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

Dear Sarah,

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

Jack and his cat

Jack and his cat

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.

Jack and his brother

Jack and his brother

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

April is Autism Awareness Month

Child holding face signApril is national Autism Awareness Month and The Arc and The Autism NOW National Autism Resource & Information Center are working to empower people with autism spectrum disorders (ASD) with the information and resources they need to live their lives to the fullest potential. We are also working to help others become more accepting of people with ASDs.

With the CDC declaring that 1 in 68 children may be impacted by autism spectrum disorders, it’s a fair bet that each one of us knows someone with autism or someone who has a family member or friend with autism. That’s why it’s important to dispel all of the myths and misinformation to understand and accept what having an ASD really means. And that’s why The Autism NOW Center exists, to weed through the volumes of information out there and provide high-quality, vetted resources and information to people with autism and other developmental disabilities, their family, friends, colleagues, teachers, employers and others.

To promote awareness and acceptance, we invite you to view and share a new video about Autism NOW and learn more. Also, we encourage you to join in the conversation! Throughout April, we will publish the personal stories and perspectives of people with autism on the  Autism NOW blog  to generate discussion about autism awareness and acceptance. We invite your comments here and on our social media channels using the hashtag #AutismAware.

The Arc Reacts to Newest Autism Prevalence Data Showing 30% Increase in Two Years

Washington, DC – Today, The Centers for Disease Control and Prevention (CDC) released new data showing the prevalence of Autism Spectrum Disorder (ASD) continues to rise.  The new rate of 1 in 68 reflects a 30% increase from two years ago when the CDC released data that 1 in 88 children has autism.

“The numbers are staggering – in 2008, the CDC reported 1 in 125 children had autism and related disorders.  Today’s data showing nearly double the prevalence since then emphasizes the immediate need for better services and supports for people with autism and their families.   Autism is clearly part of the human condition and people with autism live in all of our communities.  While we have made progress in recent years to raise awareness and improve services and supports for individuals with autism, it’s simply not enough.

“From protecting the Medicaid program – the single largest funding source of services and support for people with autism and their families – to reauthorizing the Combating Autism Act before it expires in September, we have a lot work ahead of us on Capitol Hill to ensure that people with ASD are fully included in society and that ASD prevention, surveillance, public education, and professional training continue apace.  And as a grassroots organization with nearly 700 chapters across the country, The Arc will continue to lead the way and work with people with autism to support their full inclusion and participation in the community throughout their lifetimes,” said Peter V. Berns, CEO of The Arc.

ASDs are a group of developmental disabilities that are often diagnosed in early childhood and can cause significant social, communication, and behavioral challenges over a lifetime.  The Arc is the largest provider organization for people with autism in the United States. Chapters of The Arc provide services and supports for people with autism, their families, and service providers.

The Arc runs Autism NOW: The National Autism Resource and Information Center, a federally funded resource for people with ASDs and their families.  The online center aims to help people separate fact from fiction when it comes to autism.  In addition, Autism NOW provides trainings and information and referral services.

The Arc is also running a national airport rehearsal program for people with autism, other developmental disabilities, and their families called Wings for Autism.  Based on a program launched by one of our local chapters in Massachusetts responding to the needs of a family looking to take a trip to a theme park, the program is a full dress rehearsal for air travel, including the process of ticketing, security clearance, boarding, and at some locations, taxiing on the runway.

And earlier this year, The Arc announced a new partnership with Specialisterne, a Danish nonprofit, to replicate its successful model for recruiting, assessing, training, placing and supporting people with autism in jobs in the tech industry in the United States.  Specialisterne creates meaningful employment for people with autism by building relationships with technology companies that need employees whose skill sets match the characteristics of many people on the autism spectrum.  Chapters of The Arc are working with Specialisterne to serve tech companies, such as SAP and CAI, which are eager to employ people with autism as software testers, programmers, data quality assurance specialists and other technology positions.

Healthy Eating Tips to Help Fight Obesity

Obesity is one of the largest problems facing adults living in the United States. Statistics show that one-third of Americans is considered obese.  Thirty-six percent of individuals with disabilities are considered obese as compared to 23% of individuals without disabilities. The best way to fight obesity is by eating healthy and staying active. Unfortunately, for individuals with disabilities there can be physical limitations as to what they can do in regards to physical activity.  While most activities can be modified to fit the person’s individual fitness needs, this still puts a greater importance on the necessity to eat healthier. Poor nutrition, which can lead to obesity, can also be a catalyst for many other health related issues too like high blood pressure, diabetes, heart disease, and fatigue.

