Do you get overwhelmed when choosing a vacation destination that is suitable for your special needs child and exciting for other family members?

You’ll be glad to know there are travel planning services and vacation destinations that are gaining  recognition for specialized services for families with special needs, including ASD and ADHD. For example, cruise lines, and destinations can acquire an Autism Certificate (e.g., Beaches resorts). Another option is for a service, destination or program to receive recognition or designation from one of the national organizations or research centers that specialize in ASD or other special needs, including:

  • SEED (Social Enrichment and Educational Development) Autism Center – for Beaches Resorts
  • CARD (Center for Autism and Related Disabilities) – centers in different states, for resorts
  • Autism on the Seas – for cruises
  • Local chapters of national “cause” organizations relevant to your family’s health

To receive the designation as Autism-friendly, the resort or service has to meet certain standards. This usually includes specialized training for employees who assist guests with travel before, during, and after their trip.

While there isn’t a travel industry certification specifically for agents, many who specialize in travel services for special needs do so because they have experience with a special needs child or adult in their family. Some agents may be eligible to acquire an Autism Certificate from a credentialing organization. Others have established a strong network with practitioners, national/regional/state organizations, and support groups.

Tips for Travel Resources and Planning for Special Needs Families

To help you sort through the choices and planning that goes into traveling with your special needs child and their siblings, we brought FAQs to travel specialist Jennifer Trinidad of Majestic Palms Travel, an agent of Modern Travel Professionals. Jennifer is the parent of a sensory hypersensitive child. She and her husband Christian specialize in travel services around the world for families who have children with a wide range of needs, from food allergies to developmental and sensory conditions. They have helped families navigate travel to Disney, Europe, the Far East, Canada, the Caribbean, Hawaii and mainland U.S., as well as cruises.

What are good questions to ask a potential travel agent, to help determine if the agent is a best fit for their family’s needs? 

Take the time to do an initial phone call with the agent(s). Five basic questions to ask are:

  • How long have they been booking travel?
  • Do they have experience in working with families with differing health needs, as well as your specific concerns?
  • What are their specialty destinations?  
  • Can they provide relevant references?
  • Do they work alone, or are they part of a broader agency? An agent with a support and resource network is incredibly valuable to you as a client.

Keep in mind that the right travel planner for your family may or may not be in your back yard. Many travel planners will work with clients regardless of where they live.

When you speak to an agent, be honest and up front about your concerns, interests, and needs. If the thought of planning the trip, and the “list of all of the possible things that could go wrong” that your brain decides to play on loop makes you want to run for the hills and hide, say so. Every family comes from a different place, mindset and experience level. If your agent knows where you’re really coming from, they’ll be better able to help guide you through the quoting and booking process, and the planning process to follow.  

What types questions should travelers expect the travel planner to ask of them, to make sure they are going to receive the best possible service from that agent?

The goal of any questions an agent will ask should be to generate a conversation so that your needs and what is truly important to you and your family are brought to the surface during the initial quoting. A more directed initial quoting process benefits everyone. For us, we have a set of baseline questions for our clients during the initial conversations. These help us know where to dig further to make sure we look at the destinations that may best suit the family.  

Some of the questions we may ask:

  • What is most important to you and your family in this trip?
  • Are there any destinations or resorts that you definitely are not interested in?
  • Are there any dietary needs within your travel party?  
  • Are there special health needs or conditions within your travel party? (additional questions specific to health needs will follow)
  • What is your family’s activity level?  Do you like to be active and on the go the entire time?  Do you like to sit by the pool or beach all day?  A combination of both?

Which destinations are exceptional in the service and amenities they provide for special needs families?

Families traveling with special needs have a variety of options, and those options will depend on your specific situation, interests, and comfort level:  

For those looking for an all-inclusive option, our favorite for families with special needs of all types are the Beaches resorts in Turks & Caicos and Jamaica. Custom kids programming, experienced staff, a culinary concierge program to support dietary needs and an all-inclusive environment gives everyone a well-deserved break (that means you too, parents and caregivers). 

If you prefer to stay stateside, Tradewinds in St. Petersburg, FL has received an Autism Friendly Certification. Also consider:

  • Myrtle Beach, SC
  • Ocean City, MD
  • Galveston, TX
  • Hampton Beach, NH 
  • Maine coast (York to Bar Harbor, or Acadia National Park) 
  • Southern California area from Anaheim to San Diego.  

Rental homes are available throughout these areas, in addition to hotels. In Southern California, of course, are the three resorts located on-site at Disneyland in Anaheim.

Of course, there is Walt Disney World in Orlando, which we absolutely love for the many ways the parks accommodate for special needs. We also like Universal Orlando Resort. Universal Orlando is consolidated in size compared to the Disney parks. You can take an accessible walkway from any of the five (soon to be six) resorts to the entrance of Universal CityWalk under 20 minutes. Depending on your on-property resort choice, you’ll also be able to take an accessible water taxi or bus. With advance notice, special dining considerations can be met at many of the full-service restaurants. Universal Orlando’s private and small-group tour guides provide a add-on VIP experiences that may provide the personalized attention some families require. Also, express passes help families avoid congested and long waiting lines. Many rides at Universal Orlando theme parks also have a Family Waiting Room, providing a safe and sheltered place for those not riding to await those that are.  

Many of the U.S. National Parks have accessible trails and activities, as do some states’ parks (check with your specific state). Depending on your specific situation, there are also cabin rentals in many parks across the country, such as Allegheny State Park on the NY/PA border, as well as RV parking/camping areas. Amtrak vacations are also a nice way to enjoy both the journey and the destination.

For more adventurous or globetrotting families, we recommend Adventures by Disney tours. With over 40 land and river cruise itineraries around the world (including the U.S and Canada), Adventures by Disney is different from other “group tour” companies.  Aside from many immersive and unique “backstage” experiences included in your package (such as private, after-hours access to the Sistine Chapel in Rome), each tour is led by two Adventure Guides who specialize in the locations and can work with their guests on activity levels and other needs.  While not every itinerary can be customized to every need, Adventures by Disney will have those discussions with travel agents and guests during both the booking process and planning process (so you don’t deposit a trip your family won’t be able to do).

