Accessing Accommodations in Scouts BSA

Special Needs Accommodations in Scouts BSA

Serving Scouts with Disabilities

It wasn’t too long ago that those with disabilities were actively excluded from life of mainstream society.  If they didn’t automatically look, think, act or speak like everyone else, they were often shunned. If they were given similar opportunities, they were segregated away from others. Accommodations for special needs Scouts were rare.

Fortunately, thanks to some fiercely passionate parents and other advocates, things have changed.  Those who are physically, intellectually, and neurologically different are now encouraged to participate alongside everyone else in school, sports, band, and other social clubs.

Likewise, Boy Scouts of America encourages its units to welcome youth of all abilities into their troops.

But the journey to full inclusion and rank achievement is not always clear and easy for those with disabilities.

 

Feeling Included

In the past many troops did not feel they had the adequate resources to properly accommodate some potential members.

The issue today is not necessarily the lack of accommodations provided by BSA, but the lack of awareness that they exist, both by troop leadership and parents of special needs Scouts.

Another potential problem could be the lack of willingness of the troop leadership, its members and/or the Scouts parents to push for assistance despite knowing help exists.

It’s for all of these reasons, both past and present, that the Boy Scouts of America created the National Disability Awareness Committee for Special Needs Scouts. It’s mission is to to help all youth who joins its ranks for feel welcomed and included.

Yes, there are some troops that are specifically designed for special-needs Scouts only.  But the organization would argue that those scouts are best served in regular patrols. Everyone benefits by including those with differences.

I heartily agree. That is why my autistic daughter has joined a regular inaugural girls BSA troop.

 

All in the Family

My husband is a Boy Scout “lifer”.  He earned his Eagle Scout rank and received the Vigil Honor of Order of the Arrow. He worked at a few Scout camps and now serves as a troop Scoutmaster and Wood Badge staff.  To say he’s deeply committed to Scouts is an understatement.

 

 

My son also earned his Eagle Scout.  Like his sister he also has autism.  But he started right at age 11 and had a lot of support from leadership. We did not request any special needs accommodations as we felt he was progressing through the ranks well-enough.

My daughter entered Scouts at age 15.  She has greater difficulty understanding auditory information and memorizing the Scout Oath and Law. Due to these conditions, we are seeking accommodations that will enable her to progress at her own comfortable pace and in her learning style.

 

 

I became an Assistant Scoutmaster both to help her and other leaders best serve her. Because our entire family is so involved in Scouts, we are heavily networked to people who will help my daughter succeed.

Despite her challenges, we are committed to helping her forge her own path in Scout as far as she is willing to go. I believe firmly in the power of Scouting to build solid life skills and self-confidence, as we have witnessed with her brother.

(Read my article HERE on why I believe Scouts is the one of the best organizations for those on the spectrum.)

 

A Special Needs Parent’s Role in Scouts

I understand many parents won’t involve themselves at this level, and that’s okay.

But to ensure the success of a youth in Scouts, it’s vital that the parent be a vigilant advocate for his/her child’s entire Scouting lifetime.  

To help me better understand how Scouts BSA accommodates special needs families, not only for myself but other families, I reached out to Julie Hadley.  She is the Disabilities Awareness Committee Chair for our council (Hoosier Trails).

I consider Julie a special education expert not only in Scouts but personally and professionally as well.  She is mom of three, all of whom had a range of educational challenges.  She has also served as a special education teacher since 2007. As she put it, “I have been on both sides of the table for IEP meetings. The good, the bad, and the ugly.”

I asked Julie a range of questions related to special needs accommodations in Scouting programs. I believe her answers will help any new Scout and Scouting parent start off on the right foot.

 

Scouts BSA Accommodations Q & A

1. How do parents go about asking for accommodations with their own scout troop?

Parents need to talk to the scoutmaster and troop leadership as soon as their child joins a troop or pack. The way things have been in recent history, parents are not asking for accommodations until almost time for the youth to age-out. Parents are talking to the scoutmaster a month or a few weeks before the youth turns 18, when they see that he is not going to make Eagle (Scout).

