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The Arc Responds to U.S. Supreme Court Decision in Hall v. Florida

/in , /by The Arc

The Arc released the following statement following news that the U.S. Supreme Court ruled in favor of Freddie Lee Hall in the case Hall v. Florida, a death penalty case concerning the definition of intellectual disability (ID) that Florida uses in deciding whether an individual with that disability is protected by the Court’s decision in Atkins v. Virginia. In 2002, the Supreme Court ruled in the Atkins v. Virginia case that executing inmates with ID is unconstitutional as it violates the Eighth Amendment ban on cruel and unusual punishment.

The Supreme Court ruled 5-4 in favor of Hall. The justices stated that Florida cannot rely solely on an IQ score to determine whether an inmate has ID. Justice Anthony Kennedy stated that IQ tests have a margin of error and those inmates whose scores fall within the margin must be allowed to present other evidence. Additionally, Justice Kennedy modified the 2002 Atkins decision by adopting the term “intellectually disabled” and abandoning “mentally retarded,” which has previously been used by the court in its opinions.

“Today the Supreme Court reaffirmed its commitment to ensuring justice for individuals with intellectual disability. The clarification of the landmark ruling in Atkins v. Virginia will serve as a tool to ensure justice for individuals with intellectual disability who face the death penalty in states across the country. Disability advocates and legal experts across the country will look back to this decision for years to come.

“The Arc is committed to fighting for the rights of people with intellectual and developmental disabilities, and we will continue our legal advocacy work to make sure that the Supreme Court ruling on this issue is followed in jurisdictions across the country,” said Peter Berns, CEO of The Arc.

The Hall case centered on whether the state may establish a hardline ceiling on IQ, refusing to consider whether anyone with an obtained IQ above that level may actually have ID, despite the fact that use of such a ceiling undermines the purpose of IQ testing and the professional judgment of the diagnostician, among other things. In Hall, the Court was asked to address Florida’s decision to draw the line at an IQ of 70. Based on the professional expertise of two leading professional organizations in the field, the American Association on Intellectual and Developmental Disabilities (AAIDD) and the American Psychiatric Association (APA), it is universally accepted that IQ test scores must be interpreted by taking into account the standard error of measurement that is inherent in IQ tests. That means that any IQ test score is best understood as a range, rather than a single score: a score of 70, for example, is best understood as indicating that the person’s “true” IQ score is most likely between 65 and 75.

In addition to IQ testing, numerous expert evaluations documented Freddie Lee Hall’s disability. Before the Supreme Court’s decision in Atkins, a Florida trial court found that Hall had ID “all of his life.” His family recognized his disability in early childhood and teachers repeatedly noted his intellectual disability.

The Arc has participated in a number of cases on this issue before the Supreme Court including Atkins v. Virginia. The Arc’s amicus (friend-of-the-court) brief was cited by the Justices in support of its ruling that the Constitution protects all defendants with ID. On December 23, 2013, The Arc submitted an amicus brief for the Hall v. Florida case.

Through a two-year grant for $400,000 from the U.S. Department of Justice, Bureau of Justice Assistance (BJA), The Arc established the National Center on Criminal Justice and Disability (NCCJD) which is addressing, among other critical issues, people with ID on death row and the importance of using an accurate definition for ID within courtrooms across America. NCCJD is creating a national clearinghouse for research, information, evaluation, training and technical assistance for justice and disability professionals and other advocates that will build their capacity to better identify and meet the needs of people with intellectual and developmental disabilities (IDD), whose disability often goes unrecognized. Providing accurate, effective and consistent training for criminal justice professionals is critical to ensuring the safety of people with disabilities.

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“Come Pass a Good Time With The Arc, Mon’ Amie”

/in /by The Arc

2014 Convention ArtworkYou’re invited to enjoy the classic Southern city of New Orleans with The Arc as we network, learn and lead the movement for people with intellectual and developmental disabilities into the future!

