Tip of the Week: Travel Tips for Children With Autism

This week, writer and mom Ruth Manuel-Logan shares her tricks for travel with children on the spectrum. 

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Traveling with children can be daunting, and when you travel with a child who has autism and requires organized structure, venturing out into unfamiliar surroundings can add an entirely new dimension to the experience.

Autism is a spectrum of neurological disorders characterized by severe and pervasive impairment in various areas of development such as language and social skills. It affects 1 in 88 children, primarily boys, and it is most often detected by age 3. Because children with autism typically require predictability, vacations can be over-stimulating and distressing for the child with autism.

Unfortunately, there are many parents with children on the autism spectrum who are afraid of journeying beyond their own communities. Even thinking about taking a vacation can summon up feelings of trepidation in parents and family members. Caregivers are overwhelmed at the thought of managing quirky, self-injurious, or violent behaviors that their child might exhibit in public; they also fear stares, rude comments, or judgments by others. They may opt, therefore, to keep their special needs child at home.

But traveling with kids who have autism is possible and doesn’t have to be difficult. Here are tips that can make your trip a pleasurable one for your child and a positive experience for the family.

Choose the Best Destination for Your Child

Vacations mean transition, which children with autism may find difficult. You have to know your child and have a thorough understanding of his needs first. Children with autism tend not to be socially intuitive, and new experiences can result in meltdowns, so planning what can be executed and enjoyed by your child is imperative. “Children with autism are stress detectors. They sense others’ stress and react in ways that are considered an interruption to the planned agenda for the day. For this reason, vacations at the beach or in the mountains, where schedules are often flexible and unhurried, can be ideal for a child with autism,” says Rebecca Landa, Ph.D., Director of the Center for Autism and Related Disorders at the Kennedy Krieger Institute in Baltimore, Maryland.

Does your child like amusement parks? Is hiking in your child’s comfort zone? Do you find that his sensory issues fade when he’s basking in the sun on the beach? No matter where you travel, you should always remember the activities that your child will enjoy. Try not to overload him by bombarding him with too many things to do, as this will cause stress for everyone involved.

Include your children as active partners in the planning. Adapt it to your child’s interests, information-processing abilities, and attention span, and relate it to the upcoming trip. Researching the destination and how you’re getting there, and talking about accommodations and the kinds of activities that are well suited to your child are all part of planning process.

Make Arrangements Ahead of Time

Calling ahead to make special arrangements will make your trip easier. Contact airlines, hotels, restaurants, and amusement parks and explain that you are traveling with a child who has autism; discuss your needs and request certain accommodations.

Kim Stagliano, mom of three girls ages 11, 15, and 17 (all whom have autism) and author of All I Can Handle: A Life Raising Three Daughters with Autism, is a firm believer in planning ahead before she and her husband take their trio anywhere. “If we fly, I use the pre-boarding opportunity to tell the airline staff that the girls have autism, so that they can understand if we have a situation and offer us extra assistance if we need it.

Many major airlines, theme parks, hotels, and restaurants are often amenable to the needs of children with autism. In 2011, Logan Airport in Boston hosted a free rehearsal flying experience, called Wings for Autism, for children with autism and their families so that personnel can better understand the community. Families from three states — Massachusetts, Connecticut, and New Hampshire — took part in the airport dress rehearsal. JetBlue even lent one of their planes for the event and its flight crew volunteered their time. Families were allowed to go through a mock airport experience, including a normal screening process with airport staff checking to see how a child reacts when a favorite toy or backpack is taken away for scanning. Then they boarded the plane and helped practice staying seated and belted. Airports in Philadelphia and Newark have staged similar events and Manchester Airport in London produced an informative brochure on flying with autism, called “Airport Awareness.”

Theme parks across the country are also finding ways to accommodate children with autism. “We usually go to the guest relations office that can be found in most theme parks and request special passes so that we don’t have to wait on long lines,” says Amy Dingwall, of Trumbull, Connecticut, whose 17-year-old son, Ryan, has autism.