 

2. What kinds of accommodations can they ask for?

This absolutely depends on the needs of the scout. What accommodations do they receive at school?  No two scouts are the same, so accommodations are absolutely individualized. My guidance is that parents talk to the scoutmaster and discuss what accommodations the school is using.*

*Side note: Later on, the parents and scout leaders will work on formulating the right accommodations using the Individual Scout Advancement Plan ( BSA-ISP-form.pdf (51 downloads) ).  Bring along your child’s IEP to help figure out the right accommodations with troop leadership.

 

3. How can scouts with disabilities get an extension on the age-requirement to achieve the Eagle Scout rank?

There is a common confusion: an “extension” is not what special needs scouts need.

Special needs Scouts need to complete the form REQUEST FOR REGISTRATION BEYOND THE AGE OF ELIGIBILITY. That registration stays with the council and we approve it as a committee.

Extensions are specific for only extra time and are approved by National. They are difficult to get and the youth has to have some life changing event that they have had no control over. National does not approve many of these.

 

4. How might a special needs parent role be different from a non-special needs parent role in a scout troop?

Special needs parents know all too well that their child is going to need extra support. Like every parent, we volunteer to support what our children get involved with.

Possible roles for special needs parents include: educating troop leaders on what their child needs and educating other youth on those special needs. I have seen parents jump in with both feet and become part of troop leadership.

 

5. What should the leadership of a troop do to ensure full inclusion of the special needs child into a regular troop?

Start with open honest conversations with the parents, asking some of the tough questions. Learn about the disability, and learn what the youth needs or doesn’t need. Troop leadership needs to know what parent expectations are. Troop leadership needs to ask the youth what they want to accomplish in scouts.

 

6. Is training providing for troop leadership to better understand the special needs of their scouts? Who does that training and how do they go about asking for it?

University of Scouting offers special needs training.  University of Scouting happens at various times of the year in our neighboring councils. Classes are taught by volunteers with a lot of experience in that area.

 Training Expo in our council hold special needs classes that are taught every year on various topics. Training Expo occurs every February and class topics are suggested by individuals who volunteer to teach the class.

Troop Leadership and parents are free to contact me and I will help with educating leadership or directing them to someone in their area that have a lot of experience.

Training is always a hot topic when everyone is a volunteer.

 

7. What should be considered when joining a special needs troop (if available)? Is there a link to find them in someone’s local area?

When joining a special needs troop or forming a special needs troop, figure out the primary goal for your child. What experiences do you want for your child?

The best way to find out if we have special needs troops is to call council.

 

8. What are the ways the family of a special needs child can advocate for him/her beyond the troop level?

That’s an interesting question that I’ve never been asked. The best answer I have is to contact our committee and work with the committee.*

*Side note: Those on a Council Disability Committee can serve as an intermediary between the special needs scout and his/her family and troop leadership if a problem arises.  The committee member can assess the situation from all sides including the Scout’s, helping everyone come to a resolution. Sometimes that resolution can be positive if a plan-of-action is put into place long before he/she ages out. But if the Request for Registration Beyond the Age of Eligibility form was not completed, the process can be much harder.

Sometimes if troop leadership is not willing or able to accommodate the requests of the special needs Scout, often he or she moves on to another troop and/or is not able to achieve the highest rank desired.

 

9. Is there a troop assessment instrument to measure how inclusive a troop is of a special needs scout?

There is, not to my knowledge, an assessment like this. This would be interesting and something that would have to be re-evaluated with every change in leadership. For some troops that happens every couple of years…and some troops it is MANY years between changes.

 

10. Where can special needs families go to get more resources to help meet their needs?

There are several special needs and scouts webpages. National (Scouts BSA) has resources listed. There are special needs trainings with the national committee at Philmont (New Mexico) every summer.

