Clarifying the New Drink Guidelines for Children

By: Cindy Baranoski MS, RDN, LDN
Manager of Nutritional Therapy

Maybe you heard about this in the news last week, or maybe not. Either way, trying to make sense of what we should be offering our children to drink is always a dilemma. From the moment a baby is born, the question becomes, breast milk or formula. Breast milk being the optimal choice, but that’s not always possible, so formula is available.

Cabinet with baby formula options.

Children less than 12 months of age should never be offered a bottle of straight up milk, but after 1 year, it is the go to drink recommended by everyone. Juice is often offered, but it is not the same as eating the fruit or vegetable. And sometimes in infancy, prune juice is given to help with stools, but that’s not a rule. Many children do not like milk, once done with breast milk or formula, and parents begin to offer anything to help ensure their child is hydrated.

Bring in the new options available for children to drink and it can be confusing to know what is best to offer. For example, plant based milks are all the rage now for many reasons, including allergies, family preferences, cultural reasons, and last resorts for a picky eater. They are flavored, unflavored, sweetened, and unsweetened. And the selection continues to grow, including rice, almond, coconut, soy, oat, hemp, split pea, cashew, and blends to name only a few. Though these may seem like a great alternative to cows milk, each one of them can be found fortified, unfortified, with added protein, or original version. Most plant milks are going to be lacking in protein, fat, and potentially key vitamins and minerals found in cow’s milk.  Diet modifications can be made to help ensure what is lacking in a plant milk can be found in other sources in the diet. But if cow’s milk cannot is not the choice for whatever reason, plant milks with diet modification can work.

Child laying on couch drinking bottle.
Photo by tung256.

Juices have changed as well, with many companies offering non sugar sweetened fruit and/or vegetable juices. Some companies offering cold pressed and fruit/vegetable smoothies with additives, such as greens, protein and vitamins. Use of sweeteners such as grape juice or artificial sweeteners replace sugar and high fructose corn syrup. Juice is not the best option for anyone to be consuming regularly, or in quantity, when the food brings so much more nutrition to the diet that has yet to be identified or quantified.

And then there is water, but not just tap water, but bottled water, flavored water, sweetened waters, artificially sweetened waters, vitamin boost waters, and sparkling waters. As a general guideline, plain old regular water with nothing added or changed, is the best choice.

To help, the Academy of Nutrition and Dietetics, The American Academy of Pediatric Dentistry, the American Academy of Pediatrics and the American Heart association have made some updated recommendations.

Description of drink guidelines for children under 5.

Not Recommended

  • Artificially sweetened beverages
  • “Low-calorie” or “Zero- calorie” drinks
  • Toddler and flavored milks
  • Sugar sweetened beverages
  • Caffeinated beverages
  • Soda

Juice Recommendations

  • Less than 1 year of age: Do not offer juice
  • 1-3 years of age:                4 ounces a day or less a day
  • 4-5 years of age:                4-6 ounces a day or less a day

Milk recommendations

  • 1-2 years of age:                16-24 ounces of whole milk a day
  • 2-3 years of age:                16 ounces of skim or low fat milk a day
  • 4-5 years of age:                20 ounces of skim or low fat milk a day

Water Recommendations

  • 6-12 months of age:         4-8 ounces a day
  • 1-3 years of age:                8-32 ounces a day
  • 4-5 years of age:                12-40 ounces a day

Finally, whenever something is happening out of the ordinary with any child, and there is a struggle or question of fluids, seek the advice of a Registered Dietitian Nutritionist to help guide what would be best. Looking at the child as a whole, their full diet, development, family choices, help with recommendations being made for fluids. This will ensure children receive optimal fluids, contributing to best growth and development.

For more information visit: eastersealsdfvr.org/nutrition or contact our Intake Coordinator at 630.261.6216.

Supporting Children with Sensory Disorders while Traveling

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

When a child with sensory processing disorder goes on vacation, it may be difficult for their bodies to go into that “relax and restore” mode. Children with sensory processing disorders are constantly “battling” with their environment in many of the following ways:

  • Every sound is too loud and hurts their ears
  • Smells are abrasive and can cause them to gag or vomit
  • New tactile sensations send them into a panic
  • Changes in their normal routine can make them extremely anxious
  • New sights and movement in their environment can startle them

The following are some tips that may help support a child with sensory issues during a summer vacation so they may have a relaxing experience.

Visual Schedules

An example of a visual schedule.

If your child benefits from knowing what to expect in the day, it may be useful to set up a visual schedule revolving around your vacation. This can include the steps you will need to complete going through the airport. (Travelers Aid Chicago has resources to make a visual schedule specific to O’Hare airport).

Some children may also just benefit from going over what to expect on their vacation. You can help them prepare by saying, “We are going to the airport and this is what to expect…”  or “We will be on vacation for 4 days. During those days we can do these activities…”

Long Car Rides

3 kids in the car, reading a map, eating and wearing headphones.