Cruise lines have also take up the mantle of accessible accommodations. Royal Caribbean Cruise Line, Celebrity Cruise Line, Norwegian Cruise Line, Disney Cruise Line and Carnival Cruise Line have been recognized for their support of children and adults with Autism and other disabilities; Royal Caribbean and Celebrity have received formal Autism Friendly Cruise Line certification. All can accommodate several dietary needs. If accessibility is needed, work with your travel agent to assist you with securing an accessible room and onboard accessibility devices from approved partner vendors. 

Final tips to help families make a choice for travel destination? 

Destination choices generally come down two core considerations: 

  • Your family’s specific situation. Beaches Resorts are phenomenal, but if a plane ride, sun, sand, and ocean are not an environment compatible with your family’s situation, don’t book it. It sounds like common sense, but there are families out there who have booked something not in line with their needs hoping it will all work out, only to find themselves very unhappy. Kids can surprise you and enjoy something you never imagined they would. Make trip planning a family affair—include everyone in the planning process before and after you select a travel planner.
  • Value. I say “value” rather than “budget,” because while there are sometimes amazing deals and discounts, “you get what you pay for” rings true more often than not in the travel industry. A good example of this could be your resort room category. If you need a room in a quieter area of a resort rather than in a more active location, it could be a more expensive room than you expected. It may or may not be worth the expense, but make sure to consider all aspects. 

Keep in mind that the right travel planner for your family may or may not be at the agency in your hometown or the one owned by your cousin Sally. Search online and research agents and their services as much as you can. Many travel planners will work with clients regardless of where they live. Finally, allow your travel planner to help you think through where it makes the most sense to allocate your hard-earned travel investment in alignment with your family’s needs. 

Resources

Special Needs Vacation Spots (list provided by TheVacationCritic.com)

Allergy-Friendly Travel Resources (provided by Majestic Palm Travel Agency)

Cruise Planners: Easy Access Travel; “Autism on the High Seas”

ASD Vacations and Special Needs Travel

World Travel Excursions – Agencies specializing in family and group travel around the globe; list provided by FriendshipCircle.org

CARD Center for Autism Disorders find locations and then visit the. If you don’t see resort/vacation designations for a state, call the center for assistance.

SEED (Social Enrichment and Educational Development) Autism Center 

For children diagnosed with an Autism Spectrum Disorder (ASD), a sedentary lifestyle (including too much time on electronic devices), can worsen ASD symptoms and contribute to additional health problems such as obesity, motor impairment, and isolation. It’s been reported that as many as 40% of children age 10-17, who have autism are overweight or obese. Other studies indicate that among children age 2-19 who have autism, up to 36% are at risk for being overweight. The primary reason for these higher rates among ASD children is insufficient physical activity—the very activity that can enhance their quality of life.

Children on the Spectrum benefit from physical activity just as much, and perhaps more, than typically developing children.

In addition to boosting cardiovascular fitness and strength, children on the Spectrum who participate in regular physical activity and/or organized sports and fitness programs can make great improvement in their

  • balance and coordination
  • fine motor skills
  • overall motor function
  • self-control 
  • ability to focus on a task
  • auditory, visual, and tactile skills

Even beyond these physical benefits, participation in regular sports or fitness programs can enhance the child’s emotional wellbeing, boost self-esteem, and improve social skills. So what’s keeping kids on the Spectrum from being involved in an exercise or sports program?

Why aren’t Children with Autism More Physically Active?

Ironically, many of the benefits of physical activity tie into the reasons why caregivers are hesitant to enroll a Spectrum child in a fitness program or to allow them to play outdoors regularly. It’s true, there are challenges:  Spectrum children can have limitations in motor skills. They may not be able to plan ahead, anticipate, and respond in ways that allow for success at a task. Children with autism can become overwhelmed by the increased auditory, visual, and sensory stimuli in a sports or fitness setting. However, if a program is planned and executed properly, all of these challenges can be managed and physical activity can be an appropriate intervention activity that helps kids on the Spectrum thrive.

How to Help a Child with Autism be More Physically Active

First, speak with your child’s care team—psychologist, physical therapist, or physician—to assess your child’s level of readiness and to customize a program. Some children may begin with visits to a playground at a quiet time when they can be slowly introduced to appropriate equipment. Also, daily walks for increasing lengths of time and over different terrain (hills, wooded, city streets) can be a great beginning on the path to physical fitness. Others might join a small fitness class with children who have similar abilities/limits. For some children, the best first step may be learning at home by exploring different size balls from different types of sports, learning about the sports, and over time exploring the skills for a particular sport or activity of interest.

Swimming is a wonderful activity for children who do not have a sensory issue with water. Many towns and private aquatic facilities offer swim lessons for special needs children. Local yoga studios offer programs specifically designed for differing abilities. There is even a special certification for working with children who have autism and other special developmental needs. Another avenue to introduce fitness to your child is to bring her/him to observe other children involved in sports programs. Discuss how the children follow the coach’s instruction and work together toward a goal. Point out how the children are of different sizes and abilities. Your healthcare team can guide you to the right first steps or to organized programs that best suit your child’s needs.

What to Look for in a Physical Fitness Program for Children with Autism

Ask your child’s healthcare providers for referrals. Your child’s behavior specialist may even teach programs at their facility. Inquire with support groups, YMCA or JCC, and non-profit organizations that provide services for special needs children.

Once you’ve made a list of possible programs: Visit facilities and meet with instructors to discuss your child’s needs. Be sure to observe classes. Ask for a trial class or a trial week.

Instructors should be trained to understand and teach to the needs of children with ASD. They may have degrees in adaptive physical education or exercise science with a specialization in developmental disorders. The instructor should demonstrate understanding of the physical, emotional, and sensory needs of your child. By observing a class, you should be able to see how the instructor breaks down specific exercises/physical tasks, helps children set goals, and provides positive behavior support as well as appropriate correction. 

By getting your child involved with a regular program of physical activity, you are giving them an opportunity to challenge themself within appropriate boundaries, enhance their physical and emotional well being, and to move beyond the perceptions of what children with ASD can or cannot do.