Prepare Proper Identification

Having a child with autism means increasing your safety quotient; many kids tend to wander and flee from adult supervision. According to a survey released in April 2011 from the Interactive Autism Network, wandering is probably the leading cause of death among children with autism. Even more dangerous is the nonverbal child who wanders and cannot supply any information.

Getting your child a medical bracelet or necklace with contact information is essential, particularly when traveling. If your child has sensory issues that would prevent him from wearing the jewelry, you can order ID tags that can be attached to shoelaces or even zipper pulls (like the ones from Zoobearsmedicalid.com). If your child is nonverbal, you might want to make an ID card to put in his pocket with a current photo, contact information, and a list of allergies. Be sure to also indicate that your child is nonverbal. “No matter where you go, remember to think ahead about safety for your child,” Dr. Landa advises.

You could also have your child wear an autism symbol ribbon or even a shirt with an autism message or organization logo so that strangers get a visual reminder. “Our kids are so good-looking, folks are often taken aback by ‘unexpected’ behaviors. Place a label with your child’s name, your name, and a cell-phone number on the back of the child’s shirt while traveling so that if you become separated, a kind soul can contact you,” Stagliano suggests. When Stagliano’s daughter was 12 years old, she slipped out of sight at Newark Liberty International Airport in New Jersey and came close to boarding a tram. “No one may have noticed a kid on her own, but she would have been in grave danger.”

Pack the Essentials…and Some Distractions

Put together a checklist to ensure that you leave nothing behind that your child will require. Children on the autism spectrum often need reinforcements, many of them tangible, so don’t forget to bring these along on your trip to reward his good behavior. All children are attached to their loveys, but children with autism can’t leave them behind because they see the loveys as extensions of themselves; forgetting them can end up putting the brakes on a much-anticipated getaway.

Soothers such as MP3 players, DVDs, or a favorite piece of string or eraser usually keep children calm and preoccupied. Think of your child’s daily routine and bring along the necessities that help him get through his day — snacks, toys, books, diapers/Pull-Ups, or assistive communication tools. Show your child what you are packing just in case he feels any angst about your forgetting any favorite items. “We go to extremes to make sure our three girls have their familiar items to help them feel comfortable,” Stagliano says. “This includes electronics like their iTouch or MP3 player, portable DVD player, games, or iPad. We make sure to pack a suitcase full of distractions.”

Practice Vacation Scenarios in Advance

Let your child know what she might expect to do or see on vacation. Role-playing what might take place during the trip can ease future regrets. Creating a sequential picture story of what will occur is an enlightening and effective tool in getting your child ready for the trip. Experts say that these types of word/picture scenarios can help relieve stress and reduce problem behaviors in children with autism.

“The entire preparation process should be spread out over the course of many weeks. Each day, create a routine where you ‘talk’ about the trip together. You and your child can arrange pictures related to the trip in the order in which the events will occur chronologically. Help your child organize pictures of the hotel or family member’s house where you will be staying into a collage or other visual arrangement. You can even provide a simple explanation or caption for each picture. As the trip nears, your child will be able to help narrate the captions and event descriptions, or affirm your narration,” Dr. Landa says. “You know your child best, so be sure to tailor the amount and complexity of information to his or her needs.”

Dingwall finds that preparing Ryan just a few days before a trip works best for him. If she reveals details about a vacation too far ahead in advance, Ryan will lose sleep because of his anxiety and will also perseverate, a common trait among children with autism, whereby they repeat a certain phrase or action. “We are always prepared with two types of picture schedules — one on Ryan’s iPod Touch, using his picture-based prompting app iPrompts, and the other a backup with pictures and Velcro backings that can easily be switched as needed,” Dingwall says.

Always Set Aside Breaks

Vacations do not fall into usual routines, so children with autism may feel lost and unanchored, and that can lead to breakdowns. Know your child’s trigger points and plan accordingly. “We don’t feel as if we have to spend all day at a theme park. Just a few hours that my daughters can handle and then a swim is much easier than eight long hours in a park followed by meltdowns. We also make sure to stick close to our bedtime routine even though we’re on vacation. Getting a good night’s sleep often helps prevent [unruly] behaviors,” Stagliano says.

