What right to flight?

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Posted by Kyron | Posted in Advocacy, Autism, General, Television | Posted on 26-06-2008

As Good Morning America played in the background of our morning chaos yesterday, I quickly hit the record button on the TiVo. A parent and her toddler who is autistic were forced off an American Airlines flight. The mother took a train up to New York City to appear on the show.American Eagle Plane

I’ve watched it all now and let me tell you how much I hate these stories. Unless you’re there it’s always hard to judge in hindsight. However I still felt it was worth putting out there. I feel for this mother!! I have been on a plane with both my daughter who has some truly autistic behaviors (not that the paranoia from Katherine’s psychosis doesn’t make getting thru airport security bad enough). Quite frankly it became so difficult we stopped flying with her and at the time we made that decision she was flying once a month from Georgia to New Jersey to visit with her father. I know that this decision wound up working for us because her father came to recognize the real peril of her behaviors and the potential for real problems. Now he comes here instead.

I’ve also flown without my children but had other peoples children on the plane. Some of these children were without question disruptive, chaotic, trying. It was mayhem. Do I as a fellow passenger wish that the child would have been more quiet, more under control? Sure! Please – I don’t want 4-5 hours of my own child in chaos let alone one I don’t know. Reality though?? Please. The reality is that with airlines today I’d like to act like some of those kids were. The difference is my decades of additional experience and my brain’s ability to exhibit impulse control. Now take away the decades of experience and the fact that even the most “normal” child has impulse control issues because their brain is not fully formed.

What is it these days where adults are so self-absorbed that they can’t handle some chaos or turn it around and revel in a child who is only acting out like we wish we could? Where is a helping hand to assist a mom who has a child who’s boisterous or fidgety because you have all been waiting on that plane or in the terminal for what seems like forever?

I watched the mom – Janice Farrell calm her son on TV. It’s fairly obvious that she has the ability to control the child given the right environment. Certainly the one described by Ms. Farrell (which you can see by clicking here) was anything but the right environment for a child with any special needs, let alone autism. I am guessing that Ms. Farrell could have done as much to calm her son on this flight had she been met by understanding rather than judgement. The airline – American – released a statement saying

“The child had been crying and screaming uncontrollably, to the point where the child’s well being was in question,” American Airlines, the parent company of American Eagle, said in a statement. “Though, ultimately, the parent’s violation of FAA regulations was the cause for removal, both situations contributed to an uncomfortable and potentially unsafe atmosphere for our passengers and crew.”

Ms. Farrell says that she did comply and on that issue all I can say is who knows? I know she says she allowed them to stow the bag. Let me put on the record that I personally don’t believe for a minute that this was the issue. I’m guessing that like many others, that flight attendant wasn’t in the mood to deal with a challenging child. I am guessing that to top the poor attitude that the flight attendant exacerbated an already difficult situation by her lack of understanding how her tugging at the seatbelt and tone of voice were only adding fuel to the fire. I’m guessing that had she been given the opportunity she could have calmed her son just as she did on live tv…..without a bunch of nasty, judgmental people harping on her and her small child. No toddler will do well under those circumstances let alone one that has problems interpreting social signals and sensory input!

The reality is that the airline does need to make sure that it’s safe for everyone to travel however it just seems to me that these things just didn’t happen before 9/11 and now I seem to see them all over the place. Everyone had a little more patience because the whole airport thing was a whole lot less grueling. The reality is at worst I would guess that this child posed a nuisance and a headache factor for some employees and passengers who were either basically intolerant or in a particularly bad mood that day. I get needing to keep people safe from terrorists, not from terrorized 2 year olds. And face it – that child was terrorized. Even if I assume that Ms. Farrell’s view is biased – without question the manner in which we are now required to travel with increased security it torturous for even the most seasoned traveler.

Seems to me that human decency requires some patience with the youngest of us. We need to go back to viewing our world as a larger family of whom we need to be supportive and caring of. Let’s face it….turning the plane around, going back to the gate took as much time as allowing this mother the space to help her child calm down. I don’t know why this woman and her child chose to travel via air. I don’t even care. It seems that disabilities have to be accommodated – and American Airlines blew it on this call not once but twice. Their first opportunity was blown by the flight crew – pilot included. The second was from American corporate who decided than rather to suggest that a policy of Ancora Imparo (thank you Dr. Rick Rader of Exceptional Parent magazine for introducing me to that term) which means ‘I am still learning’ in which maybe they took some accountability for their employees behavior and remembered we all are continually learning and we need to allow new experiences to give us growth rather than duck behind the blame game. What an opportunity they missed by not acknowledging they had something they could learn from this rather than casting blame away from them and their employees.