Children that are constantly on the move may find it extremely difficult to sit still during long car rides to their vacation destination. Often times kids who are always “on the go” benefit from heavy work activities that involve pushing, pulling, and carrying. These activities give input to the joints and muscles which can be very regulating. Here are a few heavy work ideas specifically for car rides: 

Squigs are toys that can keep children busy on long car rides.
  • Squigs on the windows: I suggest this for children who need something to keep their hands busy with push and pull component to get heavy work. These small plastic suction cups stick perfectly to car windows and to each other. Children can build and make a picture with them on the windows 
  • Pop TubesThese toys also provide an opportunity for children to push and pull when you are cooped up in the car.
  • Animal walk breaks at rest stops: Just as you need to get out and stretch your legs during a long ride, your child with sensory difficulties will need this break too! At rest stops, take advantage of the opportunity to move by doing silly activities that promote heavy work: walking like a bear, jumping like a kangaroo, playing on a playground if the rest stop has one. 

What to Pack

Girl sitting in a suitcase

Here’s a list of sensory supports that may help your child while you are on vacation. Make sure to consult your occupational therapist about which items may be most beneficial for your child.

Girl wearing headphones.
  • Noise cancelling headphones: Some children benefit from wearing headphones if they are easily overwhelmed by the loud noises of crowds. Noise canceling headphones can range anywhere from $20 to upwards of $200. These might be handy for kids that would get overwhelmed by crowds, traveling on an airplane, or seeing a firework show on the 4th of July. 
  • Comfort item: Bringing a stuffed animal or blanket that your child finds soothing may be beneficial for when they become anxious or overwhelmed while on vacation. You could even add soothing aromatherapy scents such as vanilla, lavender, or chamomile to these comfort items for an extra sensory “treat.” (Always make sure your child tolerates and likes the scent prior to adding it to their comfort item. If the smell is too bothersome to them, they may not want to be around it anymore!) 
  • Weighted blanket or stuffed animal:  Some children with sensory processing difficulties find compression comforting. A weighted blanket or stuffed animal may provide some calming input and tell their body to relax. Weighted items are now available at most stores or online. Click here to read more about the benefits of weighted blankets.
  • Fidgets:  These are small items that kids can fiddle with in their hands to keep them busy and focused when they may feel overwhelmed. Fidgets can be bracelets, putty, pop tubes, etc. 
  • Identification bracelets: Sometimes when a child is overwhelmed, they may run away from the group. Because of this, it may be a good idea to make a bracelet with your phone number on it so that you can be reached in case of an emergency. Options include beads with numbers on them, temporary tattoos that you can specially order with your phone number on it. There are even cute “Disney-themed” buttons and tattoos with emergency contact information that you can specially order. Here are some examples of number bracelets and  temporary tattoos or you can design your own ID bracelet

The Benefit of Breaks

Children are working very hard to stay regulated and calm when they are being bombarded with all this new sensory input that comes with a vacation. They may just need a little break. It is absolutely okay to take some time in your hotel room or find a quiet spot for your child to regroup. Sometimes just a quiet room with a preferred toy or sensory tool is just the break that your child needs in order to enjoy the rest of their vacation.  

You can help your child create a “calm down corner” in your hotel room or wherever you are staying. This spot does not need to be complicated – it can be a little corner of the room with pillows, blankets, and some of the items previously listed in “What to Pack.”

This can be their special area in which they can retreat to take a break if they become overwhelmed and enjoy a moment away from whatever input is overwhelming them.

This is not a punitive space to send them to when they are behaving badly or being uncooperative. This is a calm space that you can offer them a break in or they can elect to go to when needed. Just as you may go sit by the pool after a busy day on vacation to relax and recharge, your child with sensory processing difficulties may need their own unique space to do the same.

Unexpected Meltdowns

Girl who is upset hugs her mom.

Children with sensory processing difficulties can have meltdowns when they get too overwhelmed by the sensory input in their surroundings and/or if they become too fatigued. As well prepared as you may be, you can’t anticipate or prepare for every meltdown.

If your child has a meltdown while on vacation, first try to figure out what elicited the meltdown and remove them from the input that is too overwhelming for them. It may be helpful to go through all 5 senses: Was there a smell, sound, touch, sight, taste that they experienced that caused them to react? Were they in a loud, busy crowd for too long? Did the plan change too suddenly and without warning?  

Once you have removed them from whatever caused the meltdown (as best as you can), give them input to help calm them down. For some children, they like compression from big hugs or weighted blankets. Other children need to put on their noise cancelling headphones and have some quiet time. 

Sometimes children with sensory processing difficulties can meltdown because they are so tired from holding themselves together for so long in a new environment. As a clinician, I have an understanding of the experience, and know it must be exhausting to be bothered by what most people consider “normal” input, such as the sounds of people talking, the feel of your clothes on your body, or the smell of the pool on vacation.