Does your child tend to tire at around the same time each day? Does too much visual or physical stimuli kick start bouts of anxiety? Did you overschedule your child? “As you assemble the trip agenda, it’s essential to plan for breaks and downtime so that it is not an afterthought,” Dr. Landa cautions. As the parent, you have to know when to throw in the towel by anticipating needs and taking a break by bringing your child to a quiet spot, a relaxation space, or back to the hotel room to wind down.

Copyright © 2012 Meredith Corporation. Reviewed and updated 2013.

 


About The Author

Ruth Manuel-Logan is the proud mom of a 12-year-old child with autism whom she loves to Reese’s Pieces. Ruth is hopeful that she’ll be able to flip on the auto pilot switch and allow her son to make his own independent mark in the world one day.

Article originally posted on Parents.com

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Tip of the Week: Dos and Don’ts of Fidgets

This week, Different Roads is proud to share some tips from Nancy Hammill and Understood on the dos and don’ts of fidgets, both in the classroom and at home!

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Fidgets, like squeeze balls and key chains, are self-regulation tools that promote movement and tactile input. They can be great for kids who struggle with attention, focus and sensory processing.

But in my many years as a teacher and parent, I’ve often seen them misused. When I see a child throw a squeeze ball across the room or obsess over making shapes out of Silly Putty, I know something’s gone wrong.

The problem is we often hand fidgets to kids without any direction, thinking they’ll magically know how to use them. Then when they play with them—rather than use them as a tool—we get angry.

That’s why it’s important to teach kids how to use fidgets. Here’s what I suggest.

First, explain to your child that a fidget is one strategy in her “tool kit” to help her improve focus on a task. When used correctly in the right situation, fidgets can help her be a better listener, sustain attention on her work, and even calm down or slow down her body and mind.

Basically, a fidget is a tool to help her focus—not a toy.

Second, work with your child to identify specific times she might need a fidget. For example, she might need it when she’s doing homework or needs to sit still in a movie theater.

Third, set up clear rules for how to use fidgets in your home, and communicate them to your child. If you’re unsure where to start, here are my “non-negotiables”:

Rule #1: Be mindful. Before you grab a fidget, think about whether you need it. If you don’t know, review rule #2.

Rule #2: You can only use a fidget to help with focus and attention or to calm down. Otherwise it will be taken away.

Rule #3: Don’t use a fidget if it distracts others or interferes with the work others are doing. If the fidget does distract others or interfere with their work, use a different fidget or strategy.

Rule #4: Every time you’re done with a fidget, put it back where it belongs. (In our house, we keep fidgets in a designated basket.)

If you want to try a fidget with your child, there are many options to choose from. Experiment to find what works best for your child. But I recommend that you don’t get a fidget that has a cute face or that looks like a toy. Your child needs to remember that fidgets are tools.

When you’re ready, you can set up a fidget basket (or other spot), print the rules, and put the rules in a place where your child can easily see and review them.


ABOUT THE AUTHOR

Nancy Hammill is the 2016 National Learning Disabilities Educator of the Year, awarded by Understood founding partner the Learning Disabilities Association of America. She has 20 years of experience as a classroom teacher, literacy specialist and learning therapist.

About Understood: The professionals who advise parents on Understood are all experts in their fields. They include educators, learning and attention specialists, physicians, psychologists, lawyers and more. They share a commitment to children with learning and attention issues.

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It Takes a Team: 4 Steps to Building a Stronger Therapy Team

For students on the Autism spectrum, having a strong and reliable therapy team to support individual needs can be an important factor in student success. When members of a therapy team are collaborating seamlessly, a student is more likely to have high quality support across all areas of development (communication, social, cognitive, play, motor, and adaptive skills).

mixed working group looking at laptopThe pervasive nature of ASD across these areas means that multiple disciplines are necessarily involved in effective intervention (Donaldson and Stahmer, 2014). When we work together and have a narrow focus, we can help our students make a great deal of progress. Gone are the days of a Speech Language Pathologist, Physical Therapist or Occupational Therapist taking a student away for traditional pull out therapy and leaving no time for debriefing with the classroom team.