There are many reasons as to why individuals with disabilities may not eat as healthy as they should – lack of nutritional awareness, limited income, trouble cooking themselves, difficulty chewing or swallowing specific foods, or sensitivity to certain tastes or foods. If a caregiver cooks meals for them, the individual may have limited input as to what types of foods are prepared. Ensuring that the individual has a say in their meal choices and making a few key changes can help tremendously when it comes to healthy eating. A simple change such as drinking more water instead of sugary beverages throughout the day will help keep you hydrated, feeling fuller with no calories, and generally doesn’t cost a thing.

Teaching individuals with disabilities how to save money while at the grocery store will help them pocket some extra cash for other activities or allow them to buy more food.  Simple tips such as, using coupons, buying store brand or generic brand versus name brand items, looking for daily specials, and paying attention to expiration dates will help stretch those food dollars.  Fresh fruits that are in season usually won’t go bad as quickly and are more cost efficient. Instead of buying yellow bananas that are already ripe (and can go bad quickly) try buying them when they are a little green so that they will last longer. Once bananas ripen, freeze them to make banana bread!  Individuals with disabilities who also have mobility issues might have trouble cutting up foods such as, vegetables and fruits. Specially adapted utensils can make this process easier and safer. You can also try purchasing frozen or canned fruits and veggies instead (choose fruit that is canned in 100% fruit juice and vegetables that have “no salt of sodium added” for best options). They will last longer, are already cut up, and are usually a little cheaper.  Nutritionists have also shown that there is little difference between the nutrients you receive from fresh and frozen veggies, so go ahead and grab the frozen ones!  Large supermarkets and buying in bulk will usually have cheaper prices as opposed to local or specialty shops too.

Planning out weekly meals will also help to know what foods to buy in the grocery store to ensure that individuals are eating healthy every day. When working with the individual with a disability to plan out meals for the week make sure to keep it simple. Recipes that are too difficult or take too long to prepare can be discouraging and may make them not enjoy cooking and avoid it. Recipes should have no more than 5 or 6 ingredients. A good rule of thumb when helping individuals make their meal choices is to make sure that 3 of the 5 food groups are present in each plate. This will help to allow for the individual to choose foods they like, but still keep a balanced plate. Making a larger recipe that can be frozen and eaten again later in the week is also a good idea to have for nights when there is little time to cook instead of running out to a fast food restaurant. Cookbooks for individuals with disabilities, like Cooking By Color, help to clearly illustrate what ingredients are needed and how to prepare simple, yet healthy, meals in smaller portions. To learn more about Cooking By Color’s concept and planning for successful eating, check out author Joan Guthrie Medlen’s, HealthMeet webinar.

Many resources are out there to help teach the importance of keeping a balanced diet. Choosemyplate.gov and the CDC’s new Healthy Weight Issue Briefs provide information on obesity and maintaining a healthier diet. The Arc’s HealthMeet page contains resources and webinars regarding more healthy eating tips and links for further information.

The Arc Launches New Diversity Initiative

Washington, DC – The Arc is pleased to announce it has been awarded a grant for $100,000 from the MetLife Foundation to make the programs, services and supports offered by chapters of The Arc nationwide more accessible to culturally diverse populations with intellectual and developmental disabilities (I/DD) and their family members, and to ensure that the chapters are addressing the needs of the different cultures in their communities.  To achieve these goals, The Arc will conduct a comprehensive assessment of the cultural competence within the network of 700 chapters.

This assessment will include substantial input from The Arc’s chapters as well as from current and potential stakeholders in ethnically and culturally diverse communities across the country.   In the course of the assessment, The Arc will collect information about best practices in serving a culturally diverse population drawn from the disability field, as well as health care, social services and other non-profit and for-profit industry segments.  As a result of the assessment, The Arc will develop a report that identifies the challenges developmental disability providers face when serving people with I/DD who come from diverse backgrounds and recommends solutions. Based on the report, The Arc will develop an action plan defining specific actions that can be taken by chapters of The Arc to achieve greater cultural competence.

“Organizations like the MetLife Foundation enable us to continue our work to promote inclusion and civil rights for individuals with intellectual and developmental disabilities, and with their generous support we will be able to better serve communities across the country. The Arc has a network of 700 chapters and those chapters represent a spectrum of cultural diversity. We recognize that for The Arc to be successful, we must find ways to support our organization’s growth to include more diverse populations,” said Peter Berns, CEO of The Arc.