 

How to Access this Important Accommodation

The most important lesson is that it’s best to file the REQUEST FOR REGISTRATION BEYOND THE AGE OF ELIGIBILITY form as soon as a special-needs Scout joins a troop.  For my daughter, I plan to do this very soon.

To get the process started, be sure to follow these steps:

1. Contact your council’s disability committee to start the paperwork: registration-beyond-the-age-of-eligibility-1.pdf (37 downloads)

2. Schedule a meeting with parents, Scoutmaster, committee member and Scout.

3. Parents and Scoutmaster(s) work together to complete the paperwork.

4. Submit the paperwork to the committee member.

5. Decision will be made by the committee to accept the form.

 

Rely on the expertise and guidance of those in the Disability Committee of your council throughout the years your child will be in Scouts.  They represent the best of Scouting because they are committed to making sure your special needs Scout has the opportunity to grow and achieve great things among those who care.

 

For more information, visit the Disabilities Awareness page on the Scouts BSA website.

For disability assistance with the Hoosier Trails Council, visit their Facebook page “Hoosier Trails-Disability Awareness”.

 

Overcoming Fears of Traveling with Autism

Overcoming Fears of Traveling with Autism

Nervous to Travel?

Do you worry about traveling with your child who has autism?

Maybe you’re thinking, My child can barely handle being in a local public space, let alone somewhere far away.

Don’t worry…you’re definitely not alone.  I was in the same place when my kids were young.  I was hesitant to take the leap into a major, week-long vacation.

Here’s me:

What if my kids have a terrible time?  What if we spend all of this time and money but our trip ends up a disaster?  What if….? What if…? 

I realized that this kind of irrational, excessive worry lead me feeling locked up in a self-made prison of fear.  If you ruminate on the “what ifs” and never take the leap into the wider world, you’ll never experience true joy.

But it doesn’t have to be that way!  You can learn to overcome those fears about traveling with special needs.

Did you know…?

A “worry experiment” was conducted to see if what people were afraid of actually came true.

What 85% of test subjects worried about actually never came true!  And with the remaining 15% whose worries came true, they realized they misperceived or exaggerated their problems.  They viewed those “bad events” as a good life lesson in becoming better problem-solvers and less worriers.

When I catch myself worrying too much, I often reflect upon the self-fulfilling prophesy phenomenon:

Did I make something come true just because I was afraid of it to begin with?   Did my kids sense my apprehensions and then react to my behavior with their own fears? 

For some families, though, the sense of fear is founded on something that has happened over and over again.

Like running away from home.  Like being attracted to water but unable to swim.  Like harming oneself and others in the family during a meltdown. 

THAT is their REALITY.

Overcoming Fears of Traveling with Autism: Important Tips

You probably know the “Serenity Prayer.”  It is often used in AA for recovering addicts. But in case you don’t know it or need a reminder, here is my interpretation:

Grant me the serenity of mind to accept what can’t be changed; the courage to change what can be changed, and wisdom to know the difference.

This little bit of truth has gotten me through some pretty “rough seas” in my life, especially when coming to terms with both of my children’s diagnosis of autism.  Maybe you feel the same.

It’s good to be reminded of that in every facet of life…even when taking major vacations or little getaways.

Learn what CAN be changed

  1. Is there something YOU can change before planning a trip? Maybe it’s an adjustment of expectations of what a vacation means to you. Or your expectations of your child. Or maybe you can assess the things you need to do to prepare your child for the trip. Or…maybe it’s identifying the root of your fears and understanding how they can managed.  Simply adopting a “let’s have fun no matter what” attitude goes a long way!

 

  1. Are there things that YOUR CHILD can change before a trip? Is there something you can work on a home to prepare your child for a trip?  Recruit the help of people who know and care about your child. Rely on their expertise to draft social stories for the trip, for example. And remember, if you plan a trip a year or more in advance, just know that your child WILL mature in a way you may not quite see yet!

