Yoga Benefits Everyone

Yoga pose

Yoga image via Tomas Sobek, used under a Creative Commons license

Exercising is a vital part of staying healthy. With so many different fitness fads and activities out there it’s hard to tell which ones actually produce real benefits and which ones aren’t worth your time. While yoga has been around for quite a while now its popularity has grown significantly in past years.  The general population seems to have decided that its results are worthwhile, but what kind of benefits does it have for individuals with disabilities?

Yoga is a combination of body and mind.  It focuses on not only working your physical state, but your mental state as well by incorporating calming breathing and focusing techniques that most don’t even realize they are reaping the benefits from at the time. One of the best parts of yoga is that it is so easily adaptable to all different fitness levels, so individuals of all capabilities are able to participate at the same time (including individuals that use a wheelchair).

Holding the different poses, such as downward dog, cat, tree, etc., engage many different muscles at the same time to strengthen and stretch muscles all over giving you a total body workout. These strengthening activities, which help build muscle control and stability, are great for individuals with disabilities that can make them more prone to muscle weakness. The gradual building of muscle and flexibility overtime using your own body weight aids in reducing the risk of injuries associated with other activities involving heavy weights or machines. These moves and poses rotate joints through their full range of motion helping individuals with disabilities learn to concentrate on specific body parts to improve fine and gross motor skills. It also gets blood flowing throughout the entire body to improve circulation as well. This increased knowledge of balance and control will help with mobility, reducing falls, and hand/eye coordination.   Being more aware and in tune with their bodies can help individuals feel more comfortable and confident in their own their own skin.

In addition, there are also many psychological improvements from yoga too. While yoga is an activity that is done individually going to yoga classes lets individuals be a part of a group of their peers without having the stress from other team sports where their individual performance is going to affect the teams’ outcome. Learning and mastering the different poses leads to a feeling of accomplishment and pride, thus increasing self-esteem levels. Yoga has also been shown to increase focus, concentration and decrease feelings of anxiety. The calming effects that yoga introduces on the body can even be used outside of the yoga classroom in everyday life to reduce negative behaviors. For example, the breathing techniques can be brought into play when individuals start getting angry, aggressive, or stressed to bring them back to a relaxed state.

Another great thing about yoga is that it doesn’t have to be done in a class. Yoga requires very little equipment and can be done almost anywhere – inside or outside, in the grass or beach, or in a yoga studio or your house. Videos that are adapted for individuals with disabilities can be found on NCHPAD’s website and WhatDisability.com. Other resources and books can also be found online too for extra help and information. Yoga terms can be difficult to pronounce, so change the names of the different yoga poses around to make them easier to remember and support with sounds, phrases, etc. While yoga might not be the exercise of choice for everyone, there are many aspects of yoga that can have positive effects, both physically and mentally, for many individuals with disabilities.

Plan for the Future: Your Own and Your Son’s or Daughter’s

 A three-part series

By Laurie Hanson, Esq., Special Needs Alliance

Special Needs Alliance LogoThere are an estimated 600,000-700,000 adults with intellectual and developmental disabilities (I/DD) in the United States who are living with aging family members and there is no plan in place for their future. Below, our colleagues from the Special Needs Alliance emphasize the importance of planning and trusts.

With the upcoming launch of the Center for Future Planning, The Arc is shining a spotlight on the need to encourage and support families to create person-centered future plans. The Center will provide practical assistance and resources on future planning items such as assisting the individual with daily and major life decision-making; housing and residential options and supports; financial planning; special needs trusts; and personal care and daily living supports.

The time to plan for your son’s or daughter’s future is now…and that means your future, as well. What a lot of people don’t know is that planning early, while seemingly expensive upfront, will save a lot of money and lead to better outcomes in the long run. Planning gives everyone peace of mind: you, your friends and family, and your son or daughter.

This is the first in a three-part series. This first installment is an overview of estate planning to protect your son or daughter with disabilities. The second will be an in-depth look at third party special needs trusts (SNTs) and third party pooled trusts. And the third will be an overview of first party SNTs and first party pooled trusts. You may want to read articles in The Voice, published by the Special Needs Alliance, which address these issues, as well. For instance, those articles discuss a 15-step approach to planning, guardianship, and letters of intent.