Green the Vaccine March

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Posted by Kyron | Posted in Advocacy, Autism | Posted on 06-06-2008

Well I missed the interview in the summer chaos that is our home but found a write up on it on the Good Morning America/ABC News website. Jenny McCarthy and Jim Carrey were interviewed on WedneJenny McCarthy, Jim Carrey and their respective children courtesy of The Huffington Postsday’s show before they took to the streets of Washington DC to March on Washington with several thousand supporters to ask for support in both “greening” vaccines as well as reviewing the current vaccine schedule for children.

Let me make it very clear from the outset, popular or not, I am vehemently opposed to those who feel that the potential for autism is justification for withholding any and all vaccines from their children. I feel it is irresponsible parenting and irresponsible citizenship. I’d rather have my child here and autistic than dead from pertussis or measles or mumps or any of the other things vaccines protect our children and the population as a whole from. I am sure at this point some of you are saying but you just don’t understand what having an autistic child is like!!! You’d be right. I don’t know the full weight of it. I do know the behavioral aspect of it pretty sufficiently even if Katherine isn’t autistic. I wouldn’t wish autism or it’s devastating effects on any child or their family. I do not believe however that the scientific evidence currently shows conclusively that vaccines are the cause of autism. I do however believe that there are certain correlations that need far more investigation than they have gotten. I also believe that you can’t have the group that says to you “vaccines are good, and important” (CDC) being the ones responsible for investigating if maybe they were wrong….maybe something was missed….obviously the problem is not global but SOME kids may very well be having reactions to the vaccines. What makes those kids different from the ones that do? It’s sure as heck worth investigating further.

The argument that I felt particularly compelling from this march was the schedule of vaccinations. The basics of the proposal seem to be that rather than skipping immunizations that in addition to removing the remaining thimerosal from the vaccines and extending the vaccination schedule so children and their small bodies are given additional time in between vaccinations to recover and regain strength so that their immune system is ready to fight with the next vaccination. Maybe it won’t do any good – and I am not a doctor – but the benefits of investigating this as a possible method to understanding if the vaccination schedule has some relationship to the increase in autism certainly seems reasonable and responsible.

My son is 2 3/4 years old. Our family is blessed. My son is in the 149 out of 150 who has not developed autism. I know that when he was an infant though I prayed after every vaccination. I know that Katherine had seizures a couple of times when the vaccination spiked a fever. I can’t imagine what it would be to give a vaccine and to “lose” the child you had once known to something like autism. I couldn’t imagine that any more than someone could imagine what it is like to have someone tell you that your child has had a massive stroke and may never walk or talk. You just can’t know unless you’ve experienced it first hand. He had the same vaccines. What is the difference between him and my friend’s son who was diagnosed with Aspergers? Who knows?? Certainly not the medical profession.

I can’t help but feel that for a condition which everyone seems to agree affects approximately 1 in 150 children that more people in the medical community aren’t alarmed and aggressively pursuing answers, treatments and better yet, cures? It certainly seems that none of the suggestions I’ve heard or read about from this Green the Vaccine March would be irresponsible.

I am surprised at how little coverage this March seems to have gotten. There has been speculation that there has been pressure brought to bear on the networks and other news outlets to overlook covering this event because of some fear that it would lead to widespread vaccination moratoriums by panic stricken parents. I hope to heavens sake that I am just naive in thinking that we still enjoy freedom of the press. It seems to me that anyone who actually thinks that withholding information in that manner or being unwilling to engage in debate and discussion would think that a parent wouldn’t view that with the very real suspicion it deserves. I never met a topic that couldn’t benefit from healthy, respectful debate. Respectful of course being the operative word. You don’t have to like a persons position to be respectful that there is someone who has an opinion other than your own :)

The reality is we have far too many children suffering and there must be a reason. It’s imperative that the debate keeps autism in front of people so that we can continue to push for research and answers. Unfortunately, children are not voters. We need to remind those in power that for every child with autism there is a mother, a father, a grandmother, a grandfather, an aunt, an uncle, a cousin and on and on who will vote on their behalf. We are our children’s best advocates. Whether you subscribe to one side of the debate or the other everyone can agree that answers need to be found and found now.

Thanks to TACA (Talk About Curing Autism), The Huffington Post, and Barbara Fischkin at the Huffington Post

TiVo® Alert Autism Every Day on Sundance Channel

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Posted by Kyron | Posted in Autism, Television | Posted on 31-03-2008

Autism Every Day on Sundance Channel:

The Sundance Channel will present the U.S. television premiere of Lauren Thierry’s documentary Autism Every Day on Wednesday, April 2 at 8 p.m. ET (which is World Autism Awareness Day). The film documents the day in the lives of eight families struggling to raise children with autism.