 

  1. What can YOUR VACATION DESTINATION do for your family? Are there certain days that are better to visit than others? If the accommodations needed for your child don’t appear on listed on the website, give them a call.  Maybe they can provide those things simply because you ASKED!  And don’t forget you can rely on a travel agent (like yours truly) to give you advice about certain destinations.

 

Learn what CAN’T be changed

Autism therapies are designed to alleviate meltdowns or sensory overload or language difficulties.  They help the child, the parents, teachers and others who interact with your child in various ways.

But can they actually “cure” autism?

Personally, I don’t believe that is possible to ever change the genetic predisposition of a person with autism.   But, I’m not getting into THAT debate…

I bring that up to say that it’s important to recognize that despite good effort, some issues related to your loved one’s autism may not change.

At least at the present moment.

Some therapies may not produce desired results.  Some environments may not be conducive to making your child feel safe or you feel at ease. Forcing massive change on your child in order to go on that dream vacation may just not be prudent.

Certain vacation destinations will be more accommodating than others.  Some hotels and theme parks are more “autism friendly” than others.  Camping is an experience that may require some brief experimentation before an “all-in” investment in equipment.

If your destination does not provide what you need, bring it from home.  For example, try out eloping technology at home first to see how it works with your child before using it on vacation.

It helps to know not only how “adaptable” your child is to different environments but also how flexible certain destinations are to the needs of your child.

Wisdom to know the difference

How do you know exactly what you can change and what you cannot?

I recommend talking to other parents with autistic kids.

Pick their brains: Where did they travel? How was the experience? What did they do to plan for their trip?  What accommodations did they create at home versus need at the destination?

Their experiences may spark inspiration. Their advice will give you direction and encouragement.  While their experiences are their experiences, you can still glean some nugget of insight to help make better decisions.

You can always start a conversation with me!  Now that my kids are nearly adults I have become a little wiser along the way.  I can never pay back those who helped me through this journey when I started.  But I can “pay it forward” to others!

Think “happy thoughts” to overcome your fears

I was just stubborn enough to make sure we traveled as a family despite the fears.  I adopted the “do or die” attitude whenever we went somewhere…to the children’s museum, to the outdoor historical park, the movies, to the local playground, to the amusement rides at the county fair, etc.

While my kids were young we weaned them into travel experiences. We took mini-vacations or local staycations so they got used to different routines and environments. They developed the skill of “adaptability”. Slowly we overcame our fears of traveling considering their special needs.

But after a while, I learned to just “let go” and “jump all in”.  I was SO ready to behold the castle at Walt Disney World! After a year of watching park planning videos, so were my kids. They were just as excited as I was. And the trip ended up blowing my worries out of the water!

 

Overcoming Fears of Traveling with Autism through “life lessons”

Will you be part of that 85% that worries over nothing? Or are you that 15% in which what you worry about happens, but the experience made you or your child a better person?

Failure will happen.  But you, your child and family will come out braver and stronger than before.  If those “big, bad worries” happen on your trip…well, consider it a valuable life lesson.

The more you travel the more you’ll reach those “mountain top” experiences of achievement (maybe even accomplish those skills your child been working on for months in therapy).

I have NEVER regretted the time traveling with my autistic kids, not even when they had meltdowns and I was at my wits-end.

I recommend viewing any trip outside the home as an adventure to explore the world and learn new and fascinating things. Life is a journey filled with experiential learning.

Consider making your vacation decisions and planning in light of the wisdom of the “serenity prayer”.

And…a joyful, positive attitude goes a long way!

 

If you need someone to rely on for special needs travel guidance, please consider me.  I would love to help you!  Just click on this link for a free travel consultation!

 

 

Autism Travel Tips with Wolf+Friends

Autism Travel Tips with Wolf+Friends

 

Autism Travel Tips from Your Autism Guide…featured on “Wolf+Friends”

 

Just recently I had the pleasure of sharing some autism travel tips with PJ Feinstein, founder of the website and app “Wolf+Friends“. This helpful resource connects parents of special needs children with local therapists and well as other parents for a peer-to-peer support system.  Wolf+Friends also features terrific articles that highlight both the challenges and joys of raising those with autism and other diagnoses.

