Recreation Therapy.

skiWe have 2 jobs, as almost every parent of an autistic child does. We all have our regular job and then another full time job taking our child to all of the therapies that they need. OT, speech and language, ABA … the list goes on, doesn’t it ?

Why then, look at yet another ? If it’s recreational therapy and it is part of your vacation, there’s every reason to do so. There are some great programs out there.  The choice can be between therapy programs that happen to be adventurous, through adventure programs that happen to be therapeutic, all the way to making the most of the recreational activities on a regular vacation.

Researchers state that physical recreation is especially beneficial to children, and adults, with autism. Because of the varied nature of abilities, it is a question of finding which activities work well for your child and which ones don’t. Here are some possibilities.

Island Dolphin Care in Key Largo, Florida offers a variety of programs at IslandDolphinCare.org . The centerpiece is a 5 day “Dolphin Time-out” program. The special guest gets 1:1 time in the water with a trained therapist and the dolphins plus time in the classroom. They have plenty of alternatives to the 5-day program. Each family must go through an application process which enables them to customize the therapy to the individual’s needs. Please note that some behaviors don’t quite cut it with the dolphins but IDC will advise as to suitability.

Benefits include, but are certainly not limited to, improvement in fine and gross motor skills, speech and language improvements (we still all have so much to learn from dolphins !) and improvements in executive functioning.

In order to assist families wanting to go to IDC, we are making the local hotels a top priority when we roll out our national “Autism Readiness” certification program. What could be better than an autism-friendly hotel close to this great facility ?

Adaptive Sports Center in Crested Butte, Colorado offer summer and winter programs. That’s right, they are more than just skiing ! Obviously, they do offer all of the winter sports in season but there are so many possible activities for summer. Hippotherapy got into the top 10 list when parents were surveyed about the most effective programs that their children had undertaken. Guess what ? They have a horse riding program ! Of course, they have way more than that. If the art of finding the right recreational therapy is to try as many as possible, then this place fits the bill by offering so many choices. They are at : AdaptiveSports.org

Again the benefits can be wide ranging and include improvements in social and communication skills and improvements in executive functioning skills. There is one other, potentially huge, benefit to their summer program. To them summer is low season. If your child has issues with crowds and busy places, they have a lot of empty mountains and a whole lot of space !

This is another top-priority destination for our certification program for exactly the same reasons.

Of course, there are recreation opportunities in almost any vacation and, in order to find ones that suit your child’s abilities, the best choices will be those destinations that offer the widest variety of choices. Look for activities that you think might match your child’s strengths but don’t forget to look at a few that have the potential to turn into a pleasant surprise.

What about us ? (The parents, that is).

Everybody has their own reason for wanting a vacation. The two most often cited are the opportunity for a new, and memorable, experiences and the chance to relax.

How memorable would it be if your child got to experience and master some new activity that you had previously thought might not be possible ? Don’t we already celebrate each little improvement in their lives ?

Of course, take the chance to get some relaxation. Researchers at Brigham Young measured stress in mothers of children with special needs and found that it was at a comparable level with that of combat soldiers ! Whatever you do with your vacation, make sure that there’s some time for respite for you and the opportunity to relax. If your child can gain some new experiences and you get to relax, you’ve truly hit the jackpot.

We are working to add something special for parents on our staffed group vacations over and above the recreation and respite opportunities. We will be adding a daily parent-coaching-for-autism workshop. It will be included at no extra cost. These sessions will be conducted by a fully-certified parent coach.

 

Note about our post on Wandering. At the time of publication, we had been unable to contact the manufacturer of the Travel-tot Kit. We have, since then, heard from them and they have given a little more detail as a comment. The best part is that they have also offered a 20% discount to readers of this blog. When ordering from their site, quote a coupon code of TRAVELERS.

Wandering. Not a good vacation activity.

 

stopsignDo you worry about your child wandering off ? If it’s a worry while at home, it’s bound to be a major concern while on vacation. There are some things that you can do to prevent this and some useful resources that you can use, if they become necessary.

Of course, resources that you may need for this while on vacation are probably just as useful at home.

