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Christie Taylor: How My Son's Differences Are Extraordinary

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Click here to watch the TEDTalk that inspired this post.

In the TEDTalk My Autistic Brothers, Faith Jegede shares with us her experiences growing up with two brothers who have autism, one who does not speak with words, but with his heart, and her other brother who has a brilliant memory.

Faith explains how her brothers' differences became more apparent as they grew older. However, she has been able to look beyond their growing gap of differences and challenges to see the unique and extraordinary gifts inherent within both of her brothers.

Just yesterday, I talked to a group of genetic medical students about what it is like to have a child with Down syndrome. I applaud the genetics professor for giving these students an opportunity to look beyond black and white test results, and consider the unique person within.

I began my portion of the discussion with the students by describing the moment I received my son's suspected diagnosis of Down syndrome, which was almost immediately after his birth. The results of a genetic test would take 72 hours, but all physical indicators confirmed our suspicions, so that when the test results did come in, they only proved what we already knew.

I would guess every parent who has a child with special needs remembers that time of the initial diagnosis. It is a life changer for almost every parent, and, for me, it was a time of grief and loss of the expectations of a "normal" son and also ripe with the fear of the unknown.

The oval shape of my son's eyes was the first thing that confirmed the truth to me, that my son did in fact have Down syndrome. But, his eyes were a contradiction to me at the time. What confirmed the news of such sadness also revealed such love. I wanted to know him, love him and be the best mother I could be to him. Over seven years later, I am still swept away by the beauty and depth of his eyes.

It is true that there are many challenges in living with a disability, and the gap between my son and his peers does grow every, single year. My son has hypothyroidism, low muscle tone and cognitive delays. He needs lots of movement and exercise to stay at a healthy weight and build his muscle strength. He also works with therapists on his fine motor skills and his speech.

The state of his thyroid and the results of his therapeutic work can easily be measured in tests. It gives us a benchmark, a place to work from on setting new goals. Yet, even though this is an important part of our life with my son, it is not the whole of it.

What can't be measured in a test is the deep feeling of joy and pride when my son achieves a hard earned milestone. What can't be measured in a test is how his slower pace and friendly, forgiving attitude has taught me to be a kinder and more compassionate person. What can't be measured in a test is how he will start singing a song in a store, and all of a sudden people are laughing and smiling with one another. What can't be measured in a test is how he has an uncontrollable giggle that can brighten the darkest mood. The list goes on. My son is not Down syndrome, he is a boy full of his own unique gifts and talents, who also happens to have Down syndrome.

I told these students that many parents will be blinded by the test results as I once was. It will be hard for them to look beyond the list of challenges at first, and see the whole of the child within.

As geneticists, if they truly wish to serve their clients in the best way possible, it will be to always remember the human component. Tests are essential but so are the countless things that can't be measured.

What is measurable about all of us is just a small part of our whole being. We all have innate gifts and talents, no matter our challenges and differences. We are all different, and, in so being, we are all extraordinary.

We want to know what you think. Join the discussion by posting a comment below or tweeting #TEDWeekends. Interested in blogging for a future edition of TED Weekends? Email us at This e-mail address is being protected from spambots. You need JavaScript enabled to view it .


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This Teen Has Autism. He's Also One Of The Top High School Runners In The Country.

When Mike Brannigan was 18 months old, he was diagnosed with autism. At the time, his doctors said he would likely need a special school and a group home. His mom, Edie, admits she thought he'd “never be able to function in the world.”

Fast-forward several years.

Brannigan is now 17, and is a senior at Northport High School, a public school in Long Island, New York. He's doing well academically, he has friends -- and he also happens to be one of the best young athletes in the country.

In fact, according to NBC News, Brannigan is one of the top 10 high school runners in the United States. He’s "so lightning fast," the news outlet writes, that "he can run a mile in four minutes and seven seconds flat."

Brannigan's mom, Edie, says she believes her son's love of running has been instrumental in helping him blossom as a person and to focus academically.

Before he discovered running, "the gap was far and wide between Mikey and the peers in his age group," his mother told high school running website DyeStat earlier this year. "I wish I could [scientifically] prove it, but within two years he was age-appropriate with his typical peers. We knew right then that whatever he was doing with the running was doing something in his brain at a pronounced rate. It was a miracle."

With his impressive track record and wow-worthy work ethic (he runs "every day, sixty plus miles a week," NBC says), it should come as no surprise that Brannigan is currently being wooed by more than 200 colleges -- including Duke, Georgetown and Stanford -- that have already expressed interest in recruiting the young man.