The Arc’s annual National Convention is set for September 30 – October 2 in New Orleans, LA with more than 600 people who share your passion for disability issues. Absorb the energy of committed volunteer leaders, chapter professionals, family members and advocates. And keep your skills fresh by learning from the best in the field and sharing experiences with colleagues from across the country. Add your voice to those who are shaping the future of The Arc. Then take that energy and enthusiasm back to your community and lead the way to change.

Self-Advocates working togetherVisit our newly redesigned Convention website to find a little something for everyone:

  • For professionals:  Sessions dedicated to your professional and volunteer leadership development. New ideas, inspiration and networking opportunities, plus National Conference of Executives (NCE) training and activities!
  • For the grassroots: Sessions dedicated to advocacy and strengthening The Arc’s grassroots network, plus the hottest topics in the IDD movement.
  • For people with IDD: A symposium planned by and for self-advocates plus educational sessions with opportunities to learn, grow and connect with each other.
  • For everyone: Fun events and networking opportunities, a celebration with our local host, The Arc of Louisiana, plus shopping at microbusiness enterprises run by people with IDD.

Visit convention.thearc.org to register now to take advantage of early bird discounts, Chapter and Family Passes, and special room rates at the Marriott in New Orleans, LA.

Special Thanks to Our Sponsors: Comcast NBCUniversal, MetLife, Special Needs Alliance, DirectCourse, Hammer Travel, Mercer, Mutual of America, CARF International, Apostrophe Magazine, Wellpoint, Relias Learning and Insurance Benefits & Advisors.

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The Arc Applauds Stay of Execution of Robert Campbell, Vows to Continue Legal Advocacy Efforts

/in , /by The Arc

Washington, DC – Today, the state of Texas was scheduled to execute Robert Campbell, a man who has an intellectual disability (ID), which should have ruled out the death penalty per a 2002 Supreme Court ruling, Atkins v. Virginia. But this evening, a federal appeals court halted his execution, mere hours before he was scheduled to receive a lethal injection. The U.S. Court of Appeals for the 5th Circuit delayed his execution to allow more time to pursue his legal team’s argument that he is not eligible for the death penalty due to his ID.

“We are grateful that the 5th U.S. Circuit Court of Appeals upheld the Supreme Court’s ruling, saving Robert Campbell’s life. While we can appreciate justice being served, we were far too close to witnessing a grave miscarriage of justice. There are still many questions surrounding this trial, and we hope to hear answers as to why evidence regarding Mr. Campbell’s IQ was withheld until very recently. In a life or death situation, it is disturbing that all the facts were not being presented.

“As a family-based organization, we have great sympathy for the family and friends of the victim. However, in the case of a defendant with intellectual disability, the death penalty is not an acceptable or fair sentence. The Arc is committed to fighting for the rights of people with intellectual and developmental disabilities, and we will continue our legal advocacy work to make sure that the U.S. Supreme Court ruling on this issue is followed in jurisdictions across the country,” said Peter Berns, CEO of The Arc.

Through a two-year grant for $400,000 from the U.S. Department of Justice, Bureau of Justice Assistance (BJA), The Arc is developing the National Center on Criminal Justice and Disability. This project is creating a national clearinghouse for research, information, evaluation, training and technical assistance for justice and disability professionals and other advocates that will build their capacity to better identify and meet the needs of people with intellectual and developmental disabilities (IDD), whose disability often goes unrecognized. Providing accurate, effective and consistent training for criminal justice professionals is critical.

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President Obama Re-Appoints The Arc’s CEO Peter Berns to the President’s Committee for People With Intellectual Disabilities

/in /by The Arc

Washington, DC – Last week, President Barack Obama announced appointments to the President’s Committee for People with Intellectual Disabilities, which included The Arc’s CEO Peter Berns. This expert group will provide advice and assistance to President Obama and the Secretary of Health and Human Services on a broad range of topics that impact people with intellectual and developmental disabilities (IDD) and their families.

“I’m honored to continue my role on this panel advising the Obama Administration on matters related to the inclusion of people with IDD in their communities. We are facing enormous challenges right now with education, employment, community living and basic income supports for individuals with disabilities; it is clear we need to increase our efforts. There has been great progress since this committee was first convened in 1961, but we still have much work to do before we have a truly inclusive society. It is a critical time for the disability community, and I look forward to working with my colleagues to find real results for individuals with disabilities,” said Berns.