It’s important for parents to understand that their child with a sensory processing disorder is expending a lot of energy processing input from their surroundings. They may need more patience and understanding when they are having a tough time with changes outside their normal routine. It may be helpful for parents to help children label when they are becoming agitated, by saying “It looks like you are not comfortable right now, can we take a break?”  

Summer vacation should be an opportunity for everyone in your family to rest and recharge. If you need help brainstorming what activities/preparations would be best for your child this summer, consult your occupational therapist for more insight into your child’s unique sensory needs.  

Read our previous blog on How to Plan a Sensory Friendly and Accessible Vacation

For more information about Easterseals DuPage & Fox Valley and our Occupational Therapy services, visit: https://www.easterseals.com/dfv/our-programs/medical-rehabilitation/occupational-therapy.html .

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.

Two children wait to embark on the airplane

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

A boy looks over the side of a cruise ship with binoculars

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.

Children attending Play for All at the Chicago Children's Museum

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:

Disney has many guides to help guests with disabilities enjoy their experience.
  • 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.

Morgan's Wonderland and Island Inspiration

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/

Taping: That Extra Set of Hands You Need

taping 3

Editor’s Note: You can learn more about taping techniques through our Pediatric Therapeutic Taping continuing education course taught by Patricia Martin, PT and Audrey Yasukawa, MOT, OTR/L on June 20-21, 2019 at our Villa Park center.

By: Laura Hellier, PT, C/NDT

Pediatric therapists have been known to use every one of their own limbs to assist children to align their bodies and move successfully. When the therapists run out of hands and feet, they turn to additional supports for help—adjuncts like therapeutic tape, elastic wraps, and compression garments.

Therapeutic Taping

Elastic tape (Kinesiotape and KT Tape are two well-known brands) has long been used in the sports and fitness industry to relieve pain and support muscles and joints. Now therapeutic taping is used with children as well, often to assist a weak muscle to work better or to re-align a body part so that the muscles can work more effectively.

Tape that is stretched over the Tibialis Anterior muscle helps this 2 year old with Down Syndrome lift her toes in order to step up stairs.
Tape that is stretched over the Tibialis Anterior muscle helps this 2 year old with Down Syndrome lift her toes in order to step up stairs.

Active exercise using the tape-assisted muscles is important to “re-train” the muscles to function in their new alignment. This helps the child practice using the muscles properly in functional tasks. Parents can maximize progress by building in practice throughout their daily routine, as one application of tape can be left in place for up to 5 days at a time.

Stepping on targets such as soft stepping stones is a fun activity to practice lifting the foot while the tape assists.
Stepping on targets such as soft stepping stones is a fun activity to practice lifting the foot while the tape assists.

Elastic Wraps

Fabric straps that stretch in two directions can be used to help align upper or lower limbs. They are particularly useful to bring the arm or leg toward a neutral position when it is rotated too far inward or outward. A physician and therapist must carefully assess that there is not a structural (bony) reason for the position of the limb prior to using wraps in attempt to change alignment.

Compression Garments
Compression garments, such as those made by Spio and Benik, are flexible articles of clothing that provide deep pressure sensory input as well as assist the wearer to returning the body to a mid-line position.

taping 5

Prone without supportive garments—this one-year-old with low muscle tone has difficulty accessing abdominal/gluteal musculature to anchor her pelvis on the floor, resulting in weight pitched forward on her chest and arms and inability to use arms for play.

taping 6

Prone with compression garments—improved ability to use abdominal/gluteal musculature to stabilize pelvis to floor allows weight to shift off of chest and arms. This allows the child to begin to practice lifting one arm to a toy and eventually crawl forward.

Therapeutic tape, wraps and compression garments are helpful adjuncts in therapy and to assist children with alignment that allows them to activate weak musculature throughout their daily routines.

To learn the latest on taping techniques and additional therapeutic practices, join us at our upcoming Continuing Education courses.

Best Children’s Books on Disability

By: Sarah Peabody, Physical Therapist

According to the Center of Disease Control, developmental disabilities affect 1 in 7 kids in the U.S. and 1 out of 9 children under the age of 18 receive special education services. Explaining a disability to children can be difficult for many reasons. The children’s books below each have a unique way of illustrating what really matters. These books are a great addition to any home, school, library, or waiting room.

With inspiring messages and an emphasis on strengths, they help all children understand kids with different needs. These powerful messages share stories and celebrate victories of all kids in spite of a range of different disabilities. If you are struggling to find a way to start a conversation with a child or a child’s sibling, friend, classmates, or family, these are a great way to start conversations about disability and inclusion!

