Why Autism Families Need Vacations

Why Autism Families Need Vacations

 

Why Autism Families NEED Vacations Like Everyone Else

It’s actually not hard to explain why autism families need vacations, considering the challenges that they go through on a daily basis.  Vacations provide respite to relieve stress and encourage greater family bonds through fun.

I’ll be honest. My heart BROKE when I read this one particular statistic about autism families:

When surveyed by an autism affiliated travel organization, 87% of autism families stated they did NOT take vacations within the last THREE YEARS.* 

Why?!

 

Why Autism Families DON’T Take Vacations

For some people vacation is not a priority. They never took one as a child and don’t see the necessity now.  For others, vacation is only a dream because they cannot financially afford it.

And then there are those families who want one and can afford it but who just don’t go.

Perhaps they believe that vacations would only add to their stress, not take it away. They believe they could not handle the possibilities of even more meltdowns.

They tell themselves…“someday”.

Maybe many autism families are not aware of the greater number of accommodations that are now in place at popular vacation destinations.

Or they don’t realize that their autistic loved one may be totally capable of handling the change of scenery with the right preparation.

By not taking vacations—even smaller staycations on a semi-frequent basis—autism families lose out.

They miss out on opportunities to positively change the family dynamics, especially when they experience high levels of daily stress in the home.

 

Top 5 Reasons Why Autism Families NEED Vacations

If you are part of an autism family that is hesitant about taking vacations, take a moment to reflect upon these reasons why you MUST take a vacation.

1. Vacations create precious memories.

A unique setting away from home will almost guarantee that you will remember your time there.  Was there something you saw that was awe-inspiring?  What was the look on your loved one’s faces when they witnessed it as well?  Were there moments of laughter?

We love looking at our facial expressions in photos after we rode thrilling attractions at Walt Disney World…cracks us up!  Sure, there will be trying times in a new environment.

But there is nothing like reminiscing over moments of pure joy you’ve captured through videos and photos to make it through tough days at home.

Take lots of pictures of your trips. Have conversations at home about what happened during your travels. Use these as a springboard to plan another exciting vacation.

If making memories at home is few and far between, it’s time to take a vacation!

2. Vacations mean greater family bonding.

Ever heard of the phrase, “a family that plays together stays together”?  I heartily believe in this.

Everyone needs a break from the daily grind that keeps family members apart, especially when life gets too serious from school, work, or other obligations.

Playing together brings families closer and reminds them what is really important in life: enjoying each other’s company.

My son and I really bond over riding our favorite attraction at Disney’s Hollywood Studios: Hollywood Tower of Terror.  He acts like a dramatic storyteller giving me the backdrop narrative as we walk through the queue to be seated.  His excitement is so infectious that I can’t help but share in it. Then we rush back to the rest of the family to tell them all about what happened on the ride.

Joyful interaction leads to greater bonding, and vacations are the secret recipe for joy!

3. Vacations are therapy.

I strongly believe that vacation is another form of therapy that is necessary for the social, mental, emotional and even physical health of everyone in the family.

When people are placed in new environments it can be a challenge, just like a new therapy.

But many parents have reported amazing strides from their autistic children while on vacations, even at places like Disney.  Some spoke new words. Some showed greater resilience to a new schedule and sensory input.

When a child is truly enthralled to be in a place that is tremendously fun and has characters he or she loves, often he or she will show greater motivation and effort to communicate that excitement and to transition better.

My daughter showed a increased willingness to step out of her comfort zone during our past trip to Walt Disney World by going on attractions she would have never dared step foot in before—she went on Space Mountain 3 times with her brother, long after my husband and I pooped out.

We are always amazed at the amount of positive behavioral changes that come with each new visit.  Personal growth that would have taken several therapy sessions to achieve happened within one single vacation!

4. Vacations inspire creativity.

A relaxed mind, body and spirit means being more receptive to creative ideas.  Exciting destinations and natural environments stimulate “out-of-the-box” thinking that can inspire people to consider new directions in their personal lives.

And that inspiration continues long after you get home from vacation.

For my autistic teens, being at Walt Disney World inspired them to develop public speaking skills playing Walt Disney World tour guides in speech therapy and to create Disney-like symphonies in music therapy.

My son writes fan fiction inspired by the Disney stories, and my daughter draws cartoon characters inspired by the characters.

Those vacations motivated me to become a travel planner as I obsessed about the history and amenities of the parks.

Every time we go our excitement for the park experience grows and fulfills our need for creative inspiration.

5. Because life is short!

Do you ever look back on the past wishing you made a different choice?

Many people often regret that they didn’t take time out to do what they really wanted to do, and taking more vacations is one of them.

Vacations give people a better perspective on their lives, something that is hard to do at home. The respite from vacation allows them to do several things:

  • contemplate what really matters
  • take stock of what they need to do to further their purpose and fulfill their dreams
  • analyze if something they are doing in their daily lives is really worth the effort.

Knowing that her time on earth was short, my sister took a “bucket-list” vacation to the Fiji Islands.  She took as many opportunities to see the world within the year before she died. I know she left very happy and fulfilled.

As some have said, “we only have today”. So, go out and explore the world today with your family.

Don’t short-change yourself…“seize the day”!

 

More Autism Accommodations than Ever Before

There is much greater awareness of the needs of autism are in the public consciousness. And more vacation destinations are stepping up to assist more effectively.

Cruises now cater to families with different sensory needs.  Theme parks include information and accommodations to help those on the spectrum.  And many destinations are become certified autism centers.

There are simply fewer reasons NOT to take a vacation in light of the fact that more destinations are becoming autism-friendly.

I understand that you may be afraid to take that leap into a strange environment with a child who craves routine and structure.  Here are some tips to help you face those vacation fears!

If you are looking for even MORE reasons to take a vacation, check out this article “What Taking a Vacation Does to Your Body and Brain”.

 

Experience a Well-Rounded Life through Travel

Will you “seize” the opportunity to make memories?

Do you want to forge greater bonds with your family?

Would you like to experience the potential therapeutic benefits through exploration of a new destination?

Do you and your family desire to be creatively inspired?

Are you super ready let go of the stress that is keeping you and your family from feeling connected?

If yes to any or all, then start planning that vacation…TODAY! 

 

I would love to be a part of your vacation planning!  Just click on this link for a free travel consultation!

*Source: ibcces.org

 

Trains Your Autism Family Will Love

Learn about Getaways with Trains Your Autism Family Will Love

In this article you will learn about the different events and trips with trains your autism family will love. If trains are big fascination in your household, discover how you can satisfy that passion with a trip to a railway!

 

The Magic of Trains

There is something magical about trains.  They represent history, grandeur, power and nostalgia.  They are an endless source of fascination for young and old alike.

Whenever a model-train set is present, complete with a beautifully built scenic backdrop, you’ll see crowds with their eyes fixated on every little detail.

Most children seem fascinated by Thomas the Tank Engine and Friends.  Created as a book series but popularized by videos, Thomas is a worldwide recognizable character.

When I brought the videos home from the library, my son was absolutely in awe.  Slowly, through birthday and Christmas gifts, we built our Thomas the Tank Engine character collection—Gordon, Percy and Edmund were our favorites.

But soon it became a motivational reward for good work and good behavior.  After all, I simply couldn’t buy a train every time we walked into Barnes & Noble bookstores.

Waiting to acquire and welcome another friend of Thomas into our home was a good lesson in delayed gratification.

 

Trains & Autism

Many people speculate a correlation between a train fascination/obsession and autism. I don’t know of any conclusive studies on that. But both of my autistic kids loved the show and the toys.

  • Perhaps it the constancy and dependability of trains running on a track or lining them up in a straight line?
  • Was it was the feeling of control over motion or the spinning of the wheels?
  • Or maybe it was the simplistic emotions of the characters in the movies, or the fact that they express themselves without actually moving their mouths?
  • Was it teaching them to connect a character’s actions to consequences in a more understandable way?
  • Did playing with the trains provide a sense of stability and comfort in their lives?

I would say YES to all of these, at least for my kids.

To avoid over-analyzing the reasons, I would simply state that my kids made a strong connection to these characters.

Translating what they saw in the videos to actual play with the same characters as real toys made a big impact on their development.

While my son was very particular about me playing with Thomas, I was allowed to play with Percy. (He let me set up the tracks, which I was more than happy to do.) He was pretty adamant about playing with trains HIS particular way, preferring to reenact the movie scenes rather than interact with me.