Let’s start with the simplest precaution. For this I’m grateful to Barbara Cooper and Nancy Widdows of Super Kids, which is now a part of the Southfield Center in Darien, CT.

How simple ? Enough to be elegant. Print out a stop sign and tape it to the doors. Barbara and Nancy had a problem with a couple of kids trying to run off sometime during sessions at Super Kids. They never got far but it was a worry. Posting the stop sign on the door stopped these attempts with nothing else needed. It’s the visual versus verbal thing. So do print a couple out and take them and some tape with you. Put one on the hotel room door and one on the door to the balcony, if you have one.

There are some excellent tips online. One that stands out is from Shelly McLaughlin at Pathfinders for Autism  parent-tips-when-they-wander-or-run-away . Her tips, in turn, point to some excellent further resources.

Next, a bit of planning will help. Check out the layout of the hotel/resort that you plan to visit. Does the front door lead directly to a main road or is the resort situated on its own plot complete with fence and a gate for security at the entrance ? Obviously the latter is the better. You’ll be in a position to alert security staff about your child and to contact you if they try to leave the premises.

You can also check with the hotel about extra security for doors and windows. For example, Tradewinds Resorts in St Petersburg Beach has an available “safety kit” that covers that and more. By the way, elopement prevention will be a major component of our “Autism Readiness” certification program as we roll it out to hotels nationwide.

You should look at baby-proofing devices that are primarily intended to stop neurotypical toddlers from wandering. Why might these work ? The real trick to most of them is that, in order to operate them, they require some executive functioning and some fine motor skills. That defeats most NT toddlers but not too many adults. If your child, of any age, has difficulties with executive functioning and/or fine motor, these could be very helpful. Home Depot has a reasonable selection. Babies R Us has more.

With these, you’ll need to look for two special features when traveling. You’ll need things that don’t attach permanently or damage surfaces (hotels may not take kindly to you leaving screw holes everywhere) and it would be sensible to look for the lightest, most easily transported devices. Of course, try them at home to see if they are effective before you take them anywhere.

We found a kit that seems to cover this well from Travel-Tot in New Jersey. Their Kit looks good but, to date, we haven’t been able to reach them for further questions.

 

What is “Plan B” ? It makes sense to take some precautions against your child actually running off, no matter how much you’ve done to prevent this. Here, the good resource is Dennis Debbaudt who is an expert in the field and who has an Autism Emergency Contact Form. This form is designed for you to have descriptive details of your child, including a spot for a recent picture, together with your contact details. If you take a couple of copies of this with you, you can get them copied and distributed to anybody assisting in the search for your child. The PDF for this is available at: Autism Emergency Contact Form .

 

There had to be an app for it, didn’t there ? This is from a highly unusual source . It comes from the FBI ! It’s free and available from the App Store on iTunes. It is the electronic equivalent of the Emergency Contact Form. Look for The FBI’s Child ID App.

 

Here’s another hi-tech resource. If your child does wander off, why not locates them with a GPS device ? One good one comes from Star Kids by LockStarTM.   StarkidsGPS.com .  With this, hopefully your search for your wandering child will be short and successful and you won’t even have had time to organize a search.

 

Travel safely.

Potty Training

1Can Toilet TrainingWhat are the barriers to taking your autistic child on vacation ? Is lack of toilet training one of them ? Do you fear embarrassment from accidents in the swimming pool or soiled bed linen overnight ? Don’t let this be a barrier. There are some things that you can do.

The first, and obvious, thing to do is to revisit toilet-training and work for a better result than any previous attempts. That will do way more than improve your vacation. Success, if it can be had, will give you a 365 improvement in the quality of life.

Why is toilet training such a big deal with our kids ? You name it; delayed general development, sensory issues, anxiety issues and the communication problems that can be associated with teaching them anything. That probably doesn’t cover all of it, even then.

When we’re faced with other issues for our kids, we try lots of different options until we find something that works. Here are some options that are specific for helping autistic children and some suggestions for what to do if even these fail.

Free options are around. There are “tips” in a number of online resources. Of course, as with all online tips, it may pay to read several and pick those tips that look sensible to you. Alternatively, if you want a single source you can go to  Pathfinders for Autism Parenting Tips  . Their tips come from Shelly McLaughlin at Pathfinders for Autism and give lots of practical help. Of course it is written with autistic kids in mind so it is way better than just general tips.