Estate Planning to Protect a Child with a Disability

The heart of a parent’s estate plan is ensuring that a son or daughter with disabilities lives in safe housing, has people supporting them, and maintains a good life after the parent is gone. The family must organize all of the son’s or daughter’s information, draft a letter of intent, and then ensure that all estate planning documents and nominations of any fiduciaries or agents are in place.

One of the most important goals of this planning is ensuring that the son’s or daughter’s public benefits are maintained after the parent dies and that there is money to provide for those things that the public benefits often do not cover (service animal expenses, therapies beyond the scope covered by the state’s health program, special foot care, assistive technology, communication devices, computers, someone to support your child, etc.).

The best way for a parent to achieve the financial goals is to establish a third party SNT or a third-party pooled trust sub-account for the son or daughter and direct all assets (retirement accounts, real property, investments, cash, etc.) to the third party special needs trust – either by beneficiary designation or in the parent’s will. If the trust is established correctly and the person or entity appointed to manage the trust or the pooled trust sub-account (called a trustee) manages the trust properly, the son or daughter will be able to maintain public benefits and still have services and supports that are not covered. Upon the son’s or daughter’s death, any money left in the third party special trust can go to other family members, a charity or wherever you want it to go.

You should also decide who will be the person who makes sure that your son or daughter still gets his or her Supplemental Security Income or Social Security Disability Insurance benefits (this is called the representative payee) and who will be the person who makes sure that your son or daughter still gets his or her Medicaid, SNAP, or housing benefits. This could be an authorized representative or, if necessary, a guardian. Different programs have different agents who can be appointed to carry this out. You should know who that person is, though!

What happens if you don’t plan?

If a son or daughter who relies on public benefits to meet daily needs – income, housing, food, and medical care – inherits money outright, the person will, in most cases, lose those benefits. If the person does not have capacity to manage his or her own money, a guardianship or conservatorship would have to be established so that the money can be managed for him or her. To maintain Medicaid and cash benefits, a first party special needs trust would have to be established – but this can be done only if the person is under age 65. Also, any money left in the trust upon the son’s or daughter’s death must be paid back to the state, up to the amount the state paid for Medicaid benefits.

SNTs can be complicated and state requirements vary, so families should work with professionals who are experienced with the nuances of changing government regulations. But the effort pays dividends, and the alternative may mean gambling with a loved one’s future.

The Special Needs Alliance (SNA), a national non-profit comprised of attorneys who assist individuals with special needs, their families and the professionals who serve them, has formed a strategic partnership with The Arc.  The relationship is intended to facilitate collaboration at the local, state and national level on issues such as providing educational resources to families, building public awareness, and advocating for legislative and regulatory change. 

 

Immunization Month – Not Just for Kids

August has been recognized by the CDC as National Immunization Month. During this month they are striving to inform individuals about the importance of immunizations, not only for children, but throughout an individual’s lifespan as well. The week of August 24 – 30, designated Not Just For Kids, specifically tries to reach out to adults about maintaining their health with proper immunizations. Immunizations are especially recommended for those adults with chronic conditions (for example asthma), diabetes or heart disease, which studies have proven to all be more prevalent in individuals with intellectual and developmental disabilities (IDD). Many individuals with IDD may live in a residential housing program with other peers or attend a day program – this increases their daily exposure to other individual’s germs and bacteria making it even more important that they keep up to date with necessary immunizations.

For an individual with IDD that already has many other chronic conditions present contracting the flu, pneumonia, whooping cough, etc. can be very hard to fight off as well as being a large financial strain if hospitalization, follow up medications, etc. is required.

One vaccine that is most commonly discussed for adults is the Influenza, or flu, vaccine. It’s recommended to get a flu vaccine every year to build immunity against the illness. The other highly recommended vaccination is the Td (tetanus) shot, which is recommended every ten years for adults (starting after the age of about 19 years old). To avoid getting the tetanus bacteria it is also recommended to make sure to thoroughly clean all wounds and cuts to get all dirt and bacteria out. This will also help to reduce the chances of getting any other bacterial infections as well.