But gradually it moved from a side-by-side model of play to more two-way cooperative play. Eventually being forced to share his trains with his sister, he learned how to share and negotiate.

 

From Toys to the “Real Thing”

Then, the movie The Polar Express came out in theaters. Boy, did my kids enjoy that film!

A year or two later did I find out that a railroad depot somewhere in my state offered a Polar Express train excursion, complete with hot cocoa and a visit by Santa and Mrs. Claus.

I drove two and a half hours with my son to ride this for his birthday.  He was pretty thrilled, to say the least.  Over the years we did other train excursions.

I think by the time the “Day Out with Thomas” event became pretty popular, my son had become a pre-teen and moved on to Legos and Disney. I do wish we could have experienced that when my kids were younger.

 

Riding Thomas the Tank Engine

OPTION 1: Day Out with Thomas

If you child loves the Thomas the Tank Engine series, then actually getting to ride him would be a dream come true!

The event is promoted as “Day Out with Thomas” and requires advanced ticket purchases.  They are held from Spring to Fall and in only one or two locations across several states.

If you have to travel far, consider making it a short vacation. Check out the “Event Information” page to see what fun activities they offer besides the train-ride.

Bring your camera! (This is generally a short train ride—around 30 min.)

OPTION 2: Thomas-Land at Edaville Family Theme Park.

If riding Thomas at your local railway station is not enough, consider planning a trip to the Edaville Family Theme Park in South Carver, Massachusetts.

They have an entire land devoted to Thomas & Friends, filled with fun rides and attractions!

They even host sensory friendly awareness weekends to promote education and safety for families with autism.

OPTION 3: Visit the Thomas & Friends website

You can keep the fun alive at home when you visit the website!

The Thomas & Friends website has an incredibly array of information, including fun activities for kids, resources for parents (including using Thomas as a teaching tool), and the various Thomas-oriented events around the country.

 

Riding the Polar Express

If riding a Christmas train seems more enticing, then the Polar Express is what you’re looking for!

In my home state of Indiana, families like to travel to French Lick for this hugely popular seasonal event.  The local historic hotels offer vacation packages for young families who attend this event.

I remember seeing many children enter the West Baden Hotel wearing pajamas and carrying a stuffed toy because they just got off the Polar Express.

The train travels a certain distance, then stops to pick up Santa and Mrs. Claus who visit with each child.  Hot cocoa is passed out and each child is provided a small “gift”. (This ride generally runs 60-75 minutes long.)

 

I HIGHLY RECOMMEND RESEARCHING THE EVENT DATES AND BUY TICKETS IN ADVANCE!

Even though over the years more excursions are made available at each railway site, these tickets are often snatched up quick!

Don’t rely on getting tickets a day or two before you plan to go.

 

Other Railway Events

There are many other seasonal events that will bring delight for train enthusiasts!

The men and boys in my family took part in a Wild West Hold-Up sponsored by the French Lick Scenic Railway, brought to life by reenactors in cowboy attire on horseback and others in period clothes. Even my teen son really enjoyed the experience.

(*NOTE: the “robbers” do not actually take your wallets, personal items, or hostages!)

They also host the Easter Bunny Express and the Dinosaur Adventure Train.

To find out more about other events like these, contact the railways in your state.

In Indiana:

French Lick Scenic Railway: https://frenchlickscenicrailway.org/

Whitewater Valley Railroad: https://whitewatervalleyrr.org/

 

Final Tips When Visiting a Railway

Even though your child may like trains, behavior may still be unpredictable in a new environment.  It would be wise to prepare your child.

Create a social story about the journey. Watch videos of kids riding the Thomas train to generate excitement.  Bring along snacks and comforting sensory items.  Alert railway attendees and the conductor if necessary that you child has autism and may need extra accommodations.

It would also be a good idea to know how long the time ride will be in advance. If your child can only handle short rides, then Thomas would be a better fit than the Polar Express.

Plan to do decompressing activities after the ride (swim at a hotel, play at a playground, etc.) if the amount of people at the event seems overwhelming.

 

Rail Journeys to Explore the World

I miss those days of watching my kids play with trains.  But train excursions don’t have to end when childhood is over.

When you visit large cities, take the subway.  (Find out why many kids on the spectrum love this mode of transportation here!)

Or better yet, consider taking a train vacation across country.  You can travel by rail from the nearest major city to the western national parks. The Grand Canyon offers sightseeing excursions by rail.

There are even amazing rail vacations in Europe!

See the world traveling on trains!

If there certain types of train experiences your family will love, I’d love to help you plan a amazing vacation package!

Just click on this link for a free travel consultation!

 

 

 

 

Certified Autism Centers versus Autism Friendly

“Certified Autism Centers” Versus “Autism Friendly”

“Certified Autism Centers” Versus “Autism Friendly” Vacation Destinations

It’s hard to know the difference between destinations that are certified autism centers versus autism friendly.

When my kids were little I never even heard of the term “autism friendly”.

Whenever we traveled to visit a children’s museum, a zoo, a county fair, or an amusement park, we handled a sensory meltdown in the best way we could.  Being the one to take them places, I just dealt with it on my own.

Before we really got the chance to make the most of our time at these fun places, out of exhaustion and frustration we often just simply…LEFT.

So, when I found out about certain theme and water parks being “certified autism centers” I was extremely curious.

 

Why is Being a “Certified Autism Center” Such a Big Deal?

In July 2018, Sesame Place in Langhorne, Pennsylvania, became the first theme park to become a designated “Certified Autism Center”…and it was all over the news.

For a parent whose children have autism, it felt like a HUGE deal!  With the certification planted front and center on its website and at the parks, families with autism felt an enormous amount of support and understanding.

In a sense, it was a morale booster for the collective population of autistic individuals and their families. Finally, the world was recognizing that their needs were valued.

 

What Being a “Certified Autism Center” Means

To earn this certification, a company partners with the International Board of Credentialing and Continuing Educations Standards (www.ibcces.org).  This allows parks like Sesame Place to be recognized as adhering to a particular standard in which they provide educated assistance to those with autism.

Other facts about this credential:

  • At least 80% of the staff must complete training to understand what it’s like to have autism, including the differences in sensory awareness, fine and gross motor skills, and social and emotional awareness.

 

  • An on-site review is conducted on a regular basis to ensure greater accommodations in its layout and attractions as well as staff sensitivities to autism needs.

 

  • Detailed sensory guides must be created to let parents know what attractions the child with autism can handle (which can be downloaded and previewed before visiting the park).

 

  • The park offers sensory break rooms and equipment (such as noise-cancelling headphones).

 

  • The end goal is to provide a positive vacation experience to all families, including those with autism.

Sesame Street came out with the first autistic character, Julia, and has been a diversity advocate since the beginning.  It doesn’t surprise me that Sesame Place became the first theme park to earn this important certificate.

Aquatica Orlando became the first waterpark to be designated a “Certified Autism Center”. Just like Sesame Place, you will find resources on its website to plan your visit with your autism family.

For the full list of places that have received the “Certified Autism Center” credential, visit Autism Travel.

 

What Being “Autism Friendly” Means

There are actually many places to visit that are “autism friendly”. They may not have the “autism certified center” designation (YET), but most have a fair amount of accommodations to help autism families.

This also means that their accommodations are not standardized.  Each park has developed their own system to assist people on the spectrum. They may greatly vary in the types of accommodations they offer, so “autism friendly” means different things.

You have to visit each park website—and sometimes really dig to find the information—or call with questions.

Disney Parks

The Disney Parks, like many theme or amusement parks, offer accommodations for waiting in long queues, called the “Disability Access Service”.

In Disneyland, you get the return time for attractions at certain kiosks throughout the park (had to do a  hard “search” for this link!).

In Walt Disney World, you get the return time at the actual attraction itself (link is found under the “Help” tab).

Even though they are both Disney parks, they each have different processes. To my knowledge, cast members direct autism families to their first aid station if they need a “break room” but do not offer a special sensory room.

Dollywood

Dollywood in Pigeon Forge, Tennessee, has created a social story about its park through the website.  They built a “calming room” for those in need a sensory break.  You’ll find items like weighted blankets and a teepee.

They also include rider requirements and accessibility guideline documents to help you prepare for the trip.  Many families have been delighted to find that this park has gone the extra mile to accommodate.

 

Is One Credential Better Than Another?

Parks that are “certified autism centers” are more prepared when it comes to accommodating someone with autism.  They have gone through in-depth training.

In addition, they are more likely to accommodate in not just a systematic, park approach but also in a more sensitive, personal way.

