Protecting Sensitive Ears.

HeadphonesThere are two main issues for sensitive ears when flying. First there is noise, loud, unfamiliar or both, and there is pain associated with changes in cabin pressure. While the latter can be uncomfortable for anybody, it’s a whole lot harder when you have difficulty communicating how it feels. Noises are a problem that lots of us see with our children in other situations aside from flying.

The good news is that you can do a lot in preparation before you ever leave home. You have two things to figure out. The first of these is which remedies will your child tolerate ? Some of the things that work for others may just be totally unsuited to your child. The second thing to find out is, of the “acceptable” remedies, which ones actually work.

Let’s look at noise. The really good news here is that you can answer both questions at home. No, we’re not saying that your house is noisy ! What we are saying is that, if your child is upset by loud or strange noises, you’ll find plenty of those somewhere locally.

If your child is considerably affected in this way, you probably have already figured the best means to deal with this and could possibly tell us some of the answers.  In your case, take whatever works at home with you, when you travel. There’s a very high probability that you’ll need it. In fact, if two different things work, take both.

If your child is only overwhelmed by noise occasionally, then you should work on something before you leave. One of the best answers here is noise-cancelling headphones attached to the device of your choice. The choices are limitless. You could go crazy and spend well over $ 300. Alternately, we found something good, that worked, in Wal-Mart for around $ 20. Once you’ve found something, try it out in a situation where you have reason to suspect that your child would struggle without them.

You might be able to use the, generally cheaper, type of earphones that fit into the ear but there are things to consider with this. The obvious one is, does your child tolerate things being placed into their ear ? The other possible issue is for kids that can hear a pin drop from a block away, they may still be disturbed by “outside” noises.

The remaining possibility is plain, ordinary, foam ear plugs. The plus side of these is that they cheap and they’re easy to find. The downside to these will be, are they tolerated ?

Now let’s look at cabin pressure changes. In this case, you don’t have a good way to see if they work in advance of actually using them. That may be not quite true. Somebody did suggest that you could try this out in a very fast elevator in a very tall building. While we accept the theory of this, we have to guess that packing your child into a tiny, crowded, space full of strangers and then closing all possible exits, may lead you to have more problems that just their ears !

Now, it’s not all bad news. Everything here can be tested in advance for how well it is tolerated. Once you know which things are accepted, take them all !

Start by looking at EarPlanesTM by Cirrus Healthcare. These are plastic plugs that fit into the ear and help to stabilize pressure. They’re easy to buy at stores like Walgreen’s and CVS. They work well for many people. They come in child and adult sizes. Try a pair and see if your child can tolerate having them in their ears. If they do, take them with you.

Next, how is your child with either chewing gum or sucking hard candy ? Food issues may mean that these remedies are unsuitable for some. On the other hand, if they merely represent things that you prefer to discourage, this might prove to be a worthwhile “exceptional case”.

How is your child with drinking through a straw ? The sucking can really help. Either your child can already do this or it’s a skill that may be easily taught. Take some straws with you.

Our favorite variant on this is sucking on a straw from a juice box. Here’s why. If you are careful when puncturing the box with the straw, you are left with a, nearly, air-tight seal between the straw and the box. This means that you end up sucking against a vacuum and that requires much more sucking effort than drinking with a straw from ,say, a glass. Of course, you can’t do this if you wiggle the straw around to enlarge the hole ! The tough part about this suggestion is that there are few, if any, juice boxes smaller than the 3.5 oz limit that you can take through security. You need to be able to purchase them from a concession after you’ve gone through. If unable to purchase them there, you still have those straws (see above), don’t you ? If you don’t ordinarily permit your child to drink juice, think “exceptional case”, as above.

Then, there’s nose blowing.  Have plenty of tissues with you just in case none of the above has worked. This will work best if you can assist and, gently, constrict the nose enough to close it off. This builds internal pressure while attempting to blow and may be enough to overcome the changes in the cabin pressure.

Now let’s look at both issues. Oh boy ! It does make things harder if you have to deal with both issues. It doesn’t, however, make them impossible.

The first thing to consider in this case is, when is each issue going to come into play ? For the airport, the issue will be noise and not cabin pressure. In fact noise will, probably, be the bigger issue throughout with the exception of the ascent and descent portions of the flight.

There are a couple of things that you can do and, again, you can do some of the testing at home. You could, for example, see whether the EarPlanesTM help with noise tolerance. They aren’t made for that purpose but they do reduce noise somewhat and, with luck, that somewhat may be good enough.

If that isn’t the answer, you can’t reply on noise cancelling headphones to deal with cabin pressure but they will still be effective against noise and you can go with the candy, gum or straw drinking solution in order to tackle the pressure.

So, find your noise solutions before you leave home and check which pressure solutions might work and take all that do.

Our own advice – more things that worked well.

Negril BalconyOur last post was about how we did with following our own advice at the airport. This continues the story to the resort. Some things we couldn’t try because they simply don’t apply to us. Some worked extremely well.

