Keeping Children with Disabilities Safe in a Digital World

By: Yvonne D. Anderson, LCSW, CADC, CODP II

All parents want to protect their children. And all children are vulnerable online, whether they’re using email or chatting on social media sites. When your child has a disability or developmental delay, those protective instincts switch into high gear. Identifying potential threats online is more challenging than, for instance, spotting a danger on the playground. Additionally, many children with disabilities struggle with reading social cues, managing emotions/ behavior, and making judgment calls about others. As a result, they are at a higher risk for cyberbullying and online victimization. As a parent or caregiver, you are your child’s first line of defense. Use the following guidelines to navigate the online world and keep your child safe.

Make your home network safe.

Avoidance is the best policy when it comes to sexual content, violent images, online predators, malware, and cyberbullying on the Internet.

• Increase your security. Use updated virus protection and other safety measures, such as firewalls, to protect your computer from hackers and other cyberattacks.
• Make it public. Keep smart phones, iPads, and computers in shared places where it’s easy for you to monitor online behavior.
• Filter content. Install filters to block unapproved websites and images.
• Set up parental controls. Limits can be set in multiple ways, such as through your internet or mobile service provider, directly on the device itself, and through site-specific services, including YouTube, Netflix, and Facebook.
• Use child-friendly browsers. Some browsers are designed specifically to allow young Internet users to explore and learn without coming across offensive or dangerous content.
• Review the browsing history regularly.
• Disable location-tagging. A GPS-enabled smartphone or computer can reveal your child’s location through online posts and uploaded photos.

Photo by Dzenina Lukac on Pexels.com

Teach your child how to behave online.

Educating your child about appropriate online behavior is vital if you want to keep her safe no matter where she accesses the Internet.

• Establish ground rules. Identify what is OK to do online and what activities are prohibited. When it comes to content, use the same guidelines that you employ for television viewing: if they can’t watch it on TV, they shouldn’t look it up online either.
• Teach your child that information shared on the Internet becomes and stays public forever.
• Review information that should not be shared. Help your child understand what types of information are unsafe to share online, such as their full name, address, phone number, school, or other images/ information that could help someone identify them. To help your child remember, post a “Do Not Share” list by the computer or on the device.
• Explain the limits to online relationships. Emphasize that it is okay to say “No” to requests for personal information, photos, money, and joining social media networks.
• Be smart about emails. Let your child know how dangerous it can be to open an email or attachment from someone they don’t know. Reinforce the importance of checking with you or another trusted adult if they get a message that they’re unsure about.
• Encourage your child not to delete messages. Tell them to save anything that they’re not sure about, doesn’t feel right, or seems hurtful. Set aside time to review the messages together.
• Explain cyberbullying, predatory behavior, and sexting. Although it may feel uncomfortable to talk about, your children can’t protect themselves from what they don’t know about. Rehearse “what to do if…” scenarios.

Photo by Julia M Cameron on Pexels.com

Provide resources and support.

Children also need to know how to identify when someone else is behaving inappropriately online and what to do about it.

• Use online tools. Websites such as InternetMatters.org or NetSmartz.org provide a wealth of resources for both parents and children. InternetMatters is a resource hub specifically designed for children with additional learning needs and their families. These sites offer tools help children learn about online dangers using role-playing, pictures, and other strategies. NetSmartz resources also include the SymbolStix safety pledge, a visual online safety contract designed with support from the National Autism Association.
• Encourage them to trust their gut. Teach your children to be skeptical and listen to their own instincts. Use role-play to practice recognizing and responding to several different scenarios your child may encounter online.
• Give them a lifeline. Make sure your children know that you and other trusted adults are available for them if they run across something online that makes them uncomfortable. Even if they’ve done something they shouldn’t have, it’s important for them to be able to reach out to adults they can rely on.
• Find safe online spaces. Seek out social networks and peer support that are focused on activities and interactions that match your child’s interests and developmental level.
• Be curious and ask questions. Find out what websites your child likes to visit. Have they ever seen something online that made them feel sad, scared, or confused? What would they do if they saw something online that made them uncomfortable?
• Connect with your child by learning how to use the technology and social media that s/he is using. Ask them to show you how it works and specifically how they use it.

Photo by Ketut Subiyanto on Pexels.com

Reach out to Easterseals’ Social Services team for more ideas about how to support your child’s social and emotional development. You can contact us at socialservices@eastersealsdfvr.org.

Nutrition/Feeding Clinic at Easterseals DuPage & Fox Valley –The Comprehensive Approach

By – Cindy Baranoski, MS, RDN, LDN and Laura Van Zandt OTR/L

-Updated February 2023-

In January 2019, a groundbreaking article was published in the Journal of Pediatric Gastroenterology and Nutrition describing children challenged with feeding problems and their care. Pediatric Feeding Disorders (PFD) is the term the expert team of authors define as “impaired oral intake that is not age-appropriate, and is associated with medical, nutrition, feeding skill, and/or psycho-social dysfunction.” It establishes the basis for creating and implementing a medical diagnosis code that would support children identified as having problems in any of these four areas, which are impaired by or impairing a child’s ability to eat a diet that is expected for age.

It concludes with the primary need for children to be identified early and receive interdisciplinary evaluations and interventions instead of seeing one practitioner alone to try and help all areas. Interdisciplinary thinking, evaluations, and treatment have been the core practice of Easterseals DuPage & Fox Valley’s Feeding Clinic for the past 21 years, since its inception in 2000.

What Brings You Here

From the moment we are born, feeding and eating is something that is supposed to come naturally to everyone. When a baby is born, we feel an overwhelming sense of love and a strong desire to watch over, protect, and nourish to grow. When it’s time for feeding, our bodies are already preparing the necessary tools to breakdown and process what is provided. Feeding involves more than just our mouths. At play are the sights (color, shape, size), feelings (warm, hot, cold, crunchy, chewy, soft, sticky), smells (sweet, stinky), sounds (loud, quiet), and most significantly, the way our body works. From how our muscles work together to align our trunk in sitting, allowing our arms to reach, grasp, and explore, to coordination of suck, swallow, and breathe, and manipulating the food in our mouths, everything sets the foundation for a good relationship with mealtimes and foods. Our past and current experiences all shape our belief around feeding and nutrition. Your body must work all together to receive and process nourishment.