Autism Friendly Fitness Centers in Connecticut:

The ASD Fitness Center

Autism Families Connecticut

Autism Speaks List of Recreation Activities (provides a searchable database by state) 

Yoga Movement Therapy in Central Connecticut

Resources

Obesity takes heavy toll on children with autism. SpectrumNews.org (10 Sept 2015). post by Jessica Wright. Accessed 8 May 2017: https://spectrumnews.org/news/obesity-takes-heavy-toll-on-children-with-autism/ 

AutismFitness.com (website and book by Eric Chessen). http://autismfitness.com (free e-book available)

Sports, Exercise, and the Benefits of PHsyical Acitivitty for Individuals with Autism. (9 Feb 2009) AutismSpeaks.org : https://www.autismspeaks.org/science/science-news/sports-exercise-and-benefits-physical-activity-individuals-autism 

Autism and Swimming:  children with Autism can Benefit from Physical Activity. SuperSwimmersFoundation.org: http://superswimmersfoundation.org/Autism-and-Swimming.htm  

Physical Exercise and Autism. Edelson, Stephen. Autism Research Institute: https://www.autism.com/treating_exercise 

Jones, R. A., Downing, K., Rinehart, N. J., Barnett, L. M., et. al., (2017). Physical activity, sedentary behavior and their correlates in children with Autism Spectrum Disorder: A systematic review. PLoS ONE, 12(2), e0172482. http://doi.org/10.1371/journal.pone.0172482 

PDF: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5330469/ 

Dillon, S. R., Adams, D., Goudy, L., Bittner, M., & McNamara, S. (2016). Evaluating Exercise as Evidence-Based Practice for Individuals with Autism Spectrum Disorder. Frontiers in Public Health, 4, 290. http://doi.org/10.3389/fpubh.2016.00290

PDF: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5293813/ 

Bandini, L. G., Gleason, J., Curtin, C., Lividini, K., Anderson, S. E., Cermak, S. A., Maslin, M., & Must, A. (2013). Comparison of physical activity between children with autism spectrum disorders and typically developing children. Autism, 17(1), 44–54. doi:10.1177/1362361312437416 click here

Broder-Fingert, S., Brazauskas, K., Lindgren, K., Iannuzzi, D., & Van Cleave, J. (2014). Prevalence of overweight and obesity in a large clinical sample of children with autism. Academic Pediatrics, 14(4), 408–414. doi:10.1016/j.acap.2014.04.004 click here

May 6, 2017

Diet and ADHD

Written by

The ADHD – Diet Connection

Diet and nutrition can play a crucial role in helping manage symptoms of ADHD. Recently, a lot of attention is being given to the amount of processed foods in the diet because these foods often contain additives and preservatives that are not natural to the food supply, and surely not natural to our bodies. 

Some experts recommend people with ADHD avoid these substances:

  • Food Dyes/Artificial Food Colors (AFCs)
  • Food additives such as aspartame, MSG (monosodium glutamate), and nitrites.
  • BHA and BHT, food preservatives that affect food flavor, color, and odor and can reduce nutrient quality. Both have caused cancer in lab mice.

AFCs are widely used by manufacturers across the globe to make food more colorful and enticing. Food dyes are most commonly found in foods marketed for children, but even adults are attracted to brightly colored foods. The amount of dyes used in foods has increased 500 % since the 1950s, according to the Center for Science in the Public Interest (CSPI).

These artificial molecules can bond to food or body protein, which means they can “hide in the body” and disrupt the immune system. This can have significant consequences that affect gastrointestinal function, auto-immunity and even brain and behavior. For some children, ADHD can be triggered and worsened by these synthetic colors, flavors and preservatives. 

What is an Elimination Diet?

An elimination diet simply means certain foods and/or food additives are removed from a person’s diet in order to see if symptoms improve. Things may get mildly better, improve drastically or not at all, depending on the person. Dietary change can be tricky because what and when we eat are intricately tied to physical cues, social setting, mood, and the kind of food that is available and affordable. Elimination diets have been around since the 1970’s, pioneered by Benjamin Feingold, M.D. who studied the effect of food chemicals and the role of nutrition in addressing learning and behavior disorders in children.

Over the decades, many studies in Europe and the U.S. have tested Feingold’s approach and other types of elimination diets. While traditional research finds little support for radical restriction diets, evidence does indicate elimination diets have value and can bring about a change in ADHD symptoms in some children. In fact, the American Academy of Pediatrics now agrees that eliminating preservatives and food colorings from the diet is a reasonable option for children with ADHD. 

In addition to eliminating AFCs, BHA, and BHT from the diet, some children may still require other support. This can include educational adjustments, behavior modification, life skills training, stress management, psychotherapy, nutritional counseling, and prescription medication. Like any medical or behavioral intervention, treatment benefits will vary based on a many factors such as when a child is diagnosed, the type of ADHD symptoms present, and co-occurrence of other medical conditions.

Elimination Diets are Easier than You May Think

Parents often worry that following an elimination diet or other special diet will be expensive and/or difficult—that children will dislike the changes required. But that’s usually not the case. A quick search online brings up a variety of ADHD-diet friendly recipes and shopping tips to help families make it easy to incorporate the changes into their meal planning and still enjoy a variety of delicious foods. If the whole family gets onboard with the diet, the child feels supported and the health of the whole family can improve, too.

  • Don’t make a big deal about the change
  • Make small changes, first, where your child may be least likely to notice (e.g., baking homemade cookies – you control the ingredients – instead of buying boxed)
  • Keep a variety of whole, fresh foods available
  • Reduce your visits to fast food restaurants
  • If you’re child is old enough, involve them in grocery shopping and making wise choices
  • Involve your child in food prep and cooking—make it fun!

Just remember, dietary change and behavior is a complex area of study, and while research has not established a direct cause-and-effect, it may be worthwhile to talk with your child’s doctor or a nutritionist about the connection between what they’re eating and their behavior. 

What is ADHD?

