011

News Alert: Petition to Address Wandering

We have an opportunity to have our voices heard by signing an online petition found at http://www.change.org/naa. 

Here's the text on the petition site. Please check it out, we have a chance to save lives. 

OVERVIEW

The ICD-9-CM Coordination and Maintenance Committee is currently considering a proposal to create a medical diagnostic code for wandering. Please sign this petition to show your support of this effort.
The National Autism Association has brought this issue to the urgent attention of our federal health agencies.  We believe a diagnostic code for wandering will help protect at-risk individuals who have a documented history of wandering and will help to avert dangerous restraint and seclusion practices that are currently in use.  Here's why:
 - Physicians are largely unaware of this issue; therefore, cannot provide prevention materials or advice. A diagnostic code will increase awareness, advice and prevention-material distribution. 
 - A diagnostic code will allow for data collection on the incidence of wandering, thereby increasing opportunities for prevention, education for doctors, caregivers, school administrators and staff, first responders/search personnel.
- Many nonverbal ASD individuals are unable to respond to their name when called. We feel a diagnosis code will lead to increased awareness and the development of emergency search-and-rescue response protocols.
- We believe a medical code will enhance schools’ understanding of wandering so that children with a history of wandering will be better protected. Currently, wandering is not looked at as a medical condition, but one of choice or bad behavior. This has lead to a lack of school training, prevention and emergency response. In January alone, two children with autism went missing from their schools.
- Children and adults with ASD who suddenly flee, bolt or run because of a trigger are at greater risk of restraint or seclusion. We believe a medical code will help establish safe protocols that work to eliminate triggers, thereby eliminating the need for restraint. 
- We’ve seen reports of parents locking/secluding children in their rooms to keep them from wandering outside. While this is anecdotal information, we believe parents, schools and other care providers need better solutions. A medical code has enormous potential to help provide safe alternatives. 
- We believe every disabled individual with a history of wandering — who is at serious risk of injury, trauma or death — should have access to safety devices and prevention materials regardless of the caregiver's income. A medical code for wandering could potentially provide insurance coverage for those unable to afford critical protections for their children/adults.
If you would like to submit a personal or organizational letter to the ICD-9-CM Coordination and Maintenance Committee, please email Donna Pickett at DPickett@cdc.gov.  The deadline for submission of public comments is April 1, 2011.

Saturday, March 12, 2011

"Where's Nicky?! Practical Steps to Ensure Your Child’s Safety



I am always worried about Nicky's safety, if he's out of my sight for a minute my heart races as I think "Where's Nicky?!. Tonight I was looking for information and found this...