Other vaccines can help prevent against certain cancers, Hepatitis A & B, measles, mumps, and pertussis (also called whooping cough). In past years there has been an increase in the outbreaks of whooping cough in the US. In just the state of Wisconsin they reported over 7,000 cases of whooping cough from 2011 to 2013 and 48,000 cases nationwide in 2012. It is unsure what has recently caused this increase, but making sure that everyone is up-to-date on all recommended vaccinations will help to reduce future outbreaks.

Vaccinations are not the same for everyone. They can depend on an individual’s age, occupation, genetics, potential exposure to harmful diseases and germs, and other pre-existing health conditions the individual may have. So next time you’re at the doctor make sure to talk to him/her about which vaccinations are recommended for the ones you care for and make sure to keep them up to date in the future.

Eruption Athletics – An Innovative Approach to Making Fitness Fun

Eruption AthleticsThe Arc recently paired up with the dynamic duo of Chris Engler and Joe Jelinski, the co-owners of Eruption Athletics, to present at the National Down Syndrome Congress Conference. Together, The Arc and EA, presented 3 health and fitness sessions – 1 to the general conference and 2 interactive fitness sessions with their Youth and Adult conference for self-advocates.

Eruption Athletics (EA) was created in 2009 to help prepare individuals competing in Special Olympics’ games. Since then the organization has evolved into an adapted fitness facility designed specifically for individuals with disabilities to come to work out and learn more about health and fitness. Located just outside Pittsburgh Pennsylvania, EA first partnered with The Arc’s Achieva Chapter to help do fitness sessions at their free health assessment events as part of the HealthMeet project.

Joe and Chris help empower their clients with the knowledge of how to be physically active to build strength and endurance while preventing injuries. They provide personal one-on-one or group training sessions. Their program instills in their clients an attitude that there is nothing they can’t do because of their disability and shows them that exercises just need to be modified or adjusted to fit each individual’s specific needs. Spend two minutes in a room with Joe and Chris and you’ll know why they have a dedicated following of clients that continue to come back. Their bright colored clothing matches their high energy vibe and excitement that they bring to each training session.

Individuals that come to their classes are not only becoming more physically active they are also developing socially and cognitively. The group sessions with peers masks working out by providing a fun, social, and supportive environment that makes individuals actually look forward to exercising! It gives them a place to go each week to see old friends, meet new ones, and be part of a group that encourages each person to fulfill their own potential without comparison to others in the program. Their innovative approach to physical activity is helping to improve their clients physically and mentally by not only building muscle, but also self-confidence through proven results.

EA has recently released their new patented Eruption Athletics “Volcano PADD”. The PADD along with the accompanying instruction manuals that vary from beginner to advanced makes exercising easier, fun, and more accessible for individuals with disabilities. To learn more about EA’s Volcano PADD, contact Eruption Athletics.

This isn’t the last you’ll be seeing of Eruption Athletics though. They will be joining us in October down in New Orleans for The Arc’s National Convention. Joe and Chris will be combining forces with the HealthMeet project again to provide morning fitness sessions – so make sure to find out what all the hype is about and join us in New Orleans for our energizing sessions to get your day started right (and make some new friends in the process!).

Chapters of The Arc Selected for National Center on Criminal Justice and Disability’s “Pathways to Justice” Training Program

We are pleased to announce that five chapters of The Arc were selected to pilot implementation of The Arc’s National Center on Criminal Justice and Disability’s (NCCJD) “Pathways to Justice” Training Program. Through this program, chapters will help build the capacity of the criminal justice system to effectively identify, serve and protect people with intellectual and developmental disabilities (I/DD), many of whom have “mild” disabilities that often go unnoticed among criminal justice professionals without appropriate training.