It’s unclear how much autism training “autism friendly” parks employees receive.  I suspect those who help families like ours are more familiar with autism and more sensitive. But this scenario may not always be so consistently.

You can have a good time no matter where you go with the right preparation and a little research.  And THAT is my mission of Your Autism Guide.

Over time, I want to provide you with the right resources to best prepare your family to have a truly enjoyable vacation!

 

I would love to help you figure out the best vacation destination based on your child’s and whole family’s needs.  Just click on this link for a free travel consultation!

Ease your child into camping

Easing Your Child Into Camping

Camping under the stars

In this article I outline the the five steps to take (in order, preferably) to easing your child into the camping experience for the first time.

Making camping with autism a positive experience

It’s one thing to stay in a hotel with comfy beds and the allure of a pool.  It’s another to practically sleep on the ground with nothing but a thin nylon tent separating you and nature.

Many children on the spectrum are adamant about maintaining a nighttime routine.  One little change may lead to a meltdown.

Let me state the obvious: camping disrupts that normal sleep pattern. New “bed,” new place to sleep, new routine, new sights and sounds.  That means unpredictable behaviors.

It’s one thing to avoid camping if it’s just not appealing to everyone in the family.  But if you’re avoiding camping adventures just because you want to avoid unwanted behaviors, I urge you to seriously reconsider!

Don’t miss out on the potential to bond with family and friends in a relaxing, therapeutic environment!  By slowly easing your child into camping adventures, you will find it a much less stressful process to instill a love of vacationing in the great outdoors.

 

Learning to love camping takes time

The smell of roasting marshmallows over the fire.  The thrill of catching fireflies.  The fun of camping in a tent. Everyone is relaxed and happy.

That idyllic picture of camping is not often reality.

We introduced our young kids to camping jumping in head-first. We started off great.  We fished and cooked and played on the playground.

But by 5 AM the next morning my 5-year-old daughter was crying inconsolably. Nothing seemed to calm her down.

Fearing wrath from the entire campsite, who were all still asleep, we packed up our equipment with rapid speed. By 7 AM we had left the campsite with very cranky kids.

We vowed not to try this again for a while.

And we didn’t…. something I regret.

Even with the most seasoned and experienced campers, things don’t always go as planned.

Sometimes an important item is left at home. Your gear doesn’t set up properly.  Someone doesn’t sleep well.  Someone is complaining about the food.  Someone can’t stop crying.  Mosquitos are sucking the life out of you!  UGH!

And then you start thinking… Why didn’t we just stay home?!

Actually, that’s not a bad idea.

 

“Wean” into camping

Maybe, like mine, your own childhood memories are filled with wonderful camping expeditions with your family. Maybe, like me, you can’t wait to share that love with your own kids.

But camping can feel like a very strange and scary thing to do for an autistic child who may become terrified when his or her daily routine is thrown out of whack and comfort zone severely challenged.

My kids were on the verge of getting their autism diagnoses when we first camped. Once I became familiar with autism, my child-rearing philosophy changed.  I realized (many times the hard way) that adapting my kids to new things needed to be set at their own pace.

And, yet, I still needed to motivate them enough to try new challenges. I had to be a little more patient and “wean” them into unfamiliar experiences.  If I had known then what I know now, we would have introduced them more gradually to idea of camping and helped ease them into camping.

If the idea of camping can be introduced in “digestible, bite-size chunks”, then the actual experience away from home can go a little more smoothly and become something your child will actually enjoy.

 

5 Steps to Easing Your Child into Camping

I recommend that you do these steps in order and as long as necessary to feel comfortable before moving to the next one.

 

1. Set up camp in your child’s bedroom.

What a fun way to introduce the idea of camping than in your child’s most comfortable place!

I always wanted a bed-fitted tent when I was a child, but I couldn’t convince my parents to buy one. So, I set up blankets over my bedpost and invited my sisters into my “tent” to play games and read stories.

Get your child comfortable sleeping in a tent in his or her own bed, whether it’s an actual bed-tent or something created. Maintain your normal bedtime routine. Bring in comfortable, familiar items (favorite blanket, toy or sensory equipment).

Use this time to talk about it as “camping” in order to associate it with a positive, comforting experience. Practice using flashlights.

*(If your child is co-sleeping with you, consider setting up something beside your bed.)

 

2. Set up camp in your living room.

This can be done during the day on a pretend-play basis at first. Keep a small play tent up permanently if you have room.

Do what you would do in a real camping experience: pretend sleep (or take real naps), pretend building a campfire, pretend cook, pretend fish, etc.

Include favorite comfort sensory items, like a soft or weighted blanket, fidget spinner, or a stuffed toy.

Watch videos of people camping to show what it’s like. Find or create your own social story of the outdoor camping experience so your child can associate fun “home camping” with camping in a new place.

When your child is ready, set up an overnight “living room camping” in which everyone in the family is involved.  It could be included alongside your own weekend routine (like a movie or game-night) but call it “inside camping” when it’s time to sleep.

Share your enthusiasm with your child—make it fun!  Do this a few times until you think your child is ready to try a new place to camp.

 

3. Set up camp in your backyard (if possible).

Moving your camp from indoors to outdoors can feel like sudden transition, even though you are still at home. There might be some anxiety about the darkness, being outside, hearing different sounds, etc.

Consider setting up a tent outside during the day for pretend-play first.  Let your child explore the fun of outside-camping on his/her own.

If you can set up a campfire in your backyard, begin to introduce how to behave around a fire and perhaps cooking over a fire during the evening hours. Start introducing camping tools, like hot dog forks.

When you’re ready, have the family move to the tent to sleep. Be sure to include the same favorite bedtime routines and sensory items. Even if your child can only sleep half-way through the night outside, it’s a big step!

Keep trying until you make it through the night.

 

4. Set up camp at a family or friend’s house.

At this point your child should be more comfortable being outside. But now it’s time to move to another place away from home.

I suggest possibly setting up camp in the backyard of a beloved family member or friend as a way to transition to a real campground experience. Maybe grandma or grandpa would like to host your family’s camp-out and be willing to welcome you in the house in the event your child becomes anxious.

Remember, same routine…same comfort items.

 

5. Set up camp at a nearby campground or state park.

When ready, consider staying somewhere close by for one night, say…maybe less than an hour away (if possible).

Some campgrounds require more than one night minimum on holidays, so if you’re not ready for more than one night you may have to go on non-holiday weekends.  That’s probably best to avoid the crowds.

Conduct some research into the campground. Does it have nice amenities that will allow your child to feel comfortable and have fun? Fishing, swimming, playground, hiking, outdoor games?

Be sure to include the familiar things from the previous camping experiences at home, including favorite meals, bedtime routine and personal sensory items.

The fact that the family is sleeping together in one tent or camper will provide some comfort in this new situation as well.

 

Small Steps Lead to Giant Achievements

While camping may be a hard transition for your special needs child, it will foster in him or her a love of nature as well as some incredible life skills.

When children overcomes their fears, they often feel a burst of self-confidence. This leads to a greater willingness to try new things beyond their comfort zones.  Camping provides many new experiences to build self-confidence.

Besides vacations with family, one of the best ways to learn life skills and build confidence while camping is participating in a scouting organization.

My 17-year-old son has camped so many times with his Boy Scout troop I lost count. Simple weekend camp-outs led to week-long adventures.

When he was 14-years-old he spent several nights along lakesides at Boundary Waters in Minnesota.  This past summer he explored the iconic Black Hills in South Dakota.  His ultimate camping adventure was sleeping on a sailboat for a week in the Florida Keys.

Because he was comfortable enough to sleep outside away from home and family for a week at a time, he got a job at the local scout camp.  He now has gained valuable employment skills.

Apart from therapy, Scouting has provided some of the greatest social and developmental benefits for my autistic kids. Read my article “Why Scouts BSA is Terrific for Autistic Youth” to understand how involvement in Scouts leads to incredible personal growth.

 

Easing into Camping is the Key to Self-Growth

To access the potential development of life skills and self-confidence, consider camping!  Hopefully, the five steps I have outlined of easing your child into the camping experience will help significantly in achieving those goals!

The trick is to maintain a sense of familiarity by using similar routines and comfort items from home and transfer the camping experience across different settings—from inside to outside and from home to another place.

Try to keep the experience positive all the way through the learning process to reinforce that camping is a “good thing”. Push limits but recognize when enough is enough.  It may take weeks, months or even years…but you’ll get there!