Who comprises the therapy team is determined on a case-by-case basis. You may be wondering where to start with this sometimes daunting task of building a strong and supportive team. Below I will discuss some strategies that are evidenced-based and the ways that I incorporate them into my busy life as a speech language pathologist.

Pairing
One of the first things that I always try to do is build rapport with staff, which is known as a behavioral principle called pairing. It is important to build rapport and/or pair with team members, especially if you are new to the team or if other new members have joined. It may sound like very basic advice, but as clinicians we are very busy and sometimes we feel that we do not have time for this piece. I am urging you to put this time with staff on the top of your priority list. Once you have a good rapport with team members, it allows you to share ideas and collaborate more easily and more effectively.

Sharing
The next tip I have is to share the goals your student is working on. If you are the teacher, share the student’s IEP goals with the paraprofessionals and explain why you are teaching particular tasks. Knowledge is power! If you are the occupational therapist, please share your student’s therapy goals with the team. Therapy takes place all day, across settings and across instructors. If the team does not know what the goals are, they will have no idea how to address them across the school day.

Reinforcement
Students and professionals benefit from reinforcement! People feel good about the work at hand when they receive positive reinforcement. Let the paraprofessional know that they are doing a great job with their student(s). Everyone likes to get praise for a job well done!

Data
Another way that we can assure that our collaboration is helping the student is by collecting daily data on skills from all domains (i.e. behavior, academic, communication). When we, as a team, create a data sheet that captures the skills and specific targets we are addressing, we can use this across the student’s day. When we take this data and analyze the progress, we can all make informed decisions about a student’s programming needs. I have included a free team-based daily data sheet from Stages Learning. You can use this data sheet to track a variety of skills.

In my 14 years practicing in the field, the majority of people that I encounter are driven by a desire to see their students. However, even with the best intentions, we may face barriers in collaborating with other staff members. Follow the tips mentioned above and reach out to colleagues who seem to need additional support. I try to continually assess the needs of the teams I work with throughout the year. Maybe the team needs a refresher on a certain skill area – see if you can work this into your yearly professional development time. When we work together as a team, we can help so many students achieve their goals!


ABOUT THE AUTHOR

rosemarie-griffin-headshotRosemarie Griffin, MA, CCC-SLP, BCBA is a licensed speech language pathologist and board certified behavior analyst. Currently she splits her time between a public school system and a private school for students with autism. She is passionate about lecturing on effective communication services for students with autism and has done so at the local and national level. Rosemarie also enjoys spending time with her family, playing the harp and shopping.

Article originally posted on Stages Learning Materials Blog.

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Medication Considerations

What do you do when your doctor recommends medication? In this month’s ASAT feature, Megan Atthowe, RN, MSN, BCBA, offers insight on a variety of approaches parents can take when medication is recommended for children exhibiting aggressive behaviors. To learn more about ASAT, please visit their website at www.asatonline.org. You can also sign up for ASAT’s free newsletter, Science in Autism Treatment, and like them on Facebook!


My son with autism has developed aggressive behavior, and his doctor is considering whether medication could help. What can I do to prepare for this conversation?
Answered by Megan Atthowe, RN, MSN, BCBA

doctor-563428_960_720First, you should know that there is no medication that specifically treats autism. Medications approved by the United States Food and Drug Administration (FDA) for other conditions can be useful only to lessen symptoms. That said, off-label use of pharmaceuticals is by no means unique to autism and is common practice for many health conditions. So while research on the use of particular psychotropic medications in the autistic population is growing, our body of knowledge is still limited. In addition, medications can and do affect every individual differently, and children can respond differently as they develop, so it is likely to take time to find the best medication at the appropriate dose. Medication management, in other words, is a complex and an ongoing process and one that is highly individualized. It is a good idea, then, to be prepared with the right information before every visit to your health care provider.