For some children, however, this process isn’t easy and doesn’t always come naturally. Many children struggle to coordinate their bodies to eat or drink and have GI systems that do not process foods well, leading to constipation, diarrhea, vomiting, and gastroesophageal reflux, which then leads to poor growth, frustrations, fear, and worry. For children with respiratory conditions, poor coordination of breathing, overall weakness, eating a meal like other children their age is nearly impossible. Yet, they still need what other children need – nourishment, socialization, variety, scheduled mealtimes, and interaction with foods. For children, who may be fed through a tube, eating may not be the primary mode of nourishment, but all the other factors promote development, health, and good growth.

As a parent, there is nothing more important than watching your child grow and thrive, and nothing is more heart-wrenching than watching them struggle. When a child does not eat, parents feel blame and guilt. We ask ourselves why? Did I do this? What could I have done differently? We try a host of different strategies. We Google and seek advice from family, friends, and medical providers. We fall back to what we know, which may or may not work.

Who We Are

Our Feeding Clinic at Easterseals DuPage & Fox Valley consists of a team of individuals who have a passion for helping kids with feeding, mealtimes, tolerance, health, and growth. Our team assesses the many different reasons why a child might be struggling. We are not just looking at their ‘behavior’ but dig deeper and aim to understand the core source of the behavior and what it is communicating. Eating is so much more than bringing food to the mouth, chewing, and swallowing.

Our Clinic consists of a registered dietitian nutritionist, speech and language pathologist, occupational therapist, and a social worker. The team has over 230+ years of combined expertise and has gone on for extensive training in many areas, such as NeuroDevelopmental Therapy (NDT), Sequential Oral Sensory (SOS) Approach, DIR/Floortime, Respiratory and Rib Cage Development, Homeopathy, and Chinese medicine.

As a team, we review your child’s birth and developmental history before the appointment, with a thorough analysis of the diet record you submit. We ask you to let us know your evaluation expectations when filling out the paperwork, both online and written forms. Our goal is to meet these expectations. During the actual meeting we are looking and listening for red flags that clue us into issues driving the challenges your child is having. A list of possible reasons why your child might be seen by our feeding clinic is found in Table 1.

Table 1

What Happens, What We Do, and What’s Next

At Easterseals DuPage & Fox Valley, we are able to evaluate a child at our Villa Park center or through tele-therapy. Keeping our clients, their families, and our staff safe is a number one priority while continuing to be one of the most impactful Feeding Clinics around. Our clinic has been providing virtual evaluations since April 2020, and our use of HIPPA compliant Microsoft Teams platform has allowed everyone to participate fully. When your child is referred for an evaluation by the team, our Clinical Admissions Coordinator will guide you through our secure system of the intake process. We have revamped the process to make it easier for you and provide written suggestions to help you prepare for the evaluation day. If you are receiving a virtual consultation, we offer tips on setting up your space to allow a more successful evaluation of your child with the least amount of stress for you.

During the interdisciplinary evaluation, the full team meets with your family. Engaging with and helping your child feel comfortable, the speech and language pathologist and occupational therapist will give suggestions while listening and performing their physical assessment. We have worked hard to create a safe, calm, effortless process to continue to successfully support our Feeding Clinic evaluations, which continue to be very much in demand. Parent’s positive comments and impactful outcomes of our evaluations speak for themselves.

Medical & Nutrition

First the team reviews and establishes your child’s medical health and overall nutrition status. Many medical complications from birth can impact a child. Undiagnosed medical and gastrointestinal (GI) problems often come to light in the clinic.

Think of your child’s health as the foundation of your house. If your foundation is weak, then the floors above it will compensate for weakness. If your child struggles from constipation, diarrhea, dysmotility, gagging, GE reflux, they are most likely subconsciously learning to connect food and drink to feeling poorly. Additionally, understanding your child’s nutrition helps the team understand what might be contributing to what is not medical, allowing the team to make appropriate recommendations to ensure optimal growth and health. Analysis of current nutrition includes what is expected for your child, balance, the timing of meals/snacks, calories, protein, fluid, hydration, vitamins/minerals, route of nutrition, and growth. Understanding both medical health and nutrition status allows for changes from the foundation first and foremost.

Speech and Language Pathology & Occupational Therapy

Observing how your child interacts and engages during the evaluation can help the speech and language pathologist and occupational therapist before they move on to assess the physical portion of eating and drinking. No matter where your child is in their journey with food and feeding, our goal is to have a positive relationship during the process. While observing your child, both therapists also look at their underlying motor skills and evaluate if any postural supports might be beneficial. Mary Massery, a well-known physical therapist, has said “breathing always wins”, and she is not wrong. Breathing dominates. Where your body is in space and stability is its second priority. Swallowing and feeding behavior must continually adapt to changing respiratory and postural systems.

The speech and language pathologist works to get a better sense of your child’s oral motor skills while the occupational therapist observes potential underlying sensory processing difficulties and relationship issues with food. Anxiety around meals and feeding can increase adrenaline which suppresses our desire to eat. Assisting with overall regulation is essential for comfort at mealtimes.

Family Support

The emotion with feeding and nutrition difficulties can be overwhelming for both the parents and child. Often, a child’s survival from birth and medical health is the primary focus, as it should be. When a child becomes more stable, a parent can start to see beyond the medical fears and begin to focus on other things such as the experience of feeding. With this new focus, the emotions, fear, concerns, and hope are still there. Whether your child is struggling to be an oral eater or being fed by tube, the emotions can be immobilizing. Our social worker is a vital team member in our clinic, helping every parent know they are not alone. She provides support, empathy, and connections to any number of resources.

Wrapping Up

By the end of the evaluation, the team confers together, with immediate and long-term recommendations being made. Often, these recommendations focus on gut health, breathing, positioning, or establishing improved nutrition, before working on some of the more therapeutic needs such as oral motor skills or sensory processing/relationship interactions. Sometimes recommendations are made to work on several key things simultaneously to help your child be more clinically stable, or a single recommendation that may be central to all other concerns identified. Returning to our 90-minute clinic for a follow-up visit may be one of the recommendations made.