 

Be specific with room requests. Here we mean more than high-floor/low-floor. It is well worth the effort to call or email the resort ahead of time with a resort map in front of you. If you need a quiet location, ask in detail about which locations might work.  In general terms, rooms nearer to all of the main facilities are noisier and those furthest from those facilities are quietest. That isn’t, however, always the case. Reservations staff at the resort do know, but only if you ask them.

In our case, location wasn’t a huge issue but we did want to be near to the smaller pool and away from any late-night noise. Planning this ahead worked very well. We got exactly what we wanted and, as a bonus, a beautiful view. (That picture isn’t from the resort’s gallery. It is a random shot from our balcony !)

 

Take appropriate measures against wandering off. Sorry to tell you that we didn’t get to try any and, thus, can’t report on any of them. (Of course, the good news is that this is because our son isn’t a wanderer).

Take a pillow, or other bedding, from home. We recommend this, if a child is a poor sleeper. The familiarity may help. In our case, the bedding wasn’t as important as having some familiar soft toys for him to snuggle with. (Basically, his entire carry-on was taken up with these.) This worked very well and stopped the unfamiliarity of the surroundings from becoming an issue.  Those same toys illustrate the point with another tip.

 

Involve your child in the preparations. Of course, this is to the extent that is feasible for you to do so. Each toy in that carry-on was very carefully selected – by him and not by us. He was pleased to have “helped” with the packing and he had all of the right characters when he got there.

Work with your child’s strengths and interests. Actually, for this, the best illustration takes us back to the security screening at the airport.  Since he is under 12 years old, we could have asked for him not to take his shoes off. However, he actually prefers to walk around in socks without shoes. Clearly that doesn’t work in lots of situations but we were able to turn it into a game of “how cool is it to walk through a big building in your socks ?”.  Our point is that, for most people this is somewhere between an inconvenience and a real ordeal. Knowing him and his likes allowed us to make it fun.

 

Try lots of different activities. This is another “doesn’t apply” scenario. Given a huge choice of possible activities, playing in the pool was such a great hit that he wouldn’t try anything else ! This shouldn’t stop you from trying lots of things but, if you find something that really works – stop looking.

 

Get support. THIS IS BIG. No matter where you get it, support is worthwhile. This can be by vacationing with friends and family, going with a supported group or, as we did in this case, using appropriate resort staff. We were able to obtain the services of a young gentleman from the entertainment department. He had experience working with kids on the spectrum and was just a lovely, warm-hearted person. Our son took to him as a new best friend. We were able to enjoy that perfect mixture of some time to ourselves and some family time. We have tried, in the past, to do this without support and had disasters. Having support really, really works.

If you aren’t sure how to arrange the right support for your vacation, please ask us. There are a number of ways to do this so that you can have a vacation that is, well… a vacation. We just did.

Our own advice – what worked best and what not so well.

Which flightA couple of weeks ago we promised that we would follow our own advice while taking a family vacation in Negril, Jamaica and report back which tips worked and which didn’t. Here, then is half of an item by item report. The second half follows, next week.

Plan and book ahead. Wow, it would be a huge shame on us if we hadn’t done this. It, of course, continues to be our strong advice that you do this. Something unexpected may happen anyway but thoughtful planning will reduce the number of unexpected events and leave you better able to deal with the ones that do arise.

Use stories (social stories) in preparation.  Our son doesn’t use stories a lot. We did use one though; to set expectations for having to finish whatever activity he was engaged upon in order to actually stop and eat meals at the proper times. This had been, very kindly, prepared by his special education teacher and it did help. If you child is helped by social stories, do use them in conjunction with your vacation.

Avoid long-term parking at the airport. We suggest getting friends or family to take you to and pick you up from the airport. They can drop you directly at the terminal and avoid that extra transition of on/off shuttle buses to the parking lot. We did this, albeit more expensively via car service, and it worked very well. This is particularly so when compared to trips where we had used long-term parking.  If taking car service, do your own math. Add parking fees, gas both ways and any tolls and compare that to the cost of the car service. The direct-to-the-door/avoid shuttle bus is well worthwhile unless car service is prohibitively more expensive.  If friends or family charge you more than either, you probably need new friends and family ! They should be your least expensive option.

 

Use a Practice Boarding Program. Since these remain scarce, we didn’t have the chance to do one. In cases like that, our advice is to do your own “dry-run” and look at as much of the layout of the departure airport as possible. Shame on us. We didn’t make time to do this and it would have helped if we had. See reasons below. So, do take a practice run whether via one of the programs or on your own.

Call the airline ahead of times to tell them about your special needs. We did this and, for half of the time, the result was superb. The customer service rep made a note in our booking record and told us that, in order to have a faster, less crowded check-in line, we could go to the business class check-in counter. Cool, huh ! Why only “half-of-the-time” ? It turns out that the rep wasn’t aware that the departure was from a refurbished terminal and that all check-in, business and coach, was only by means of self-service kiosk. Of course, if we had done the “dry-run” we would have known this in advance. Luckily, this worked out well. The kiosks were plentiful enough that lines were minimal and far apart enough that nobody felt crowded. On the return departure, we were second in line at the business class check-in. The line for coach was horrendous. Not every airline will allow you to check-in with business class but do ask. It really can help.