The Arc to Launch New National Resource Center for Future Planning

The Arc is pleased to announce it has been awarded $800,000 over two years by the May and Stanley Smith Charitable Trust to develop a National Center on Future Planning for families and individuals with intellectual and developmental disabilities (I/DD).

The goal of this project is to support the estimated 600,000-700,000 families in the United States where an adult with I/DD is living with aging family members and there is no plan for the individual’s future.  The Center will empower aging caregivers to plan for the future of their adult son or daughter with I/DD, providing families with information, resources, and practical assistance in person-centered planning; guardianship and supported decision-making; housing and residential options and supports; special needs trust and representative payee services; financial planning; and personal care and independent living supports.

“There is a silent crisis facing our country that desperately needs a solution – what happens when there is no plan for how an individual with an intellectual or developmental disability will live life to the fullest when the loved one they live with is no longer with them?  In the last twenty years, people with disabilities have made great strides to live independently, be a part of their community, and experience all they want in life.  But too many people are facing the next chapter in their lives without a plan, and The Arc is seeking to provide help to families and people with disabilities looking for that roadmap,” said Peter Berns, CEO of The Arc.

The Arc’s new Center for Future Planning will have a robust online presence, with an interactive and user-friendly website geared toward older learners, with extensive, vetted content.  The website will include a database of sources for local-and state-based information, people, and related organizations, and a searchable provider database.  The Arc will also operate a telephone and online information and referral system, connecting people to help in their communities.

Chapters of The Arc will play a critical role in this Center, as they will be able to access best practice protocols when providing future planning resources in their local communities.  The Center will also feature a National Pooled Special Needs Trust, develop protocols and business infrastructure to provide private trust companies with outsource assistance in servicing existing and future beneficiaries under individual special needs trusts, create training and networking opportunities for families and professionals in the field, and establish a volunteer action network.  This new network will pair self-advocates with volunteers without disabilities to visit people with I/DD in community settings and monitor their satisfaction and quality of life.

“This ambitious project aims to support people with intellectual and developmental disabilities and their families as they face a big transition in their lives.  Families and people with disabilities are seeking out these resources, and just as The Arc has done for last sixty years of this movement, we are innovating to be a leading resource into the future,” said Berns.

The Arc Supports The Stop Child Abuse in Residential Programs for Teens Act

The Arc released the following statement in response to the introduction of S.2054, the Stop Child Abuse in Residential Programs for Teens Act, introduced by Senator Chris Murphy (D-CT) and co-sponsored by Senator Tom Harkin (D-IA) Chairman of the Senate Health, Education, Labor, and Pensions (HELP) Committee.

“The rights of students, many who have a disability, in boot camps and residential programs are too often compromised due to the lack of oversight of these facilities. We applaud Senator Murphy and Senator Harkin for standing up for these teens who have suffered abuse and for their parents who in many cases were not aware that their children were being abused. Ensuring the safety of our children in residential programs should be a top priority. We urge Senators to support this important legislation,” said Peter Berns, CEO of The Arc.

The Stop Child Abuse in Residential Programs for Teens Act will help end the abuse of children in boot camps and residential programs by setting minimum standards including prohibiting the withholding of essential food, water, clothing, shelter, or healthcare; prohibiting physical or mental abuse; improving the collection of data; requiring reporting of serious injuries and deaths to the Protection and Advocacy agency in that state or territory; and requiring transparency of these programs so parents can view the records of residential facilities and make the best decisions for their children.

Tobacco Cessation Leads to a Healthier Heart

The heart is one of the hardest working muscles in the body, as well as the most important, which is why it’s essential to take good care of it.  Cardiovascular disease is the number one cause of death of both women and men in the United States and is the leading cause of disability.

While there are many factors that increase your risk of having cardiovascular disease that you cannot change about yourself – genetics, sex, race, ethnicity, family history, etc. – many deaths from cardiovascular diseases (heart attacks, strokes, and heart disease) can be prevented through healthier habits. Making a few key changes can prolong your life by many years!  One large issue that can be easily controlled to help reduce your risk is abstaining from tobacco use. According to the CDC 25% of adults with ID smoke as opposed to 17% for adults without disabilities.

Smoking is the leading cause of preventable deaths in the US.  Smoking tobacco allows for a build-up of plaque and other deposits to gather in the arteries (and lungs), thus blocking part of the artery and slowing the flow of blood to the heart.  The heart then has to work harder to push blood through the narrower clogged arteries to the rest of body, which leads to high blood pressure.  When the plaque builds up to become a full blockage in an artery is when a heart attack, stroke, or blood clot elsewhere in the body occurs and can be deadly.