Final Thoughts

Wherever you are at in your child’s journey, there are many aspects to feeding disorders in the pediatric population. Therefore, identifying and addressing all of them is a priority that should not be overlooked. Easterseals DuPage & Fox Valley’s Feeding Clinic has been and continues to view your child and his care from this interdisciplinary “Pediatric Feeding Disorders” approach, involving a skilled and expert team of professionals. Nutrition issues is an area that brings an enormous amount of stress and anxiety to a child and his caregivers. Our team is uniquely qualified and experienced to assist children at all levels of feeding, instilling hope and helping them be their very best.

Every child is unique, and each intervention is tailored to fit your child and family. While you research options you have, consider the following –

• Aim to help your child feel their best. They need to feel well – this is key for success in any area.
• Assess their positioning with mealtimes and feeding to be sure they are fully supported. Positioning is key. Seated on a firm surface with feet flat on the floor or chair rail, with head and shoulders aligned over hips, equal weight bearing, is the most optimal positioning. Allow her arms to rest on her tray or table with shoulders down.
• Ensure a regular schedule. Regardless of if your child is orally fed or through a tube, a mealtime plan is essential, and helps your child learn hunger and fullness, allows their bodies to sustain through the day, can improve their overall tolerance, and should have a positive beginning and end.
• Patience – feeding therapy is a journey with bumps and curves along the road. Share your compassion and empathy. Learning to eat and mealtimes, after a rough beginning, might involve reshaping many memories. You might have to start over to build trust. Remember even the tortoise finished the race with the hare.
• Expose, expose, expose and don’t limit opportunities for exposure. Have fun and play with food. Model appropriate food reactions – don’t “yuck someone else’s yum.” Continue to find ways to present food to your child even if he is not ready to taste them. You can read books together about food, visit different grocery stores and markets, kids cooking classes, and find ways to get them involved in mealtime preparation without eating. And we encourage this, if a child is tube fed too.

To learn more on our Feeding Clinic and Nutrition Department at Easterseals DuPage & Fox Valley visit our website at: https://www.easterseals.com/dfv/our-programs/medical-rehabilitation/specialized-clinics/feeding-clinic.html.  Contact Clinical Admissions at 630.261.6287 for questions or to schedule an appointment. 

Nutrition/Feeding Clinic at Easterseals DuPage & Fox Valley –The Comprehensive Approach

By: Laura Van Zandt, MS, OTR/L & Pediatric Nutrition Therapist Cindy Baranoski MS, RDN, LDN

In January 2019 a groundbreaking article was published in the Journal of Pediatric Gastroenterology and Nutrition describing children challenged with feeding problems and their care. Pediatric Feeding Disorders (PFD) is the term the expert team of authors define as “impaired oral intake that is not age-appropriate, and is associated with medical, nutrition, feeding skill, and/or psycho-social dysfunction.” It goes on to establish the basis for creation and implementation of a medical diagnosis code that would support children identified as having problems in any of these four areas, which are impaired by or impairing a child’s ability to eat a diet that is expected for age.

It concludes with the primary need for children to be identified early, and receive interdisciplinary evaluations and interventions, as opposed to seeing one practitioner alone to try and help all areas. Interdisciplinary thinking, evaluations, and treatment have been the core practice of Easterseals DuPage & Fox Valley’s Feeding Clinic the past 20 years, since its inception in 2000.

What Brings You Here

From the moment we are born, feeding and eating is something that is supposed to come naturally to everyone. When a baby is born, we feel an overwhelming sense of love and a strong desire to watch over, protect, and nourish to grow. When it’s time for feeding, our bodies are already preparing the necessary tools to breakdown and process what is provided. Feeding involves more than just our mouths. At play are the sights (color, shape, size), feelings (warm, hot, cold, crunchy, chewy, soft, sticky), smells (sweet, stinky), sounds (loud, quiet), and most especially, the way our body works. From how our muscles work together to align our trunk in sitting, allowing our arms to reach, grasp, and explore, to coordination of suck, swallow, and breathe, and manipulating the food in our mouths, everything sets the foundation for a good relationship with mealtimes and foods. Our past and current experiences all shape our belief around feeding and nutrition. Your body must work all together to receive and process nourishment.

For some children, however, this process isn’t easy and doesn’t always come naturally. Many children struggle to coordinate their bodies to eat or drink, have GI systems that don’t process the foods well leading to constipation, diarrhea, vomiting, GE reflux, which leads to poor growth, frustrations, fear, and worry. For children with respiratory conditions, poor coordination of breathing, overall weakness, eating a meal like other children their age is nearly impossible. Yet, they still need what other children need – nourishment, socialization, variety, scheduled mealtimes, and interaction with foods. For these children, who may be fed through a tube, eating may not be the primary mode of nourishment, but all the other factors play into what promotes development, health, and good growth.

As a parent, nothing is more important than watching your child grow and thrive, and nothing is more heart wrenching than watching them struggle. When a child doesn’t eat, parents feel blame and guilt. We ask ourselves why? Did I do this? What could have I done differently? We try a host of different strategies. We Google and seek advice from family, friends, and medical providers. We fall back to what we know, which may or may not work.

Who We Are

Our Feeding Clinic at Easterseals DuPage & Fox Valley consists of a team of individuals who have a passion for helping kids with feeding, mealtimes, tolerance, health, and growth. Our team assesses the many different reasons why a child might be struggling. We are not just looking at their ‘behavior’, but dig deeper and aim to understand the core source of the behavior and what it is communicating. Eating is so much more than bringing food to the mouth, chewing, and swallowing.

Our Clinic consists of a pediatric gastroenterologist/integrative medical practitioner, registered dietitian nutritionist, speech and language pathologist, occupational therapist, and parent liaison. The team has over 230+ years of combined expertise, and have gone on for extensive training in many areas, such as NeuroDevelopmental Therapy (NDT), Sequential Oral Sensory (SOS) Approach, DIR/Floortime, Respiratory and Rib Cage Development, Homeopathy, and Chinese medicine.