The President’s Committee for People with Intellectual Disabilities has a rich history, dating back to October 1961, when President John F. Kennedy appointed the first panel to advise him on a broad range of topics relating to people with IDD. This was a turning point for the IDD community, as President Kennedy shined a spotlight on the deplorable living conditions in institutions and limited opportunities for people with IDD across the country. The panel produced a report with more than 100 recommendations for research into the causes and prevention of IDD and for expanding opportunities for education, employment and community living and participation. President Kennedy pushed and signed into law major pieces of legislation that established the foundation for current civil rights protections and programs and services for people with IDD.

A nationally recognized nonprofit sector leader and public interest lawyer, Berns joined The Arc in 2008. Previously, he was Executive Director of the Maryland Association of Nonprofit Organizations from 1992 to 2008. He was CEO of the Standards for Excellence Institute from 2004 to 2008. Earlier in his career, he held positions in the Maryland Attorney General’s Office, including Assistant Attorney General and Deputy Chief of Consumer Protection. Mr. Berns was first appointed to the President’s Committee for People with Intellectual Disabilities in 2011. He has been named to The Nonprofit Times’ Power and Influence Top 50 list five times over the past decade. Mr. Berns received a B.A. from the University of Pennsylvania, a J.D. from Harvard Law School, and an L.L.M. from Georgetown University Law Center.

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The Arc Responds to the Scheduled Execution of Robert Campbell

/in , /by The Arc

Washington, DC – The Arc released the following statement about the scheduled execution of Robert Campbell, an individual with intellectual disability (ID). Campbell is scheduled to be executed tomorrow (Tuesday, May 13) at 6 pm in Texas, despite evidence showing he has ID. It has been reported that the state of Texas and the Texas Department of Criminal Justice withheld two prior IQ tests within the range for ID, showing an IQ of 68 from a test during elementary school, and 71 from his prison records. In 2002, the Supreme Court ruled in the Atkins v. Virginia case that executing inmates with ID is unconstitutional because it violates the Eighth Amendment’s ban on cruel and unusual punishment.

“We are extremely disappointed that the Texas Court of Criminal Appeals denied Robert Campbell’s appeal despite clear evidence showing that he has intellectual disability. To ignore experts and cross the line drawn by a more than decade-old Supreme Court ruling shakes the foundation of our legal system for people with intellectual disabilities. It is unconscionable that key evidence about Mr. Campbell’s IQ was withheld in this life or death situation. The Arc asks the Texas Board of Pardons and Paroles to take up this case immediately to ensure that Mr. Campbell’s disability is taken into account and justice can truly be served.

“The Arc is committed to fighting for the rights of people with intellectual and developmental disabilities, and will continue our legal advocacy work to make sure the U.S. Supreme Court ruling on this issue is abided by in jurisdictions across the country,” said Peter V. Berns, CEO of The Arc.

Through a two-year grant for $400,000 from the U.S. Department of Justice, Bureau of Justice Assistance (BJA), The Arc is developing the National Center on Criminal Justice and Disability. This project is creating a national clearinghouse for research, information, evaluation, training and technical assistance for justice and disability professionals and other advocates that will build their capacity to better identify and meet the needs of people with intellectual and developmental disabilities (IDD), whose disability often goes unrecognized. Providing accurate, effective and consistent training for criminal justice professionals is critical.

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Extraordinary Gifts, Unique Challenges

/in /by Guest Blogger

May is Williams Syndrome Awareness Month. Below is a guest post from Mike McFall of the Williams Syndrome Association with more information on this rare disorder and the association serving them.

Woman playing pianoWilliams syndrome (WS) is a rare genetic disorder caused by the deletion of 28 genes on one copy of an individual’s chromosome #7. Research is ongoing to determine the function of the genes in the deletion, and utilize that knowledge to help in the development of treatments for the various aspects of WS, but progress is slow. Eventually, it is hoped that research on the WS deletion will lead to treatments to help, not only those with WS, but others with Autism, diabetes, high blood pressure and anxiety disorders.