For more information about the sensory and autism-related considerations of the camping experience, read my article “Camping with Autism“. You will also find helpful tips on campers to help you decide which ones is most suitable for your needs.

Above all, have fun!!  The whole experience gets easier the more times you try it!

 

 

If you think your older child may be ready for camp experience for one night or several nights away from home, check out this very informative article by the Indiana Resource Center for Autism.

 

 

 

 

 

 

 

 

 

 

 

 

 

Before Going to Walt Disney World with Autism

 

What to do BEFORE going to Walt Disney World

If you are dreaming of a trip to see your family’s favorite Disney characters, there are some things to do before you actually go to Walt Disney World.  In this article you’ll find helpful tips to ensure a good trip with autism!

A Disney Obsession

My kids really enjoy our vacations to Walt Disney World.  No, I mean, they LOVE going to Walt Disney World—as in, OBSESSED!  Having memorized many Disney movie scenes and collected various Disney paraphernalia, they get to live out these films in “real-time”.

Since both of my teens have autism, they perceive time, space and the social realm differently.  They often need more time and explanation to process certain input, especially auditory.

While many parents like to surprise their kids with a grand “Disney vacation reveal” the day before they go, I think my kids would flip out (and not in a good way) if I did this for our first trip. Despite their love of Disney, they need extra supports to thoroughly enjoy their time.

Maybe your family is like mine.

I’ll tell you from personal experience…a little preparation goes a long way to feeling at ease and thoroughly enjoying your vacation at Walt Disney World.

Top 10 things to do BEFORE you go to Walt Disney World

1. Download the Walt Disney World park maps and study them together as a family.

This is our favorite phase of trip planning—dreaming of new attractions and snacks we’d like to try as well as new characters we’d like to meet. When everyone’s input is valued, it creates a sense of personal investment and family bonding in the process.

2. Watch the movies or read books associated with the attractions.

This REALLY helped my daughter: when she was six she climbed my husband like a petrified cat inside the stretching room of the Haunted Mansion ride and refused to go on again that trip.

After watching the movie about the ride, she became invested into the story and the characters. She now wanted to see where it all “happened”, summoning the courage to go back on the Haunted Mansion ride!

3. View website pictures and videos of the resort where you will be staying.

Seeing what the resort has to offer, such as the pool, arcade, dining, room décor, and on-site entertainment (like movie-nights and campfire s’mores) builds excitement and will provide a sense of familiarity when you arrive.

4. Download the MyDisneyExperience App. 

You can show your family all of the Fast Pass+ attractions and meal reservations on your phone before you go and during your trip.

It helps those who are exceptionally time-obsessed (like my son) and keep asking to see what’s next…sort of like a digital visual schedule.

5. If your family members are not used to buses that take guests to the parks, try riding one in your town or watch videos.

Play pretend at home: line up chairs and act out how people behave riding a bus.

If you stay at a Disney resort and taking a bus is out of the question, you can always take your own car to the parks (parking is free for resort guest). Or, you can take an Uber, Lyft or Minnie Van as your own private transportation.

6. Practice for the experience at home.

If nearly a week-long trip seems daunting, try local expeditions first.

Take your family to local festivals, sporting events, theme parks or carnivals. Some young children may need to be “eased into” large crowds for long periods of time to get used to the sensory experience.

Take short staycations to get used to staying in hotels.

How your autistic family members do in these settings will give you a much better sense of what kinds of accommodations are needed at Walt Disney World. Develop appropriate sensory-behavioral plans in the event of a meltdown.

7. Map out quiet places for downtime in the event of sensory overload.

One nice place is the circus tent with tables and couches by Pete’s Silly Sideshow (Fantasyland). Tom Sawyer’s Island might be a nice, quiet place to “unwind” and/or stim to self-regulate.

Consider taking a mid-day breaks from the parks at the resort to swim or nap (even older family members benefit).

Planning to rest for a whole day in the middle of the week is extremely helpful to avoid exhaustion before the vacation is over.

8. Print out your daily itinerary schedule to take with you into the parks.

Put the days and times for Fast Pass attractions, Table Service meals, parades, fireworks, shows, etc. (You can find the anticipated events calendar here.) Be sure to include places to take breaks and the First Aid station (especially helpful if an older adult needs bathroom assistance).

Feel free to add pictures into the form of a visual schedule and laminate it. You can even attach them into a mini-book or key-ring.

9. Make social stories for different aspects of your trip.

Consider making one for each park, the resort, transportation options, dining, buying merchandise, etc. as you feel is needed. These may take some creativity and time to make.

But for some that already rely on these to make it through their daily schedule at home, these will be incredibly beneficial for those who have a hard time with routine interruption in a new place.

10.  Create a sensory packing list.

Start gathering the tools needed not only to prevent sensory overload (i.e. sound-reducing headphones) but also in the event of a meltdown (i.e. food, toy, sensory soother, fidget, etc.).  Brainstorm items that would be good diversions to help with waiting (i.e. electronic games).

Other important items to bring in advance (that many don’t often consider) are autograph books and retractable Sharpie pens. Unbeknownst to me, the trip highlight for my TEENAGERS was meeting the characters and getting their autographs.  I thought they outgrew this, so I didn’t anticipate packing these.

The long lines for meet-n-greets didn’t seem to bother my autistic kids as much as long ride queues with nothing much to see.  Watching other park guests meet and take pictures with their favorite movie characters only fueled their own excitement.

One more bonus tip!

Perhaps one of the most important things you can do before your trip is to review the Walt Disney World policies regarding disability accommodations.  Be sure to download their Planning a Trip to Walt Disney World Resort: A Resource for Guests with Cognitive Disabilities including Autism Spectrum Disorders (ASD).

So, there you have it!

With the right planning before your trip, and knowing your child’s sensory needs and accommodations well, you will be on your way to creating long-lasting memories together at the most magical place on earth!

 

I would love to help you plan a magical Disney vacation!  Just click on this link for a free travel consultation!

Sensory solutions for a Disney park trip

Sensory Solutions for a Disney Park Trip

Solutions for Sensory Needs during a Disney Park Trip

In this article I will break down the different challenges and provide solutions for those with sensory needs when they take a trip to a Disney park.  

Take my autistic kids to Walt Disney World?  Are you CRAZY?!

You mean, take someone who has meltdowns when overloaded by crowds and intense sensory stimulation to a place that is crowded and full of intense sensory stimulation?  HA!  Very funny… 

Actually, I am NOT kidding…not one bit.

Okay, just hear me out!

Maybe you think a trip to the see the beloved Disney characters and princesses is out of the question. Or maybe you’re considering resigning yourself to the fact that a trip to Walt Disney World will be just like any other trip to the grocery store where the meltdown is inevitable…

…and you’ll just deal with it.

 

But there is HOPE!

Many people–children and adults alike–have gone to Walt Disney World and had a wonderful time!

The trick is…know your loved one’s sensory needs and triggers well! 

Knowing what kind of experiences your autistic loved one can handle in other settings will help you prepare for the very sensory-stimulating environment of Walt Disney World.

 

Sensory Challenges

Is your loved one hypo-sensitive (seeks out) or hyper-sensitive to (avoids) large crowds, visual stimulation and noise?

Even if someone that craves stimulation finds Disney parks to be a dream-come-true, he or she may suddenly have a meltdown when tired.

Here is a breakdown of things to do by the types of sensitivities and the sensory solutions for a trip to a Disney park:

1. For SOUND sensitivity…

This is perhaps the most common sensitivity among those with autism.

Bring soothing tactile devices and sound-barring headphones (for those loud parades, attractions and fireworks).

Map out places where there are quiet places to recharge (Guest Relations can help with that).

2. For TOUCH Sensitivity…

Those that crave physical interaction will LOVE the character greetings. Even Tigger will hug you, the parent, without warning!

If your loved one doesn’t like strangers touching him or her, alert the character handlers (regularly clothed cast members who stand beside the costumed characters). Tell the about his/her tactile needs, particularly whether light touch and a hug is okay or would prefer no touch at all.

3. For TASTE Taste Sensitivity…

Get familiar with the restaurant menus at the parks.

Disney is very good about accommodating diverse dietary needs. But it’s a good idea let them know in advance at dine-in restaurants through the My Disney Experience app or by calling (407) WDW-DINE.

At quick service ask them what is available. (You can always recruit your personal travel advisor/planner like myself to help you with this.)

Another option is to bring your own meals in a small cooler (no glass bottles).