Books about kids with physical disabilities:

  • Hip, Hop, Hooray for Brooklynn Bunny: This book is great for encouraging children to persist in achieving long-term goals and to cooperate with wearing an orthopedic brace. This book focuses on the whole child working toward a positive outcome over time. Whether it’s jumping rope, or wearing a brace, the message of this book is to keep trying.
  • Danny and the Merry-Go-Round: One day while watching kids play and ride a carousel, Danny becomes frustrated by his inability to participate. It’s not easy to join in because he is living with cerebral palsy. Luckily, a little girl befriends him and they embark on an adventure. It’s a touching story, made more powerful for its way of showing children with disabilities that they are valuable people.
  • Meet ClaraBelle Blue (The ClaraBelle Series): Written by a mother of a child with cerebral palsy, this book celebrates differences by illustrating how much we all share in common. ClaraBelle’s favorite line is “I’m ClaraBelle Blue and I’m just like YOU!”
  • My Belly Has Two Buttons: This book was written for children who use feeding tubes, and the main character is excited to show and teach everyone he knows about it.
  • Ben’s Adventures: This series was written by a parent with a son with cerebral palsy. Ben shows that despite his disability, he can dream, he can play, and he can interact and have meaningful experiences.

Books about kids with autism:

  • Looking After Louis: The story of Louis, a boy with autism in a general education class, is told from the perspective of one particular classmate. This is a great book to explain to young children how autism can affect behavior and promotes understanding of others.
  • Andy and His Yellow Frisbee: When a girl notices that Andy spends most of his recess spinning a frisbee by himself, she befriends him despite his trouble connecting with others. It’s a great story, told through the shoes of Andy’s older sister, providing a great perspective on Autism that even the youngest kids can understand.
  • Ian’s Walk: Ian is nonverbal.  His older sister Tara takes him on a walk and is embarrassed that he does things out of the ordinary including staring at the ceiling fan in the drugstore and putting his nose against the bricks by the post office. But when he wanders off on his own, she must try to see the world through his eyes in order to find him.

Books with a focus on inclusion and coping with a disability:

  • We’re All Wonders: This story shows how one child copes with his own differences, and other’s reactions to them. The reader will find comfort in Auggie’s imaginative tactics and his positivity about being able to change the way others see him.
  • Susan Laughs: This book celebrates the similarities and differences between children with and without disabilities, and encourages acceptance and tolerance of differences. It’s not until the end of the book that Willis reveals Susan uses a wheelchair. It’s a simple, yet powerful, way to show how people aren’t defined by the barriers they face.
  • My Sister, Alecia May: This book is written from the perspective of a younger sister of a child with Down Syndrome. Although Alecia May can be hard to be around, she is a lot like other 6-year-olds. Rachel appreciates the unique qualities of her sister and learns to stand up for her when others tease her. A great book about inclusion!

Books about kids with a learning disability, anxieties/worries, and more:

  • Hudson Hates School: This book is a useful introduction to dyslexia for children. It reassures children that dyslexia should not be a barrier to success if it is properly recognized and managed.
  • Eagle Eyes: This book focuses on a child who has ADD/ADHD and learning difficulties.  It acknowledges the difficulties that Ben experiences at home and school because he has trouble controlling how he moves and thinks. The hallmarks of ADHD are discussed as well as ways to cope with them.
  • When My Worries Get Too Big: This is a great book that makes it easy for kids who struggle with anxieties to not feel so alone. The included stories are fun, engaging, and filled with encouragement to help kids come up with their own calming methods when anxiety issues arise.
  • I’m Not Weird, I Have Sensory Processing Disorder: If you have a child that struggles with sensory processing disorder (SPD), this book will help your child relate to the main character as she describes what it is like for her each and every day. This is a great resource to explain to others what it feels like living with sensory issues that affect them constantly throughout the day.
  • Whole Body Listening Larry at School: This is an excellent book to teach the concept of whole body listening and following directions. The story begins with two new students attending school who have trouble listening and following along with the class schedule, social cues, etc. Larry helps them by teaching them how to listen with “their whole body”.

Books geared towards siblings:

  • Sara’s Secret: This book explains the story of a grade school-aged child that has a brother with a severe disability. The main character struggles with not wanting her classmates at her new school to find out about her brother in fear of being teased. It is a beautiful message of acceptance and inclusion as the main character delves into her emotions and realizes the bond between she and her brother despite his difficulties, which is not any secret to hide.
  • We’ll Paint the Octopus Red: A great resource for those who are awaiting the arrival of a new baby brother/sister who has a disability (this book specifically geared towards Down Syndrome). It also has a great message that with help and patience, their sibling will be able to overcome any obstacle.
  • Leah’s Voice: Parents and educators can use this book as a great resource for teaching siblings, friends, and classmates about autism, inclusion, and acceptance. Although the focus is on a sibling with autism, its important message on the acceptance of differences and treating everyone with kindness is for all children.
  • Views from Our Shoes: This book includes numerous stories of siblings that share their experiences as the brother or sister of someone with a disability with a wide range of various difficulties. Their personal stories introduce young siblings to others like them and allow them to compare experiences.