As a team, we review your child’s birth and developmental history prior to the appointment, with a thorough analysis of the diet record you submit. We ask you to let us know your expectations of the evaluation when filling out the paperwork, both online and written forms. Our goal is to meet these expectations. During the actual meeting we are looking and listening for red flags that clue us into issues driving the challenges your child is having. A list of possible reasons why your child might be seen by our feeding clinic is found in Table 1.

Table 1

• 

What Happens, What We Do, and What’s Next

During the interdisciplinary evaluation, the full team meets with the family. Engaging with and helping your child feel comfortable in the room, the speech and language pathologist and occupational therapist are also listening while beginning to perform a physical assessment.

Medical & Nutrition

First the team reviews and establishes your child’s medical health and overall nutrition status. Many medical complications from birth can impact a child. Undiagnosed medical and gastrointestinal (GI) problems often come to light in clinic.

Think of your child’s health like the foundation to your house. If your foundation is weak, then the floors above it will compensate for weakness. If your child is struggling from constipation, diarrhea, motility, gagging, GE reflux, then most likely they are subconsciously learning to connect food to feeling poorly. Additionally understanding your child’s nutrition, assists the team in understanding what might be contributing to what is not medical, allowing the team to make appropriate recommendations to ensure for growth and health. Analysis of current nutrition includes what is expected for your child, balance, timing of meals/snacks, calories, protein, fluid, hydration, vitamins/minerals, route of nutrition and growth. An understanding of both medical health and nutrition status, allows for changes from the foundation first and foremost.

Speech and Language Pathology & Occupational Therapy

Observing how your child interacts and engages during the evaluation can help the speech and language pathologist as well as occupational therapist, before they move on to assess the physical portion of eating and drinking. Our goal, no matter where your child is in their journey with food and feeding, is to have a positive relationship during the process. While observing your child, both therapists are also looking at their underlying motor skills and evaluating if any postural supports might be beneficial. Mary Massery, a well-known physical therapist, has said “breathing always wins”, and she is not wrong. Breathing dominates. Where your body is in space and stability is its second priority. Swallowing and feeding behavior must continually adapt to changing respiratory and postural systems.

When your child sits down with the therapists, it is about getting a better sense of your child’s oral motor skills from the speech and language pathologist. The occupational therapist is observing potential underlying sensory processing difficulties and relationship issues with food. Anxiety around meals and feeding can increase adrenaline which suppresses our desire to eat. Assisting with overall regulation is important for comfort at mealtimes.

Social Services

The emotion with feeding and nutrition difficulties can be overwhelming for both the parents and child. Many times, a child’s survival from birth and medical health is the primary focus, as it should be. When a child becomes more stable, a parent can start to see beyond the medical fears and begin to focus on other things such as independent feeding. With this new focus, the emotions, fear, concerns, and hope are still there. Whether your child is struggling to be an oral eater or being fed by tube, the emotions can be immobilizing. Our parent liaison is a vital team member in our clinic, helping every parent know they are not alone. She provides support, empathy and connections to any resources.

By the end of the evaluation, the team confers together within the same space as your family, and immediate and long-term recommendations are made. Often, these recommendations focus on gut health, breathing, positioning, or establishing improved nutrition, before working on some of the more therapeutic needs such as oral motor skills or sensory processing/relationship interactions. Sometimes recommendations are made to work on several key things simultaneously to help your child be more clinically stable, or a single recommendation that may be central to all other concerns identified. Returning to our 90 minute clinic for a follow up visit, may be one of the recommendations made.

Final Thoughts

Wherever you are at in your child’s journey, there are many aspects to feeding disorders in the pediatric population. Therefore identifying and addressing all of them is a priority that should not be overlooked. Easterseals DuPage & Fox Valley’s Feeding Clinic has been and continues to view your child and his care from this interdisciplinary “Pediatric Feeding Disorders” approach, involving a skilled and expert team of professionals. Nutrition issues is an area that brings an enormous amount of stress and anxiety to a child and caregivers. Our team is uniquely qualified and experienced to assist children at all levels of feeding, instilling hope and helping them be their very best.

Each child is unique, and each intervention is tailored to fit your child and family. While you research options you have, consider the following –

• Aim to help your child feel their best. They need to feel well – this is key for success in any area.
• Ensure your child is receiving sound nutrition, regardless of what they are currently receiving. There are many ways around getting your child good nutrition.
• Assess their positioning with mealtimes and feeding to be sure they are fully supported. Positioning is key. Seated on a firm surface with feet flat on the floor or chair rail, with head and shoulders aligned over hips, equal weight bearing, is the most optimal positioning. Allow her arms to rest on her tray or table with shoulders down.
• Ensure a regular schedule. Regardless if your child is orally fed or through a tube, a mealtime plan is essential, and helps your child learn hunger and fullness, allows their bodies to sustain through the day, can improve their overall tolerance, and should have a positive beginning and end.
• Patience – feeding therapy is a journey with bumps and curves along the road. Share your compassion and empathy. Learning to eat and mealtimes, after a rough beginning, might involve reshaping many memories. You might have to start over to build trust. Remember even the tortoise finished the race with the hare.
• Expose, expose, expose and don’t limit opportunities for exposure. Have fun and play with food. Model appropriate food reactions – don’t “yuck someone else’s yum.” Continue to find way to present food to your child even if he/she is not ready to taste them. You can read books together about food, visit different grocery stores and markets, and find ways to get them involved in mealtime preparation without eating.

To learn more on our Nutritional Feeding Clinic visit our website at: https://www.easterseals.com/dfv/our-programs/medical-rehabilitation/specialized-clinics/feeding-clinic.html. And contact our Intake Coordinator at 630.261.6287 or mscholtes@eastersealsdfvr.org to ask questions or schedule an appointment for a feeding evaluation. 

How to Plan a Sensory Friendly and Accessible Vacation

By: Kelly Nesbitt, MOT, OTR/L, Occupational Therapist

Summer vacation is in full swing, along with all the stress and planning that parents feel as they try to make a great relaxing vacation for their whole family. For parents of children with disabilities, these feelings can be very overwhelming as they have to take into account how to travel efficiently and safely while accommodating their child’s needs.

To make your trips a little easier, I’ve compiled a list of resources about air travel, cruises, and US-based destinations that are perfect for a family with a child with disabilities.