I hope that many people take the opportunity to see this

The Sunday Paper for March 30, 2008…

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Posted by Kyron | Posted in Advocacy, Autism, Diagnoses, General, Sunday Paper, Television | Posted on 30-03-2008

…and a cup of coffee

Every Sunday I hope to offer you my version of the Sunday paper with articles from theCoffee and the Sunday Paper past week or two, relevant or uplifitng (or both), on various issues within the special needs community.


Students with needs discover their talents

Program in Mamaroneck, NY helps teens with a variety of special needs plan for their futures to ensure they have the basic life skills they will need after leaving school

Students raising money to help Gilbert teacher
Students are fundraising to help special education teacher Juan Reyes offset the approximately $600-700 annually he goes out of pocket to provide for his students with special needs.

Synagogue to hold service for special needs children

Syangogue holds service for special needs children and their family. Serving West San Fernando and Conejo valleys

Disability Advocates want name change for Missouri state agency

Advocates lobbied at the Missouri state capital to have the words mental retardation dropped from the state agency name

US Airways helps special needs dogs

US Airways is helping to train service dogs with their puppies in flight program

Family shocked by MD’s speed over 11 year old
Muscular Dystrophy’s impact on an 11 year old boy and his family

Three documentaries put faces on autism

Realistic portrayals of autism hit the big screen with Autism Every Day, Autism: The Musical and Her name is Sabine

Little Horizons Produces Early Childhood Education DVDs for special needs children

Fun with the ABC’s allows special needs children and able bodied children to have fun side by side while learning their ABC’s

The Disability Savings Act of 2008

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Posted by Kyron | Posted in Advocacy, Autism, Diagnoses, Legal, News, Political, Resources, Strategies | Posted on 17-03-2008

St. Patrick's DayFirst of all – Happy St. Patrick’s Day!! As a proud irishwoman I can’t let the day go by without acknowledging it!

Today I wanted you all to become aware of a piece of legislation introduced by former presidential candidate Senator Chris Dodd. It is called the Disability Savings Act of 2008. According to Senator Dodd’s website the purpose of this Act is:

To encourage individuals with disabilities and their families to save private funds for disability-related expenses to supplement, not supplant, benefits provided by other sources (including Medicaid and private insurance) so that people with disabilities can maintain health, independence, and quality of life.

These accounts would work similarly to a 529 plan. It allows family members to put aside money to supplement care needed for education, medical services, job training and transportation. The money saved in this program will not jeopardize government program support for individuals with special needs.

With a cap of $1 million Disability Savings Accounts (DSA’s) will have certain tax benefits as well:

  • Funds expended from the DSA for specific services such as education, medical services, employment training and support, transportation, and other related services will be tax-free.
  • Interest on accounts with a balance of $250,000 or less is tax free.
  • Low income earners will receive a refundable matching tax credit of up to $1000 for their contributions to the DSA.

Funds from college savings plans and special needs trusts for the same beneficiary can be rolled into the DSA without penalty.

The theory is that these accounts would be far easier to set up than say a Supplemental Needs Trust and therefore make available an avenue for planning for special needs individuals without the need to consult an attorney which can be cost prohibitive. Disability would be determined by the Social Security Administration or the Disability Determination Service of a state and would have to be under the age of 65.

Senator Dodd acknowledges the difficulty of passing a piece of legislation like this during an election year. He told the people gathered for this announcement that he needed a co-sponsor from across the aisle (meaning he needs a Republican) and that he needs significant support. Actually he said he needed an army of supporters and then added “And you’re my army

He absolutely does need an Army if we stand any chance of getting this legislation passed. Be a part of the army. If you have a US Senator representing you that is Republican, suggest they support this by co-sponsoring this important piece of legislation. Regardless of who represents you in the US Senate (you can find out at votesmart.org) contact them asking them to support this incredibly important piece of legislation.

I’ll update you as I can regarding it’s movement through the Senate. Seems to me it only benefits everyone to have this passed. Let’s start marching forward now!!!

The Sunday Paper for March 16, 2008

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Posted by Kyron | Posted in Articles, Autism, Diagnoses, Disability Groups, Education, Inspiriation, Medical, News, Sunday Paper | Posted on 16-03-2008

…and a cup of coffee

Every Sunday I hope to offer you my version of the Sunday paper with articles from theCoffee and the Sunday Paper past week or two, relevant or uplifitng (or both), on various issues within the special needs community.