Brannigan hopes to attend a Division One school; but his dreams are even bigger than that. “I want to be a professional athlete,” he told NBC, adding that he hopes to one day represent the United States at the Olympic Games.

People who have witnessed Brannigan's talent and dedication first-hand say the young man is well on his way to achieving this goal.

It’s gonna end with Mikey being on an Olympic team,” Steven Cuomo, Brannigan's longtime coach, told Running Times last year. “I didn’t say a Paralympics team. I said Olympic team. Then we’re gonna blow the lid off what people think [athletes with autism] can and cannot do.”


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Bill Lichtenstein: Exercising Restraint in Schools

In 2012, I wrote an article for the Sunday New York Times that exposed the use of physical restraints and seclusion rooms with kids in schools across the country.

I learned about these practices, which at the time seemed almost unimaginable to me and many other parents, when I discovered that our 5 year-old daughter had been locked almost daily, over a three-month period, in a seclusion room, which had previously been a teacher's phone booth, and was later used as a mop closet, in the basement stairwell at her school in Lexington, MA.

In the two years since my Times story, the controversy surrounding the use of physical restraints and seclusion rooms in schools has exploded and resonated across the country from Hawaii to Massachusetts, fueled by a powerful combination of concerned parents and enterprising journalists intent on exposing these practices when and where they occur. Meanwhile, many schools have publicly denied their existence, in some cases despite incontrovertible evidence, and parents can find themselves being intimidated or even publicly attacked for speaking out.

For two years, I've witnessed the evolution of this story as a journalist, and at the same time the issue has affected me as a parent whose child was subjected to these damaging practices. As increasing numbers of parents are becoming concerned about the use of restraints and seclusion rooms in schools attended by their kids, and as a national mobilization of concerned parents and others is underway seeking to pass national legislation to curtail these practices, it seemed like a good time to take a look at the issue from a parent's perspective.

Specifically, how widespread are the use of restraints and seclusion? Are they needed? What do parents face when they challenge their schools or speak out about their use? And how can parents and other concerned members of the public get involved with national efforts to insure that all kids are kept safe in school?

What exactly is restraint and seclusion in schools? Is it like a student getting a "time out?"

According to the U.S. House Committee on Education and the Workforce, which is working to ban these practices:

"Seclusion means involuntarily isolating a student in an area by himself or herself [from which the student is physically prevented from leaving.] . . . This includes putting children in dark, small rooms as punishment." This is different than a "time out" in which a student is separated from others to allow him or her a chance to calm down.

DANGEROUS PRACTICES--The use of restraints and seclusion rooms, such as these in a Lexington, MA school, often lead to physical and emotional injury to students.

Restraint according to the Committee means "restricting a student's freedom of movement [including immobilizing a student's torso, arms, legs or head]. Restraint can become fatal when it prevents a child's ability to breathe. In some of the cases examined in [a 2009 Government Accountability Office] report, ropes, duct tape, chairs with straps and bungee cords were used to restrain or isolate young children."

How widespread are these practices and what kids are involved?

A 2009 Government Accountability Office (GAO) report found that 20 students had died while in seclusion rooms; countless others as young as three and four years old have been injured and traumatized. One young teen in Georgia hung himself in a seclusion room while staff sat outside the locked door; a seven year-old died face down in physical restraint; and a young teen was suffocated face down in restraint by his teacher twice his size.

According to the advocacy group TASH, recent reports indicate that the shoes of an 8 year-old with Down Syndrome were duct-taped so tightly that she could not walk and her ankles were bruised; a 10 year-old with autism was pinned face down after getting upset over a puzzle; and a child with Cerebral Palsy severed her finger when she was confined in seclusion. Parents often are not told by schools about restraint or seclusion, or they learn about it long after it has occurred.

Federal data released in March from the U.S. Department of Education Office for Civil Rights documents the extent of restraint and seclusion, finding more than 267,000 incidents reported nationwide in the 2012 school year alone. According to a recent statement from Rep. George Miller of the House Education and Workforce Committee, "while that number is alarming in itself, what's even more concerning is the fact that many of our largest school districts failed to report on their use of seclusion and restraint at all --indicating that the actual rate of use is likely much higher."

Also alarming, according to Miller, is that "despite the fact that special needs students comprise only 12 percent of the total student population, this data shows that nearly 60 percent of all incidents of seclusion or involuntary confinement involve students with physical, emotional, or intellectual disabilities, and that these students make up 75 percent of those subjected to restraints."

Additionally, their use is disproportionate by race: African-American students comprise only 19 percent of all students with disabilities, but they make up 36 percent of students with disabilities subjected to mechanical restraint.