Do you know how often the aggression actually occurs? Bringing data like this to the visit can be very helpful. You may want to ask your son’s teachers to share any information they have about the aggression with your health care provider, too. (They would need your consent to talk with him/her or to share any confidential information such as behavior data.) If you have not been keeping track of the aggression, now is a good time to start, even if there are only a few days until your visit. An easy way to do this is to use a calendar. Record specifics about when the aggression happens, what the behavior is like, how long it lasts, and whether you have noticed any recent changes. It is difficult for anyone to recall these details accurately, especially if the behaviors happen frequently, so writing them down will help you to share the most meaningful information you can with your health care provider. If your son’s school team is not already collecting data, perhaps they should start as well.

In addition to information about the current levels of the behavior, be prepared to describe how the school and your family are addressing the behavior and how long that plan has been in place. Has your son’s team considered or tried Applied Behavior Analysis (ABA) to treat the behavior? Research supports ABA as an effective intervention for decreasing problem behaviors such as aggression as well as for teaching children with autism new skills. It is important to be sure that a qualified behavior analyst is supervising any ABA interventions, as they must be implemented correctly to be effective. Your health care provider may be able to refer you to a local ABA provider, or you can find a list of board certified behavior analysts at the Behavior Analysis Certification Board’s website.

Before your visit, prepare a list of the names and doses of any medications your son takes, as well as any over-the-counter medications, vitamins, or other supplements. If your son receives other therapies, share what they are with your health care provider. He or she will want to ensure that any new medication is safe to take and will not interact with other medications.

If you and your health care provider decide to start your son on a medication, decide what the goal is. How will you know when the medication has been effective? How will you know if it is ineffective? Be specific and write the goal down. Schedule a date when you will check in with your health care provider on your son’s progress. He or she may have specific suggestions about what type of data to keep.
Finally, there are some important questions that you should have the answers to before you leave. Make sure that you ask any questions you have—a responsible health care provider will want to know that you understand how to use the new medication correctly. If you think of questions later, do not hesitate to call and ask your physician, nurse, or pharmacist.

Key Questions:

  • What is the name of the medication?
  • What is the medication used for?
  • When and how should I give it to my son, and how much do I give?
  • Should I give this medication with food?
  • What effects should I expect to see?
  • What are common side effects?
  • How long will it be until I notice the desired effects and side effects
  • What side effects are serious, and what should I do if I notice them?
  • Will side effects lessen over time?
  • Is there anything I should avoid giving my son while he is on this medication?
  • If I decide that I would like to stop giving him the medication, what should I do?
  • What should I do if I miss a dose?

Please note that there is information about research related to medications elsewhere on the ASAT website.

ABOUT THE AUTHOR

Megan Atthowe, MSN, RN, BCBA, LBA, is a registered nurse and behavior analyst who has worked with people with autism and other special needs in educational, home, and healthcare settings for over 15 years. Currently she consults to educational teams who serve students with autism in public schools.

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Focus on Generalization and Maintenance

On more than one occasion, I’ve been in the situation that a student will only demonstrate a skill in my presence. And I’ve heard from other colleagues that they have had similar experiences. This is highly problematic. When it happens with one of my students, there is only one person I can blame: myself.  A skill that a student can only demonstrate in my presence is a pretty useless skill and does nothing to promote independence.

TeacherSo what do you do when you find yourself in this situation? You reteach, with a focus on generalization. This means that, from the very beginning, you are teaching with a wide variety of materials, varying your instructions, asking other adults to help teach the skill, and demonstrating its use in a variety of environments. Preparing activities takes more time on the front-end for the teacher, but saves a ton of time later because your student is more likely to actually master the skill. (Generalization, after all, does show true mastery.)

Hopefully, you don’t have to do this, though. Hopefully, you’ve focused on generalization from the first time you taught the skill. You may see generalization built into materials you already use, such as 300-Noun List at AVB press.