Quitting smoking can be difficult for the general population; however when a person with an intellectual disability starts smoking tobacco quitting can be especially difficult.  There are fewer programs and resources tailored for individuals with ID that explain the full risks, so they may not understand the importance behind quitting and the range of effects it can have on their bodies.  Individuals with ID can also have a harder time controlling nicotine urges.  This can cause outbreaks of bad behaviors towards the caregiver, family member, etc. who is trying to help them to quit.  Sometimes cigarettes have even been used as a reward with an individual with ID to help reinforce another good behavior, which can lead to more confusion about why smoking is harmful.

Although resources are scarce, there are good tobacco cessation programs out there to help individuals with ID to quit.  I Can Quit was developed by Monish University in Australia to help facilitate tobacco cessation sessions with the use of their guidebook and the Michigan Department of Community Health has also worked to create tobacco cessation resources for individuals with disabilities.  Learn more about their resources and the effects of tobacco through The Arc’s HealthMeet webinar on tobacco cessation.

Although quitting can be difficult for individuals with ID, starting to smoke hopefully won’t even be considered if the correct information is communicated early on. However, it’s never too late to quit – your heart, arteries and lungs will begin to repair themselves almost immediately after you stop. It only takes about 20 minutes after your last cigarette for your heart rate to start to decrease back to a normal level.  Teaching individuals these facts and leading by example will give them the knowledge to know the harmful effects that smoking can have before they begin – which is invaluable to their heart and overall health.

The Arc Urges U.S. Supreme Court to Protect Constitutional Rights of People with Intellectual Disability on Death Row

Today, the U.S. Supreme Court heard arguments in Hall v. Florida, a death penalty case concerning the definition of “mental retardation” (or intellectual disability (ID) as it is now called) 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.

“Florida is clearly violating the Supreme Court’s Atkins v. Virginia ruling and the Court must reaffirm its commitment to the rights of people with intellectual disabilities in our criminal justice system. Freddie Lee Hall has an intellectual disability, and Florida’s effort to flaunt the professional standards on IQ testing to end someone’s life needs to be stopped by the highest court in our country. It is immoral and unjust,” said Peter Berns, CEO of The Arc.

The Hall case centers 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 has been 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 have 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 lower court records also include findings of severe and violent abuse of Hall during his childhood.

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 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, whose disability often goes unrecognized. Providing accurate, effective and consistent training for criminal justice professionals is critical.

Let’s Go Out on March 29

#DDAwareThe Arc Plans for a National Day Out Event for Developmental Disabilities Awareness Month

March is national Developmental Disabilities Awareness Month and The Arc invites you to join us on March 29 in a grassroots initiative to help raise awareness about people with intellectual and developmental disabilities (I/DD).

What should you do? If you are a person with I/DD or know someone who has I/DD, simply make plans to go out somewhere in public on Saturday, March 29. That’s all. Just plan a day out and about enjoying the things you like to do. And, in the process help raise awareness and generate some conversation about people with I/DD during Developmental Disabilities Awareness Month. This one-day movement will serve to harness our collective power to gain allies, foster understanding, dispel myths and encourage a greater understanding among people without a disability.

Year round, The Arc works to promote and protect the rights of people with I/DD to live, learn, work and play as valued and contributing members of their communities. We fight for legislation to remove barriers to full participation and inclusion and have been successful on many fronts. But sometimes the barrier has nothing to do with the width of a doorway or an employer’s hiring practices. Sometimes the barrier is as subtle as a nervous glance from an uninformed person in line with you at the market.

So, this March 29, let’s all go out and start breaking down those social barriers once and for all. As an individual with I/DD, this is your chance to personally help raise awareness just by being yourself and participating in the things you enjoy alongside others in your community without disabilities. Make plans now to hit the movies, the park, your local shopping center or restaurant and maybe spark some conversation in the process. If you are a friend or family member of a person with I/DD, make plans now to enjoy a fun activity together in public and take the opportunity to show others that we’re all not so different after all.

Visit The Arc’s website at www.thearc.org/lets-go-out and find out more about this campaign and things you can do join in. And spread the word using the hashtag #DDAware on social media during the month of March. Follow us online at www.facebook.com/thearcus or www.twitter.com/thearcus and be sure to show us what you end up doing on March 29 by sharing your photos using the hashtag #DDAware.

Want to do more? You can help support The Arc’s national organization through a tax-deductible donation. Or you can find your local chapter at www.thearc.org/findachapter.