There had to be an app for it, didn’t there ? Actually, there are probably quite a few. A recommendation comes from Traci Sutton of Oklahoma. She checks out a huge number of apps for use in her clinic and recommends the ican Toilet Training Program by Sandbox-Learning. It costs $ 0.99 so the price is right. It is available for iPad and iPhone. No mention anywhere of an Android version but that may be available.

Of course, free or cheap may not be the way to go. It may pay to go for something altogether more comprehensive. One absolutely excellent source is Connie Hammer, a Certified Parent Coach at Parent Coaching for Autism.

She has an online program with strategies to help parents with potty training their kids and, over and above that, she has a live course online that includes classes and workbooks and a Q&A session for anything that might still be in doubt.

The course includes strategies for generalizing from your bathroom at home to other bathrooms such as public restrooms and strange bathrooms that you may encounter while traveling. That makes this the resource that can help you most when toilet training has been an issue that hindered your travels.

You can find her program at: Potty Training 101.

Quite apart from the issue of toilet training, Connie is an expert in the field and can coach parents on a whole range of other parenting issues.

 

OK, what if none of the above work out for you and your child ? You would need “Plan B” wouldn’t you ?

Fortunately, there is a great possibility here.  The SOSecureTM  Swim Containment Brief is designed to work when accidents happen in the pool. It is a product of Discovery Trekking Outfitters in British Columbia. While they don’t market this for the purpose, it is possible to use the Swim Brief with a disposable inside and prevent overnight accidents from soiling the bedding. This combination copes with almost any need. The Swim Brief needs nothing underneath it for the pool. Take a look at : SOSecure Products

Again to stray from the subject, you might want to check out Discovery Trekking’s ultra-fast drying towels. They work differently from regular towels and can be used to “dab” dry rather than rub. For some kids whose sensory challenges include a dislike of rubbing, this can be very useful.

No barrier should get in the way of your wonderful child having a great vacation and you getting an incredibly well-deserved break. Certainly, don’t let toilet issues do that !

Airport “Practice” Boarding Programs

wings2Taking autistic kids on vacation often causes concern/doubt/fear/terror for their parents (pick the one that applies to you) and one of the “biggies” is the whole airport experience. You need to help your child negotiate crowds, strange and/or unusual noises, strange smells and, potentially, long periods of waiting.

How would it be if there was a program that allowed families to practice the whole experience before they took an actual trip ? Wouldn’t it be very cool if such a program were also very inexpensive ?

Good News. There are such programs out there and they’re not just inexpensive, they’re FREE !

They vary in both size and frequency. Some of the details also vary but, generally they cover everything to do with flying that can be done without actually leaving the ground. This includes checking in, getting a boarding pass, going through security, getting to the gate, boarding the plane, finding your seat, fastening seatbelts and preparing for take-off. Some also include an on-board snack ! Most also cover going to bag-claim after getting off the plane.

While the primary aim is to help families to practice the whole experience, orientation training is provided to TSA, airport and airline staff before the event and teaches air personnel that parents are their best resource if they have questions about a person on the autism spectrum. Not only do the organizers of these events do this as volunteers but also the TSA, airport and airline staff are often also doing it on a volunteer basis.

Where and when are these events ? I’ve attached a table to this posting with the best information, currently, to hand. It is incomplete. We tried to contact every program that we could find. Volunteers frequently end up with more to do than time in which to do it and some couldn’t, in consequence, get back to us in time. We will update this table on a frequent basis, as more information comes to hand so look for those updates. Here are a couple of specific programs where the organizers were extremely helpful:

  • Navigating Autism is run by the Autism Society of Minnesota (AuSM) and they have the most frequent program; once per month at the Minneapolis-St Paul airport (MSP). They work with the Metropolitan Airport Commission and Delta Airlines. The airport has a social story available online and AuSM have a “tips” sheet online that was prepared by a Delta pilot whose own child is on the spectrum.
  • The Wings for AutismTM was developed by the Charles River Center (a chapter of the Arc) in collaboration with the Massachusetts Port Authority and Jet Blue at Boston, Logan (BOS).
  • In collaboration with Charles River Center, Autism Families Connecticut runs a Wings for AutismTM program at Hartford, Bradley International (BDL) twice per year in June and November. Their next event is on June 15th, 2013. You can still register for this.
  • The Arc of the United States will be taking the program to additional airports during 2013 with more to be added in 2014. We will receive updates from the Arc and will, continuously, update the table of programs to reflect their roll-out.