Air Travel

TSA Cares is a national program through the Department of Homeland Security that offers one-on-one assistance navigating the airport and security for people with disabilities. Services include escort by a Passenger Support Specialist who can meet you at a specific point in a chosen airport, help with baggage through security, assist in security checks, and just be another support system navigating a chaotic environment such as an airport.

Click here to learn more about TSA Cares. You can also contact them with further questions at (855) 787-2227 or TSA-ContactCenter@tsa.dhs.gov

Open Taxis is a new wheelchair accessible taxi service in Chicago. It is open 24/7, so it is perfect for quick taxi rides to the airport without parking your own accessible vehicle at the airport for the entirety of your trip. You can call to prearrange a trip or call the day of the trip. You can schedule a ride by calling 855-928-1010.

Travelers Aid Chicago is a service in Chicago O’Hare that provides support and protection for “vulnerable at-risk travelers who need guidance, support, or advocacy” as well as crisis intervention for passengers with cognitive or developmental disabilities. Information desks are located in terminals throughout O’Hare.

Travelers Aid Chicago provides the option to schedule an Airport Practice Experience. You can take a “practice run” through O’Hare airport including going through security and the terminals to help children know what to expect on the actual travel day. They even have visuals to provide to families so that the child can have their own visual schedule of their trip to O’Hare.

I would especially recommend this for a child who may have Autism and/or an Anxiety disorder and has not experienced anything like flying before.

To inquire about Travelers Aid Chicago’s services or to set-up a practice day, contact them at (773) 894-2427 or travelersaid@heartlandalliance.org

Cruises

Autism on the Sea is an international organization that creates cruise experiences for children and adults with Autism, Down Syndrome, Tourrette Syndrome, Cerebral Palsy and more. These experiences are currently available on well-known cruise lines such as Royal Caribbean, Norwegian Cruises, Carnival Cruises, and Disney Cruises.

With this service, cruise members who are experienced and background checked can accompany you on the cruise and adapt activities in order to fit the special needs of your family. This organization will also collaborate with you in order to contact cruise lines to adapt your vacation to fit the dietary, physical, mental, and emotional needs of your child.

They even provide images of common used “cruise ship words” to be used as part of a child’s Picture Exchange Communication System (PECS) so that you can create a social story to prep your child for their trip.

Click here for additional information on Autism on the Sea and their services.

Disney Cruises offers many special services for passengers with special needs, such as accessible suites, access to medical equipment, sharps containers, and a variety of other accommodations. Disney Cruises also offer American Sign Language (ASL) interpreters for on-board entertainment and shows. Please contact Disney Cruises 60 days before your cruise to arrange accommodations.

For more information or to request accommodations call (407) 566-3602 or email SpecialServices@disneycruise.com

“Stay-cations” in Chicago

As Easterseals DuPage & Fox Valley is based in the western suburbs of Chicago, here are some tips for exploring the Windy City!

The Chicago Children’s Museum Play for All program offers free admission for the first 250 visitors with disabilities the second Saturday every month from 9 a.m. to 10 a.m. to experience exhibits via a private tour. You must pre-register in order to get this special offer. The museum also has sound reducing headphones, pictures for a visual schedule, and lap trays for wheelchairs so that children with disabilities can experience the museum.

For more information on the Play for All program, call (312) 464-8249 or email partnerships@chicagochildrensmuseum.org.

Calm Waters at the Shedd Aquarium offers extended hours on selected days especially for children with disabilities. They have specially designed shows with novel sensory experiences, a “quiet room” for sensory breaks, and an app in which there is information about noise levels in different parts of the Aquarium to help you plan your trip.

Click here or call 312-939-2438 for additional information on Calm Waters at the Shedd Aquarium!

Sensory Saturday at the Field Museum: The Field Museum opens early on select Saturdays in which children with disabilities or sensory processing issues can enjoy the field museum without loud crowds as well as access to hands on experiences to learn through tactile play and exploration.

Click here or email to learn more about Sensory Saturdays at the Field Museum!

Want more inclusive event ideas for children with disabilities in the Chicagoland area? Click here!

Walt Disney World

It really is the happiest place on earth. Disney World offers numerous services and accommodations for children with special needs at each of Disney’s parks.

Services include:

• Access to Break Areas for children who need a break from the sensory overload of Disney. You can ask any cast member to help you locate a break area.
• Sensory Guides for each park’s rides and shows that have strobe lights, scents pumped in, loud noises, have a lot of unpredictability, bumps, go fast, etc. It even lists what type of restraint is used in each ride for safety as well as how long each ride is.
  This guide can help families of children with special needs decide which attractions would be most enjoyable for their child. If you are planning to go to Disney, it may be helpful to show this list to your Occupational Therapist, as they can help you figure out which rides will best suit your child’s unique sensory system.
• Resources for Children with Autism Spectrum disorders in booklet form. This booklet lists FAQ’s about Disney for children with Autism, what Disney recommends bringing to the parks (ID bracelet, a sensory toy, earplugs/headphones, etc.)
• Rental wheelchairs
• Empathetic, warm staff : Many blog posts from parents of children with disabilities rave about how warm and engaging Disney staff and characters are with their children with special needs- meeting them where they are and not overwhelming them. Click here to read our past blog, The Magic of Disney and Your Special Needs Child
• Sign Language interpreters
• Handheld captioning/video captioning
• Braille guidebook

Morgan’s Wonderland

Morgan’s Wonderland in San Antonio, Texas is an amusement and waterpark that has 25 “ultra-accessible” attractions. Opened in 2010 by parents of a daughter with physical and cognitive disabilities, Morgan’s Wonderland is the world’s first theme park designed specifically for children with special needs. This unique theme park has a variety of amazing attractions such as the Sensory Village (which is a replica small town for children to engage in imaginative play), wheelchair swings, a large sand box, a musical playground, and more!

Morgan’s Inspiration Island is a waterpark addition to Morgan’s wonderland that provides an opportunity for guests with limited mobility to experience the fun of a waterpark. They have access to waterproof chairs and compressed air operated power wheelchairs so that all children can play in the water without having to worry about ruin their personal power wheelchairs.