Attention-Deficit Hyperactivity Disorder (ADHD) is a multi-faceted condition that can be triggered by varying environmental, behavioral, and biological factors. A child with ADHD shows an inability to focus and/or impulsivity that is not developmentally typical for her or his age. Symptoms of ADHD fall on a spectrum from predominantly inattentive on one end to predominantly hyperactive at the other end. To be diagnosed with ADHD, a child must have a cluster of symptoms present for 6 or more months that is significantly different from other kids the same age. The symptoms must affect the child’s ability to thrive in at least two environments—usually, home and school.

Resources

“Seeing Red: Time for Action on Food Dyes” (Jan 2016) Center for Science in the Public Interest https://cspinet.org/reports/seeing-red-report.pdf

“FDA Probes Link Between Food Dye, Kids’ Behavior: NPR” by April Fulton (2011) http://www.npr.org/2011/03/30/134962888/fda-probes-link-between-food-dyes-kids-behavior 

Nigg, Joel T., & Holton, K. “Restriction and Elimination Diets in ADHD Treatment.” Child and adolescent psychiatric clinics of North America 23.4 (2014), p. 937–953. PMC. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4322780/ 

Diet & Attention Deficit Hyperactivity Disorder” Harvard Health Newsletter. http://www.health.harvard.edu/newsletter_article/Diet-and-attention-deficit-hyperactivity-disorder 

“Should  You be Worried about Food Dyes?” by Anna Medaris Miller (March 2016) US News and World Reports http://health.usnews.com/wellness/articles/2016-03-17/should-you-be-worried-about-food-dyes 

Diet & ADHD Research Studies. http://feingold.org/resources/studies/adhd/ 

Lyon, M. & Murray, T., “ADHD.”as cited in Pizzorno, J. E. & Murray, M.T. Textbook of Natural Medicine: 4th Ed. (2013) Chapter 150, p. 1252-1259. 

Verlaet AAJ, Noriega DB, et al., “Nutrition, immunological mechanisms and dietary immunomodulation in ADHD.” European Child & Adolescent Psychiatry (2014 Jul) 23:7, p. 519-29. doi: 10.1007/s00787-014-0522-2. https://www.ncbi.nlm.nih.gov/pubmed/24493267 

“Two Preservatives to Avoid” http://www.berkeleywellness.com/healthy-eating/food-safety/article/two-preservatives-avoid

“The ADHD Food Fix” by Sandy Newmark, M.D., https://www.additudemag.com/adhd-diet-for-kids-food-fix/

“ADHD Diets” WebMD http://www.webmd.com/add-adhd/guide/adhd-diets#1 

Bell, C.C. A Comparison of Daily Consumption of Artificial Dye-containing Foods by American Children and Adults.  (2013, March) Master’s Thesis Eastern Michigan University.   http://www.feingold.org/Research/PDFstudies/Bell2013-open.pdf 

Vojdani & Vojdani, “Immune reactivity to food coloring.” Alternative Therapies in Health and Medicine (2011) 21 Suppl, p. 1:52-62. https://www.ncbi.nlm.nih.gov/pubmed/25599186# 

Stevens, L.J. et al., “Amounts of artificial food dyes and added sugars in foods and sweets commonly consumed by children.” Clinical Pediatrics (2014 Apr 24), p. 1-13. Accessed 9 April 2017:  http://journals.sagepub.com/doi/abs/10.1177/0009922814530803?url_ver=Z39.88-2003&rfr_id=ori%3Arid%3Acrossref.org&rfr_dat=cr_pub%3Dpubmed& 

Choosing a summer camp for a child with autism or other special needs can quickly becoming overwhelming. Our summer camp planning tips will help you gather and organize information so you can make the best camp choice for your child. 

In any geographic area, but particularly in our corner of Southern New England, there are myriad traditional and specialty camps designed for every age and ability. Some camps will run the entire summer while others offer shorter sessions (1-2 weeks). Traditional camps may accommodate for certain special needs, and may be a suitable option. Or, you may prefer a camp that exclusively works with specific needs such as autism or learning disabilities. The best way to narrow down your options is to focus on the objectives you have for your child’s camp experience, the camp’s capabilities and operations, and your budget.

Set Objectives.

Think about the purpose behind sending your child to camp: 

  • Do you want them to enhance social skills, play sports, get more depth in academic subjects, or just have fun exploring new horizons? 
  • Would you like them to go to day camp or residential?
  • Would they do best in a boys/girls only or a co-ed camp?
  • Do they require a special needs only camp or an traditional mixed ability camp?
  • What about camp size… a sprawling woodlands campus, urban setting or something smaller and closer to home?
  • What activities interest your child? What new experiences could enhance her development? Many special needs camps include physical activities, such as climbing, swimming, or field sports. They often include arts activities such as music, drama, and fine arts. Outdoor activities are usually a staple of traditional and special needs camps; children learn to safely explore and learn about nature and work as part of a team. Academics can be another camp focus, including STEM programs, and diving deeper into literature, writing, communication skills, speech and language acquisition, and independent living skills.

Unless your child’s interests are highly specific or they have highly specific needs, the first time away at any camp, you may want to consider a camp that offers an array of experiences. You’ll want to balance that with your child's level of readiness to move outside their comfort zone, something that should be discussed with your child’s healthcare team.

How ready is your child for the camp experience? Once you’ve thought about objective for your child’s camp experience, consult with their healthcare team, teachers, and therapists. They can help you determine if your objectives are realistic. You should discuss your child’s level of readiness for a particular experience, if it is time to nudge them toward a new experience, and how to best prepare your child. As you continue with your research, you’ll likely revisit this conversation with your child’s team.

Do Your Camp Homework

If you can, tour any camp of interest the year before you send your child. This gives you a chance to see how the camp operates while in session with registered campers. Certainly plan to attend camp fairs where you can gather info on a variety of camps in your region. Most camps offer a preview day so you and your child can experience a day of camp life. There are many regional and state camp directories on line to facilitate your research. (See Resources at end of article).

Interview the camp director and head counselors by phone or in person. Key questions to ask:

Camp Operations Questions

  • How long has the camp been operating?
  • Is the camp accredited by the American Camp Association?
  • What is the camper-to-counselor ratio? 
  • What’s the counselor-to-camper ratio and what’s the staff turnover rate? 
  • What  background checks are made? 
  • How many counselors per campers work at the camp?  
  • What type of specialized training do counselors complete, or do they have credentials and experience working with special needs children?
  • How is the staff selected? 
  • Will the camp provide references of other families who have attended the camp?
  • What percentage of campers return each year?
  • What are the special needs camp’s philosophy and goals? 
  • How does the camp communicate with families and how often?