Call TSA Cares and ask for a Passenger Support Specialist. We did this. They said that one would be provided. In our case it didn’t quite work out. As instructed, we told the first TSA agent that we could find that we had requested a PSS. Since the security screening area was actually fairly quiet, he directed us to a nearly empty line and we sailed through. He told us that this would be a lot quicker than locating the PSS. We do, however, recommend that you still go through this step. If security is crowded, it will really help you. If you are lucky enough to find it as quiet as we did, count your blessings.

 

Ask for priority boarding. Now, we’ll add to that. Ask for priority boarding as soon as you can. Here’s what can happen. Priority boarding is arranged by the gate agent at the departure gate. If you ask for it and tell them why, they will allow you to board first, or very nearly first.  They may ask you to wait until they’ve boarded anybody in a wheelchair but, probably, will have you board ahead of business/first class passengers and holders of high level frequent flyer status. OK, so why “as-soon-as-you-can” ? On the outbound flight, our airline started priority boarding much, much sooner than we would have expected. We had it figured that we had time to grab something to eat at a quick-service restaurant and still be ready. When we asked the gate agent for priority boarding the response was, “certainly I can do that for you, we begin in 5 minutes”.  We grabbed the quickest food-to-go that we could and were back there within the 5 minutes and had plenty of time to eat on board while everybody else was fighting their way on-board.  If we hadn’t asked the gate agent as early as we did, we’d still have had something to eat but would have missed the priority boarding opportunity.

Have multiple options for dealing with pressure changes.  We always recommend that you are prepared with more than one option to help with ear discomfort when the cabin pressure changes. Having a second, and third, option really did help. Here’s how. We used EarPlanesTM as first choice. Of course, you have to try them in advance in order to know if your child can tolerate these in their ear. Ours could and they worked well for the ascent.  We switched to headphones a little later, when the pressure had settled so that he could watch movies but we were a little too slow to get the EarPlanesTM back in as we started the descent. We had him chew some gum in order to get over the initial discomfort and allow time for the EarPlanesTM to start working. We found them to be good at prevention but not enough, alone, for “cure”. We didn’t need to deploy the third and fourth options but we did have them available. You should do so too. This is a predictable source of upset for many kids on the spectrum and there are plenty of available ways to be prepared.

 

Next time, we’ll look at how things worked out beyond just the flights.

Dining Out on Vacation (or anywhere else).

Beaches Turks, Dining - CropWhile the purpose of this blog is to provide useful information to families taking vacations with their ASD child, it is even better when the content helps with everyday living. We certainly are doing that today.

You will, almost certainly, need to think about dining out while you are on vacation. It is highly probable that you would like this to be a pleasant experience at other times.

In this instance, we’ve invited a guest blogger, Connie Hammer to share some strategies. Connie is a Certified Parent Coach and the founder of Parent Coaching for Autism.  She is an excellent resource for parents in many areas and we would suggest pay a visit to www.parentcoachingforautism.com when you’ve finished reading this post.

Over to Connie:

 

Enjoy Dining Out with Your ASD Child

 

Going out to eat can be a wonderful experience when it is just you and your partner on a ‘date night out’ but when you have to dine with your children it is a different scenario entirely.  Going on a family vacation is one of those times when dining out with your children is a must – at least most of the time.

 

When you have a child with an autism spectrum disorder you may cringe at the thought of eating out in a restaurant on a daily basis. I know some parents who have avoided family vacations for that very reason until I helped them discover how a fun family respite could occur with success.

 

Here are four of the most common ‘let’s-NOT-go-on-vacation’ reasons related to eating in restaurants parents have shared with me.

 

  1. Because being on the road or on vacation is a big change in routine for a child with autism who thrives in a predictable environment and going to a different place for breakfast, lunch and dinner everyday can be too much change.
  2. Because restaurants can be over-stimulating to the senses and easily trigger a meltdown.
  3. Because the transitions in and out of an eating establishment can be overwhelming.
  4. Because it is too much work and it just isn’t any fun!

 

Allow me to address each one of these issues.

 

1 – Yes, a vacation is a big change in routine but you can create a vacation that has a basic daily routine to it in order to make it as predictable as possible for your child.

 

–          Create a visual calendar or daily schedule for your child before you leave – do this together if age appropriate. The time you take talking about the sequence of the trip, putting it down on paper – whether in writing or picture format – will help establish it in your child’ memory. Even the most basic daily schedule will make each day more predictable and lessen any anxiety that might be lurking underneath.

–          While on vacation you fill in around the basics as you decide more specifically what you will be doing the following day. Adding more details to the calendar and reviewing it each night will help your child feel even more secure.

–          Don’t forget the power of a personalized social story that can be read each night before bed, weeks before you leave. Yes, that does mean you have to plan in advance – at least one month prior to take off – but the benefits you will reap are worth it.

–          Inform and educate your child. Don’t ever assume your child can’t learn new things or adjust to new situations. Every action of everyday should be spent educating your child and answering the question, “How is what I am doing today helping my child become the person I want him to be?”