 

Here is the article featured on the Wolf+Friends app. (Simply download the app to continue reading the article.)

 

9 Things to Do Before Your Family Vacation

Angela Zizak, A Certified Autism Travel Professional, Offers Planning Tips For An Easier Trip.

By PJ Feinstein

Travel has always been a passion for Angela Zizak, so much so that the part-time adjunct instructor of sociology recently decided to become a travel planner. Drawing from her experience raising two teenagers with autism, she specializes in creating customized vacations for families with children on the spectrum. 

“When my daughter was six and my son was eight, we stayed at Walt Disney World for a week.  It was the first time we took advantage of an autism accommodation, and it made our trip even more magical,” says Angela. Now a certified autism travel professional, she runs the website Your Autism Guide, encouraging special needs families to step out of their comfort zone and explore exciting destinations.

Angela understands all too well that some travel experiences will be stressful but encourages parents to “think of them as ‘therapeutic growth experiences’’ for your autistic child and the whole family.” Traveling helped her kids to better cope with transitions and new environments, and she and her husband, Tony, learned to become more resilient and playful.

Angela shares 9 tips for parents who aren’t sure how to start planning a vacation with an autistic child or are just nervous about traveling in general.

I would love to help you plan a fun-filled getaway!  Just click on this link for a free travel consultation!

Adult Travel with Exceptional Getaways

One Incredible Idea…

When I first found out about the possibility of adult travel with Exceptional Getaways, I was intrigued.

There on the bulletin board of our music therapy agency was a brightly colored flyer about an upcoming vacation getaway.

I discovered that this company was dedicated to providing fun travel getaways and vacations for adults with special needs.

While my kids with autism grew up taking vacations and traveling, the thought had not yet occurred to me that they would soon be adults ready to see the world without me around.

Soon I called up Exceptional Getaways, Inc. to request a face-to-face meeting. I met both Michelle and Tim, founders of this company, curious to find out what they do.

 

Drumroll, Please!

Whatever future I envisioned for my kids seemed a whole lot brighter by the presence of this organization. Their mission serves a tremendous need for those with different needs to fulfill their vacation dreams and realize their goals for independence at the same time.

So, with no further ado… I am very excited to share with you what I learned about Michelle, Tim and their company Exceptional Getaways, Inc.

 

Adult Travel with Exceptional Getaways: An Exceptional Group Vacation Experience

Both of the founders of Exceptional Getaways, Inc. come from backgrounds serving the special needs community. Michelle Webster owns a behavior consultant company and is a behavior consultant. Tim Stout is a case manager with a Family and Community Supports Waiver case management company.

Over the years they realized the massive need for adults to have the right support to live a happy and fulfilling life.  And they believed travel was a huge part of meeting that need.

It has only been two years since they started, but it has grown “bigger than imagined,” according to Michelle.   They envisioned meeting once a month for small, local trips with an occasional larger vacation during the year.

They have gone camping for a few days at state parks.  Their strategy is to mix-in trips that are shorter or closer to home with longer trips that are farther away.

Today, they now include meet-ups every Thursday in Bloomington, Indiana, for free “Fun Day” events.  (This spring they had an Easter egg hunt with kite-flying at a local park).

Just recently they announced on their Facebook page, with great enthusiasm, that they are planning a week-long trip to Walt Disney World in 2020.

 

Who can Travel with Exceptional Getaways?

The key to their success is having the right support for their clients.  Given that each person needs varying degrees of assistance, they provide the right ratio of staff to go with their travelers on these trips.  A few may need 1:1 help while others may only require 3:1 assistance.

The staff are hired by Exceptional Getaways, Inc., but they are often support staff for waiver agencies also. They are trained to handle most situations that require specialized care.  Sometime a traveler’s own staff is welcomed to join them.

Exclusively-planned trips are also available in which a traveler can plan and personalize his or her own vacation destination.