The Department of Education Office for Civil Rights tracked the use of restraints and seclusion state by state and school district by school district and found: "in Nevada, Florida, and Wyoming, students with disabilities . . . represent less than 15% of students enrolled in the state, but more than 90% of the students who were physically restrained in the state. Nevada (96%), Florida (95%), and Wyoming (93%) reported the highest percentages of physically retrained students with disabilities. . ."

But aren't restraint and seclusion sometimes needed? How else can schools handle kids, especially those who can be difficult and get out of control?

The short answer is, as experts will tell you, that physical restraints and seclusion rooms don't work as ways of helping students learn and practice self-control, and that according to research there are behavioral techniques of working with kids that do work, as well as teaching kids self-regulation, how to negotiate and how to communicate more effectively.

The U.S. Secretary of Education, Arne Duncan, wrote to schools nationally in 2012 saying, "there continues to be no evidence that using restraint or seclusion is effective in reducing the occurrence of the problem behaviors that frequently precipitate the use of such techniques." Furthermore, Duncan stressed that "any behavioral intervention must be consistent with the child's rights to be treated with dignity and to be free from abuse."

According to TASH, there are "evidence-based positive behavioral interventions and supports [that have been] shown to greatly diminish and even eliminate the need to use restraint and seclusion." As an example, Dr. Michael George, director of Lehigh University's Centennial School, an alternative school in Pennsylvania that targets students with aggressive behavioral issues, told the U.S. Senate Committee on Health, Education, Labor and Pensions that when he arrived at the school, "the use of physical restraint was commonplace." George said he closed the school's two seclusion rooms, and cut restraint and seclusion use from over 1,000 occurrences per year to less than ten through the use of positive intervention plans. "We have the technical knowledge necessary . . . to end the overreliance of seclusion and physical restraint," he said.

Joe Ryan seconds Dr. George. Dr. Ryan is a Professor of Special Education at Clemson University and a national expert on working with students with emotional and behavioral disorders. "It simply defies logic," said Ryan, "that with the current emphasis on implementing evidence-based practices in classrooms, many schools have elected to embrace seclusion and restraint while ignoring safer research based practices for managing aggressive behaviors."

The impact on parents who find their children have been subjected to restraints and seclusion can be devastating.

Robert Ernst was subjected to a seclusion room as a first grader in Lexington, MA. Robert, who's now 19, told his story recently in Washington, DC, at an event held for the introduction of federal legislation that would curb these practices.

"I was in first grade and I was taken by my special education teachers to a seclusion room for acting out in class," said Robert. "I was dragged down the hallway of the school by my wrists, and thrown into a windowless, padded concrete room by myself, complexly unsupervised for up to a half hour at a time . . . At the time this was extremely terrifying."

His mother, Wendy Ernst, recalls what it was like to try and advocate for Robert:

"It was a difficult time because the school didn't want to listen to any other perspectives about what they might be able to do," said Wendy. They were insistent that it was the only thing that would work. It made you feel frustrated that they couldn't come up with something else as this was obviously harming your child. It was like torture."

SPEAKING OUT ON SECLUSION--Robert Ernst, subjected to seclusion practices as a first grader, talks about his experiences at the introduction of the "Keeping All Students Safe Act" earlier this year.

When asked what advice she had for parents dealing with these issues, Wendy Ernst responded: "Tell them to stand up for your child. Believe your child. And insist on having reports in writing . . . They can't say they didn't do that. Because it's in writing." Wendy added that restraint and seclusion are "too often is the first response, when it should only be used as a last resort when someone is in imminent danger."

What about parents who speak up? What are the risks involved for parents who can find themselves being singled out for speaking about these issues publicly and trying to help their children?

All too often the response of school districts when confronted about the use of restraints and seclusion is to deny, minimize and blame.

In Hawaii, in early 2013, Hawaii News Now reported that the families of six disabled students had come forward with allegations of abuse by school staff. Cell phone images of one student being held down by the neck were released, and a lawsuit alleged that another student was forced to eat food she had thrown up. According to the news organization: "At the time of the allegations, the state said its own investigation had uncovered no evidence of abuse and that the women who made the initial claims were lying. Earlier this year, an administrative law judge ruled the students had been physically and emotionally abused by school staffers and suggested that the state had botched its investigation into the abuse."

As a result of the actions of the parents and news coverage, a state bill that prohibits the use of seclusion and physical restraint on students in public schools, and protects some of Hawaii's most vulnerable students, was signed into law by Governor Neil Abercrombie.

In Lexington, MA, a survey of parents of kids with special needs found that of 61 parents commenting on their communications with the school, 23 of them (37%) indicated that they felt intimidation and the fear of reduction of services, or not receiving the services their children need, as reasons for not feeling comfortable raising questions and concerns.