What to do if there is no program near you or you want to fly before the next scheduled event ? You can do part of this for yourself by taking a “dry run” to the airport. You’ll be practicing getting there, and some general familiarity with the land-side of the airport. It isn’t as extensive as any of these programs but it will help. And, of course, watch out for news of these programs and sign up for one as soon as there is one near you.

Special thanks to Nicole Goble, Leah Wood and Julia Yach for their help in providing information.

Here’s the PDF.   Airport Practice Boarding Programs

 

 

Flying to see Janet – Part 2

Vickers - flying to see janetTaking a family vacation when one, or more, of your children has autism can be very difficult. Many families restrict themselves to whatever they can reach within driving distance of home. If only they could fly.

Flying gives you infinite range. But how can you make the flying experience work ?

The book Flying to see Janet – written by Laura Vickers and illustrated by Peggy Wargelin is a great way to help. Laura wrote this book for her niece, Janet who has Asperger’s syndrome and severe anxiety. Peggy is Janet’s mother.

The main section of the book is a social story that will help many children on the spectrum before they fly. It also has some really useful suggestions for parents and those suggestions are reproduced here by kind permission of the publishers, Jessica Kingsley Publishing.

They provided me with a link to their site so that readers of this blog can order the book directly from them and receive a 20% discount. In order to receive the discount, use the Promo Code: TRAVEL. This offer is valid until the end of June 2013. The link is at the end of this post.

What could be better than 20% off ? Free would be good, wouldn’t it ? Any family that books a vacation with flights and a 3-night or longer hotel stay with ASD Vacations, will receive a copy of Flying to see Janet, absolutely FREE.

Here are the remaining 3 sections of “Suggestions for parents” from Flying to see Janet. The first 2 sections were  posted earlier..

 

PLANNING  FOR SENSORY ISSUES.

 

If possible, have the child help make the plan for dealing with sensory issues and choose what they’d like to bring in the “Go Bag”. If Janet feels she has something she can do in a situation, it gives her a sense of control that reduces her anxiety.

Noise.

Especially in places with high ceilings and lots of people, for example check-in and security, there can be a lot of echoing background noise. Noise reduction headphones or listening to music from headphones can help. Ear plugs come in many different styles; you may be able to find one that your child likes. Bathrooms can be noisy, especially with the loud, unexpected flushes. Carts used by the airline to transport people emit a loud, piercing beeping as a warning.

Crowds.

If your child is feeling overwhelmed and needs more space in a crowd, we have found it useful to use our adult arms and bodies combined with luggage to create at least a small breathing space around Janet. She doesn’t like to be touched when stressed, so we can’t just pick her up to raise above the crowd.

Smells.

Strong smells can happen anywhere, especially in crowded places. As discussed in the book, brining something with a strong flavor to chew or favorite perfume or smell to put on a tissue to hold up to your child’s nose can help. Places to be especially aware of are drop off/pickup areas (where exhaust builds up) and bathrooms. Also, if it is a warm day, be aware that an aircraft has limited electricity from the time it pushes back from the gate until just before takeoff; there may be several minutes without air conditioning.

Temperature/Touch.

You can bring a first aid chemical cold pack and use it to cool down your child if they become too hot. A battery powered mini-fan can also be useful in the heat. If it is cold, don’t count on a blanket or pillow to be provided on the plane. Bring lots of layers, and perhaps chemical warming packs. If your child likes to touch everything, or has allergies, like Janet, bring some antibacterial wipes and wipe everything that the child might touch.

 

 

 

ON THE PLANE

 

When booking, make sure that you get the seat type that your child needs (window, aisle, center). Many people will trade seats on the plane if you need them to, but don’t count on it. Seats near the back can have very loud, constant engine noise. Seats near the bathroom can feel crowded as people stand in line. If the window is over the wing or engine, you may not be able to see any scenery.