Michelle and Tim make it a point to go to every trip.  (Usually both go, but sometimes one depending on the trip.) That way they can provide backup support when needed.

Because it is group travel, there is room to develop some personal independence as well as bond with others within the security of a safe environment.

When they go to Walt Disney World, for example, they rent a large house with many bedrooms as a way to maintain high levels of safety and encourage friendships to form.

Their travel clientele must be 18 and older.  The oldest traveler was in her 70’s.  Some travel with them frequently, while others pick and choose based on their availability of time and funds.

They only have to sign-up for each trip that is planned a month or so in advance.  Their weekly local “Fun Days” can include teens with their parents or support staff and no sign up is needed for those activities.

Most travelers come from the local Bloomington area or even Indianapolis.  Lately more people from as far as Chicago and Kentucky are calling them up, asking if they can join their groups.  The challenge, however, is getting travelers together into one meeting place first before they can set off to their destination as one unified group.

They have their own vehicles to transport the group, including what Michelle calls the “party bus” that can be fun times while traveling and the large SUV driven by Tim that pulls the trailer with all of the necessary equipment (i.e. wheelchairs, etc.).

 

How Do Travelers Pay for These Trips?

Clients can establish payment plans if they have fixed incomes; they can also use Arc Trust money. They can save money for trips that are already planned or they can build a savings for future unplanned trips.  Exceptional Getaways, Inc. can’t solicit funds from churches or other foundational-based giving associations (i.e. scholarships or grant money).  Some individuals, families or companies have raised money for individuals to go.

 

Who Else Do They Help?

One of the great hidden benefits of this company is for those who don’t go on their trips.  Just like many of the summer camps for those with autism or other disabilities, Exceptional Getaways, Inc. provides the opportunity for parent respite.

Considering that many may still live at home well into adulthood, this affords parents a time to bond with one another or do their own thing. Maybe parents can plan their own couple’s or friends’ getaway at the same time.

I got the strong sense that both Michelle and Tim feel very fulfilled by what they do. They are highly involved in the community, doing Buddy Walks and Autism Walks, and otherwise getting the word out about the benefit of their services.  They were continuously smiling as they were talking about the people they work with and the places they have visited.

As Michelle put it, “we just want to see people happy and enjoying themselves.”  And those who travel with them certainly are as they keep coming back for more!

 

Check out Exceptional Getaways, Inc. Today!

When I asked if there are other companies like this one, they said they seem to be the ONLY place in the Midwest (and definitely in Indiana) that provides supported travel for those with disabilities. (Other companies like Exceptional Getaways, Inc. are mainly on the East and West coast.)

Clearly the idea of supporting adults in realizing their vacation dreams is still quite novel.  I imagine that once word “gets out” about Exceptional Getaways, Inc. that many will flock to discover the benefits they provide.

Maybe your loved one with differential needs is still a child.  Even if you’re not yet forecasting the needs of your child as an adult, hopefully this brings some peace of mind knowing this is an option.  Many who have gone on these trips are so excited to go on more!

Exceptional Getaways, Inc. brings pure joy and wish fulfillment for so many already…discover more for yourself!

You can find them on Facebook at Exceptional Getaways, Inc. or at the web at www.exceptionalgetaways.com.

 

If you know a loved one who could benefit from this but is afraid to travel because he or she has never flown on an airline before, check out my article on “Flying with Special Needs“.

Flying with Special Needs

Flying with Special Needs

Getting ready to fly with special needs? On a “Wing and a Prayer”

It may be scary to think about the challenges of flying with special needs.

When my daughter was 8-years-old, my cousin asked her to be a flower girl in her wedding.  My daughter was thrilled about this role when I showed her pictures and videos of little girls walking down church aisles in fancy dress.

The only problem: we had to fly from Indiana to Florida for the wedding.

My daughter had never flown before and I was a bit nervous.  She has autism, and her language skills were still in an early stage of development.  Explaining through verbal reasoning was not the best way for her to understand what goes on around her.