One Lexington parent stated in the report, "I am afraid of being considered a trouble maker and then my child's services will suffer." Another parent commented, "There is retaliation for raising concerns in the form of delayed meetings, limiting access to teachers, and even filing false child abuse reports."

Keeping All Students Safe Act

To curtail the use of restraint and seclusion in schools across the country, Senator Tom Harkin and Rep. George Miller have introduced the federal Keeping All Students Safe Act.

"These harmful practices, referred to as seclusion and restraint, are commonly used as disciplinary measures, most frequently on students of color and those with disabilities," wrote Rep. George Miller regarding the bill, which would ban restraint and seclusion except in cases where the student or others are in imminent danger.

"There's a patchwork of largely lackluster state laws and regulations that leaves thousands of students vulnerable to abuse each school year," said Miller in a recent letter. "Despite federal laws limiting use of seclusion and restraint in hospitals, psychiatric facilities, community-based facilities, and even prisons, no such federal law exists to restrict this abuse in schools. Few states provide protections for all children by law, and many states have weak legal protections or no protections at all."

CONGRESSIONAL ACTION--U.S. Senator Tom Harkin introduced the "Keeping All Students Safe Act" on February 12, 2014.

Opposition to the legislation comes from the American Association of School Administrators which objects to the requirement that restraint can only be used to avoid serious bodily injury since, according to the AASA, it would be impossible for school staff to make a determination about whether the risk of injury in a crisis situation could lead to serious bodily injury. The AASA is also arguing that the data collection provisions of the act as well the demands on staff training will be both burdensome and costly for school districts.

But Sen. Tom Harkin rejects these reasons for allowing these practices to continue.

"These old myths, these old ways of treating people have got to go by the wayside," Harkin said at the Feb. 12 press conference introducing the Keeping All Students Safe Act. "You have to wonder how many young lives have been so severely damaged that they cannot be fully included members of our society."

Harkin compared the seclusion rooms he has seen in schools to a recent trip he took to Cuba.

"You know what that reminds me of, folks?" said Senator Harkin, gesturing to the photograph of a school isolation room. "You know where I was last Saturday? I was in Guantanamo, Cuba . . . We went and saw the cells where the keep the most dangerous terrorists in the world. And you know what their cells look like? Like that. And that's where they're putting our kids, in schools."

Originally published in the Autism File.


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Benjamin Orbach: Don't Judge a Millennial By Her Cover

My new favorite website is http://autism-tj.weebly.com/. It belongs to IRODA, Tajikistan's only center for autism. The main page has a gallery of 10 portraits, from a girl with pompadourish big hair who smiles defiantly to a teacher's aide gently brushing noses with a grinning boy. The website doesn't have pyrotechnics, but the photos pull you in, and the organization's mission and programs are clear.

Still, what's the big deal?

This website was put together by Britta Nippert and Okxana Cordova-Hoyos, undergraduate students from New Jersey. They volunteered this summer at IRODA, creating this website, researching grant opportunities and playing with the children.

IRODA was founded by a group of parents who seek an alternative to institutionalization for their children. While IRODA relies on foreign funding support, they did not have a website in Tajik or Russian, much less English until a few weeks ago. By creating a basic yet attractive site, Britta and Okxana filled a gap and met a priority identified by IRODA's leadership. At the same time, for a community in Dushanbe that has little or no direct interaction with America, Britta and Okxana represented an America that reached beyond its borders in a compassionate and useful way.

As Lola Nassriddinov, IRODA's Director, remarked, "It is amazing that people from so far could come and integrate themselves with the children. They have such a good connection with the kids, acting like they had known them for years since their first day. All of the staff asks, 'Where can we find volunteers like this is Tajikistan?'"

Britta and Okxana are indeed special, but their volunteer service is not unique. Over the last couple of years, more than 40 undergraduate and graduate students have volunteered with us through our summer service internship program in four different countries.

Millenials get a bad rap. Studies show that they don't vote in high enough numbers compared to other age groups and that they don't volunteer as much as my fellow Generation Xers. I can't account for national trends, but on an anecdotal level, it has been fascinating to watch Millennials become some of America's best 'unofficial ambassadors.'

Three years ago, when we launched this initiative, my idea was (and remains) to increase the number of Americans who volunteer for a week to a year in the Muslim World and then share that experience through blog posts and community presentations. To date, the vast majority of our unofficial ambassadors have been 20-something women.