–          Practice. That’s right, ‘practice makes perfect.’ – well almost. Children learn by seeing, hearing and doing, so make sure you provide enough hands on opportunities to build muscle memory for a new skill. Have a family meal at home and practice being in a restaurant. Give each family member roles; wait person, other customers, cashier, etc and play it out!

–          Play “What If?” – While in character, present ‘what if’ situations that can be brainstormed and role-played in advance. Example: “What if they are out of what you want to order?”

–          Don’t forget about your child’s food sensitivities, allergies or intolerances. If your child needs a special diet keep that in mind when looking for a place to eat. Try to bring their menu up online and if that is not possible – call them and ask before you get there.

 

2 – Pay attention to all of your child’s sensory issues before leaving home. Be prepared to address any sensory sensitivity your child has and therefore reduce the possibility of a meltdown.

 

–          Sight: A busy restaurant may have too many visual distractions. Use sunglasses for glaring lights; ask to sit in a more secluded section such as a booth or a corner of the room; sit by a window for something different to look out of and focus on; bring a magazine to look at or book to read.

–          Sound: Don’t forget the auditory commotion that typically occurs in family restaurants. Consider noise-cancelling headphones to drown out sound; bring an iPod with ear buds that has been pre-programmed with calming music or your child’s favorites.

–          Smell: Restaurant kitchens can have some over-powering scents wafting through the dining room. We all have smells we don’t like that can trigger unusual reactions, this is even more pronounced for a child on the spectrum. A handkerchief or piece of cloth doused in your child’s favorite scent can come in handy at times like these.

–          Taste: Most children on the autism spectrum have particular tastes and are used to having things prepared a certain way. Even when you order food items you know your child likes the chef’s cooking may be different from yours.  Just in case, be prepared with some condiments that will help make the food more palatable to your child or always have nutritious fruit or snack food on hand if all else fails.

–          Touch/texture: Whether it is the hard chair, the scratchy material on the booth, the cold toilet seat, or the texture or temperature of the food – be prepared to shift gears. You can always ask to be seated elsewhere or send food back to be reheated. Bringing an item along that is soothing to your child to touch is always a good distraction to have on hand.

 

3 – Practice transitions and other known restaurant related occurrences – such as talking to other adults, using table manners, ordering food, waiting for your meal, appropriate behavior in public places, etc. This is a great real life laboratory for practicing and developing social skills. Help your child put into practice what you have been so patiently teaching her.

 

–          No surprises. Give your child advance notice that he will be going to a restaurant so he can have time to adjust to the idea. Use the time to pre-teach by reviewing the do’s and don’ts about dining out.

–          Prepare for and anticipate what to do while waiting – bring items to occupy your child or have another adult take your child for walk after ordering. If you know your child is already overwhelmed call your order in ahead, if possible?

–          Most likely your child will have to use the bathroom while there. This is the time to implement your strategies for using strange bathrooms while on vacation.

 

4 – Plan things that will make it fun! Yes, creating a relaxed and festive atmosphere does take time, energy and effort but all good outcomes require that.

 

–          Bring books, small puzzles, crayons and paper, or other small items you know your child likes to occupy her time with. Better yet, make these items special by using them just for eating out.

–          Use apps. There are a variety of apps that you can use to entertain your child if necessary. I would, although encourage you to find ways to entertain your child by interacting with her or encourage him to entertain himself. One app that will not only entertain your child but reinforce social messages about going places is the visual support app from Model Me Kids called Going Placeshttp://www.modelmekids.com/iphone-app-autism.html

–          Don’t go at the height of breakfast, lunch or dinner – choose slow times deliberately. It is difficult to have fun when there is too much stimulation and distraction around you.

–          Never dine with children when they are too hungry or too tired. If your child is too cranky – for whatever reason – your dining experience will not be enjoyable.

 

You may also want to contemplate the pros and cons of alerting the wait staff about your child’s special needs. Every parent feels different about disclosure, so consider it carefully. Using the words “disability” or “autism” can help others understand and be supportive. A good guiding question might be – “What would the benefits be right now of telling the restaurant staff my child has autism?” The answer may differ with each situation.

Also, As much as you would like some down time with your spouse you don’t want to let your guard down. Don’t get lost in conversation and pay close attention to your child’s moods and behaviors so you can stay one step ahead – anticipate, anticipate, anticipate and always have an escape plan if things aren’t going well.

Practicing what we preach.

Beaches Turks, Pool - CropWe give advice and tips every week but do we ever follow our own advice ?

Many of the tips and resources that we point out to you are things that we have discovered in the course of our travels. Others have come as recommendations from others.
Now we’re off to put as many of these tips into practice as we, realistically, can in one trip. This does mean that there will be no posting next week. That, of course, is us taking our own advice to get some quality R&R !

When we get back, we’ll give you a full report on which tips worked best in practice. Which ones seem no longer to apply and what we’ve learned that is new and may be of help to others.

Happy Labor Day.
“See you in September” – The Happenings(1966)

Why would anybody want to take a vacation ?

Beaches Negril, Evening - CropHaving previously asked some of the practical questions about taking a vacation (BIG Questions when planning a vacation), it seems like a good idea to ask an even more fundamental question. Why would you want to take a vacation ? And, are the reasons different for our families ?