4. For SMELL Sensitivity…

Certain attractions will have artificial scents that add to the immersion-factor.  The most common is a low-intensity water scent on boat rides. But a few attractions give off more potent smells. (Soarin’ has “pleasant nature scents” while Journey into Imagination with Figment at Epcot has a stinky scent).

Of course, the most common outdoor scents will come from food.

If your loved one has an absolute aversion to certain scents, it’s good to know where in the park they come from (feel free to ask questions below in the comments section).

5. For SIGHT Sensitivity…

Is your loved one extremely sensitive to certain visual elements? Are strobe-light effects potential harmful?  Certain attractions have intense flashing lights (Flights of Passage at Animal Kingdom and Space Mountain at Magic Kingdom).

If darkness is a problem, as many attractions are dark rides, consider having your loved one watch “point-of-view” videos of the rides in order to see if they would be willing to try it.

 

Other Special Needs Challenges

For those with LANGUAGE challenges…

Does your loved one have issues communicating through words? 

Bring a visual schedule or augmentative communication device so he or she can adequately express his or her needs.

If your loved one is non-verbal and gets separated from you, it would be very wise to have a plan in place to locate him or her.

For those with SAFETY AWARENESS challenges…

Is autistic loved one a flight risk? 

Consider having a bracelet, lanyard, sticker, badge or a GPS Tracker (like Angel Sense) with your name and phone number in case he or she gets lost. This will greatly help Cast Members locate your loved one.

Consider telling Guest Relations know this is a potential risk when you get the DAS.

Is your loved one prone to full body meltdowns around a mass of people? 

Any cast member will help you with these issues, including helping you find an out-of-way place to calm down and getting the word out to other cast members that your child is missing.

The First Aid station is an option (located between Crystal Palace and Casey’s Corner restaurants near the Main Street and central hub).

For those with BODY-SPACE AWARENESS challenges…

Does your autistic loved one have a hard time understanding the social or safety impact of standing too close to others?  

This is a hard one! Everyone stands so close to one another in lines that the normal “arms-length distance” rule between people flies out the window.

We had to constantly pull our son back because he either stood a few inches too close to people (one person told him to “get back!”) or he is so determined to get to that ride that he practically cuts people in line.

When verbal reminders are not enough, a visual cue or a potential reward for keeping a good distance from others may be warranted. Sometimes having our kids stand behind us and not in front of us helped. Then, it’s up to the people behind THEM to stand an adequate distance.

For those susceptible to MELTDOWN TRIGGERS…

What are situations that bring on a meltdown? 

Everyone, not just those with autism, has their own “tipping point” before they go into “shutdown mode”.

Don’t rush your autistic loved one all over the parks.  You may be risking a meltdown by trying to get all the rides done in one day—most people without sensory can’t do that.

Waiting in line for more than an hour can be a meltdown trigger. Sometimes having something to occupy your child (videos/games an iPhone) may be helpful.

But having the DAS will be a lifesaver, allowing you to wait “outside the line” and do other things (watch a parade, meet characters, eat, etc.) before riding the attraction.

For those with TRANSITION challenges…

Does your loved one have trouble grasping a sense of time, waiting, or moving from one event or setting to another?

If a child has NEVER been to Disney before, they have no idea what to expect. If they LOVE Disney, then the familiarity and associations between movies and rides might be enough to help them get through the park without much prepping.

 

Prep Your Child Before Your Disney Trip

However, if a child has even minor issues moving from one task or place to another and is rigid in their use of time in the “real world”, then I STRONGLY SUGGEST that you prep them about the parks before travel!

Watch attraction videos.

Creating social stories about your overall trip or individual park days.

Have them help plan places to visit and dine.

Watch Disney movies and tie them in to certain attractions.

Study the park maps together.

 

Take Advantage of Disney Accommodations for Autism

Walt Disney World and Disneyland have a wonderful accommodation in place to help with those who have a hard time waiting and understanding time.

The Disability Access Service—or the DAS—serves to allow those with cognitive-sensory differences like autism to wait “outside the line”.  You can get that at any park Guest Relations.

Even though this is incredibly helpful while at the parks, it’s still a very good idea to establish a sensory plan BEFORE traveling. That way,  you can pack the items needed and know exactly how to handle any sensory issues that suddenly arise in the parks.

These sensory-based solutions will ensure everyone’s safety and peace-of-mind for a more relaxing and memorable trip to a Disney Park!

I would love to help you plan a magical Disney vacation!  Just click on this link for a free travel consultation!

Why Our Autism Family Loves Disney

Why Our Autism Family Loves Disney

A Special Place in Our Hearts

There are many reasons why our autism family loves Disney so much.

Just like every other Disney-loving family on earth, we like it for the same reasons: magical stories, fun songs, cool merchandise and a place to meet beloved Disney characters.

For us, as well as for many other families who have autistic children, Disney means much more.  It’s significance stretches far beyond a personal hobby.

It is a tool to motivate person growth…

…the inspiration for creativity and self-expression…

…and respite from a world drowning in a lack of faith in one another.

Disney is a major part of our family’s journey to understanding autism, meeting its challenges, and using it’s gifts toward a fulfilling life.

 

Classic Disney Love

Hard to believe, but Mickey Mouse is 90-years-old. 

His birthday was celebrated by young kids whose generation is perhaps the 6th one to live through a world filled with Disney. 

My baby-boomer mom remembers tuning in every Sunday night to Uncle Walt. She would watch enthralled as he stirred up excitement about his Disneyland project and TV shows. 

In the 80s, I was raised on the Classics (Snow White, Bambi, etc.) when VHS home video tapes came out.  Just like everyone else, I grew up having a fairly stable appreciation for the Disney movies.

But I had nothing in the realm of a full-blown Disney obsession.

And then I had kids.  With autism.

 

A Disney Education

Naturally, like most parents, I would buy the Disney DVDs to watch with my young kids.  It was comforting to know that our love of the movies would be shared and hopefully be something over which to bond throughout the years.  

But my kids’ appreciation for the films took on a totally different meaning. 

My son’s story…

My toddler son would stand in front of the TV and mimic the characters, both in action and language.  Then, with the remote firmly in hand, he would hit play, pause, rewind…again and again. 

I started getting pretty concerned that TV watching would be a dysfunctional activity, turning him into a parrot without the ability to conduct two-way speech interaction. It was hard enough to get him to mimic ME.

But then around the age of 5, he clicked on the closed caption feature.  I realized that by doing this he could follow along with the language.

He actually started speaking and understanding language better by listening to the dialogue, following the visual scene, and then reading off the words. 

Huh!  Perhaps it wasn’t so dysfunctional after all, because now we could understand one another.

My daughter’s story…

My daughter was different.  Both receptive and expressive language have always been harder for her.

She would also want full control of the remote…play, pause, rewind…play, pause, rewind.   

But she was more engaged with the visual aspects of the film.  She often paused much longer to study the film, often to find something funny about the way the characters’ faces froze on screen in very contorted ways. 

Then she had me want to draw them out.

For a while I did this for her. My skills weren’t fantastic, but I was proud of a few.

But at some point, I had enough.  I could not spend hours drawing for her. 

“You do it!” I told her.  Begrudgingly, she did. 

Thus, her passion began for drawing movie figures.  To this day she draws at least 10 different unique characters and scenes, every single day. 

This helps her understand emotions, social intent and language much better than just listening to me drone on.

Disney was the tool to overcome several autism-related challenges. This is a big reason why our autism family loves Disney.

Disney became a life-line connecting me with my kids in ways I hadn’t imagined.

 

Disney Therapy

For them, watching the Disney movies meant learning language and social interaction skills.

Speech therapists often used Disney characters and themes to motivate my kids to learn new skills. Often they would bring out Disney-themed games to teach certain aspects of speech and sentence structure.

Later, my son honed his public speaking skills by role-playing as a Disney park tour guide.

His therapists posted pictures of the Walt Disney World attractions around the hallways. He practiced one-way speech along with two-way communication through Q&A exercises.  Through this he learned how to appropriately interact with others through a passionate topic.

Disney was the motivational tool to promote social-developmental growth in my autistic kids.

Discover the power of Disney to open up worlds for a young man with autism: “

Life, Animated: Disney Lessons and Autism “.

You can find out more about him through the documentary.

 

Ready to Take the Next Leap

I didn’t plan on loving the Disney so much myself. That is, not until we took a Walt Disney World vacation.

It took nearly a year convincing my husband that we could somehow manage to have a good time, despite the fact that I was very unsure myself. 