I've found two remarkable things about working with the millennial subset. First, 20-somethings bring so much passion to this effort and so little baggage. Most of these young people threw themselves into their volunteer mission out of a commitment to a cause bigger than themselves and a desire to help others who they'd never met before. As Britta explained, "Traveling simply as a tourist is unsatisfying to me....It is important that I learn exactly where I am in the world and to try and expand my compassion as much and as far as possible."

I marvel at how anything seems possible, with daily actions reflecting a willingness to confront failure. Neither Britta nor Okxana designed a website before launching IRODA's site. Phoebe Shelor of Cedar Park, Texas spent the summer teaching French in a one-room school house to children in a shepherding village in Morocco's mid-Atlas mountains. She studies French but had never taught it before. Similarly, Liselot Koenen of Chicago took science classes at Georgetown, but she had never taught chemistry. Liselot was supposed to teach English in a Zanzibari public school this summer, but taught chemistry after that teacher took maternity leave and her classes were left without a substitute.

They and others faced tasks beyond their comfort zone and figured it out. Alessandra Testa, also of New Jersey, taught English to young people in Morocco, reflected, "During my time here, I have been in more challenging and uncomfortable situations than I can count, but each one has taught me invaluable lessons about embracing change, accepting and adjusting to the unexpected."

Which brings me to the second point I've noticed while working with millennial volunteers: a desire to build professional experience and skills. Millenials hear repeatedly that the job market is terrible and that they have to differentiate themselves with real skills. Almost all of our unofficial ambassadors self-funded their experiences -- through savings and grants -- in part to build skills and experience.

Sarah Wall of Indiana set-up a monitoring and evaluation plan for a women's health organization in Indonesia. She explained the investment in herself, "My goal after finishing my master's program is to work in international development. Whether I work abroad or in a domestic position, the experience of learning first-hand what it is like to work in an NGO in the developing world -- the resources, limitations, work culture and pressures they face from both the government and society -- will be invaluable to me in the future."

Just 22 percent of Millenials volunteered last year. That's disappointing, but those numbers don't reflect the depth, impact and scope of how some of these young women and men are investing their time and money. There are websites in Tajikistan and global citizens in the small towns of New Jersey, Indiana and Texas who are reasons for optimism.


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Kristi Rieger Campbell: The Land of Empathy and Wonder

I'd like to live in The Land of Empathy and Wonder.

I'd like to live in a land where my son Tucker is one of many and the many have a variety of differences. None of those differences are considered afflictions, disabilities, special needs or delays. In this land, everybody's quirks and uniquenesses and differences are celebrated. They're not noticed because they are not important.

The only thing important in my imagined land is a person's heart. And his empathy. And his ability to find wonder.

To find joy in blowing bubbles on a breezy spring day rather than worrying about a job, a disease, a bill, a blog...

A place where every resident is able to abandon her phone to follow her son on his quest to best imitate a butterfly. To experience wonder. To celebrate it.

I'd like for you to accept my son.


I'd like to live in a land where skin color matters as much as the color of a person's underpants. Where couples that fall in love ARE a family without having to lobby for the right to be legally recognized as one by a government. Where a person's actions toward others is noticed and the cost of her handbag is not.

I'd like to live in a world where I can take my son to the playground and the fact that he's playing amazingly well with an unknown younger friend is what's noticed rather than the fact that his new friend is miles above him in language. In knowing how to play. In, well, everything.

I'd like for all of us, including yours truly, to simply "aaaahhh" at the joy on two boy's faces bonding over finding an abandoned ball.

To be.

To be. Ahh... can you imagine?

I can.

I see that joy and wonder in my little boy's face every single day. He sees magic.

I want to get back to seeing the magic.

This land of mine would allow me to see my son's recent school photo and not analyze it. It would allow me to remain in the belly-laugh moment my husband and I shared when we first saw it and thought, "Oh my... he looks so mischievous! So grown up! And so funny!"

Instead, I returned to it later and wondered whether his photo looks like autism. Whether Tucker's beautiful eyes all squinted up as if he's hiding something meant instead that he was at his "I need a break" point. That he may have been scared or intimidated or overwhelmed and didn't have the words to say so.

I'd like to live in the land where empathy and wonder rule.

Where our differences don't.

The best part? This land exists.

It exists right now in some of you, if only ideally. We, my friends, have the power to transform our worlds, our ideal places and our homes into The Land of Empathy and Wonder.

It starts with you. With me. With our children. With how we choose to spend the next five minutes. With being able, tomorrow, when we're stressed out and overwhelmed and busy and annoyed, to be able to take a moment to NOT look away. To try and make eye contact with the boy who makes you uncomfortable. To say hi. To give his tired mom a smile.

To give her a smile that conveys the message that we're all in this together.

And that there is empathy and wonder. Everywhere.


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