There are also hotels that are partnered with the amusement and water park that offer discounts and accommodations to make the entirety of your trip accessible. Morgan’s Inspiration Island was listed as one of TIME Magazines 2018 “World’s Greatest Places.” Best of all? Admission for guests with disabilities is free.

National Parks

The National Park Service has a list of the most wheelchair accessible hiking trails so that guests with limited mobility don’t have to miss out on the beauty of our national parks. There are wheelchair accessible hiking paths at the Grand Canyon, Sequoia, and Zion National Parks.

Whether you decide to go on a cruise, roadtrip, or fly somewhere this summer, bring up your vacation plans with your child’s therapists for further accessibility tips and sensory strategies that can make your trip more enjoyable for everyone involved. Happy travels!

For more information about Easterseals DuPage & Fox Valley and our services, visit: https://www.easterseals.com/dfv/our-programs/

Gross Motor Play- Why Some Kids Won’t Participate

By Laura Znajda, PT, C/NDT
Manager of Community Based Therapy and Continuing Education

Summer is the ideal time for outdoor play, and children who love to run and climb are in their element. But children with very mild developmental challenges– or even no diagnosed problem at all— can have a great deal of difficulty learning new motor skills and keeping up with their peers on the playground.  Some children are mistakenly thought to be “clumsy” or “lazy” when they don’t try the advanced motor skills other children their age are mastering.

Physical and occupational therapists sometimes receive referrals to work with these children to strengthen their bodies so that they can gain skills more easily and keep up with their peers.  However, there is more to motor skills than just strength.  Pediatric therapists must analyze a child’s performance and consider all factors that might be impacting their success:

Flexibility:  We all need normal range of motion in our joints to perform daily tasks, but outdoor play can require extreme ranges of movement as kids stretch their limbs to make that great play of the game or to access new parts of a play gym.  A restriction in range of motion at the hip or shoulder might make climbing the slide ladder difficult.  A neck range limitation could make it challenging for a child to scan the playing field for a teammate that is open for a pass.

Motor Planning:  Paraphrased from Jean Ayres, PhD, motor planning is defined as the act of planning movements inside the brain to complete a series of actions in the proper sequence.  Before a child even starts to move, the sequence of action is planned out in the brain.  When the child lacks experience with a particular skill, like pumping herself on a swing or hitting a ball with a bat, she might hesitate in order to give her brain time to make a plan for this novel task.  Typically, the time it takes to get started will decrease as the task becomes more familiar, but for some children this motor planning component does not come naturally and needs assistance.

Balance:  Children need to be able to balance on one leg long enough to lift the other leg to a raised surface or to kick a ball.  Even more importantly, they need dynamic balance—that is, control of their bodies while they are moving and balanced on one limb in order to reach out to the side to catch a baseball or make a soccer save.  A child with balance difficulties will seek out stable objects to hold when he has to lift a foot for any length of time or will avoid these activities altogether.

Coordination:    According to CanChild, a research center at McMaster University that organizes clinical  research concerning children with developmental conditions, coordination is a sequence of muscular actions or body movements occurring in a purposeful, orderly fashion (smooth and efficient).  We often think of coordination as the ability to use both sides of the body at the same time.  We need coordination to make the same movements with both arms and legs when we do exercises like jumping jacks.  And we need coordination to do different things with each body part, but all at the same time, such as dribbling a basketball while walking or running.  A child with coordination difficulties might need these advanced motor skills to be taught in a more graded manner before she can master them.

Motivation:  It might seem obvious that a child must be interested and motivated in an activity in order to be successful with it, however this important component of motor skill performance is sometimes overlooked.  Although research is inconclusive as to exactly how many repetitions are needed, we do know that a new skill requires at least hundreds of repetitions in order to become proficient.   If a child is not motivated to play a particular sport, he will not have the determination to practice a skill over and over and will not see the success that comes from that critical repetition.

Finally, strength is important. Just as necessary as all of these motor skill components; but not the only factor to consider when a child is hesitant or unsuccessful with outdoor play.

Easter Seals DuPage & Fox Valley therapists are expanding their ability to get to the bottom of why children don’t participate in outdoor play and develop new strategies to help them through a continuing education course taught by Lezlie Adler, OTR/L, C/NDT and Jane Styer-Acevedo, PT, DPT, C/NDT on September 22-23, 2016 at our Villa Park center.  Registration is open to all therapists at:  http://www.eastersealsdfvr.org/ce

References

Can Child, Institute for Applied Health Sciences, McMaster University, Hamilton, Ontario, Canada L8S 1C7  www.canchild.ca

Ayres, A. Jean, Sensory Integration and the Child, Western Psychological Services, 2005.

A Checklist for this Year’s IEP

By: Sharon Pike, Family Services Parent Liaison

As one of the Parent Liaisons at Easter Seals DuPage & Fox Valley, I have experienced many years of not only my own children’s IEP’s, but countless families from our centers.   Here are some strategies that have helped our families feel like a true member of the team and confident that this year’s IEP is a well written plan that will meet their child’s needs.

Prepare for the meeting

1. Make a list of your child’s strengths and needs. Bring it with you to review during the meeting to insure they are covering things that are important to your child’s success in school. Think about and write down strategies that work at home and with your private therapist to share with the staff.
2. Know what the law requires. Section 614 of the Individuals with Disabilities Education Act (IDEA) sets out the process and elements of what needs to be explored to develop and revise and IEP.  States and local school districts add their own policies on top of what is required under the federal law. That being said it doesn’t mean you need to know the letter of the law.   Bottom line… the more you know and understand the easier the process is.
3. Never attend this meeting alone. It’s important that you and your spouse attend if possible.  If not then ask a grandparent or a friend. Their role is to be support for you and another set of ears!  Often at these meetings we can get stuck on something one member of the staff said and miss important information.  Make sure you inform the school that you are bringing someone with.
4. Start the meeting with a positive statement about your child even if you’ve had a difficult period there is ALWAYS something positive to say… he has the best smile, she is caring and kind, he loves other children!
5. When talking to the team, focus on your child’s needs and NOT your wants! Take the I out of IEP. Avoid, I want him to work on, I want her to be in this class, I think she needs….  Rephrase everything. He needs to have these supports in order to be successful. She needs to have sensory break before being expected to do table top activities, as it helps her focus.  The goal of special education is to meet the child’s needs, not the needs of us parents.
6. Placement is not the first decision. This is determined after the team has decided what services and supports are needed.  This is hard; as it is often the first thing you want to know!
7. Trust your gut. If a piece of the IEP doesn’t feel right, and you can’t reach an agreement with the school, make sure it is documented that you do not agree.  Remember, just because you disagree doesn’t mean it will be changed.  The whole team has to agree to change it.  But I always say, ask for the moon and hope for the stars!
   