School’s Basketball team adds special needs children

Middle School Basketball team in California shows what the true meaning of sportsmanship is with inclusive basketball team

No Dental Care for Special Needs Patients

Adult special needs patients in Cork, Ireland are going without even basic dental care because of the lack of anesthesia services

Profile: Melissa Piotrowski teaches music to special needs students

22 year old Melissa Piotrowski takes a love of music and shares it with special needs children

11th Berkshire Disability Day planned

Event is a day of celebration and education to increase community awareness of the accomplishments of those with diverse abilities. Showcase of available services also planned.

Book transports child with special needs

Photography teacher Joe Baltz has his students create a 16 page book starring a child with special needs.

Alzheimer’s, Down’s link sheds light

Researchers at the Byrd Alzheimer’s Center and Research Institute say they have recently learned some important new things about the link between Alzheimer’s disease and Down’s Syndrome

My baby, right or wrong
Woman chooses not to test unborn child for Down’s Syndrome and the reasoning behind her choice

Vaccine/Autism Debate reignited by Georgia legal case

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Posted by Kyron | Posted in Autism, News | Posted on 06-03-2008

I’d be remiss if I didn’t mention that which is happening in my own backyard.  CNN among other major news outlets are covering the renewal of the autism/vaccine debate.

In a nutshell in this Georgia case, the federal government, in a what has been described by various legal experts as a narrowly worded statement, has conceded that vaccines a girl was given worsened a pre-existing mitochondrial disorder which led to autism spectrum symptoms. This concession by the federal government in this one case of course has re-sparked the vaccine/autism debate.

Some feel that this opens the door for others to be compensated by the vaccine injury fund. Others feel that the wording of this decision is such that it’s an “isolated finding” and unlikely to impact any future cases regarding autism and vaccines.

It’s a big enough story to even get Republican Presidential candidate John McCain stating there is strong evidence that the vaccines are linked to autism. If that’s not huge in favor of those who are desperately seeking compensation for their child, surely this case is going to give new hope to thousands and thousands of families.

I don’t pretend to begin to have the answers. I can tell you I know what it is to firmly believe you know what irreparably harmed your child and being unable to have it stand up in a court of law. To feel as if you can not exact some justice for your precious child is a pain no one should suffer.

The hope for me is that the debate isn’t over. Nothing ever suffered from debate. Debate will spawn further research which in turn can only benefit all of our children and our children’s children. With the increase in autism cases reaching epic proportions this can only benefit us all.

The Sunday Paper for March 2, 2008

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Posted by Kyron | Posted in Advocacy, Articles, Autism, Diagnoses, Disability Groups, Education, Inspiriation, Medical, News, Sunday Paper | Posted on 02-03-2008

…and a cup of coffee

Every Sunday I hope to offer you my version of the Sunday paper with articles from theCoffee and the Sunday Paper past week or two, relevant or uplifitng (or both), on various issues within the special needs community.

Special Siblings

Photographer pays tribute to special needs sibling with one man exhibit.

Special Needs Dentistry

Clinic dedicated to doing dental care for those with physical and mental disabilities.

Park official to receive award for special needs work
Belief that sports and outdoor activities give those with special needs a new outlook on life drives recreation director to running therapeutic local programs.

Truly special aide is recognized
Elaine Crowley is recognized by the Federation for Children with Special Needs Community Partnership Award for her work as a paraprofessional in Massachusetts schools.

Notre Dame football coach’s wife writes on daughter’s health ordeal

Maura Weis writes on her experiences with daughter Hannah and her complex fight against Tassinaris syndrome

Special needs kids are gym dandy at Us Too
California mom solves need for gym class for a child with autism by starting one for her son and others like him.

The Truth About Autism: Scientists Reconsider What They Think They Know
Amanda Baggs a woman who is non-verbal and diagnosed with autism makes You Tube Videos which make both scientists and laymen rethink what they “think” they know about autism and its related disorders.

Despite disability, JHS senior will walk for autistic children

Florida High School senior Gregory Nemiroff  has Dandy Walker syndrome affecting motor skills and speech in various ways but is committed to walking in the local “Autism Speaks” Walk Now for Autism event.

The last great struggle – A pioneer views disability as the final frontier in civil rights
Keith P. Jones who was born with cerebral palsy and uses a wheelchair, is a disability rights consultant and advocate as well as composer, producer and hip-hop performer.