My kids loved going to science centers, zoos and other family-oriented places. But if something didn’t go their way or they were getting sensory overload, they had “problematic behaviors” such as:

  • ·       throwing themselves on the floor
  • ·       screaming
  • ·       not following direction
  • ·       not able to be redirected
  • ·       running off, etc. 

I had to constantly monitor their movements.  What always promised to be a fun-filled day left me totally exhausted. 

Would going to Walt Disney World possible any different, perhaps even worse?

Then, a very resourceful friend told me about the accommodations that Walt Disney World offered at its parks.  With this information, and the fact that my parents would also go to the parks with us to lend a hand, we summoned the courage to book the trip.

We decided to add extras to our trip, such as character dining and Bibbidi-Bobbidi-Boutique for my six-year-old daughter.  With fingers-crossed we hoped that living out the Disney movies in the attractions would ensure success.

 

The Magic of Meeting the Mouse in Person

Boy, did it ever! 

My kids behaved so well considering the sensory stimulation that I could hardly believe it. 

I suppose that if Disney worked before at home as a motivational tool, it made sense that they did much better than expected at the “home for Disney”.

Sure, we were all exhausted after long park days.  But having grandparents along who understood my kids’ special needs well was immensely beneficial.

We have since taken more Walt Disney World vacations.  For every trip my kids step out of their comfort zones to try more thrilling attractions.  And their obsession with Disney just grows.

Another reason why we love Disney so much?

Experiencing Disney magic at the park enabled my kids to build self-confidence and self-help skills.

 

Taking the Disney Magic Home

Now that they are teenagers they have developed artistic skills based around their love of the movies and books. 

My son writes fan fiction based on the Kingdom Keeper series.

My daughter creates comics based on her own original take on some Disney characters. 

Vacationing at Walt Disney World is not just a place to have fun. It inspires creativity and family bonding long past our trips. 

That “magical” feeling about being at Disney drove me to stay connected to other moms through various social media sites.

I especially was drawn to other families with special needs looking to plan Disney vacations.  I loved being able to give them advice and encourage their dreams. 

In addition, I dove deep into learning more about the history of Disney parks and all they have to currently offer. 

My heart led me to apply as a travel professional, which is what I am today.

For this I am forever thankful we stepped out of our comfort zones, pushed past our fears and leapt into a new experience. The benefits have been life-changing.

Our love of Disney has inspired us to stretch ourselves developing new skills in new pursuits.

Experience the Magic of Disney for Yourself

So many families with autism have created memories and stronger bonds during their trips to Walt Disney World because they did the same.

They have also witnessed amazing growth in their special needs while on a Disney vacation. Some even progress faster while they visit the parks than weeks in therapy.

Is it time you did, too?

Experience the “Disney magic” on autism for yourself!

It’s especially important for families with special needs to plan strategically based on the needs of your autistic child or adult.  With solid preparation you can mitigate the potential for problems that may occur during your trip. 

Let me guide you toward experiencing the magic. I can offer offering beneficial special needs planning tips and create a customized Disney vacation for your family.

Contact me for a free consultation!

May your vacation wishes come true!

 

THE MYSTERY OF THE “MEDICAID WAIVER”: CASE SOLVED!

For most parents with a newly-diagnosed child on the autism spectrum, one of the most common questions asked of them—and the most common responses provided to this question—goes as follows:

 

“Did you get your child on the Medicaid Waiver?”

 

“Uh…what’s that?  I have no idea what you’re talking about.”

 

THE MEDICAID WAIVER RIDDLE

You see, most of us who entered into the autism world through the school or medical system gateways may not have been given all the fine details about where to go for help in supporting our children with autism as they grow up.

 

Now, in their defense, both of these systems have a lot of people to serve in the one area they do best.  We can’t expect them to be solve ALL of one child’s issues.  Some families who go through a clinic that specializes in autism may have been notified of this support, but many remain clueless. I most certainly was.

 

Enter in another autism mom.

 

It was she who made me aware of the type of help that comes with the waiver. I remember looking at her incredulously. She rattled off the kinds of therapy assistance and parent support under the waiver…

 

RESPITE + MUSIC THERAPY + RECREATIONAL THERAPY + SPEECH/LANGUAGE THERAPY + OCCUPATIONAL THERAPY + BEHAVIORAL THERAPY + MORE =

MIND BLOWN!

Say what?!  What is this mysterious thing called the Medicaid waiver? I must crack this code!

 

Many parents with newly-diagnosed kiddos often have a knee-jerk reaction in trying to get help for their kids. That includes spending themselves into debt in search of a magical solution to autism. ABA is often suggested as the first go-to therapy, since addressing the “problematic behavior” of their child in the home, school and public places is foremost on their minds.  Many people, especially autistic individuals themselves, have a problem with ABA and need alternative solutions to therapy.  This is where the waiver comes in.

 

With an autism diagnosis, your child can qualify for the Medicaid waiver.  This means your child (and you as a parent) benefit from the aforementioned government-paid-for resources—FREE TO YOU!

DIVING INTO THE “WAIVER WORLD”

During most of the 20th century, many people with autism were institutionalized—hidden away from the rest of society.  Researchers in the 1980s found a disproportionate use of Medicaid funding, instances of abuse, and a general lack of quality of life for most.  Many did not actually need to be institutionalized.  With the right kinds of support, they could integrate well into the community. They could live at home or in group homes with adequate supervision, earn self-worth and respect that comes from employment, and feel love and support by their friends and family.  The Home and Community-Based Services (HCBS) Waiver program was born.

 

The goal of the HCBS is to help those with developmental disabilities learn to become as independent as possible as an adult and have a meaningful life in the community.  The “waiver” means to “waive” the need for institutionalization.  It also generally means that the parent’s income is “waived” in order for their autistic child under 18 to qualify for Medicaid.

 

Both of my kids have autism. Therefore, both of them have the Medicaid waiver. Our income would be considered too high to qualify for typical government welfare assistance. But the Medicaid waiver allows my kids to not only have the therapies and services listed under the HCBS waiver program but to also have the Medicaid insurance for standard medical needs.

BONUS!!

For those without good family insurance through a job, this is a lifesaver.  For us, we have decent insurance through my husband’s employer, so Medicaid is used as a secondary insurance to help with expenses not totally paid by our own.  Certain therapies like speech and language are generally run through Medicaid and not the waiver itself.

 HOW DO I APPLY FOR MY CHILD?

Actually, the real question should be “WHEN do I apply for my child”.  The answer is: “RIGHT NOW!” Like, as soon as you get that diagnosis! These services help every age, from small child to adult.

 

SIDE NOTE:  I live in Indiana. So, I will be discussing the process of applying in Indiana. It is one of only a handful of states that has a waiver program specifically for autism. Other states include autism within a broader developmental disability category.  EACH STATE USES ITS MEDICAID FUNDS DIFFERENTLY. This means the application process, waiting period, and the benefits received will be a little different. 

Check out Medicaidwaiver.org for state-by-state information on the Medicaid waiver program and how to apply.

Sad to say, you don’t just apply for the waiver and then automatically get help—this is government we’re talking about here.

 

Depending on your state, the wait to first be approved and then the wait to actually receive services can be a total of several months to a few years.  (In Florida or Texas, it could take up to 10 years or more!)  The time I first applied for my son until the moment he received funds was 7 years.  For my daughter it was 2 years. Now, it may take families less than a year.  (It seems like enough parents in Indiana got fed up and fought to have those funds available sooner.   GO PARENTS!)