Daily Camp Life

  • What are the health and safety policies, and is the camp equipped for emergency situations?
  • Who prepares the food, and does the camp take into account the food allergies or specifications of each child?
  • What medical care is available? Can they maintain your child’s therapeutic schedule and accommodate special diets?
  • For traditional camps, is there any therapeutic programming? 
  • How does the camp handle homesickness? 
  • How structured is the daily schedule? Can campers choose which activities to participate in?
  • Is it possible to arrange for a one-to-one buddy? For residential camps, what’s the level of overnight supervision?
  • How are large groups of children managed? What are the small group activities?
  • How accessible are buildings, trails, pools and waterfront, transportation?

Costs

  • Are there additional costs for certain activities? What is the total cost of the special needs / traditional camp? Is there a refund policy in case the individual must leave early or cancel before attending camp?
  • Do they work with insurance reimbursement? Scholarships or financial aid?

Be honest with the camp about your child. You not only want to interview the camp, you want the camp to show a vested interest in learning about your child. What questions do they ask about your child? What paperwork do they keep on file? Do they communicate with your healthcare team on an as needed basis (with your consent)?

Be honest about your child’s needs, strengths and areas for development. Be forthcoming about their limitations socially, emotionally, and physically. For example, if your child needs assistance to get the day started but by afternoon is more independent and energetic, let the counselors know this so your child’s daily schedule can be adjusted accordingly. If your child has behavior issues, let the camp know.

Prepare your child for camp

If this will be your child’s first time at any camp, plan extended period of time that they are apart from you. Arrange long day trips with friends or family so your child gets use to being apart from you for the day. Especially for residential camp prep, arrange a sleepover with a so they can get used to being away from home. Begin with one night and progress to three nights for a more immersive test experience. 

When the time for camp arrives, pack a photo album or other reminders of the family in their bag. If they use digital devices at camp, record messages from family and store photos and favorite songs on it. It may also help to alert counselors to comforting routines for meals or bedtime. You and your care team also should talk with your child about homesickness. You can share your personal experiences and let them know it is just temporary to feel homesick.

You’ll make a great camp choice if you do your homework, consult with the child’s care team, and focus on where your child will thrive in the camp experience, and be able to partake in activities that interest her/him while addressing their special needs.

To get started exploring your options, learn more about Talcott’s Summer Camp Programs…so many adventures await for your child!

Resources

Disability info Camp Directories: An index of special needs camps searchable by state.

Summer Fun Camp Guide, Federation for Children with Special Needs

Online and downloadable guide that organizes camps by category (e.g., autism, learning disability, metabolic condition, physical condition, etc)

The Camp Page

Connecticut Special Needs Camp Directory 2017

Asperger/Autism Network:  Choosing a Summer Camp

Autism Consortium:  Time for Summer Planning

Special Needs Alliance: Choosing a Summer Camp for Kids with Special Needs 

Special Needs.com:  “How to Choose a Summer Camp”

We all have behaviors that can get in the way of being our best self at home, school or at work. We might lose our cool and want to scream at a co-worker. We can get stressed and want to hit something. But, we don’t. The executive thinking center of the brain doesn’t let us exhibit a behavior that will, ultimately interfere with our well-being. And that ability—to not scream, to not hit—is not easy for children on the Autism spectrum. 

Some behaviors displayed by children on the Autism spectrum would challenge the patience of angels. (Perhaps this is why parents of ASD children are often referred to as angels!) These challenging behaviors are often referred to as interfering behavior. In essence, these behaviors disrupt positive interactions with others and within certain settings such as home, school, or public places. When not managed effectively, Interfering Behavior (IB) has a detrimental effect on the social, emotional, and/or physical wellbeing of the child, his or her family, and peers.

What are Interfering Behaviors?

Interfering behavior varies among children with Autism and can range from mild, periodic vocal outbursts to inappropriate sexual touching. These behaviors disrupt the child’s day-to-day activities and prevent positive interactions with other people.

Interfering Behaviors commonly seen in Autism include, but are not limited to:

  • A tantrum that appears uncontrollable
  • Refusal to cooperate to perform a task (eat, get dressed, play a game, do homework)
  • Running from the authority figure at home, in public, at school
  • Hiding under the table
  • Eating non-edible items such as paper, erasers, soap
  • Making loud noises when quiet is expected
  • Laughing at inappropriate social times (e.g., at a funeral)
  • Destroying property
  • Being aggressive or threatening aggression
  • Banging one’s head on a wall, desk, etc. and other self-harming actions

What Causes Interfering Behavior in Autism?

Deficiencies in verbal and written communication skills, deficits in interpersonal interaction, sensory sensitivity, and difficulties with higher-level thinking and judgment are factors that underlie IB. The inappropriate behavior can result from the deficit in the skill needed to communicate feelings, needs and wants, or to successfully complete a task.

Here are a few examples:

Suri does not have language skills to communicate she wants to go outside. She throws a doll at the window to indicate this. She doesn’t know what else to do. 

Ian has limitations with hand coordination that may make playing a game hard for him. Out of frustration he throws a temper tantrum. 

A big part of healthy social functioning is linked to understanding the rules of social behavior. We listen to others when they speak. We shake hands or wave good-bye at appropriate times. Most children with Autism don’t understand the basic rules that govern how to develop friendships, how to ask for help, or when they should or shouldn’t share their private thoughts or physical bodies with others. 

John pushes a child in class because he wants to play but they aren’t paying attention to him. Pushing gets the other child’s attention, just not in a way desired or socially accepted.

Children with autism expect routine in order to feel secure in their surroundings. When routine is broken, they may have an outburst. The outburst disrupts their activity and the activity of those around them, but that is not the reason for the outburst. The outburst is their way of expressing the stress they feel and a lack of a healthy way to cope. 