Reasons for wanting to take a vacation are as varied as the families taking them. There are, however, some reasons that come up frequently.

R&R. That’s a big one for any family these days. It is an even bigger reason for families with a member on the spectrum. Think about it. For typical families, the modern lifestyle is on-the-go/multi-tasking/constant-stress. And they have it easy, don’t they ? They don’t have to deal with doctor or therapist appointments with anything like the frequency that we do. They don’t have to deal with PPT struggles or, worse, due process.

A study by Brigham Young University found that stress in parents of children with autism measured at the same level as that of combat soldiers !

We need our R&R more than most. Actually our need is more like R&R&R (Respite, if that isn’t obvious). In order to get that extra “R”, think about the support that you may need and try something like, perhaps, having some extended family members come with you.

By the way, wouldn’t it be cool if the insurance company covered the cost as “stress relief therapy” ? We think so but absolutely can’t find a single insurance company that agrees ! If you ever find one, let us know and we’ll tell the world.

 

New Experiences. Many people want to experience things on their vacation that are new, different and memorable. Of course, for some of our kids, “new” is their biggest challenge.

 

The art here is to try to leverage the familiar. What we mean by that is to incorporate things that can be made to feel familiar. This could be to take your child’s pillow, or other bedding, so that feel and smell are familiar. It might mean trying to ensure that a rental car is similar to your car at home.  This list can be as long as you need to make it. Once you have those things figured, you have a basis from which to, gently, try something new. You might want to look at our previous post Recreation Therapy. To summarize that, look for places with lots of leisure activities so that your child can, safely, sample some new activities. If your child finds just one new activity that they enjoy and master, you’ll have a truly memorable experience too.

New experiences don’t have to be limited to leisure pursuits to be successful. Margalit Francus of Autistic Globetrotting tells the story of how her son was struggling to understand the coursework on Mayas and Aztecs at school and that this inspired the family to actually go and see for themselves and not just look at the textbooks.  The result of the trip was that it actually helped her autistic son to connect with the subject.

Family Bonding Time.  Again, the typical family finds themselves all over the place during the rest of their 24/7 lifestyle with few opportunities for quality time together. And again, that applies more to us than to most. Here is yet another reason for looking to travel with extended family or with friends that you don’t, often enough, get to spend time with.

 

Reasons why not ? There are some that come up for families living with autism that are specific. Here are the two most common.

Not wanting to share your diagnosis.  Let’s quote Margalit again. Her, informal, study says that this may be the biggest single reason that parents of children with autism are reluctant to travel. Of course, we understand and sympathize with this reluctance. On the other hand, don’t we share that diagnosis with every new teacher, social worker, therapist, etc. ? Think of, say, hotel guest services as if they were a new therapist (but without the 20-page questionnaire). They are there to help you just as much as all of those others. Additionally, now that we are 1 in 88 (or 1 in 50, depending upon which study), you’ll probably find that you end up speaking to somebody that has heard of autism and that wants to know how they can do their part to help you.

Embarrassed by meltdowns. Most of us still are, even when we try to overcome that. Here’s the point with this. A meltdown at the mall or supermarket is no less embarrassing than it will be on vacation. If meltdowns are an issue, you already live with it and it would be a pity to let it stop you from enjoying the benefits of a vacation.  You might want to consider an Autism Awareness T-shirt or similar since that, kind of, gives part of the message in subtle way. For our part, we had matching tees printed with the message “Autism Affects 1 in 88”. We didn’t hear a single “tut” !

 

These are some of the more common why’s and why not’s. What are yours ? We would love to hear from you with your take on either or both.

The BIG questions when planning a vacation.

QuestionsTaking a vacation is a project that needs careful planning for anybody. It needs even more thought for our families.

Start with the BIG questions. Who ? When ? What ? Where ? And How ? For families traveling with autism, “how” is the toughest question but finding the best answers to the others may help with answer that one. In fact, the answer to one of these questions may have an impact on the other questions.

 

Who ?  It’s obvious, isn’t it ? It’s you and your child ! (Children, if you have more than one.) Hang on a moment though.  Many families travel together with members of their extended family. If you can bring your parents, your in-laws, your brother or sister (and their family), you do two things.  You create a family gathering. More importantly, you take part of your support network with you. If family aren’t available, how about traveling with friends and their families ?

Here’s where “who” can affect “how”. What if your in-laws want to go but live on the other side of the country ? It may make arrangements a little more complex. Still do it though. That support is invaluable.

When ? For most of us, the answer is during school breaks. Those times are usually a little more crowded and they are more expensive but so much of our support is tied around the school calendar that we don’t have a lot of choice. Of course, many parents need to take account of work schedules and, if you are a teacher, you’re doubly bound by the school calendar.

“What” can certainly impact “when”. You’re not going to find much by way of snowboarding in July ! And swimming at the Jersey Shore in January may not be so much fun. Can “who” affect “when” ? It sure can. If your brother-in-law is coming and he is employed as a Mall Santa, you won’t want to go between Thanksgiving and Christmas !