Sometimes the airline will change the plane type after you buy the ticket. What was a great seat in the middle of the plane may now be in the back, or what was a window seat may now be a center seat.  We usually aim for near the front (but not at the front) on the left side; seat “A” remains a window seat, no matter what.

Ask for (and watch for the start of) early boarding. Many people board early even if they don’t need to so, make sure you really are “early”, stand at the front of the line as soon as it looks like they are getting ready to announce. Don’t wait until they actually do.

In addition to smell, another potential bathroom issue may be the loud (scary) noise of the toilet and sink water being sucked out when you flush it. You may want to flush the toilet for your child after they leave the bathroom. Be aware the sink also drains noisily, by suction.

Bring gum or something to chew to help with ear pain as the pressure changes. Motion sickness medicine might be a good precaution.

If your child reads the emergency card or is distressed by the safety briefing, try to explain the “just in case” aspect of it and then distract them.

 

IN GENERAL

Bring food your child likes. Don’t plan on food being available. On one of our trips there had been a trucking strike and the restaurants had no supplies. You might be delayed on the plane before takeoff or diverted to a different airport. Better safe than sorry.

Bring lots and lots of things your child might like to do—some new, and some familiar and comforting; some to do with you and many to do alone. We found that a laptop with lots of games loaded and a WiFi connection to get online worked well. The laptop can be used to show DVDs. We also brought a Nintendo DS with many spare games. It was a special treat for Janet to have basically unlimited electronic game time. It was nice for us, since brining extra games didn’t require extra weight or space. Don’t forget the charging cords and/or extra batteries. Sensory toys are also good, as are drawing supplies, stickers, puzzle books, a portable CD player, etc.

 

Good luck. The first time is always a challenge, but good preparation makes it a lot easier. Janet now loves to fly. We hope your child will, too !

 

 

Here is the link. Don’t forget that the Promo Code is : TRAVEL

Reprinted by permission of Jessica Kingsley Publishers, 2012, Laura Vickers, Illustrated by Peggy Wargelin, Flying to See Janet: A Fun Guide to the Airport Experience, ISBN: 978-1-84905-913-8,

Click Here

Flying to see Janet – Part 1.

Flying to See JanetSocial stories are used very frequently as a means of assisting autistic learners. Wouldn’t it be wonderful if there was a good social story to help kids on the spectrum when it comes to airports and flying ? Just possibly, wouldn’t it open up a whole new world to them ?

The great news is that this does exist. This is, precisely, the nature of the book Flying to see Janet – written by Laura Vickers and illustrated by Peggy Wargelin. They cover the whole experience from packing to bag claim (via turbulence and on-board bathrooms) and put lots of emphasis on coping with sensory issues. The whole thing is beautifully written and superbly illustrated.

Hold that thought. Couldn’t the book be even more useful if it had plenty of practical suggestions for parents ? Wouldn’t you know it ? It has that too. I was impressed by this section. It covers almost everything and the tips are clear and easily followed.

I liked the suggestions so much that I contacted the publisher and gained permission to reproduce them on this blog. The publishers, Jessica Kingsley Publishing, have also provided me with a link to their site so that readers of this blog can order the book directly from them and receive a 20% discount. In order to receive the discount, use the Promo Code: TRAVEL. This offer is valid until the end of June 2013. The link is at the end of this post.

Here are the first two sections of “Suggestions for parents” from Flying to see Janet. The remaining 3 sections will be posted soon.

 

GETTING TO, AROUND, AND FROM THE AIRPORT.