Keep in mind that a behavior is a learned process. The first time a child learns that throwing the toy (rather than going to to the adult to indicate help is needed) gets attention and gets the problem resolved, the behavior is reinforced; the child will use it again and again. While behavior is typically learned over time, it can be reinforced in as little as one instance.

  • Behavior is performed to serve a need or a purpose.
  • When a child’s behavior results in a need being met, the behavior is reinforced. 
  • A behavior that is reinforced (achieves the desired outcome) will be repeated.

It’s also very important to remember that there is no one purpose or set of reasons why a given behavior develops. Two children who both have Autism may use the same IB for very different purposes.

How are Interfering Behaviors Managed?

Understanding how behavior is learned (a.k.a. the learning process) and the need it meets helps clinicians and parents identify how to manage the IB.  

In Autism research, a variety of Applied Behavior Analytic (ABA) methods have been shown to be effective for managing IB. Some of these methods/strategies are: Functional Communication Training (FCT), Visual Supports, Extinction, and Differential Reinforcement. 

Managing IB involves a variety of steps that will be unique to each child and family, and perhaps even to different settings in which the behavior can occur. The strategies used to change IB aim to 

  • nurture respect for the child and the situations in which they live, learn, and play;
  • provide a positive approach to prevent the behavior from occurring in the first place; and
  • identify ways to change the IB or replace it with appropriate behavior.

These strategies can result in significant improvement in the child’s behavior and enhance quality of life at home, school, and in the community.

Resources

Boyd, B. A., McDonough, S. G., & Bodfish, J. W. (2012). Evidence-Based Behavioral Interventions for Repetitive Behaviors in Autism. Journal of Autism and Developmental Disorders, 42(6), 1236–1248. http://doi.org/10.1007/s10803-011-1284-z

Dunlap G. and Phil Strain.  Challenging Behaviors, Autism Spectrum Disorders, and Prevent- Teach-Reinforce.  Presentation Accessed 7 Feb 2017: http://challengingbehavior.fmhi.usf.edu/explore/presentation_docs/10.10_challenging_behaviors.pdf 

AutismSpeaks.org  “Family Services: Challenging Behavior Toolkit.” Accessed 7 Feb 2017: http://www.autismspeaks.org/sites/default/files/challenging_behaviors_tool_kit.pdf 

Virginia Commonwealth University Autism Center for Excellence. “Behaviors and ASD” Accessed 7 Feb 2017:  https://vcuautismcenter.org/resources/behavior.cfm 

As a parent or caregiver to a child who has Autism, it’s quite likely you’ll be asked to participate in a treatment approach called Applied Behavior Analysis, or ABA. It may sound intimidating but it’s really a quite simple, thorough and effective approach to helping a child with an Autism Spectrum Disorder. ABA has been used in schools, child development programs, clinical treatment programs, and even in fitness, healthcare, and sports programs among many other settings.

What is ABA?

Applied Behavior Analysis is a systematic approach that applies psychological principles of how people learn to help change an undesired behavior. It is also used to help someone learn and maintain new behaviors that facilitate healthy functioning in real life situations. Essentially, if a behavior can be observed and measured, then ABA principles can be used to either increase or decrease the frequency and/or intensity of that behavior.

In treating Autism Spectrum Disorders, ABA aims to improve socially significant behaviors such as communication skills, gross and fine motor skills, eating and food preparation, personal hygiene and self-care, and work and academic skills. Therapists routinely assess strategies to ensure that improvement in a behavior can be directly attributed to the ABA plan.

How ABA Supports a Person with Autism

  • increases desirable behaviors using positive reinforcement for performing a specific behavior (e.g., teeth-brushing, eating with utensils, completing homework)
  • teaches new skills using systematic instruction and reinforcement strategies to help establish functional life skills, communication skills, or social skills
  • teaches self control and self-monitoring strategies so a person can be productive at home, and/or in academic, work and social settings
  • generalizes a behavior or skill from one situation to another (e.g., not making an outburst at home as well as at school or while at a restaurant).
  • adjusts situations that may trigger unacceptable behaviors to occur (e.g., removing toys during homework time)
  • reduces interfering behaviors such as self-injury (hitting one’s head on the wall out of frustration), destroying property, or other physical/ emotional outbursts.

Getting Started with ABA

If ABA has been recommended for your family member with Autism, the first thing to take place is an in-depth analysis of the child’s current behaviors and how those behaviors meet certain needs in a particular environment. An ABA trained clinician will identify and discuss these behaviors and why they occur in certain settings (but maybe not in others). The objective is to determine ways to modify the behavior by looking at a variety of factors:

  • the physical environment in which the behavior occurs
  • any triggers within the physical environment that contribute to the frequency or intensity of the behavior

The clinician will work with you and your child to determine new skills that can be taught to appropriately change behavior while improving health, safety, functional skills, social relationships, and independence for your child. 

What Makes ABA Different?

There are no “canned programs” in ABA; goals are always individualized to meet the unique needs of each child. How long ABA takes “to work” depends upon the child, family involvement and use of ABA strategies at home, and the behavior(s) that need to be changed or enhanced. Success is rewarded with positive reinforcement to maintain high motivation for improvement and maintenance of expected behavior. More so than many other types of interventions, clinicians track progress on specific strategies and behavior through collection and evaluation of data. 

The Parent’s Role in ABA Treatment

Parents have a critical role in the child’s success in an ABA program. Your insights about your child’s daily activities, preferences, and her or his disposition can help guide the ABA program. Parental participation is necessary to effectively reinforce the child’s progress through the behavior change process. Parents also record and track ABA data in the home, school and community settings in which a child is involved. This information is vital in helping the clinician assess “the what and the why” of specific behaviors in a variety of contexts the clinical does not see outside the office. Without exception, active parental involvement in the ABA program helps a child make steady progress and ensures he or she experiences success.

Resources

“Getting to Know ABA”  

Applied Behavior Strategies website describes ABA, practical applications and parent roles when ABA is used in treatment programs.

Applied Behavior Analysis: A Parents Guide extensive information from AutismSpeaks

ABA Resources from Center for Autism and Related Disorders

Management of Children with Autism Spectrum Disorders, Myers, Scott M., MD, (October 2007), American Academy of Pediatrics.