For more information on the services Easterseals provides for children with disabilities, visit:http://www.easterseals.com/dfv/our-programs/

The Benefits of Weighted Blankets

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

Weighted blankets have become very popular in the past year, not only for children with sensory processing difficulties and Autism, but also with “neurotypical” adults. It’s hard to go online or browse the aisles of Walmart without seeing ads for weighted blankets touting an improved night’s sleep or improved mood. So what exactly is the hype around weighted blankets and why do they help children with Autism or other sensory processing issues?

What are weighted blankets?

Weighted blankets are usually big plush blankets filled with some sort of pellet to make it heavier (depending on what type of blanket you buy or make, they are usually filled with plastic, sand, steel shot beads, plastic poly pellets, micro-beads, etc.)

They can range in weight from a couple pounds to about 20 pounds and can be made out of just about any type of fabric imaginable!  Weighted blankets can be worn on the lap to help a fidgety child calm down in order to sit at the table for a meal with family, help ease anxiety during a car ride, or help lull a child to sleep.

Weighted blankets for children should not exceed 10% of their body weight for safety (weighted blankets should be a comfortable compression, not so heavy that they cannot be easily taken off by a child). These blankets are used for calming input to help a child “slow their body down,” not to be so heavy as to inhibit movement.

What’s the theory behind weighted blankets?

Weighted blankets can have a calming effect when worn over the body for the same reason that your child would seek a big hug when they are upset. This weight provides deep tactile input to the skin, joints, and muscles that tells your child’s brain to relax.

According to the American Sleep Association, deep tactile input provided from weighted blankets tells our central nervous system to switch from our “fight or flight” sympathetic state of being anxious and panicky to our “rest and recharge” parasympathetic state where our heart rates slow and we are able to calm ourselves down. Deep tactile input causes the body to release serotonin in the brain, a feel-good neurotransmitter that creates a sense of calm and well-being.

For children with Autism Spectrum Disorders or sensory processing difficulties, it is really hard to get their bodies to move from this “fight or flight” to “rest and recharge” state on their own. Occupational Therapists are trained in identifying strategies to help the central nervous system to calm through the use of movement, tactile, olfactory, visual, auditory, and proprioceptive input. Weighted blankets can be an effective modality to help accomplish this.

Store Bought vs. Homemade

There are a plethora of store-bought options for weighted blankets that range from relatively cheap to extremely pricey. Whether you purchase or make your weighted blanket should be based upon how much time you have available as well how much you want to spend. Both store bought or homemade options can have the same calming effect.

Regardless, like any other blanket, it should be washed occasionally. Make sure that the materials you purchase are conducive to being either machine or hand washed without destroying the blanket. For example, your blanket is filled with sand or rice, it would be a good idea to purchase a cover to go over the blanket so that it may be removed and washed.

Where to Shop

There are so many options for weighted blankets online and in store. Here’s a list of a couple choices that I have suggested to families in the past (ask your Occupational Therapist which companies they prefer and have had good experiences with).

  • Amazon: Amazon has a large selection of blankets that range from $50-$100. Be sure to check individual seller’s policies on returns and weight specifications.
  • Fun and Function: This therapy product website has weighted comforters, blankets, sleeping bags, and lap pads with fun designs and textures that are kid-friendly.
  • Support groups: Parent support groups on Facebook often either personally know someone who makes great blankets or knows what companies make the best ones for a fair price. (For clients at Easterseals DuPage & Fox Valley, ask your Occupational Therapist about weighted blankets created by Easterseals families that are low to no cost!)

How to Make Homemade Weighted Blankets

Because I am always a fan of saving a few bucks and getting a little crafty, I usually tell my client’s families to try making a weighted blanket on their own. If a family is up for it, I recommend buying a duvet cover and going to a craft store such as Joann Fabrics or Michaels to purchase filler material. The duvet can then be sown shut and you can place another cover on top of the filled duvet so that the outer layer can be easily washed.

Making your own also lends itself to making a blanket that would exactly fit your child’s interests. You can purchase durable, washable fabrics with your child’s favorite characters on it. There are also online instructions for how to make your own blanket, like this one from Quality Plastic Pellets. Make sure to remember the rule for the weight of the blanket… make sure it weighs at most 10% of the child’s body weight.

Aromatherapy and Weighted Blankets

For an extra calming sensory experience, you can even add aromatherapy scents to your weighted blanket. Of course, make sure that the child enjoys the scent and is not bothered by this olfactory input prior to adding it to the blanket. Scents such as lavender, vanilla, chamomile, and bergamot can have a calming effect and can help with inducing sleep. Aromatherapy oils can be purchased at your local drug store. Click here to read more about adding aromatherapy to weighted blankets.

Whether you want to buy or make your own, weighted materials can be trialed in therapy sessions to see if the child has a positive, calming response with its use. Your Occupational Therapist will collaborate with you to consider what textures your child can tolerate in fabrics, if the sound of the material inside the blanket could be irritating, and when it would be most beneficial for the child to use the blanket.

Choosing a weighted blanket can be both an art and a science; if you are interested in trialing a weighted blanket for your child, feel free to ask your child’s Occupational Therapist about it!