Williams syndrome affects 20,000 to 30,000 people in the United States. Families of affected individuals encounter major struggles. Individuals born with WS, share many common facial features as well as a constellation of medical, neurological and behavioral characteristics. Medical characteristics must be followed closely by physicians to prevent serious problems. Neurological and behavioral characteristics require therapeutic interventions and special educational strategies to provide the individual with the best chance for a happy and productive life. Most individuals with Williams syndrome have mild to severe cardiovascular disorders, often requiring surgery, and many suffer from kidney, bladder and gastrointestinal difficulties as well. Children with Williams syndrome can experience hyper – sensitive hearing, feeding problems as infants, developmental delays, poor motor skills, and mild to severe learning disabilities. As they grow, individuals with WS struggle with things like spatial relations, numbers and abstract reasoning, which can make daily tasks a challenge. The majority of adults with WS need supportive housing to live to their fullest potential, and few are able to earn a large enough salary to be self-sustaining.

Added to the challenges, though, are the extraordinary gifts of Williams syndrome. Unlike many disorders that can make connecting with your child difficult, individuals with WS tend to be social, friendly and endearing. Parents often say that the joy and perspective a child with WS brings into their lives had been unimaginable, and that their special personalities and perseverance help make dreams come true. Individuals with WS often know many more people in their communities than their parents. Adults with WS contribute to their communities as both paid employees and volunteers, working in restaurants, at senior centers and assisted living facilities, in libraries or as store greeters or veterinary aides. No matter what they are doing, individuals with WS make a special impact, and have a unique ability to quite naturally brighten the days of those around them. Individuals with WS also have a very special relationship with music. For most, there is a passion for music that in itself can help enrich their lives. For some, the passion blooms into a musicality and musical skills that far exceed their abilities in other areas.

Man playing guitarThe Williams Syndrome Association (WSA), Inc. was formed in San Diego, CA in 1983 by a handful of families of children with Williams syndrome. The mission of the WSA is “to help all individuals with Williams syndrome and similar characteristics reach their full potential.” The Association accomplishes its mission by providing a wide range of services – from programs and scholarships to resources and research support. The WSA is the most comprehensive resource for families living with Williams syndrome as well as doctors, researchers and educators. Since its inception, the WSA has touched the lives of more than 5000 individuals with Williams syndrome, from all 50 States and around the world, and lists an additional 8000 professionals, relatives and friends in its database. The WSA provides life-changing enrichment opportunities such as camp programs for youth and young adults to ages 6 – 21, and an annual reunion week for “Adventure Seekers”, adults with WS ages 21 through 35. Every two years, the WSA hosts an international research symposium, and a 5 day educational conference for families, and each year more than 150 social, educational and fundraising events provide opportunities for families throughout the U.S. to gather in celebration of their special children with WS. The Association also provides scholarships for all of its own programs (camps, conferences, and conventions) as well as other specialized enrichment and postsecondary/transition programs, and there is funding available for the non-insured expenses associated with the essential medical treatments required by many individuals with Williams syndrome. Special initiatives help to bring new information and valuable resources to families. Current initiatives are helping to bring assistive technology to students with WS, and housing models and program funding options to parents of adults.

The Williams Syndrome Association is volunteer-driven. It relies on the regular assistance of more than 100 volunteers in 18 geographic regions around the country. Above all, the Association is about family – it understands that families comprise the foundation and supports that we all need to navigate the frustrations and hurtles that life puts in our path as well as celebrate the special joys that come our way. The Williams Syndrome Association works hard to create a 2nd, more specialized family for its members to rely on – sharing in the joys that our children with Williams syndrome bring to us and to those in our communities, and offering supports, advice and resources when they are needed to overcome the medical, neurological, developmental and social challenges that come with the diagnosis of Williams syndrome.