Try to visit the airports ahead of time, or have someone else do so:

  • How will you get there ? If in a car, where will you park ? If with a friend, in a taxi, public transport, etc., what will that be like and where will you be dropped off ?
  • Can you find a map of the airport ? Which terminal(s) does your airline fly from and are there any neat spaces your child might like ? Boston airport has spots with kinetic sculptures that Janet finds fascinating. Detroit airport has a tunnel between terminals with a rainbow light show and relaxing music that you watch as you ride along the moving walkways. Many airports have fountains. A calming , quiet place with something interesting to see may be worth some extra time at the airport to visit.
  • What food is available in that terminal ? Different terminals may have different restaurants. Which, if any, chain restaurants are there that you could try away from the airport beforehand to find something your child likes to eat ?
  • How do you get around in the airport ? Most have moving sidewalks, elevators and escalators, but some have buses and monorail/subway trains. This may be a challenge or entertainment, depending on your child.
  • Bring two adults, if you can, for as much of the trip as possible. One can attend to the child and the other can:
    • Scout for paces to sit, eat, etc.
    • Handle paperwork at check in, security, boarding, and baggage claim
    • Clean things before the child gets there.

 

SECURITY

 

  • Avoid wearing anything that will trip the detectors. Women, do NOT wear an underwire bra. Once you’ve made it through the scanner, you aren’t allowed to come back. I was stopped at a scanner, and was then required to go to a second, different one. Because I had sent my child through first, she couldn’t come back to me, even though I had to go to the other scanner !
  • The United States Transport Security Administration (www.tsa.gov) has a page devoted to traveling with children with disabilities.  It has a comforting statement that “at no time during the screening process will you be separated from your child” but as demonstrated by the “underwire scenario” above, things may differ in practice. Knowing what is supposed to happen may help if something comes up on your trip.
  • If you have two adults, send one through with all the bags. When you can see the first is ready, send the child through, and then the second adult goes through.
  • Be sure to read and understand the regulations for what is allowed in carry-on luggage in your area and for your flight ahead of time. Completely empty water bottles and water-filled toys before going through security, and refill them afterwards.
  • There are exceptions to the security rules for medications, infant formula, or anything medically necessary, but you must present each item separately to security personnel. For Janet’s nut allergy, we carry an Epipen® with full prescription label on it, and a note from her pediatrician stating that it is medically necessary for her to have it with her. You can probably get a therapeutic item through security with a doctor’s not stating that it is medically necessary. We once had Play-Doh® confiscated because it looked like plastic explosives, but we had no note.

 

 

Here is the link. Don’t forget that the Promo Code is : TRAVEL

Reprinted by permission of Jessica Kingsley Publishers, 2012, Laura Vickers, Illustrated by Peggy Wargelin, Flying to See Janet: A Fun Guide to the Airport Experience, ISBN: 978-1-84905-913-8,Click Here

 

The Autism Passport

Dining Choices, Turks and CaicosI had the privilege of hearing Dr. Brenda Smith-Myles at the Northeast Regional Conference on Autism. Her keynote address concerned Transitions. Although the address covered many techniques and tools for helping with transitions, one really struck me.

This particular tool was The Learner Snapshot which she had developed with Judy Marks. Her point was that a teacher could spend a whole year figuring out the strengths and challenges of a student and then, when that student moved on to the next grade, the new teacher could spend the next year learning all of the same information. The Learner Snapshot provides a framework for one teacher to pass on their experience to the next and to make the transition that much easier.

In one of those “aha” moments, I realized that something similar would help parents when dealing with hotels, resorts and cruise ships. Parents are the experts when it comes to their children. They know, well, the challenges and strengths of their own child. They need to communicate those to caregivers who will be assisting their children wherever they are vacationing.

Starting with their document as a base, I was able to remove things like Learning Style and add items like Sensory Challenges.  The other difference that we needed was to try to give the intended recipients just a little background on some common issues for autistic people so that they had a frame of reference. Special Education teachers, of course, already know these things. The resulting document is The Autism Passport.

I’ve had it reviewed by a number of experts in the field. Feedback has ranged from GREAT !!! to Dr Myles’  own “Very cool !”.

I’ve also shared it with a number of resorts. Their feedback has varied from “yes, we would welcome this” to that plus “can we get a copy in advance of the guest arriving ? It will help us to prepare ahead of time.”

So here is the Autism Passport. Please use it, if it will help you. Please let us know, if you think that it can be improved.

Autism Passport – 05.01.13

Autism Passport – 05.01.13 – Printable

Prints on letter size paper and should be folded to make a half-letter sized booklet.

 

Thank you Brenda and Judy for the inspiration