The Sunday Paper for February 24, 2008

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Posted by Kyron | Posted in Autism, Diagnoses, Disability Groups, Inspiriation, Legal, Medical, News, Services, Strategies, Sunday Paper | Posted on 24-02-2008

…and a cup of coffee

Every Sunday I hope to offer you my version of the Sunday paper with articles from theCoffee and the Sunday Paper past week or two, relevant or uplifitng (or both), on various issues within the special needs community.

Gymnastics Classes Bring Learning, Fun To Those With Special Needs

Gymnastics and Exercise class for children age 3 to high school give children the opportunity to participate in classes the exercise their minds and their muscles.

Disability Awareness Week

Idaho State University organizes a week of events to build awareness and create better understanding of people on campus and within the community.

Families to hold toy swap for special-needs children

A group of parents wanting a setting to hold a toy exchange for families of special needs children may have a larger event than originally planned.

Madison County special needs students to participate in ‘Big Hearts’ Pageant
The Extra Special People organization hosts and pageant spotlighting the abilities of people with disabilities.

Homeland Security Funds Grant for Special Needs
A federal Homeland Security grant is making emergency planning for people with special needs possible in this county.

For teen star of ‘Breaking Bad’, real-life disability is no obstacle
RJ Mitte provides unique authenticity to the disabled character he plays on AMC’s edgy new series Breaking Bad (Sunday, 10ET/PT)

For some parents, the emotional strain is greater

Dr. Rachel Bryant discusses the stages of mourning in relation to parents of children with special needs.

A first for Noelle; Schools’ behavior specialist honored for her work
District behavior specialist Noelle Neault honored for her outstanding work with youngsters in the Hanover Public School District.

Looking down on Big Brother

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Posted by Kyron | Posted in Autism, News, Television | Posted on 21-02-2008

It’s amazing what can be put through on a “reality show”. On the one hand, you have Angela Martin, American Idol contestant whose short stint on that show gave the opportunity to highlight Rett’s Syndrome and get this little known disability some well deserved face time. What’s that expression about no good deed goes unpunished?

So yesterday I run across the story of Big Brother on MSNBC. Big Brother is a “reality show” in which a dozen or so individuals are picked to live in isolation at a house under the constant glare of cameras filming their every move and interaction. These roommates win prizes by avoiding being voted out of the house.

Apparently someone felt that it makes good television to allow someone who supposedly does volunteer work with special needs individuals at an autism foundation to refer to them as “retards”. Well leaving the decision as to what is “good” TV for a minute, we know it got people talking. I’m writing about it, MSNBC is covering it, pretty much everyone seems to be covering it according to a simple google search.

And why not? Autism groups are rightly calling for apologies from CBS whose contention it is that the fact that they showed the outrage of other housemates somehow makes it ok. More interesting to me is that CBS goes so far as to say that while they find the statements to be offensive, they also in the same statement say they are not responsible for views aired on the program.

I’m writing this in the middle of the night and so maybe my brain is a tad bit addled but please explain this to me like I’m no smarter than a 5th grader (who by the way I believe already know the answer to this rhetorical question). How is it that CBS broadcasts this over their airwaves, can make all kinds of bleeps and bloops to cover any number of other offensive words but have no control over the views aired on the program?

I’ll be the first to admit, as the mother of a special needs child with a diagnosis of mental retardation – the whole retard thing just makes my stomach heave. The fact that this individual claims to work with individuals who may have a similar co-existing diagnosis makes it just that much worse. The fact that CBS seems to think that airing one person saying don’t say that makes airing the view somehow balanced and therefore more acceptable says to me that the whole lot of them over there need some people first language lessons.

Disability is Natural is one of my favorite sites for this information. They have a great printout located here. It seems to me the powers that be just aren’t getting it. I’d like us to all help them “get it” just a little bit better. I hope that maybe you’d be willing to help me in this effort. I’d like you to print a copy of the Disability is Natural People First Language Chart and mail it off to Mr. Leslie Moonves President and CEO at CBS Corporation. I’ll be adding a copy of this blog entry to Mr. Moonves for good measure. I don’t claim to have millions of visitors here to my blog. What I’m hoping for is a more viral effect….you know that you tell two friends and they tell two friends kind of effect and maybe CBS under the guidance of Mr. Moonves will be able to be more responsible for what airs as “entertainment” on his network.

If you are willing to do this Mr. Moonves can be reached at:

Leslie Moonves
President and Chief Executive Officer, CBS Corporation
51 West 52nd Street
New York, NY 10019

Let’s make sure that Mr. Moonves can educate a whole bunch of people on people first language by the time he gets done getting these letters.