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The Arc’s Recycling Efforts: An Earth Day Inspiration

/in /by The Arc

Over the last few years The Arc’s recycling initiatives have created environments in which individuals with intellectual and developmental disabilities (IDD) who want to work have the training and support they need to provide valuable recycling services to businesses and their communities. Last year, thanks to generous funding from the Alcoa Foundation, The Arc expanded these recycling initiatives to three new chapters. Each chapter’s program supports employment and skill development for individuals with IDD and takes us closer to our goal of promoting the importance of recycling as a means for environmental sustainability in local communities. Here’s how they’re doing it:

The Arc of Knox County:

In Tennessee, The Arc of Knox County decided to leverage an existing relationship with Second Harvest Food Bank to create a new recycling program that both provides employment opportunities for individuals with IDD and helps Second Harvest recycle the large amount of plastic and cardboard materials they take in from boxes of donated food.

The satisfaction of having a job and earning a competitive wage doing work for an organization like Second Harvest can mean a lot to someone with a disability. And, for Robert Harb that joy comes from getting ready for work each day. For Robert putting on his work pants and going to his job evokes a great sense of pride. Last year, when the program began Robert showed interest in the opportunity and agreed to visit the site with his job coach. After seeing the work first hand he decided he wanted the job, but was informed that his usual sweat pants weren’t appropriate work attire. He agreed with this requirement and embraced this change in his daily routine. He was provided with several pairs of khakis and blue work pants and he now arrives each morning wearing the appropriate pants and with a great attitude. Overall, Robert has shown an increased awareness of the importance of good hygiene as well as a renewed dedication for doing his very best work. He is even saving money to expand his work wardrobe, as his career with Second Harvest continues to grow.

Ulster-Greene Arc:

In the spring of 2011, Theo left Ulster-Greene Arc’s sheltered work center to work at a neighborhood bottle and can redemption center. The job was a good fit for him and allowed him to earn a decent paycheck, but unfortunately the center closed and Theo was left jobless. Undeterred, Theo began exploring the idea of creating a bottle and can redemption center within Ulster-Greene Arc, showing tremendous initiative In January 2012, the agency proudly opened Theo’s Bottle and Can Return, and with additional funding from The Arc through its recycling initiative, the program was able to expand.

The business currently employs eight individuals with IDD at minimum wage or above and collects approximately 38,880 refundable items (aluminum, glass and plastic containers) weekly. From the time the products enter into the recycling centers, employees with IDD are involved in every aspect of the job including the sorting and packaging of materials for shipment. Ulster-Greene Arc has created an environment in which customers can be helped quickly and efficiently, while workers with disabilities can showcase their talents and contribute to their community.

The Arc Montgomery County:

The Arc Montgomery County has been involved in recycling since 2005. In that time, the chapter has trained and supported both paid and volunteer workers with IDD and have fostered inclusive work environments. The Textile Recycling & Collection Program (“TRCP”) expansion began in January 2013, utilizing various capabilities of The Arc Montgomery’s Thrift Store and document destruction business.

After several meetings with its senior executives, Asbury Methodist Village decided to launch a TRCP Multi-Day Container Collection Program for their entire community and agreed to host a permanent drop-off location for textile donations. With 823 independent living units, 122 assisted living units and 285 nursing supported units, Asbury Methodist Village, is the 12th largest Senior Living Community in the country.

Asbury Methodist Village has also asked individuals with IDD to volunteer as collection helpers which led to them expressing an interest in hiring workers with IDD to serve meals and arrange tables in their cafeteria and to assist recreational and social activities for seniors. Asbury Methodist Village is one of the Montgomery County largest employers, generating economic growth and opportunities for philanthropic involvement – and now generating opportunities for people with IDD as well.

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The Arc Responds to Offensive Use of “R-Word” on Fox News Program

/in /by The Arc

Washington, DC – This week, on Fox News’ The Sean Hannity Show, a guest named Gavin McInnes made highly offensive comments, ridiculing civil rights leader Al Sharpton “as retarded.” Host Hannity interrupted McInnes chiming in, “you’re not allowed to say that word, it is politically incorrect,” at which point McInnes described Sharpton as, “seemingly similar to someone with Down syndrome.” To make matters worse, in a later comment posted on YouTube, McInnes attempted to explain that he didn’t intend to demean people with intellectual and developmental disabilities (IDD) stating, “I was trying to say retards aren’t qualified to have their own news show.” Referring to himself as “pro-retard,” he advised the mom of a child with Down syndrome to “get over that word soon.”