8. Think about your child’s future! Aim HIGH.  Don’t wait until high school to start planning for what your child can do as an adult.  Every skill your child achieves in elementary school will help him or her be an independent adult.
9. Establish a clear and reasonable communication plan with the school and your child’s teacher. Stick to the plan.  You and the school are partners in your child’s development and learning.
10. Remember the IEP is a fluid document and can be amended at any time by requesting another IEP meeting.

After the IEP meeting

Pat yourself on the back for another successful IEP under your belt.

Easter Seals DuPage & Fox Valley Family Services provide information, education and support that address the concerns and stressors which may accompany having a child with special needs.  Our parent liaisons are highly trained parents of children with special needs.  They provide parents and caregivers with support from the unique perspective of someone “who has been there” in both informal one-on-one and group settings. For more resources and information click here.

Down Syndrome Enters a New Era

By: Dr. Peter Smith, Associate Professor of Pediatrics, University of Chicago

Editor’s Note: Through a partnership with the University of Chicago, developmental- behavioral pediatrician, Dr. Smith leads a new Neurodevelopmental Disability Clinic at Easter Seals DuPage & Fox Valley which provides support for children with Down Syndrome, ADHD or Autism, disabilities that may include complex medical and emotional issues.

Dr. Smith also leads Easter Seals DuPage & Fox Valley’s multi-disciplinary team including an occupational therapist, speech-language pathologist, developmental therapist, audiologist and parent liaison in the Medical Diagnostic Clinic. This clinic specializes in early diagnosis of young children.

Current Processes Are Not Working

Individuals with Down syndrome (DS) are living longer and healthier lives than ever.  There is consensus that complete information needs to be offered to all parents of children with Down syndrome (both pre- and postnatal) regarding the current experiences, health outcomes, lifespans, and quality of life for individuals with DS.  DS represents a dramatic “success story” and the lives of individuals with Down syndrome are improving in every way measurable.  Unfortunately, this good news is too often not being shared with new and expectant families.  Doctors are not prepared for this task and parents report frustration with the process.

On the Cusp of Potentially “Game Changing” Therapies

In addition to the dramatic changes that have already occurred, DS as a clinical and research arena is on the cusp of developing even newer therapies that have the potential to improve cognitive outcomes.  Multiple research teams have protocols already enrolling study subjects.  For example, the team at the Jerome Lejeune Institute in Paris has an active study underway  that employs a combination of folic acid and thyroid hormone, targeting infants and primarily measuring cognitive performance during and after therapy.  Their preliminary work has shown significant promise and preliminary results might be released later this year.  Because of their early successes, there are ongoing efforts to mount a similar study here in the United States.  The NIH has recognized this new era and has launched an international registry (see https://dsconnect.nih.gov ).  However, this “breaking news” has not been widely disseminated.  Many worry that recruitment to these studies could be diminished due to the lack of awareness by primary care providers and the general public, which would slow the progress of the studies.

A Growing Number of States Have Addressed the Issue: Including Illinois

Because of the lack of general knowledge of both the dramatic improvements in the lives of individuals with DS and the emerging clinical trials in DS, a coalition lead (of course) by family support organizations has emerged.  They have initiated a new “information rights” movement that includes clinicians, policymakers, legislators, and researchers that has worked to enact new state laws addressing the problem of misinformation.  The first to successfully pass legislation was Massachusetts: in 2012, a coalition helped to pass a state law, mandating that clinicians provide accurate information and Referral to parent support organizations.  Most recently, Illinois, passed unanimous legislation in 2015, which proves that this is truly a bipartisan issue.

To learn more about our specialty clinics including the Medical Diagnostic Clinic, visit eastersealsdfvr.org.

Communicative Temptation: Arranging Your Environment Can Get Your Child Talking!

By: Jennifer Tripoli, M.S., CCC-SLP

Communicative temptation is a speech therapy technique I use consistently during my sessions with children who are late to talk. It is an easy strategy that can be implemented across environments, not just in therapy! Communicative temptation was coined in 1989 by Wetherby and Prizant in order to use a creatively engineered environment to facilitate communication in young children.

In short, communicative temptations are what they sound like. You are going to tempt or entice your child to communicate by setting up your environment in a specific way. Sometimes we do not give late talkers a chance or an opportunity to learn/use communication. Not because we do not want them to talk, but more so because we anticipate their needs way too frequently.

Is your child ever struggling to open a container full of a preferred food and you jump in and open it for them? Do you ever anticipate the type of snack your child would like without allowing them to tell you? Are all of your child’s preferred toys in reach? Here are a few examples of ways you can tempt your child to communicate! 

• Placing a highly preferred toy or food item out of reach for the child. Key is in sight but out of reach!
• Placing highly preferred objects inside a clear plastic container that the child cannot open on their own
• Placing a lock on a cabinet door where a preferred object is located
• Eat a desired object in front of the child but don’t offer it to them
• Take the batteries out of a preferred toy and wait for the child to communicate the toy is not working properly
• Initiate a reciprocal interaction game such as “peekaboo”, then stop and wait
• Blow bubbles with the child a few times then place the bubbles out of reach or hand the child the bubbles container without the wand
• Push the child on the swing a few times and then stop
• Block the entrance of the slide they want to go down
• Change a familiar routine

Hopefully these examples, will allow you to think of other creative ways to engineer your home, daycare, toy room, etc. to allow for more communicative opportunities! The outcome is not always “talking”, it can be ANY type of communication! A gesture (e.g.