Applied Behavior Analysis, Autism, and Occupational Therapy: A Search for Understanding, Christie D. Welch; H. J. Polatajko, American Journal of Occupational Therapy, May 2016, Vol. 70.

Whether it’s summer vacation or holiday season travel, preparing a child or adult family member with autism for long-distance travel is a major undertaking. From packing to getting on the road, there are a few key steps you that can help make travel less stressful and more comfortable for your family.

There are two important differences between holiday travel and vacation destination travel. First, with winter holiday travel such as during Hanukkah and Christmas, your purpose is typically to see family and friends. In all likelihood, your family will be staying at the home of someone you know and trust, and with whom you can easily take steps to help acclimate your special needs family member. Even if you stay at a nearby hotel, your visit will revolve around activities with family and friends. That’s very different from staying at a resort or theme park destination, where you plan to “see and do” with much less control over your surroundings.

The second issue with holiday season travel is volume. More people are on the road during the holidays. Lines are longer, space is more congested, there’s more noise and lights, and security is heightened. You can opt to travel at times when crowds are predicted to be less heavy, but those tickets might not fit the family budget or schedule. 

Whether by plane or train, the following tips can help you manage traveling with an autistic family member with greater peace-of-mind:

Pre-departure Preparation

Once you’ve chosen your mode of travel, you want to help your family member deal with fear of the unknown, If you’ve chosen airline or train travel, slowly introduce the process to your child until you can execute a practice day prior to your departure date. 

  • Read books about traveling by plane or train
  • Watch videos (YouTube has several; watch movies that feature air/train travel)
  • Share stories and photos about your travel experiences. 
  • Make it educational: For higher functioning children, you can teach them to read a map, marking your departure and arrival destinations, and also have them navigate the airport, noting interesting things along the way to your gate.

Finally, schedule a few rides to the airport or train station. First, just drive there. A few days later drive there, park the car, and walk in. To further help you with the familiarization process, call your travel agent (if you’ve used one) about scheduling an orientation for your child. Also, search online for a Wings for Autism program near you and call the TSA Cares helpline. Both have programs for autistic passengers. Many airlines, airports and train stations also have their own programs and tours for children with special needs.

Packing

A quick Google search will reveal dozens of different ways to pack your bags. The most important thing is to make sure you have medications and your child’s favorite snacks packed in your carry on bag. If you are flying, it’s also a good idea to place one or two outfits for your special needs family member in more than one suitcase. This way, if one bag gets lost, you still have outfits your child is comfortable wearing.  Also, have your child pick one or two small plush toys to bring on board. You might have to explain why they can’t bring their big blanket on board, but maybe you can ask grandma to keep one just like it at her house. 

Pre-departure Jitters

Even if all the preparation was done well, your child may still have a meltdown. If you are concerned about being separated from your child, have a temporary safety tattoo made and placed on their forearm. Alternatively, you can have a purchase a Medical ID bracelet or a safety alert t-shirt. 

In the event that your child becomes anxious just as you begin to board the train or plane, you may want to have medication on hand to calm their nerves. Speak with your child’s physician about this a well before your trip. 

Checked-in, On Board & Underway

Once on board, you will want to have tools to help your child feel less overwhelm from the hustle all around them. Your “kid’s pack” might include noise-cancelling headphones, music and games, dark sunglasses, books, and anything handheld that will keep her engaged. If you were able to reserve a window seat, that may be a great option for your child.

Phew! You’ve made it through the trip and arrived safely at your family’s holiday destination. Hopefully, you’ve read books or watched videos about your destination and shown pictures of unfamiliar family members to  your child—maybe even had a few Skype calls. To make your family holiday time merry, make sure to brief the family members you’ll be visiting about what to expect and how to interact with your child

Resources

Ten Strategies for Traveling with a Child with Autism – Autism Speaks

https://www.autismspeaks.org/sites/default/files/documents/family-services/schlosser.pdf

Wings for Autism program to help prepare children for air travel.

http://www.thearc.org/wingsforautism

TSA Cares Helpline:  1-855-787-2227  https://www.tsa.gov/travel/passenger-support 

Amtrak reservations for persons with a disability 

https://www.amtrak.com/making-reservations-for-passengers-with-a-disability 

Holiday Travel First Aid Check List – https://www.autismspeaks.org/sites/default/files/documents/family-services/checklist.pdf 

Specialized Travel Services for Persons with Special Needs

http://www.friendshipcircle.org/blog/2012/04/04/7-travel-agencies-for-special-needs-travel/ 

Autistic Traveler – information source and services for travel with autistic children. 

http://www.autistictraveler.com

Autistic Globetrotting – a resource for international travel with an autistic family member

http://autisticglobetrotting.com/about-margalit-francus-founder-writer-editor

For a child on the autism spectrum, the shimmery swish of tinsel and flashing holiday lights can cause a meltdown of epic proportion. There are several things you can do to manage sensory overstimulation and help your special needs child thrive during the holiday hustle.

Parents and caregivers need to be aware of their child’s tolerance level for different types of stimulation and the duration for which they can handle it. Some kids on the spectrum will have an immediate reaction to any kind of stimuli, especially unfamiliar situations, sights, and sounds. Other children may tolerate hours or even days of excitement leading up to your family’s day of merriment—until they reach a tipping point. You can help your child maintain equilibrium by incorporating some of the following tips in your holiday plans.

Plan to be Prepared. Experienced parents of special needs children have learned that preparation is the first and most important step. While you won’t be able to prepare for everything, you can plan ahead in ways that will ease your child, yourself and any family members into the hustle and bustle of the winter holidays.

Here are few planning pointers:

  • Share the meaning of the season with your child. Use props or visual aids to introduce them to the sights, sounds, and smells they may encounter during the holidays. If suitable for your child, begin sharing information and visual resources (books, pictures, lights, candle scents, ornaments, etc.) a few weeks before the holiday hoopla gets into full swing.
  • Recognize when to remove holiday décor. Your favorite caramel scented candle might send your child into a tailspin. There’s a lot you won’t know about how your child will respond, which is why it is important to pace holiday decorating. There will always be something that you never expected to upset your child. Remove it without making an issue of it. Keep a list of these items so you’ll remember for next year.
  • Plan “cushion time” into your scheduled activities. Periods of stimulation need to be bookended with periods of rest. If you know your child’s limit for excitement is 90 minutes, add a buffer of 15 minutes before and after that time so you both can get acclimated and, after the event, settle down before getting into the car to go home.