“It’s Gavin McInnes who needs to ‘get over’ outdated language that perpetuates stereotypes and fuels hatred in society. The “R-word” is being banished from our lexicon because it’s hurtful to people with disabilities and their families, so why use it?

“McInnes’ assertion that people with IDD don’t understand enough to be offended by language that is used in their presence is absolutely absurd. Clearly, he has never met or talked with the many self-advocates who have led the fight to get the “R-word” out of state and federal laws, let alone the many individuals with IDD who recount stories about how they are taunted and bullied. Language does matter.

“His assertion that people with low IQ can’t host a news show ignores their abilities. Perhaps McInnes has never heard of Jason Kingsley, Chris Burke, or more recently, Lauren Potter on the hit show, Glee. People with IDD are a part of all our communities, going to school, working alongside people without disabilities, and living life to the fullest. They are in the media, starring on hit television shows and in movies, and doing more to contribute to society than those that spread hate with their words.

“While McInnes, a self-styled provocateur, may aspire to be a regular on the Fox News network – clearly he failed the audition. Hopefully, Fox News will know better than to give him a platform to spread the ignorance and disrespect he has for millions of people with disabilities and their families,” said Peter Berns, CEO of The Arc.

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HealthMeet: Top 5 Exercises for People With Intellectual and Developmental Disabilities

/in /by The Arc

Guest post by Jared Ciner, Certified Personal Trainer, Disabilities Support Counselor, Founder/Director of SPIRIT Fit & Health

As you may already know, an extremely high percentage of people in America are suffering from obesity. What you may not know is that people with developmental and other disabilities are 58% more likely to be obese than the general population, and they make up roughly 20% of our country’s citizens. As a society, it is our duty to provide the necessary resources and support that enable people with disabilities to be healthy. The purpose of this article is to begin enabling people with intellectual and developmental disabilities to take control of their lives through the practice of health-promoting exercises that are safe, effective and tailored specifically towards their needs.

As a certified personal trainer, I believe that partaking in proper exercise and physical activities empowers us as human beings, and allows us to reach our mental, emotional and physical potential. As a support counselor, I know that people with IDD often require adapted strategies in order to accomplish certain functional goals. In April of 2013, I teamed up with Sam Smith, certified personal trainer and proud young man with Asperger’s syndrome, to design and implement group health & fitness programs for teens and adults with intellectual and developmental disabilities. Below are five exercises that we encourage all people, including those with an IDD, to practice in order to maximize their strength, health and independence. Each exercise focuses in improving stability, strength and cardiovascular endurance. (Access a readable file here.)

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A Mother’s Open Letter to The Arc About Wings for Autism

/in /by The Arc

Dear Sarah,

I am writing to express my continued gratitude for the Wings For Autism event held in Anchorage, Alaska.

Our 11 year old son Jack experiences high functioning autism, which he was diagnosed with at four years of age. While Jack did fly at ages 5 months and 9 months respectively, in his memory he has never been on an airplane, which raised concerns for us, since we have scheduled air-travel this summer.

The Wings for Autism experience was far beyond any of our expectations (our family of 4 attended). The attention to detail, real life/real time airport experience of obtaining tickets, line waiting, Transportation Security Administration (TSA), airport exploring, more waiting at the gate; it was all so needed, and so appreciated. The time on the aircraft was more than we could have ever hoped for, between the taxiing and “cruising altitude” beverage/snack service, the crew going through their regular motions/speeches and the pilots coaching us through the sounds and motions of the aircraft… truly exemplary. To add to this, the generosity of all of the hands at play, from the folks getting us through the lines, to the TSA, to the airport staff, to ground crew, to the flight staff and of course the pilots, The Arc of Anchorage, Ted Stevens International Airport for handling the logistics and security of a “mock” boarding and flight on their active airstrip, not to mention all of the volunteers and hours/dollars funneled into this event is staggering and to know that this was all done for our kids, our families to have a better experience, well, it is so humbling and overwhelming to me it makes me want to cry.