Each chapter will create and/or strengthen their current multidisciplinary team on criminal justice and disability issues (what NCCJD is referring to as “Disability Response Teams”) and gather roughly 50 trainees from law enforcement, victim advocacy and the legal profession for a one-day training on criminal justice issues. The selected chapters are listed below:

“When individuals with I/DD become involved in the criminal justice system as suspects or victims, they often face miscommunication, fear, confusion and prejudice. The Arc’s National Center on Criminal Justice and Disability plays a critical role in improving first response and communication between people with I/DD and the justice system nationally.

“Through NCCJD’s “Pathways to Justice” training program we are tapping into the most powerful resource The Arc possesses – our chapter network. The five chapters selected either have longstanding criminal justice programs or a commitment to building their capacity in providing such training, both of which are invaluable to achieving NCCJD’s overall goals. We look forward to working closely with each chapter and learning from their work. Through this collaborative effort NCCJD will become a national focal point for the collection and dissemination of resources and serve as a bridge between the justice and disability communities,” said Peter Berns, CEO of The Arc.

Last year, The Arc was awarded a two-year grant for $400,000 by the U.S. Department of Justice, Bureau of Justice Assistance (BJA) to develop the National Center on Criminal Justice and Disability.  This is the first national effort of its kind to bring together both victim and suspect/offender issues involving people with I/DD under one roof.  The goal of this project is to create 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 I/DD, whose disability often goes unrecognized, and who are overrepresented in the nation’s criminal justice system – both as victims and suspects/offenders

Easy Approaches to Safety and Injury Prevention

Safety firstFalls are a large cause of traumatic brain injuries and physical disabilities in the US and can happen to anyone at any age. We should strive to make sure that the environments we are working and residing in are safe for ourselves, as well as the ones we care for, and that we are taking the necessary precautions to prevent abuse of prescribed medicines, alcohol and daily mishaps.

One of the biggest safety issues is preventing falls. While some falls are inevitable and can’t be controlled we can do our best to ensure the area around us is as safe as possible to prevent the ones that we can. Some individuals with disabilities are already at a higher risk of falling due to mobility issues that can make getting around already a daily struggle for them. Small changes in your home, such as adding a railing on stairways or a handle bar in the bathroom/shower, can make a big difference. Most often these small things are simple to overlook daily, but very easy to correct. Another easy change is to make sure that there is plenty of area between furniture and tables so that individuals with walking aids will have plenty of room to pass by without hitting items around them. Remove area rugs or make sure that they are secured tightly to the floor with double sided tape or non-slip grips underneath.

Each room in your house should have proper lighting and light switches and lamps should be easy to get to when entering a room. Making sure the individual you care for receives regular check-ups to maintain their vision is also helpful, so that they can clearly see the environment around them. Blurry vision can cause dizziness or make them lightheaded which could contribute to losing their balance and tripping. Staying physically active will also help build bone density and muscle to make individuals stronger and increase coordination and balance, so that they are able to support themselves more and reduce injuries.

It is important to prevent the abuse of prescription drugs. Individuals with an intellectual disability may not intentionally misuse their drugs, but unknowingly forget to take their medicine, take too much of it, or not be aware and combine it with something else that could be potentially harmful. This is why it is necessary for individuals to learn and be aware of what medicines they are taking, potential side effects, and things to stay away from when on certain medications (such as alcohol, other prescription drugs, etc.). A pill container that has the days of the week on it is a great idea to use to distribute what pills are taken at what time of the day. They also serve as a good indicator of whether the medicine has been taken that day in case the individual forgets. This will reduce the risks associated with taking too much/too little of the prescribed medicine. Providing individuals with disabilities with this knowledge will help them understand the importance of each medication and the amounts that they take.

Future injuries and accidents can be prevented by ensuring that the environment around you is safe and the ones you care for are empowered with the knowledge of potentially harmful situations. In the case that something does happen make sure there are emergency numbers near all phones for 911, poison control and the fire department. Watch The Arc’s HealthMeet webinar to learn more about how to prevent and improve emergency care for when accidents do happen.