For more information about Occupational Therapy services at Easter Seals, visit: http://www.easterseals.com/dfv/our-programs/medical-rehabilitation/occupational-therapy.html

6 Strategies to Prepare for Your Child’s IEP Team Meeting

By: Kimberly Lechner, Ph.D.

About the Author: Kimberly Lechner is a School Psychologist, Licensed Clinical Professional Counselor, and former special education administrator. She currently runs a private practice in Wheaton called Kids First Collaborative where she provides psychoeducational evaluations, clinical counseling, and special education advocacy. Her daughter receives services at Easterseals. 

Boy getting off of school bus

It’s May, and IEP season is in full swing! As parents, we work so hard to support our children’s development, and we are so deeply invested in our children’s success at home and at school. We are thoughtful about how we collaborate with members of our kids’ school teams. We support our children’s teachers, and we hope that they recognize and value our voices as parents. Still, when it comes to the IEP process, we sometimes feel like outsiders among a team of educators who are making important decisions for our child.

As a school psychologist and former special education administrator, I’ve facilitated countless IEP meetings. However, as a parent of a child who receives special services, I am amazed by how overwhelming the IEP process can feel. As you prepare for your child’s upcoming IEP meeting, consider the following strategies to support effective and meaningful collaboration with your school team.

6 Strategies to Prepare for Your Child’s IEP Team Meeting

  • Proactive communication matters

Schedule a conference call with your child’s teacher or case manager to touch on any anticipated concerns in advance.

  • Request that teachers consult with outside providers in advance

This can include private tutors, therapists, physicians, or other individuals who may have valuable input. Be sure that release of information documents are signed for all parties. If necessary, ask private team members to provide a written statement regarding their impressions of your child and their recommendations for the team.

  • Review your child’s current IEP

Pay close attention to the following areas:

  1. accommodations and modifications
  2. special education and related services
  3. goals

Is your child’s IEP currently meeting his or her needs? Has your child made expected progress toward goals? Are there areas of functioning that are not meaningfully addressed in the IEP?

  • Request a draft of the proposed new IEP goals.

School districts often prepare draft goals in advance, and parents should have an opportunity to consider draft goals prior to the IEP meeting. Note that determinations around eligibility, services, and placement are ONLY made in the context of the IEP team meeting and are not determined or drafted in advance.

Review your child’s draft goals in advance. Are the goals appropriately ambitious for your child? Do you understand how your child’s progress toward goals will be measured throughout the school year? Consider sharing any questions or concerns regarding draft goals in advance with your child’s team.

  • Request copies of any evaluations of your child conducted by school team members.

You may also request any local data that will be used to support decision making (i.e. progress monitoring data and results of any district wide assessments).

  • Write your own parent input statement.

Every IEP document includes a space for “parent educational concerns.” IEP facilitators ask parents to articulate their concerns at each IEP meeting. However, parents often respond with something general such as, “We want our child to be successful in school.” Although this simple statement is important, it might not fully express your goals for your child nor might it clearly articulate your concerns. Your perspectives are better understood when you have an opportunity to thoughtfully consider your family’s concerns and provide input in written form.

My husband and I recently attended our daughter’s reevaluation and annual review meeting, and I’m still processing all that transpired. I’ve yet to make it through an IEP meeting without a tear or two (or even an ugly cry), but I’m so very thankful to share that my tears have primarily come from a place of gratitude.

I see each IEP meeting as an opportunity to celebrate the progress my daughter has made and to reflect on the wonderful therapists and teachers who have helped our daughter grow and thrive. Our Easterseals therapists have played an incredible role in our journey, and so have the amazing teachers, therapists, and administrators from our school district. When I reflect on our recent IEP meeting, what resonates most is the love and support we felt from each and every member of our daughter’s team. I am also struck by the significant commitment of time, energy, and resources that went into preparing for this meeting. I can honestly say that our family experienced what TRUE collaboration looks like, both before and during this IEP meeting, and I am so very grateful for the professionals who made that possible.

As an advocate, I have the privilege of walking alongside families who are seeking that same level of collaboration, commitment, and support from their school teams. I typically find that both educators and families are interested in developing genuinely collaborative relationships. Nevertheless, disagreements do occur, and teams sometimes need to thoughtfully examine their assumptions and reengage in a truly child-centered problem-solving process.  I believe firmly in the power of parent engagement, and I know that children do best when families play a central role in their education.

Our Parent Liaisons at Easterseals DuPage & Fox Valley have firsthand experience with IEP meetings and are available to answer questions or provide resources on the topic. For more information, visit: https://www.easterseals.com/dfv/explore-resources/for-caregivers/iep-help.html

What is Tongue-Tie and How is it Treated?

By: Valerie Heneghan, M.A. CCC-SLP/L

The topic of tethered oral tissues or tongue/lip tie is evolving and controversial among professionals in the medical field.  The controversy often stems from first diagnosis. Is it truly a tethered oral tissue? And second the remediation. Is surgery necessary or is the child able to compensate without intervention? 