Create Consistent Traditions. Every child likes to count on something special every holiday and your special needs child may need that more than other kids. Whatever it is—new holiday pajamas, making a specific type of cookie, hanging stockings in a certain place—find what helps your child connect with the holiday and repeat that meaningful activity each year.

Keep Family Informed. This is especially important for extended family that do not live with or near you but with whom you will celebrate. Let them know what to expect from your child and remind them of the range of stimuli—including holiday hugging—that may overwhelm your child. Ask them to respect boundaries and to take no offense if you have to leave the party early.

Create a Retreat Space. In your own home, and to the extent possible in the homes you will visit, identify a quiet space where you can retreat with your child.

Yes, Your Can Visit Santa! Go when the lines are shortest and the mall is quietest. Some shopping centers designate a specific date/time for special needs children to visit with Santa, often called a “Sensitive Santa Program” (see Resources list at end of article).

Rest & Recovery Days. You’ll feel pressure to see and do it all during the holidays. Most of us who don’t have special needs feel like we need the energy of a triathlete to get through it all. Even if your child appears to be handling things terrifically, schedule “rest and recovery days” where you stay at home and disengage from dashing about town. 

Partner with other Families. Connect with other special needs families in your community. You will find support and wisdom from those who have more experience and who can help guide you to find what will work for your child and your family.

Give Gifts that Matter to Your Child. You’ll drive yourself crazy shopping for age appropriate gifts that may not necessarily be suitable for a spectrum child. Your child may have her or his heart set on a toy that makes no sense to you. But it resonates with your kid on some level. Where possible, include these gifts that your child is drawn to. It may also help to make a holiday gift list to share with other family members who will shop for your child.  

Take Care of Yourself. You are your child’s world. If you are burnt out, they will sense that and it will discomfort them. Take time to care for your physical, emotional, social and spiritual needs. This also means forgiving yourself when things don’t go as planned.

The holiday season for a special needs child and their family can be just as joyous as any other family’s celebration. Perhaps, even more so as you create simple traditions that fill everyone’s heart with all that truly matters.

Resources

Information on various holiday preparations: ParentCoachingforAutisum.com 

Downloadable guide for ages birth and up; covers gift giving, family preparation, Santa visits, Hanukkah. Holiday Survival Guide for Families with Special Needs Children AbiltyPath.org 

Sensory Friendly Santa Programs:  https://www.autismspeaks.org/santa-2016

Parenting Special Needs Magazine “Surviving the Holidays” by Donna B. Wexler

Travel, Photo, Shopping  & Activity Tips: AutisumSpeaks.org 

Autism Speaks Downloadable PDF for Reducing Holiday Stress: https://www.autismspeaks.org/docs/holidaytips.pdf 

Enjoying the Holidays with an Autistic Child: AutisumSupportNetwork.com

12 Holiday Tips from the Autism Society

Personal Interviews with parents of special needs children.

Did you know there is a brain training technique that is effective for improving movement and behavior patterns in people with ADHD that is also used by world-class athletes and military veterans? It’s called Interactive Metronome®.

Interactive Metronome is a treatment that can be used alone or in conjunction with other therapies for a variety of learning, behavior, and movement disorders.

The aim of Interactive Metronome (IM) is to restore essential brain pathways that are responsible for coordinated movement and timely processing of information—also called “temporal processing” or “neural timing.” Timing of movement, coordination, and rhythm are orchestrated through the brain and are crucial to daily tasks such as getting dressed, walking, writing, and basic thinking, organization and planning. Poor rhythm and timing is associated with difficulties in attention, motor coordination, balance and gait, language processing, and impulsivity. 

Developed in the 1990’s, Interactive Metronome has been shown to improve timing and coordination of movement in people with ADD/ADHD, Autism Spectrum and other behavior disorders. It has also been successful for those with impaired motor skills, dyslexia and other learning disorders, as well as movement disorders such as cerebral palsy.

What is Interactive Metronome Training Like For a Child? 

IM uses a game-like auditory and visual platform that engages a child and reinforces the target behavior/movement pattern with high-speed, easy-to-understand feedback. The technology challenges the child to synchronize movements to a precise computer-generated reference tone that they hear through headphones. The goal is to match the rhythmic beat of the tone with the behavior/movement pattern they are trying to learn.

Movements that are trained with IM can be as simple as hand and/or foot patterns, as well as complex motor movements that involve intricate decision-making.

Research on IM shows that the approach helps children with learning, behavior and developmental disorders:

  • Improve planning and sequencing
  • Improve focus and attention 
  • Improve motor control
  • Enhance mind-to-muscle communication 
  • Enhance their ability to focus for longer periods
  • Enhance their ability to filter out internal and external distractions

IM is a way to retrain the brain using interactive auditory and visual games or cues that kids respond to.

Is Interactive Metronome Treatment Right For My Child?

Compared to other therapies, IM is still considered a new approach in treatment. Clinical research is addressing questions such as how IM can be effective for different people and for different health conditions. No two people with the same illness or disorder experience it in the same way. This is why treatments for one person might not work as well for another person. Your child’s clinician is the best person to talk with about how Interactive Metronome may benefit your child. 

Learn more with these articles & videos:

  1. IM Training in sports (general overview), Learn More
  2. Research Studies with Outcomes Described for General Audience, Learn More
  3. Shaffer, R.J., Jocokes, L.E., et al., “Effect of Interactive Metronome Training on Children with ADHD” Amer Jnl Occupational Therapy (Mar/Apr 2001), 55:2, 155-162. Accessed Nov 14, 2016, Learn More 
  4. National Resource Center on ADHD, Learn More 
  5. Medical Citations on IM and ADHD, Learn More 
  6. Video Demo of IM, Watch Video 
  7. Interactive Metronome at Talcott Center for Child Development, Learn More

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