Health Matters – Low Physical Activity Levels For Individuals with Disabilities

HealthMeet, two people trainingCDC released their Vital Signs earlier this month that focused on physical activity and disability which revealed some alarming facts about the amount of activity that individuals with disabilities receive. The data showed that half of individuals with disabilities get no physical activity at all (compared to 1 in 4 for individuals without a disability). No physical activity leads to other health-related issues such as obesity, heart disease, stroke and diabetes – which individuals with disabilities are three times more likely to have. Changes need to be made to relay the importance of being physically active and alterations to existing programs need to occur so that individuals with disabilities have more options to physical activities that they enjoy.

The CDC states that there are more than 21 million Americans in the US that identify as having a disability. While the range of ability for these individuals varies significantly, a lot of these individuals are capable of being physically active on some level. It is recommended that individuals exercise two and a half hours a week, which breaks down to about 30 minutes of activity 5 days a week. However, any activity is better than none, so even if it’s just a 1o minute walk it still counts for something. If the individual hasn’t done any physical activity at all prior to this, 10 minutes may also be as long as they can go. Starting slowly and building up gradually over time is essential to help prevent injuries or discouraging individuals with an activity that is too difficult in the beginning.

The Arc’s HealthMeet project has taken steps to help improve the current situation by training caregivers and other direct service professionals in the HealthMatters program. HealthMatters is an evidence-based health and fitness curriculum developed by the University of Illinois at Chicago (UIC) that is tailored specifically for individuals with disabilities. It provides the structure and materials to implement a 12 week health and fitness program. Each session focuses on a healthy lesson for the day, such as making sure to drink water while exercising or the importance of stretching before/after exercising, etc., and then spends the other half of the time doing a fitness activity. Activities can be done inside or outside and require little equipment so it’s easy to implement and get started without the need for expensive machines and equipment.

Through HealthMeet, The Arc has certified 76 new trainers from 38 different Chapters of The Arc and other disability organizations across the US. HealthMatters has been implemented in a variety of different ways that suit each communities needs best, whether it’s in a day/residential program, combined with the HealthMeet project’s free health assessments, or brought into local schools special education programs. A few of The Arc’s Chapters have paired the lessons with field trips to local grocery stores to learn about eating healthy or to The Y to learn about using the different weight lifting machines and partake in water aerobics in their pool. These field trips not only were fun and educational for the participants it also got them out in their community and allowed employees that worked at the local establishments a chance to interact and learn more about our population, which they might have had little experience with beforehand.

In addition to getting these individuals up and moving on a weekly basis and helping them to learn more about making healthier choices, the HealthMatters program also improves social skills and helps build self-esteem. It gives participants a chance to interact and be part of a group. It also helps them find individuals that might have similar interests that they can be active with.

For more information about how to participate in one of The Arc’s sponsored HealthMatters: Train the Trainer sessions, contact Kerry Mauger at Mauger@thearc.org

The Arc’s Recycling Efforts – An Earth Day Inspiration

Over the last few years The Arc’s recycling initiatives have created environments in which individuals with intellectual and developmental disabilities (I/DD) 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 I/DD 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:

Alcoa group

Sunshine Industries’ recycle team takes a moment to pose in front of the cardboard baler that is used for the Arc Recycling initiative funded by the Alcoa Foundation. The baler is used to compact the cardboard to take up less space. In addition, they also recycle various types of plastics, aluminum, and paper. Pictured from left to right is Ricky, Robert, Kimica, Nick and Mark.

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 I/DD 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:

Ulster-Greene

Team Member Craig Nickerson, Team Leader Theo Raddice, and Team Member Sharon Robertin take a break from sorting products to smile for the camera.

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 I/DD 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 I/DD 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 I/DD 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 I/DD to volunteer as collection helpers which led to them expressing an interest in hiring workers with I/DD 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 I/DD as well.

HealthMeet: Top 5 exercises for people with intellectual and developmental disabilities

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 I/DD 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 I/DD, to practice in order to maximize their strength, health and independence. Each exercise focuses in improving stability, strength and cardiovascular endurance. (The information below is presented as images. Access a readable file here.)

#1: Plank:

Plank

#2: High Knees:

HealthMeet - High Knees

#3: Arm Circles:

HealthMeet - Arm Circles

#4: Single-Leg Balance:

HealthMeet - Single Leg Balance

#5: Squats:

HealthMeet - Squats

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