Photo by: Christine Carroll

pointing or reaching), a facial expression, a word, a phrase, etc.! The key here is WAITING. Often times, we do not give children who are learning language enough time to communicate. We jump in quickly and eliminate that opportunity to communicate independently.

Depending on your child’s language level you may need to model what is expected first (a gesture, a word, etc.). For example, if a child is attempting to open a locked cabinet you may first need to model the word “open” and then slowly fade this model. You eventually hope that the child will independently use the word after they are “tempted.”

Take a quick look at your home today. How can you make a few small changes to facilitate communication in your environment? How you can change how you interact with your child to increase communicative opportunity?

For more information about our speech services and other programs at Easter Seals DuPage & Fox Valley, click here.

A Super Sensory Summer

By: Laura Bueche MOT OTR/L

Summertime is the best time for some creative sensory play outside. Your child will have a blast learning and exploring with these sensory summer activities that won’t break the bank.

IDEAS TO INSPIRE YOUR LITTLE SPROUT

Garden Party!

Fill a tub with soil. Hide plastic bugs, coins, or dinosaurs.
Use shovels or hands to find the treasures.

Paint pots, plant seeds and watch them grow.
Overturn rocks to search for bugs and worms… or play with fake worms. Recipe here.

Photo Credit: Learning4kids.net

 

 

 

 

 

 

Is real mud a difficult texture for your little one?  Start with “ghost mud”.
Recipe here

Photo Credit: TreeHouseTV.com

Make a Splash with these Water Activities

Water Fun!

Fill a tub with water beads and ocean animals for an awesome, hands-on aquarium.

 

 

 
Freeze toy animals, foam puzzle pieces, or pretend jewelry in ice. Have your kiddos use squeeze bottles, and eye droppers of warm water to get them out. Instructions here.

Photo Credit: LittleBinsForLittlehands.com

Green gross swamp sensory table. Recipe here.

Photo Credit: NoTimeForFlashCards.com

 

 

 

 

 

 

 

Shaving Cream Car wash. Recipe here.

Photo Credit: TreeHouseTV.com

 

 

 

 

 

 

 

Let’s go to the Beach!

Feel the sand between your toes with these fun tactile activities.

Sand Slime. It’s ooey, it’s gooey…and sandy? Recipe: Here

Photo Credit: GrowingAJeweledRose.com

 

 

 

 

 

 

 

Drawing letters in the sand, a perfect pairing of visual motor and tactile. Recipe here.

Photo Credit: AnyGivenMoment.com

 

 

 

 

 

 

 

Kinetic Sand…semi sticky, and super moldable sand. Get it here.

 

 

 

 

 

Good old sand box play…because nothing beats the classic, pale and shovel.

For more summer sensory ideas, or ways to adapt these activities to your child’s needs and goals, ask your occupational therapist at Easterseals DuPage & Fox Valley. For more information about occupational therapy visit our website.

Have a great summer!

 

Can your child benefit from Constraint-Induced Movement Therapy?

By: Emily Muzzy, Occupational Therapist

What is Constraint Induced Movement Therapy (CIMT)? 
Constraint-Induced Movement is a therapeutic approach for children with one sided weakness such as hemiplegia, brachial plexus or other unilateral impairment. CIMT was originally utilized in the adult rehabilitation setting to treat post-stroke patients.  However, it was found that children with one-sided involvement could also benefit from this type of treatment. Numerous research studies have shown that by restraining the unaffected limb and intensifying  use of the affected limb, pediatric constraint induced movement therapy produces major and sustained improvement in motor function in children.

Children with one-sided involvement often experience “learned non-use” of the affected side.  Forced use of the affected side helps to regenerate neural pathways back to the brain, increasing awareness of that side.  This leads to increased spontaneity of use of the arm and improved function.  The forced use is attained by the child wearing a constraint cast on his/her uninvolved arm for a period of time each day (preferably a minimum of two hours).  The cast is made by an Occupational Therapist and is removable.  When the cast is worn, this allows for mass practice of therapeutic activities with the involved arm.

What should a child hope to gain in an intensive program utilizing CIMT?

• Typical goals of a CIMT program include improved quality of gross and fine motor skills and improved bilateral hand use for daily living tasks.
• Family education will be provided on use of the cast at home, and home program activities will be provided to promote successful use of the involved arm and hand.
• A skilled occupational therapist will help to develop specific functional goals for your child based on his/her specific needs.

Who is appropriate for constraint therapy?

• Typically, children with a diagnosis of hemiplegia, cerebral palsy or brachial plexus injury (though any child with one-sided involvement could be considered).
• This is generally used with children from 18 months to 10 years of age.  Younger children have a more plastic neurological system and greater gains may be seen with them than with older children.

After finishing a session of CIMT, one parent couldn’t believe her child’s progress after four weeks of therapy.

My child’s time in constraint camp improved his fine motor skills and he had fun while doing it!  He will always use his right side, but by putting on the cast, it strengthened his weak side and now he uses it more to support activities.

What does a session of constraint therapy look like?

• At this center, a child is seen for 4 weeks of intensive therapy, 3 times per week.  Each session lasts 2 hours per day.  The fourth week focuses on bilateral training without use of the constraint cast in order to practice functional activities with both hands.
• The therapy sessions of the CIMT program offered at this center should look like FUN!  We work hard to provide a variety of play-based activities that promote repeated use of the affected limb.
• Messy tactile play is used to promote increased awareness.  Activities like giving farm animals a bath in shaving cream, building sand castles, and finding play bugs in dirt are just some examples of the way kids can get messy with their involved hands.
• Activities to promote shoulder strengthening are incorporated through climbing over obstacle courses with ladders, slides, and tunnels.
• A variety of grasp and release activities are used.  Use of the “just right” size of objects is needed so the child can be successful.
• Activities on a vertical surface such as finger painting on the wall are beneficial for getting shoulder movement along with wrist and finger extension.
• The child will be constantly engaged in activities that will require use of his/her affected arm.

Two sessions of CIMT are offered this summer as part of our Community Based Therapy Programs.  For more information on registering, contact our Intake Coordinator at 630.261.6287. Check out the additional Community Based Therapy programs like Aquatic Therapy, Fun with Food and social skills programs  here.