What ? This has a big impact on where. Let’s use our snowboarding example again. You’re not going to want to go to Florida. More seriously, this is a truly big question. What sort of activities do you want to form part of your vacation ? It always makes sense to think this way around rather than pick a destination and then try to figure out what to do when you get there.

It may pay to take a look back to our posting about recreation as therapy(see Archives). The point that we were making there is that it will help to “sample” as many recreational activities as you can. There will be activities that just don’t work for your child but there will be some that do. If you can find a new activity where your child enjoys both success and fun, you’ll have a great vacation. So try to strike a balance. Look for activities that they already enjoy and the chance to try something new.

Where ? Part of the answer will certainly come from “what”. Match desired activities to a destination that provides them. A smaller part of the answer may come from “when”. If, as many children on the spectrum do, your child doesn’t do well with crowds, you may want to look for destinations that are “off season” at the time you are traveling.  This is one of the reasons that we think highly of some of the ski resorts in summer. They’re out of season, they’re certainly not crowded but they do offer lots of different activities in order to get people there.

“Who” could just have an impact. For you and your child, you probably want non-stop flights and it would be nice if they were shorter flights rather than longer ones. But what about those in-laws across the country ? They won’t want to come if their only option is a triple connection that takes 24 hours ! You may just need to figure a “where” that works for all concerned.

How ? This is the big one and, sorry, we just don’t have the space to answer it here. The answers here are in many of our previous postings (Flying to See Janet, Which Flight ? Which Seat ?, Airport Practice Boarding Programs, just to name a few). They are all available to you in the Archives. There will be many more answers in future postings.  If you aren’t already subscribed for our updates, this would be a good time to do so. Just fill in the form on the right side-bar.

 

If you simply can’t wait for your ”how”, call us and ask us !

How stories help you prepare for travel.

Going PlacesWe are always looking for resources that help families when traveling with autism. We found a great one with Sandbox Learning and invited Amy McGuire, their co-founder to guest blog with us here.

A couple of things struck us about this. Firstly we asked her to write about social stories. She replied that there are specific ratios to the sentences used in social stories and, since their stories are customizable, they might not comply with those ratios. So she simply calls them stories. We call her a consummate professional for being so precise.

The other thing that struck us was that she didn’t use this as an excuse to sell the Sandbox stories. We call that kind and considerate. Of course, it also means that she didn’t mention some of the specific stories that we thought relevant so we’ll do that for her. Here are just a couple:

Going Places.  Not about travel, per se, but an obvious connection.

School Breaks. Most of us take vacation during school breaks. This helps contextually.

Feeling Anxious. Many parents tell us that they worry about the anxiety that their child may experience while traveling.

Changing Activities. This includes how to deal with unexpected transitioning.

No single story covers every aspect of your child being able to take a family vacation. On the other hand, you have the freedom to pick the ones that may be relevant for your child and they teach things that will help your child in other situations beyond traveling.

Time to turn this over to Amy, with thanks.

 

Using Stories to Prepare Children for New Events or to Review Expectations

 

Children with autism often benefit from using stories to help them prepare for a new situation or to review expectations in a familiar situation. Whether the stories are written in a specific format (social stories) or are just written from the child’s perspective with information relevant to their specific needs, stories are helpful educational tools. Since children with autism often benefit from visuals, accompanying illustrations, photographs or visuals provide additional means of conveying information.

Stories should be written from a first person perspective. For example, ‘When I go visit Grandma I fly on an airplane.’  Information should be clear and at a level children can easily understand. For example, ‘I stay in my seat. I can read my books or watch videos while sitting in my seat.’ Rewards and consequences should be included in the story. For example, ‘If I use my inside voice during the flight, I can play on the tree swing at Grandma’s house.’

Review the story days before the event, the day of the event, and bring it as a reminder during the event. By preparing children and having something for them to review during the activity, expectations are clearly outlined for them.

Stories can be used to discuss virtually any topic including social skills (e.g. having conversations), behavior (e.g. following classroom rules), functional skills (e.g. bedtime routine), and specific situations (e.g. travel). Stories are available through a number of websites including Sandbox Learning(www.sandbox-learning.com) , which gives a free story about patience titled Waiting to people who register on their site. People also often make their own stories using drawings or photographs of their child.  Whether you purchase a story or make one, it can be a great tool to make travel less stressful.  Just remember regular review and discussion of the topic is important for preparing children and setting expectations.

Travel Protection Plans. An explanation and a check-list.

TPPWhat are Travel Protection Plans ? Do you need one ? If so, which one and when ? How does your child’s autism affect those choices ?

Travel Protection Plans vary but their main function is insurance against having to cancel due to an emergency such as illness, injury or death. Many of the points considered here will apply to all vacation travelers but we offer extra thoughts on how these considerations affect our families in particular.

Since there is a lot to take into account, we’ll try to explain the principles but we’ll give you a check-list/action-plan at the end.

As with any insurance, you will need to weigh the cost of the protection against the impact of the potential losses. Why, for instance, do we buy homeowners insurance ? We do it because the premium seems relatively small and affordable when measured against the potential loss. Could you afford to replace your house if it were totally destroyed and you didn’t have insurance ? Hint: most people can’t. Bill Gates and Warren Buffet, read no further ! For the rest of us, let’s start that measuring.