 

In Indiana, the “WHO” you must contact is your local area office of the Bureau of Developmental Disabilities Services (BDDS). Here are 10 major steps in the waiver process for families with a child with autism under age 22:

  1. BDDS is your POINT-OF-ENTRY to the Medicaid waiver process. They will send you an application. Confirmation from your physician (MD or DO) that your child has autism is required.
  2. Once you have submitted your application, you will be contacted to set up an interview. Bring your diagnosis paperwork from your child’s doctor, school, therapist, etc. to help determine the Developmental Disability (DD) of your child. Most likely your child will qualify for the Family Supports Waiver (FSW), but in special cases the child may need more support under the Community Integration and Habilitation (CIH) waiver. An intake specialist will complete a preliminary assessment for Level of Care (LOC) to figure out what kinds of support services your child may need, based on if the disability…
  • Is similar to Intellectual disability
  • Originates before age 22
  • Will continue indefinitely
  • Causes functional limitations in 3 major areas of life (speech, executive functioning, etc.)
  1. Your child will then be placed on a waiting list. After a period of time, you will then be “targeted” by BDDS with a letter in the mail. DON’T LOSE IT! This means your child has been approved for services. At this moment in time, your child does NOT have funds to start services…yet.
  2. You will confirm with a reply letter that you still want waiver services. A BDDS intake coordinator will follow-up with a current LOC.
  3. Take your “target letter” from BDDS to your local Medicaid office to apply for Medicaid. This is the FUN part!  (Haha, just kidding). They will require you to submit all kinds of lovely proof of income.  If you make too much, YOU will be denied. But that letter will allow your CHILD to have Medicaid insurance.
  4. Once you apply for Medicaid for your child, now you have to go to Social Security Administration to apply for SSI with the BDDS target letter. If you make too much, your child will be denied income benefits.  (For us, we knew we would be denied; this was a required formality as part of the process.).
  5. At this point…DON’T GIVE UP! YOU’RE ALMOST THERE! Applying for government help is mind-boggling insanity, but it’s so worth it in the end!
  6. Sooner or later, BDDS will send you a “pick-list” for someone to manage the funds allotted to your child ($17,300 a year as of 10/17). This means you can start to access services…YEAH!  This case management service is a vital part of the Medicaid Waiver program. In Indiana there are several from which to choose. This “open market” has improved services for waiver individuals as they must compete for your funds.  Ask about their experiences with the waiver and how they train their case managers.  You can always change case management companies if one doesn’t work out.
  7. From now on, your waiver case manager will be your regular POINT-OF-CONTACT. This person will conduct a thorough assessment of your child’s needs, strengths and interests.  They can recommend what types of therapies but may not openly recommend a certain agency.  They provide lengthy lists of agencies for each type of service, so you’ll have to take some time to assess the best person and agency with whom to work.
  8. You choose—and then intimately work with on a weekly-monthly basis—the direct care service agencies that provide respite, therapy and other services. I have loved working with these therapists, and my kids have developed trusting, productive relationships with them.

 

With the Medicaid waiver, you are now part of a TEAM that supports your child. Your waiver case manager and agency coordinators will meet at your home (or wherever convenient for you) on a quarterly basis to make sure goals are being met for your child.

 

ALWAYS KEEP IN MIND:  You have the right, at any time, to alter the course of waiver services if things don’t work out, such as dropping or adding certain therapies, agencies, and workers.  Also, you’ll be limited by a yearly budget, so your child can’t “do it all”.

 

In our kids’ early years, we needed more respite. Later on, we dropped respite hours and added therapies best for our kids when they became more available in our area (like recreational and music therapies).

SOLVING THE MYSTERY: CASE CLOSED

Hopefully, I have provided answers to your questions about the Medicaid waiver and how it can help your child with autism. I do recommend that you create an organizational system of some kind to keep track of the paperwork and offices involved.  Congratulations…you are now officially a “case manager parent”! Join the club!

 

Our lives have been positively impacted by the people we have met through the waiver, and we are tremendously grateful for the support this waiver provides. My kids loved hanging out with their respite helpers. They have thrived under the direction of their music therapist, learning new instruments and even composing music!  And my daughter has loved spending time outdoors with her recreational therapist.

 

Despite the frustrations that come with dealing with government bureaucracy and waiting for years in anticipation, I encourage you to push through for your child.  Your time and efforts will be a worthwhile investment in his or her future.  Our lives have been—and will continue to be—blessed by it.

 

UPDATE: I wanted to add a few more details about the benefits of the waiver that few know about:

  1. You can apply for the America the Beautiful Access Pass, which allows a person with autism and 3 of their guests to get into the national parks and other federal sites for free for a lifetime.  It also includes deep discounts on camping and other recreational activities (i.e. 50% discount on camping sites in the Smokey Mountain National Park).
  2. You can apply for special discount programs that comes with having Medicaid, such as the Access Pass Program that allows those with the waiver and their families in Indiana to get in to certain museums at a minimal price (i.e. the Indianapolis Children’s Museum costs $2 per person).
  3. There are other benefits with having Medicaid such as a discount on Amazon prime membership.

Check to see if your state has these types of programs associated with the waiver. Other benefits may be strictly based on financial need and those who qualify for SNAP/TANF/SSI.  Many autistic adults can access these benefits once they turn 18 and qualify for SSI.

Life, Animated: Disney and Autism

LIFE, ANIMATED: Disney Lessons and Autism

The World of Disney Meets the World of Autism

This article is about the documentary”Life Animated” and the Disney lessons that apply to reaching those with autism.

What happens when you merge the world of Disney with the world of autism?

If your autistic child loves Disney like mine, then read on.

You will discover valuable insights about the power of using the lessons from Disney stories to forge a connection between the inner world of autism and the wider world beyond ourselves.

Disclaimer: 

I am NOT a movie critic. 

I viewed this film from the perspective of a parent who has children with autism (aka, the “intended viewer”).  Rather than critique the quality of the film, I observed the lessons both the parents and their son learned over the course of their autism journey.  I found new insights as well as emotional support by relating my own experiences to theirs.

I hope you can, too.

 

INTRODUCING…THE SUSKIND FAMILY

From the beginning of the documentary Life, Animated: A Story of Sidekicks, Heroes and Autism, it’s easy to see that Ron and Cornelia are your pretty typical American parents.

They work hard to support one another. They nurture their children to achieve developmental milestones.

And they record their journey raising their kids through video, photos and writing.

But when their youngest son turned three, their world turned upside-down.  “Owen vanishes,” says Ron. His motor skills deteriorated, he was no longer sleeping well, he lost eye contact, and his language processing broke down, only reciting “gibberish”.

“Someone kidnapped our son…”

Owen had AUTISM.  

The painful devastation of receiving the diagnosis for the first time was still very evident on his father and mother’s faces, even though Owen is now in his 20s. Their doctor worried he would never talk again, who told Ron this problem was “out of my league”.

It hurt me to see their longing for the way he used to be.  The idea they could still CONNECT with him seemed gone.

TURNING A PAGE…

It’s clear in the opening scenes of the film that adult-Owen understands and communicates very well with those around him.  To go from “not talking at all” to expressing himself in full, descriptive sentences obviously means…

SOMETHING WORKED! 

After receiving the diagnosis, they did not resign themselves to the possibility Owen would never improve.

But despite four years of therapy, Owen was still exhibiting “echolalia” (a repeated pattern of speech that mental health professions believe to be dysfunctional).  It was not certain that he understood the meanings of what he said.  His parents were starting to believe that wouldn’t change.

Until… “Juicervoice”.

DISNEY TO THE RESCUE!

Owen loved watching Disney movies.  It was the only way to keep him calm and happy in an overstimulating world.

It was also the best way he could connect with his older brother—if they couldn’t talk together they could at least have that shared experience of enjoying Disney side-by-side.

As the family watched The Little Mermaid one night, Owen said “juicervoice”.

Finally, it dawned on the family that he was saying “Just your voice.”

This is the line used by the Sea Witch to convince Ariel that taking her voice was a small price to pay for being human. Owen’s parents believe that this line has significant parallels to the type of challenge he faces in connecting to others using his voice.

In other words, he understands its relevant meaning for himself…more than just parroting words.

Ron expresses his astonishment and hope that Owen is “still in there”.  They “set on a rescue mission to get inside…autism and pull him out”. And they used Disney movies as the rescue lifeline.

 

“DISNEY” THERAPY

It wasn’t enough to allow Owen to memorize all the dialogue and act out the scenes of every Disney movie.  He had to interact with others who also knew the scenes.

His parents used puppets to enhance the interaction. This may be helpful for those on the spectrum who don’t tolerate full attention to themselves in their interactions with others (it’s diverted to the puppets).

They knew being able to recite movie-lines well was not the end goal.  “Scripting” was a functional means of working toward achieving meaningful, two-way social communication.

Simply practicing the dialogue also enhanced Owen’s own speech and language skills, both receptive and expressive.  Instead of making Owen practice language that did not have meaning for him in traditional therapy, they used something he was passionate about.

As Owen got older and mastered speech and language, his parents and therapists moved on to helping him figure out the subtle nuances of social communication.

Now it wasn’t enough to act-out movie scenes. They used the Disney stories to help him navigate the complicated social world of non-verbal communication.

Owen likes that fact that animated characters have exaggerated facial expressions to convey emotions—sadness, anger and joy are black-and-white. The slyness of Iago in Aladdin is easily conveyed when he looks to a scheming Jafar.

Disney movies have also helped Owen deal the emotional burdens of transitioning from one setting to another.  The film shows scenes of Peter Pan as Owen is about to embark on a new journey into adulthood: independent living away from home.