Another commonly cited issue teachers of children with autism encounter is failure to maintain a skill. In my mind, generalization and maintenance go hand-in-hand, in that they require you to plan ahead and consider how, when, and where you will practice acquired skills. Here are a few tips that may help you with maintenance of skills:

  • Create notecards of all mastered skills. During the course of a session, go through the notecards and set aside any missed questions or activities. You might need to do booster sessions on these. (This can also be an opportunity for extending generalization by presenting the questions with different materials, phrases, environments, or people.)
  • Set an alert on your phone to remind you to do a maintenance test two weeks, four weeks, and eight weeks after the student has mastered the skill.
  • Create a space on your data sheets for maintenance tasks to help you remember not only to build maintenance into your programs, but also to take data on maintenance.

Considering generalization and maintenance from the outset of any teaching procedure is incredibly important. Often, when working with students with special needs, we are working with students who are already one or more grade levels behind their typically developing peers. Failing to teach generalization and maintenance, then having to reteach, is a waste of your students’ time.

WRITTEN BY SAM BLANCO, MSED, BCBA

Sam is an ABA provider for students ages 3-15 in NYC. Working in education for twelve years with students with Autism Spectrum Disorders and other developmental delays, Sam utilizes strategies for achieving a multitude of academic, behavior, and social goals. Sam is currently a PhD candidate in Applied Behavior Analysis at Endicott College. She is also a lecturer in the ABA program at The Sage Colleges.

 

 

To All Autism Parents

This is for all autism parents who’ve once heard “your child has autism.”

This comment from my experiences has came with different emotions for different people. Sadness of the uncertainty…Happiness about finally knowing what the diagnosis was… And often a neutral look where I cannot see any expression.

To All Autism Parents

Over the years I’ve been contacted by thousands of parents asking for advice about their child’s autism diagnosis based on my experiences navigating the world growing up on the autism spectrum. During those times there have been many of these emotions I’ve seen from parent.

I was thinking about this recently when a mom reached out to me online telling me that her child was just diagnosed with autism. I asked her some preliminary questions such as “When were they diagnosed” and the follow up hit me when she said “my 2-year-old was diagnosed with autism today.”

This was one of the first times I ever talked to a parent the actual day of their child’s diagnosis. She told me more about how she was feeling right now. How her heart was breaking for her child. How she had seen signs for so long and how it had finally become confirmed.

Then she said I inspired her and I honestly didn’t know what to say. For her to contact me had left me at a loss for words. I took a few minutes to compose myself before following up. I than wrote this letter to the mom saying…

“Thank you for your kind words. Remember that you are never alone in this community and there are so many people who you can rely on. Many of them will have already walked similar roads to yours. Lean on these people. Listen to their stories and most importantly, cherish each and every single day that you have with your child. We are learning more about autism everyday to provide them with supports to see them progress.

I know today may have left you with so many different emotions. My parents had those same feelings when I was diagnosed with autism when I was 4. But my parents were able to get through that day and so will you. You will become a champion for your child and their greatest advocate they will ever have. I wish you nothing but the best for you and your child in the future.

Your friend, Kerry 

 

She followed up hours later with gratitude and saying that she would look into the Tool Kit. To this day I’ve been thankful to this mom for sharing her story with me. Stories like hers is why I’m an advocate today. For those other parents out there whose child is diagnosed I hope this message I shared will be helpful for you as well. If I can ever be a resource you can message me on my Facebook Fan Page here.

My hope by sharing my successes and challenges on the spectrum is that I can provide our community with resources that they can use to help their children. That’s one of my hopes that won’t be changing anytime soon.

Kerry Magro is an award winning national speaker and best-selling author. Kerry has become a rolemodel in the disabled community. Non-verbal at 2.5 and diagnosed with autism at 4, Kerry has overcame countless obstacles to get to where he is today. A recent Masters graduate from Seton Hall University, he currently is CEO and Founder of KFM Making a Difference, a non-profit corporation focused on disability advocacy and housing.

 Today Kerry travels the country sharing his story and telling our society to define their lives and their dreams in the best way they can. Of his highlights include publishing 2 best-selling books (Defining Autism From The Heart and Autism and Falling in Love) and working on the 2012 Motion Picture Joyful Noise. Kerry currently resides in New Jersey and works in New York as the Social Media Coordinator for Autism Speaks.