So what is your potential loss ? The main thing here is to have coverage for the non-refundable elements of your trip. There are other things covered in these plans, we’ll deal with them later. Many parts of your trip may be non-refundable; some will be partially refundable in certain circumstances. Many are refundable up until final payment date but not after that.

For the most part, airfare is non-refundable from the day that you book it. Technically, you don’t have to lose the full airfare if you cancel and rebook another flight with the same carrier. One problem with doing that is that these “change fees” can be up to $ 150 per ticket, or more. The other problem is, what happens if you need to make a second change ? You end up paying a second change fee !

The other big, non-refundable items are cruises, escorted tours and packaged resort/hotel trips. For the most part, the deposit is relatively small and may even be refundable until final payment date. Once final payment is made, however, it is usual for the whole thing to be non-refundable. If not at that stage, it becomes so closer to your departure date.

Car rental is usually refundable as are stays at hotels if booked guaranteeing by credit card so long as you cancel by a given deadline. Many “add-ons” to packages such as excursions and attraction admissions are fully refundable unless cancelled at very short notice.

What of the other coverages ? What are the potential losses here ? Most plans include things minor compensation for lost or delayed bags which should not form part of your decision making. Two slightly more important components are medical coverage while traveling (more important with international travel than domestic) and medical evacuation.  Unless you take separate medical evacuation coverage, decisions on evacuation are made by the insurance company not by you, the policyholder.

How do you choose ? There are some fundamental choices to make before deciding upon the details of a particular plan.  The first consideration applies to the choice of whether to take the plan from your travel provider (cruise line, tour operator) or whether to take a stand alone plan from an outside company.

Plans provided by the travel provider have the advantage of being formatted to coincide with their cancellation policies. If purchasing from an outside supplier, you need to make sure that the coverage meets the cancellation terms. In general, cruise line and tour operator plan costs are flat-rate and, often, less expensive than outside cover. Why then look elsewhere ? There are two reasons.

If you purchase everything from a single supplier, all cancellation costs are in one place. If you purchased each element separately, they’re not. Let’s use the example of a cruise package with flight, hotel stay at the port of departure, cruise plus shore excursions. If all of these are purchased through the cruise line, then your plan can cover all elements. If, on the other hand, you purchased airline tickets from the airline, the hotel as a separate booking, and the shore excursion from one or more tour companies, you probably have four or more, separate lots of cancellation fees. The only way to consolidate these will be with a separate plan that encompasses them all.

The second reason to look elsewhere relates to pre-existing condition terms.  What are the pre-existing condition terms for your single supplier ?

Anybody with a pre-existing condition where there is a possibility that the condition that might change their status from able-to-travel to unable-to-travel needs to know that this is covered.  Most plans allow for covering pre-existing conditions provided that the coverage is purchased within a specified time period from the initial trip deposit. That period can be anywhere from “must be with deposit” to “within 21 days from initial deposit”.  All such plans have a “look back” period, expressed as a number of days, where they could, potentially, check to see if the insured was unable to travel during that period.

This must be stressed. Autism is a pre-existing condition. You must check that you will be covered.

One way around the pre-existing condition issue is with Cancel For Any Reason Plans. As the name suggests, you can cancel for reasons extending well beyond medical necessity. The added benefit to these plans is that the claims process is immeasurably easier.  Given the number of forms that we’ve all had to fill out for health insurance companies, school districts and every new therapist that we go to, this may be quite some benefit. The downside to these plans are that they may cost more and that may limit the payment to a percentage of the total non-refundable costs.  If a plan costs a good amount more and then only covers 50% of the non-refundable, you may be better off with a standard plan. If the extra amount is small and it covers 100%, or close, then it is probably the best option.

Here is a piece of good news. Plans are either flat rate for everybody or they take into account total trip cost and passenger age. No plan, that we are aware of, is more costly because one or more of the passengers has autism. Here is a break for us. Our risk of claim is higher than the general traveling public but our cost of coverage is the same.

Let’s summarize all of this with a checklist:

  • Figure out what your total non-refundable costs will be.
  • Determine whether they are all purchased from a single supplier.
  • If purchasing from a single supplier, check their plan against outside plans.
  • If purchasing from multiple suppliers, check a range of plans.
  • Check, and double-check, that you can get coverage for the pre-existing condition.
  • Look at Cancel For Any Reason Plans to see if one might work.
  • Purchase the plan that comes out best for you having reviewed the above.
  • Relax and go on your vacation. You’ll probably never have to claim and you’ll wonder why you bought this. You didn’t buy anything tangible. You bought peace of mind and your vacation will be the better for it.

Disclaimer. The information contained above is intended solely to give general information on the topic. Before purchasing any financial or insurance product, you should ensure that the terms and conditions are suitable for your needs and circumstances.

Which flight ? Which Seat ?

Which flightIt goes without saying that if a typical family needs to put some planning into selecting the right flight and the right seats on that flight, we need to put in even better planning for our kids. Doesn’t it ?