Whenever he encounters a new step in his life, he refers to scenes from Disney movies that he can relate to and thereby feel emotionally supported.  “My childhood days are over, but that doesn’t matter,” says Owen, sitting by himself in a dark theater, scripting a scene from the Lion King in which Simba, now king, roars triumphantly.

PROTECTOR OF SIDEKICKS

One of the most haunting fears of any parent whose child has autism is the prospect he or she will be bullied.

When Owen attended a new school, he became more withdrawn and his behaviors regressed.  After a while, they found out that a couple of boys at school told Owen they would burn his house and hunt him down, tormenting him.

Because he thinks so literally he thought his house would burn down and kill his parents.  As Cornelia recounts this horror, scenes of Quasimodo (Hunchback of Notre Dame) getting mercilessly harassed are shown. (I’m basically crying at this point…)

After confronting the bullying at school, Ron noticed Owen working on something in the basement. He had been drawing Disney characters, but they are all sidekicks—no heroes were drawn.

Owen has identified himself not with the movie heroes but as “the protector of the sidekicks…(because) no sidekick gets left behind”.  He wrote “The Land of the Lost Sidekicks”, of which the film shows a beautifully created animated short.

Owen had used Disney characters and themes to create an original story to process his own complicated emotions associated with rejection and loneliness.  Through his story he identifies with those sidekicks who provided him emotional support on his journey through dark times.

At the end he rises to become a “protector” of those “left behind”.

I caught myself thinking, what an amazing achievement…not just for someone with autism, but for ANYONE.  If this isn’t a perfect example of self-empowerment, I don’t know what is!

APPLYING THE LESSONS FROM “LIFE, ANIMATED”

I laughed, I cried, I learned…

I had previously read the book (which I loved because I could relate to their journey well), so I knew what to expect.

I didn’t expect this documentary to be such a visual treat.

Using scenes from Disney movies that mirrored Owen’s personal growth experiences was very effective in conveying the importance of this form of media in their lives.

Needless to say, it’s a good movie to watch with your autistic son or daughter.  My daughter got into the animated scenes of Owen’s story since she loves to draw.

Because Disney is so ubiquitous in our culture, it should be easy for someone watching this to sense how certain characters and themes were necessary for him understand particular situations in his life.

Disney themes have a steadfast, enduring quality that provide a comforting reassurance. Despite hard times, individuals will rise to the occasion with love and support from others.

As my own kids with autism love Disney so much, this film is incredibly relevant to our family. My kids picked up language easier from watching these movies, especially my son who used closed-captioning as he watched them.

Lesson One: Learn with Joy

Owen’s journey exemplifies that using an AFFINITY-based approach to learning life skills is very effective for those on the autism spectrum (not just a “strengths-based” approach).

The Suskinds approach using Disney is what Temple Grandin has been advocating for years:

target a person’s interests and obsessions rather than general positive qualities and skills.

A person’s “affinities” are used not only to motivate the person to deal with life issues and learn skills in therapy-based settings but can also be used to create and produce a stand-alone product that others appreciate or toward a career.

These affinities should not be seen as a prison but as a “pathway”.  Instead of viewing these “obsessions” as “dysfunctional”, mold them into a functional learning process in which the child learns to interact with the wider world.

As my own children are now in their teens, their childhood Disney passion has become a Disney obsession.

As Disney movies have motivated my son to learn language, he is now self-empowered to write his own Disney stories.  My daughter is obsessed with drawing cartoon characters with intense emotions and themes.

I convinced the speech and music therapists to motivate my kids through their Disney-based interests.  My son practiced social communication skills as a “park tour guide” in speech and composed a Disney musical score.  My daughter learned speech, language and executive functioning skills by reading Disney stories and singing and playing Disney songs.

I even used the original classics upon which Disney based for his movies to motivate my daughter to read books in our homeschooling endeavor.

Without passion, learning language and social skills may be a more arduous process for both the parents and the child.

This link provides more information on the affinity-based techniques that may be used at home or in therapy.

Lesson Two: Get on the Floor and Out of the Box

In order to connect with Owen, Ron and Cornelia had to also know the Disney scenes and dialogue really well themselves. They changed their thinking (and the prevailing thought at the time) that too much TV was bad, that these Disney movies could actually be good for his education and growth.

Just like play-therapy, they got down on HIS level to reach him—to “think outside the box”.

Not only does this mean recognizing your child’s interests but taking the time to really interact in a way with your child that may feel weird or uncomfortable.

For example, it seemed odd or wrong that my kids used movie scripts to talk. But I realized they were able to talk to each other.

“Scripting” was not necessarily a bad thing because they were learning to talk back-and-forth in a two-way social conversation. Once I played along, I had more joyful, meaningful interactions with my kids.

It also means being flexible enough to FAIL—to recognize when something doesn’t work and letting it GO. The reality is that a child cannot be MADE to behave a certain way just because we want them to.

If an approach doesn’t work after a period of time, try something else. Sometimes they have outgrown a certain affinity and it no longer motivates them.  Or an approach is too demanding and exhausts them.  Even therapies can get old and no longer be effective—do something new and fun!

And use puppets if you have to!

Lesson Three: Identify a “Meaningful Life”

I admit that some films with an autism character feel exploitative.  This one did NOT.

Ron and Cornelia don’t complain about Owen’s “bad behavior” but reflect upon the multitude of self-adjustments they had to do in order to meet him where he was at.  Their journey of empowerment and self-discovery was just as important as Owen’s.

As his caregivers, they naturally worry if he has the right social and executive functioning skills to live independently and to his highest potential.

The question of a “meaningful life” is presented in the film. That often comes up in conversations with others, including therapists in IEP and ISP meetings.

The life-goals for Owen are discussed within a collaborative team of “experts” (including mom). Owen generally agrees or disagrees with the ways of achieving those.  While he’s involved in the process of making decisions for himself, he’s not fully “running the show”.

As he gets older, it becomes harder for mom to accept reality of his “deficits” that she has worked so hard to help him overcome as a child (even homeschooling him).

Cornelia’s look of uncertainty and angst hit me in the gut. I know that I will be facing the same reality with my own kids soon. Knowing just how much or little outside help they are going to require to live a good life.

While most parents are dreaming of their children’s futures with starry eyes, many parents whose children have autism often have a very clouded vision of their futures.

Only when I reflect upon some real-world examples of “normal people” needing guidance and support well into adulthood do I realize that I may be taking the perspective of future despair too far.

Ron remarked that letting our kids fail is actually the goal for autism parents.  We need to take a leap of faith and let our kids advocate for themselves at some point.

This was illustrated by the fact that while Owen was invited to give a speech to an autism panel in Paris, France. Ron refused to write the speech for him.  He was firm in making him discover for himself what he needed to say.

We can cheer-on our grown kids but we can’t do it for them. A meaningful life means letting them discover for themselves what they need to do to grow in self-confidence and contentment. It doesn’t necessarily mean a completely independent existence.

FINAL THOUGHTS…

I found it interesting that the Suskinds discuss the fact that Owen “disappears” into autism.  To me, it seems evident that he regressed into autism rather than was “born that way”.  They never say he has “regressive autism”.  Instead they use metaphorical terms to describe their experiences.

It’s unclear whether they explored dietary or other medically-based interventions. Based on their language to discuss his challenges, they were more concerned about helping him socially connect to others through innovative means rather than be medically-treated.

The agenda of the documentary is not about what they believe caused his autism but on the present developmental reality of autism.

I recommend this film for those have autism, for those who love someone with autism (especially parents), and for those who work with those with autism.  If it makes you change your perspective even a tiny bit, it will have served its purpose.

As for myself, it led me to conclude that what I was doing to help my kids was actually okay…and that I’m not alone.  I had the same struggles: emotional breakdowns, therapeutic resistance, and educational dilemmas.

But I also have fun, happy experiences with my kids that help them learn, grow and connect with others (like going to Walt Disney World). Knowing that they have achieved so much already gives me hope for their futures.

What a privilege to be granted access to witness the powerful potential in all of us to rise above the challenges we are given with the support of those who love us.

The documentary film LIFE, ANIMATED can be found here.  LIFE, ANIMATED: THE STORY OF SIDEKICKS, HEROES AND AUTISM can be found on this non-affiliate link here.

 

If you want to experience the magic of Disney in real-life, I would love to help you plan a magical vacation to Walt Disney World in Florida or Disneyland in California!  Just click on this link for a free travel consultation!