As a parent, I know it is a difficult decision as you want the best for your children.  You want to support your child’s development without unnecessary medical procedures.  My suggestion is to work with a professional who has experience in this area who can discuss these considerations and how they impact your child specifically. 

When discussing considerations regarding tethered oral tissues (e.g., tongue, lip, and cheek) it is important to include these 4 components:  

  1. Symptoms of mother/infant
  2. Mobility
  3. Function
  4. Location

The conversation on whether to move forward with medical intervention should include symptomology, structures, and function.  One child upon visual inspection may look to have a tethered oral tissue without any symptoms. While another child may have a tethered oral tissue that is not as visually apparent, however may have several symptoms impacting activities of daily living.

Below are interdisciplinary symptoms that could potentially be attributed to tethered oral tissues that you may want to consider:

  • Breastfeeding issues: Nipple pain, difficulty latching, inefficient nursing (e.g., feeding until becomes fatigued rather than full, nursing around the clock, etc.)
  • Lack of weight gain or growth
  • Difficulty moving to solid foods or won’t tolerate a variety of foods
  • Difficulty with cup, straw or bottle drinking
  • Delayed production of single words or imprecise articulation
  • Dentition (e.g., gap in front teeth) or malocclusion
  • Open mouth posture or congestion
  • Asymmetrical motor skills (e.g., preference for one side at young age) or Torticollis
  • Issues with sensory regulation, fine motor skills or vision
  • Coordination or balance issues
  • Gut Health issues or GERD
  • Sleep apnea

What are the next steps? 

It is important to find a medical professional who has experience in this area. A Pediatrician, ENT, or Dentist can diagnose a tethered oral tissue.  Often a Speech-Language Pathologist or Lactation Consultant may be referred, as these professionals work closely with oral motor skills therapeutically.

If a frenectomy (i.e., surgical cut to release the frenulum) is warranted, seek a medical professional (e.g., ENT or Dentist) who has experience in the following:

  • Has knowledge and expertise in releasing tethered oral tissues  
  • Recommends post-surgical program (i.e., stretches, therapeutic feedings, etc.)
  • Procedural experience using both scissor and laser for best possible outcome.

For more information on Easterseals DuPage & Fox Valley Speech-Language services, including those that treat children with Tongue Tie conditions, visit: http://www.easterseals.com/dfv/our-programs/medical-rehabilitation/speech-language-therapy.html

Commonly Asked Questions About Down Syndrome

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

Down Syndrome, or Trisomy 21, is one of the more common genetic disorders in which children are born with 3 (instead of the normal 2) copies of chromosome 21.

There are common physical characteristics of children with Down Syndrome, such as upwardly slanted eyes, short fingers, small facial features, and a flattened nasal bridge. Children with Down Syndrome also may have varying degrees of intellectual disability, may develop heart conditions, and are at risk for visual impairments. Many children with Down’s Syndrome also have low tone (meaning that their muscles have less of a “taut” quality to them, making their joints appear “loose” or “floppy”).

Because of these physical and intellectual challenges that children with Down Syndrome live with, many children with Down Syndrome receive Occupational, Physical, and Speech therapies in order to address these concerns and make them as independent as Parker2possible.

That was the very medical analysis of Down Syndrome… but if you are a parent of a child who was recently diagnosed with Down Syndrome, you are not thinking of statistics, factoids, and medical jargon. You would be thinking, “What does this mean for my child?”

While I am not a parent of a child with Down Syndrome, nor do I pretend to be the holder of all the knowledge on Down Syndrome, I’ll try to answer common questions from my perspective as a Pediatric Occupational Therapist and a person who is proud to have friends with the condition.  

What services to I need to look into for my child?

Young children with a new diagnosis of Down Syndrome (under 3 years old) can qualify through Early Intervention Services through the state of Illinois. Early Intervention brings trained specialists into the home of eligible children with disabilities or delays and provides high-quality therapeutic intervention.

To start services, a parent schedules an evaluation through a Child and Family Connections provider closest to their home (featured in the link above). After the evaluator determines a child qualifies with a 30 percent delay in development in any area, or are at risk of developmental delays, he/she will set up An Individualized Family Service Plan (IFSP). The IFSP lists child and family strengths, needs, resources, priorities, and concerns. It also identifies services to be provided to your child.  

Many Easterseals therapists are trained and credentialed by the State of Illinois Early Intervention System. Parents can request an Easterseals therapist when qualifying for services and speaking with the EI Case Manager. 

Team members could include Developmental therapists, Occupational therapists, Physical therapists, Speech therapists, Audiologists, Social Workers, Nursing, Assistive Technology, and nutritionists, just to name a few.  These therapists can help your child with global strength, communicating effectively, sensory processing issues, fine and gross motor skills, and getting around in the community.