Still, I bought airline tickets and hoped for the best possible scenarios during our travels.

Well, “wishing and hoping” is not the best way to plan for flying with an autistic child for the first time.

Meltdown on the Airline

While the flight out to Florida went fairly smoothly, the flight back was a nightmare.  First, bad weather delayed our outbound flight to our layover stop.  After boarding the second plane to go home, we sat waiting for nearly 45 minutes. Then they made us get off to plane after discovering mechanical issues.

My daughter was going ballistic.  When others around us were confused and getting upset, so did she…exponentially! That fact that I was a hot mess—frustrated, tired and hungry—only made things worse.

We finally got back on the plane but still waited again. My daughter was in the middle between me and another woman having a meltdown, crying and writhing around.

I apologized several times and explained that she had autism to her, but fortunately she was incredibly understanding, saying that she had someone in the family with autism.

Finally, the plane took off and she settled down some.

I vowed that as a family we would only travel by car whenever we decided to vacation.  Flying was out of the question.

 

Flying with Special Needs: Learn from My Mistakes

 “If only I knew then what I know now…”

I had flown a few times before in my life, but I was not experienced enough to anticipate all possible scenarios of what “could go wrong”.  I knew my child, but I suppose I was in denial of the need for the right preparation.

  • Did I create her a social story video of flying in an airplane or being at the airport?  No.
  • Did I read stories about flying to her?  No.  
  • Did I take her to the airport for a little “show-and-tell” outing?  No.
  • Did I prepare for the potential delays and sensory impact of such a different setting?  No.
  • Did I tell the airlines about her needs?  No.

I did not adequately prepare her for our flight. Actually, not at all.  If only I had done my homework, we might have had a better experience.  Well, I’m doing it now…for you.

 

5 Steps to Preparing Your Special Needs Loved Ones for Flying

My first mistake was not seeking out help.  Often, we don’t get help because we don’t know it’s available in the first place.

But now with greater awareness of organizations to help individuals and families with autism and other special needs, we can simply ask if assistance is available before “going it alone”. (Click through the links for more information.)

 

1. Know your rights as a passenger!

This is your first stop for getting help.  Due to passage of the Air Carrier Access Act, airlines may not discriminate based on disabilities.  The Department of Transportation has set rules defining passenger right and the obligation of airlines for flights within the United States (Title 14 CFR Part 382), including those with developmental disabilities.

One of those rules includes not limiting the number of persons with disabilities on a flight.  Another right is that airlines are required to provide assistance with boarding, deplaning, and making connections as well as within the cabin.

Armed with this knowledge, you can ask for help confidently.

 

2. Ask for “special assistance” from the airline when booking the flight.

Be sure to request special assistance when you buy airline tickets.

When you go online to book a flight, most airline carriers will give you an option to select special needs assistance.  American Airlines has a page with information to contact them directly via phone or online. They can contact you before your flight to confirm the type of assistance you need for your flight.

Southwest has an option to select for special assistance for passengers with “cognitive and developmental disabilities” when you select your flight (see photo).

There is a special code within the travel industry that is used to alert airlines of special needs: the DPNA code stands for “passenger with developmental or intellectual disability needing assistance”. If you are using a travel agent to book a flight, be sure to let him or her know to use that code.  For information about the DPNA code from a personal experience, watch this Facebook video by a family with autism.

If you book a flight yourself through a travel booking website like Expedia and it doesn’t give you the option to select “special assistance”, then be sure to contact the airline directly and ask for assistance for your specific flight. If you google the airline and “special assistance” you will most likely find the information you are looking for. Be clear about exactly what you need.

In some cases, this may be the need to pre-board before everyone else and/or to sit together as a family or group. Alert the gate boarding staff to the needs of your family or group.

Finally, consider booking direct flights instead of one with layovers, especially during seasons with a high chance of delays and cancellations.

Also schedule a flight time during the time of day when the airport may not be so crowded.  This may be hard to avoid (especially at busy airports like Atlanta or Chicago), but usually early morning flights may see long lines at the security checkpoint.