Thank you.

As for our Jack, he struggled. And it couldn’t have been a better place, better environment, FOR him to struggle. It gave me a good glimpse of what I might see and might expect this summer. Jack did very well for about the first 1 1/2 hour (noon to 1:30), and then he started to lose his patience. The noises (especially from children), the waiting, the MORE waiting, it set him right to the edge. (It is worth noting that there are interventions I could have used/will use in the future, but I wanted him to have a “rougher” experience for this practice run so I could really have an accurate view of where I needed to focus for our trip this summer; also, I knew this was the time for him to have it harder, rather than the “real” time.) When we boarded the aircraft and sat down in his window seat, he began to emotionally shut down. He started to have what can best be described as a panic attack, breathing fast and clenching his hands, and said he “didn’t like this anymore” and “wanted to get off/leave”. I told him we could shut the shade on the window, which we did, and I just quietly talked him through it (I figured he would want the window, but next time maybe I’ll seat him elsewhere). I told him that the best thing we could do was to sit in the uncomfortableness and be uncomfortable, and eventually the anxiety feeling would start to come down. I reminded him that if we “ran away” from this moment it would only be much worse the next time (I personally have diagnosed Obsessive Compulsive Disorder, and this is true for me; I try and use this approach with Jack as well), and I knew he didn’t want to miss out on travel and experiencing new places like other people.

Jack eventually pulled the shade back up, and about 20 minutes into it, he calmed a bit and smiled, and said he felt better. He kept wanting reassurance over and over that we weren’t going to take off. He is terrified of motion sickness and throwing up, and he kept talking to himself about how he’d be okay, and how he probably wouldn’t throw up on the real trip this summer. He checked out the bathroom as well. While he never fully relaxed, all in all it went very well. When it was all said and done, he claimed it was “awesome” and said on a scale of 1-10, it was a 10 :).

Jack still has worries about taking off/landing, and getting sick on the plane. We will cross those hurdles as they come. Yet, this experience with Wings For Autism gave us something we normally could never obtain, which was practice in an airport and on a real aircraft. Who gets to have that?!! I don’t think I can fully punctuate how important and valuable this experience was to our family and to Jack; all I can say is thank you, and hope it is a program that can be repeated so more families can benefit like we did.

One thing that all parents keep in their proverbial back pocket, ESPECIALLY families with special needs children, is the ability to leave/exit a situation if needed. If the event is too stimulating, your child is having a meltdown, the event is too long, there is too much noise, etc., YOU CAN LEAVE. It is a safety net, and benefits not only your child, but it is also executed in consideration for the people around you. A plane is probably the ONLY environment in which you CANNOT leave. You can’t even really move away. Knowing this certainty can be figuratively paralyzing for the parents; what are you going to do if things go poorly? All you can do is the best you can, but that one ace-in-the-hole of leaving the situation is off the table. It is enough to keep some of us from wanting to knowingly put ourselves and our kids in that potential situation. That is the way it has been for us. I would be remiss if I did not admit my own anxiety about air travel this summer, but I know it is something we must rise to and experience, and I will do everything I can to support it going as smoothly as possible for both Jack and for those around us. It is a tall order. Thanks to Wings For Autism, it is now more attainable.

Special needs, and all the trimmings that come with it, can be difficult, even impossible, to understand. The good thing is, people don’t need to understand. On an empirical level, it is too much to even ask. To raise my expectations and hope for someone else to understand what our life is like, what Jack’s life is like, might be asking something that person cannot give. However, everyone is capable of giving compassion. Compassion does not have to in concert with “getting it”; compassion can stand alone. And when a parent like me or even Jack himself receives a knowing look of compassion, a gesture in kind, a gentle word or nod, an extension of patience, it is such a gift. That is the empathy that nourishes and gets us through that moment, that hour, that day, or that week. It satiates in a way that even I cannot express, and it keeps me going. It keeps Jack going. And for this, I will always remain truly grateful.

For this opportunity, we remain in your debt.

Warmest Regards,

Katherine