Of course it does. We need to give more considerations to things like the change from the normal routine, noises, crowds or the total sum of all of these. Those, however, are reasons for smart planning. They’re not a reason to give up on the idea. Here are some things to consider.


Which airport ? It isn’t all downside if your local airport is a small one. In fact the reverse is true. Start your search by looking at where you might be able to fly from one of the smaller airports. They have some advantages. Not the least of these is that smaller airports have smaller crowds and bigger airports have bigger crowds ! The other useful thing is that low-cost airlines tend to use smaller airports since that keeps their operating costs lower. This means that the optimum choice is probably from small airport to small airport. (Remember, you’re planning a round-trip.) There is a downside and that may be the limited choice of destinations.


Non-stop flights or connecting flights ? There’s a reason why non-stop flights tend to be more expensive but it has very little to do with the airline’s costs.


The reason why the non-stops become more expensive is that they are more desirable and the airlines can command a higher price for them. More desirable ? Of course. Even an adult, with no issues, traveling alone and with lots of time on their hands is better served with a non-stop flight.


Issues with connecting flights start with having two take-offs and two landings. If you child has sensitive ears (either noise or possible sensitivity to cabin air-pressure changes that happen most at those times), then you really are better served with only one take-off and only one landing. (Watch for a future post about how to help children with these problems.)


Then there is timing. If the first flight is long delayed and the second flight leaves on time, it leaves without you and you’re faced with a potentially extremely long and unplanned delay at the intermediate airport. If the delay to the first flight isn’t quite that bad, it may still be enough to turn a leisurely stroll between gates into a crazy scramble. How well does your child cope with crazy scrambles ?
Of course, if the connection involves going from one terminal to another, you possibly end up with two lots of security clearance and the lines and crowds associated with that.


There are two exceptions to the don’t-do-connecting-flights thing.


The first of those is that, if you live a very considerable distance from a major airport and your only choice is one of those small airports, you may not be able to get to many places without a connection. The choice may be made for you. Before settling for connecting flights, give some consideration to the feasibility of driving to a bigger airport in order to get non-stop service even if it is quite a distance. Next, if that just won’t work, look for flights that have a good amount of time for the connection so that you have the best chance of avoiding that crazy scramble.


The other exception is for very long haul journeys. If the journey is long enough, sitting still for too long may be an issue for your child. In this circumstance, you need to balance your considerations. Which will be the bigger problem for your child ? The long time sitting in place or all of the other considerations above ? You are the expert when it comes to your child. Only you know which will cause the more distress.


Time of day. The standard advice to all passengers is usually to take the first flight of the day. The reason for this is that your plane will have arrived at the airport the night before and is less likely to be delayed. If you take a later flight, the chances are that your plane is coming from somewhere else and any delays to that incoming flight automatically become a delay to your flight.


We, however, may have other considerations beyond that. How is your child throughout the day ? If they tire later in the day and have more problems as the day goes on, then that first flight is probably for you. If, on the other hand, your child is a slow-starter and actually copes somewhat better after a bit of time, be guided by that. The more so if that first flight is very early and may necessitate getting up well before your child’s regular schedule. When would you need to get up in order to catch a 6 am flight ? Again, the golden rule is to use your knowledge of your child’s individual needs, issues and strengths and plan accordingly.


Which seat ? While every child has different needs, it is a pretty safe assumption that you don’t want them in an aisle seat. There is too much activity in the aisle at boarding, disembarkation and even during the flight. Window seats are a different matter. Granted there isn’t much to be seen at 30,000 feet but, when there is something to be seen, will that help as a useful distraction or will it feed sensory overload ? Your knowledge of your child and their individuality should, again, be your guide.


It probably will also make sense to be seated towards the front of the plane. You will, of course, ask for priority/early boarding and that means that there is no difference, at that time, between front and back. However, when it comes to getting off the plane, the further forward you are, the quicker you’ll get off. It may pay to be away from the wings on account of engine noise but, in reality, the differences are generally minor.


Seating configuration for your family is worth a little attention. Obviously this will depend on how many people involved. You would probably like them all to be together. It may just help to think of some unusual seating patterns.


For instance, a family consisting of two parents, one child on the spectrum and one typically-developing child, when flying on a 3-aisle-3 configuration, might plan to have 3 together plus the middle seat of the row in front. This may help if your spectrum child may be likely to kick the seat in front. Good sensory input for your child may not be so much fun for the person sitting in front. Given the variation in family composition and the many different airplane configurations, it is impossible to go through every scenario. Hopefully, this illustration will help you to consider what may work for you.


How do you know which seat is which and where they are on the plane ? There had to be an app for it, didn’t there ? Actually, there is a very good one, by TripAdvisor, and it’s available as an app and on a website. The website is seatguru.com and if you search for seat guru, you’ll find the app. This will show you which plane flies your route and how it is laid out. It also contains useful information about seats that don’t recline or that have other inconvenient “issues”.


Once you’ve found the perfect seats on the perfectly timed non-stop flight, be sure to arrive at the airport in plenty of time. The airline has the right to reassign those seats if you check-in too late. This can and does happen on flights that are fully booked.


Plan well and enjoy your flight !