Call your airport to find out when it’s less crowded and then schedule your flight times around that if necessary.

 

3. Conduct a “practice-run” at the airport or at home.

Given that families with autism have had too many negative experiences at airports, some decided to take matters into their own hands.

With the help of advocacy organizations like the ARC and the Autism Society, these families have developed programs to practice being at the airport and boarding the plane.  These programs tend to run only a couple of times a year, with most scheduled in April during Autism Awareness Month.

If you think of ever flying with your autistic child—even if not in the immediate future—then it would be a good idea to sign up. Check with your local autism organization and airport for information on these programs.

Here are a few that are popular in the Midwest:

If participating is not an option, then consider making a social story about the entire process at your local airport.  The links above have some videos to view; the Autism Society has a link to a downloadable social story.

As a “field trip”, visit the airport yourself with those who will be flying with you.  You may not be able to get through security without a plane ticket, but you can take pictures of the process of parking, baggage check, amenities, security, important signs, seating areas, etc.

With these you can create your own social story that can be read again and again to build comfort and confidence with the process.

 

4. Inform TSA Cares of your need for accommodation through airport security.

Know the TSA regulations for security.

 

By calling TSA Cares at least 72 hours in advance of your flight, you can get someone to assist during the check-in to security process.  You will forward your itinerary to coordinate assistance by a Passenger Support Specialist so you, your family, or your group to get through the screening process with greater ease.

Carry a TSA notification card and/or provide medical documentation to communicate in a simple, non-verbal way each person’s needs to TSA officers.

Also know that just because someone has a disability does not mean that person is exempt from a pat-down.

I HIGHLY recommend thoroughly reading the TSA website about the procedures, watching videos about the screening process (including this social story and pat-down video), and even create your own social story “book” about the sensory issues as the process can be very over-stimulating in a visual, auditory and tactile way.  Consider practicing the process at home along with the social story.

If you think you’ll be flying more than once a year, consider purchasing the TSA Pre√ ($85 for 5 years) to expedite the process (no need to remove shoes, liquids, belts, jackets, etc.).

5. Packing Sensory Items for the Flight

Fidgets are great sensory tools for plane travel.

Airports and airlines are sensory-overloaded environments that have the potential to trigger meltdowns.  Start with knowing what type of triggers to which your autistic loved one is most susceptible.

If someone is hypersensitive to noise bring noise-cancelling headphones.  Some may block out sound entirely while others block background noise but allow someone to hear close conversation.

If someone is hypersensitive to visual stimuli, then wear a baseball hat that blocks out the wider panorama.

If someone is very sensitive to touch, indicate so on the TSA Notification card. If someone is hyposensitive then bring a compression shirt or other similar item.

Bring items that can be helpful distractions or soothing activities, such as coloring books; pre-downloaded music, games or movies on an iPad or iPhone; fidgets and other sensory toys; weighted lap-pads; neck pillows; chewy necklaces; soft brushes, etc. All of these items can fit into a “Sensory Bag” as a carry-on.

Don’t forget to bring an empty water bottle and healthy snacks.

 

Ready to Fly!

It’s the day of arrival at the airport.  As one of the most sensory stimulating places to visit, you’ll find stressed-out people rushing around.

Those with autism are very sensitive to the feelings of others around them. If you as a parent are stressed, then your autistic child may be very stressed!

Being calm and relaxed yourself is very important. Ask your airline staff if the airport has a sensory or calming room to use while you wait.  And make sure everyone in your party is well fed.

Another important tip is to … (wait for it) … HAVE FUN! Take walks around the terminal before boarding as a way to release energy. Play silly games like “I Spy”.  Read a story or watch a funny movie together while you wait.

Having the right preparation and a fun, positive attitude will ensure a more successful flight for everyone!

 

For help searching for and booking flights, feel free to get in touch! I would love to help you the perfect vacation!  Just click on this link for a free travel consultation!