ake Practical Steps to Ensure Your Child’s Safety
By Kate Britton, M.S.Ed., M.A., BCBA  and Bridget A. Taylor, PsyD, BCBA-D
Picture it:  You are at home alone with your three children, one of whom has autism. You are cooking dinner for your family when your phone rings. You answer it, diverting your attention from your children for one split second. When you turn back to check on your children, the front door is open and your child with autism is missing. You look out the door and your child is nowhere in sight.
It’s your worst nightmare:  Not knowing if your child is safe or in harm’s way. This fear is intensified if your child has difficulty communicating, does not differentiate between safe and unsafe situations, does not follow instructions consistently, and does not have the ability to defend himself.
Children with autism present with unique communication and behavioral issues that increase their risk of getting lost and injured. Parents of children with autism often fear their children with autism will get lost and be unable to communicate effectively to ensure their safety. In fact, in an online survey conducted by the National Autism Association, 92 percent of the parents indicated their child with autism was at risk of wandering away from his or her home or care provider.
These steps can ensure your child’s safety (some resources for more information are included at the end of the article):
Step 1:  Secure Your Home and Yard
One of the most important and practical things you can do is to secure your home and yard area so that your child is less likely to wander away. Many children quickly learn how to operate standard locks on exit doors. Install locks on doors and gates in the yard that your child cannot open. (Deadbolts that require keys on both sides of the doors or hook eyes that are too high for the child to reach are good examples.) In addition, install an alarm system that signals when a door or window is opened. There are a variety of systems available, including high-tech and low-tech options.
If you want to monitor your child from another room, you could use a video monitoring system or a baby monitor that has video monitoring capability. If you have a pool or a pool is nearby, install a pool alarm and encourage your neighbors who have pools to do the same. If your child goes into pools unsupervised, you can also use the Turtle, which is a wristband that locks securely around your child’s wrists and sounds an alarm if it immersed in water.
Step 2:  Keep Emergency Responders Informed
Call your local non-emergency telephone number and ask personnel to note in the 911 database that someone with autism lives at your address. If there was ever an emergency in your home, the emergency responders will know in advance that they need to respond accordingly. You can purchase and display decals on windows and doors to indicate a child with autism lives at your home.
If your child is at risk of wandering, bring a picture along with information about your child and autism in general to the local police station for the station to keep on file. Let the station officer know your child is at risk of wandering. This information will be helpful in locating your child sooner and help identify your child in the event he or she is found and brought to a police station by someone else.
Step 3:  Inform Your Neighbors
View your neighbors as another set of eyes. Give them a picture of your child along with some helpful information about your child (e.g., he is unable to speak, she responds to simple commands, he likes to swim so please keep your pool gate locked) and about autism in general. Also include your cell phone and home numbers so that they can call in the event they ever see your child wandering away from the house or walking the street unaccompanied by an adult.
Step 4:  Register Your Child
Register with the National Child Identification Program.[link to www.childidprogram.com] The program also provides a kit that includes information on everything law enforcement would need, such as instructions on how to fingerprint your child, in case of an emergency.
Step 5:  Purchase Medical Identification Jewelry
The first question a stranger is likely to ask your child is, “What’s your name?” So it is important that your child can be understood by listeners who don’t know your child. If your child will not be understood or can’t relay enough information, you could use medical identification jewelry, such as a bracelet. Some companies only engrave an ID number and the company’s phone number, and when the company receives a call, a company representative contacts the parent or guardian. Other companies engrave whatever you request such as “Autism – Nonverbal,” allergies, and/or your cell phone number.
Step 6:  Plan Ahead for Vacations or Community Outings
Vacations should be enjoyable but are often stressful especially if your child is prone to wandering. Before choosing a vacation destination, determine the potential risk for your child with autism. For example, if your child tends to wander to swimming areas, you would not want a room near the pool or you may even stay in a location that does not have a pool. When arriving at your destination, inform the staff about your child and advise them that she will require supervision at all times and if they see her unsupervised to call you immediately. In addition, consider using portable door alarms for hotel rooms. If your child tends to wander, consider using child-locator systems or a global positioning system (GPS). There are also low-tech tracking devices, and some phone companies have designed cell phones with GPS programming.
Step 7:  Teach Functional Safety Skills
It’s essential to teach your child skills that will increase his safety. Work with your child’s school or treatment program to include the following safety goals in your child’s individualized education plan (IEP):
  • Responding to name: Teach your child to turn around and orient to you when his name is called.
  • Responding to “Come here”: Teach your child to come to you when you say, “Come here.” Practice this skill across many environments, including outside in the play yard and at the park.
  • Answering social questions: Teach your child to answer social questions that are relevant for safety (e.g., “Where do you live?” or “What is your mother’s name?” or “What is your mother’s cell phone number?”). Teach your child to respond to these questions in varied presentations (e.g., “Who are you?” and “What is your name?”). Be sure your child can be understood by novel listeners. If you child has an augmentative communication system, teach your child to answer these questions by activating her system.
  • Asking for permission to leave the house or yard area: Teach your child to approach you and ask to go for a walk or to go to a specific location.
  • Asking to go to preferred locations/places: Teach your child the names of his preferred locations (e.g., park, ice cream store, etc.) and teach him to request to go to these locations by name or by exchanging a picture of a place. Photos of the places could be hung on the inside front door to serve as a prompt for your child to request a preferred location.
  • Holding hands: Teach your younger child to hold your hand when you are walking in the community. While this sounds like a simple goal, some children with autism may require specific teaching in cooperating with hand holding especially in the community.
  • Crossing streets: Teach your child the skill of waiting at cross walks until no cars are present or until you give her permission to cross the street.
  • Walking/staying with an adult: Teach your child to follow alongside of you when you walk in the community, without holding his hand. This skill should be practiced in school or home first and then in the community.
  • Waiting appropriately: Teach your child to wait next to you in varied locations and in line at department stores.
  • Cooperating with wearing medical identification jewelry: Teach your child to tolerate wearing an identification bracelet or necklace.
  • Exchanging an identification card: Teach your child to take an identification card out of her pocket or wallet when asked different types of question such as “Are you lost?” or “What is your name?”
  • Answering a cell phone and following directions and answering questions: Teach your child to follow directions on the phone (e.g., “Walk to the kitchen” or “Find an adult”), and to answer questions on the phone (e.g., “Where are you?”).
  • Declining inappropriate instructions: Teach your child to walk away and say “No!” when given an inappropriate instruction from a stranger  (e.g., if a novel person says, “Come with me,” or “Give me your wallet,” the child is taught to say, “No” and walk away to find a familiar person to report what happened). When teaching, use novel people so the child distinguishes whom to respond to in this manner.
  • Identifying a stranger: Teach your child to identify strangers versus familiar people in photos and then in the presence of novel people and familiar people. Teach your child the types of interactions that are appropriate with familiar people and those that are not with a stranger.
  • Exiting a home/building during a fire alarm: Teach your child a place to exit to in the event of a fire alarm or home emergency (e.g., always to the driveway and wait in a specific spot).
  • Swimming: Teach your child to swim. Many local community centers have swim programs for children with disabilities.
Some Helpful Resources
Identification and Registration
www.iloveachildwithautism.com
www.childidprogram.com
www.medicalert.org
www.kidsafeid.com (identification cards)