Once a child “ages out” of Early Intervention at 3 years old, many children with Down Syndrome continue to get services as needed through schools and outpatient based clinics, such as your local Easterseals.

Why would my child with Down Syndrome need Occupational, Physical, and/or Speech therapy?

I have worked with children with Down Syndrome as an Occupational Therapist for a number of reasons and most often to address the following:

  • sensory processing difficulties Jake mom machine
  • trouble with transitions
  • behavior management
  • feeding difficulties
  • handwriting
  • dressing
  • manipulating fasteners
  • bathing
  • social skills
  • global strength
  • participating in family and school routines
  • access to community activities
  • navigating their physical environment safely

I will refer children with Down Syndrome to Physical Therapy and Speech Therapy as well. Physical Therapists can help children with Down Syndrome ambulate and have sufficient strength to be able to crawl, squat down, skip, climb stairs, propel their walkers/wheelchairs or walk.

Speech Therapists can help a child with Down Syndrome improve articulation (intelligibility of spoken language), oral motor skills for feeding and speaking, pragmatic language skills, improving receptive language skills, and accessing augmentative forms of communication (picture boards or high-tech communication devices).

Will my child be able to go to school?

Yes! Whether it’s through an Individualized Education Plan (IEP) or a 504 plan, there are federal and state laws set in place that require schools to make education accessible to children with disabilities.  These plans set specific goals and help place children in the best environment at school to support their specific needs. Just because your child has Down Syndrome does not mean that they cannot have the same educational opportunities as their peers for K-12.

Can my child go to college?

College can be in the cards for your child. Click here for a list of some Illinois universities/colleges that have programs for adults with disabilities. 

Do children with Down Syndrome have friends?

Certainly! Children with Down Syndrome are sweet, funny, kind, and loyal friends. There are organizations that help give kids with Down Syndrome more exposure to similar-aged peers in the context of fun outings and school events.

I am proud supporter of Best Buddies International, whose mission is “to end social, physical, and economic isolation of the 200 million people with intellectual and developmental disabilities.” Best Buddies programs at elementary, middle and high schools pair students with intellectual or developmental disabilities with a similar aged peer and facilitate friendships between them!

My involvement in Best Buddies was one of the most positive experiences of my life and helped inspire me to become an Occupational Therapist. I am still friends with my high school buddies and we regularly keep in contact, even a decade later! Want to learn more? Visit https://www.bestbuddies.org

Do people with Down Syndrome date and get married?

Absolutely! I know people with Down Syndrome who are in long-term, committed relationships. There are even dating apps to help people with disabilities find that special someone.  Like all relationships, it’s important for people to set boundaries, expectations, and have mutual love and respect for one another, so why can’t people with Down Syndrome experience dating and marriage?

Can someone with Down Syndrome have a job and live alone?

Yes! There are job-training classes available through local community colleges and different companies that can lead to employment for people with Down Syndrome.

As for a living situation, people with Down Syndrome have a variety of options depending on their independence levels.

Options include:

  • living at home with family
  • living at a partially-independent living facilities
  • living in “shared living” arrangements in which adults with Down Syndrome can share an apartment with a roommate
  • living independently 

Additional housing resources are available through the National Down Syndrome Society.

Will my child have anyone like them to look up to in the media?

Of late, there are more actors with Down Syndrome in the media being celebrated! Some examples include:

    • Lauren Potter from “Glee” – Lauren Potter has amazing videos/PSAs and works a lot

      Lauren Potter glee
      Lauren Potter in her role as Becky on Glee.

      on advocating for people with Down Syndrome – I highly recommend following her on social media

    • Sarah Gordy from “Call the Midwife” and “Upstairs, Downstairs”
  • Born This Way – Reality show on A&E that follows the lives of young adults with Down Syndrome through their experiences in their careers, friendships, family, dating, and marriage.

What organizations are there out there to support my child?

There are a wealth of organizations in the Chicago area that are designed to help children with Down Syndrome, both medically and socially. Here are just a few!

How can I show my support for children with Down Syndrome?

In addition to getting involved with the organizations mentioned above, the simplest way to show your support is to wear mismatched socks on World Down Syndrome Day which is March 21, 2019! 

The goal of World Down Syndrome day is to raise public awareness and create a single global voice for advocating for the rights, inclusion and well being of people with Down syndrome

world down syndrome day

While it’s impossible to depict the complexities and life experiences of people with Down Syndrome as someone without the condition, I hope I gave a brief peek into what a child with Down Syndrome’s future could look like. The road ahead may seem daunting once a child receives the initial diagnosis, but parents should take comfort in knowing that there are many resources available to help during every step. The parents I work with have told me of both the amazing successes and the difficult days their child has experienced. 

When it comes down to it, a child with Down Syndrome is still a child who wants the same things in life as anyone else: to be loved and accepted. So let’s show our love and acceptance of people with Down Syndrome by wearing mismatched socks on March 21!

I think that actress Lauren Potter puts it best, “Someone once told me that different isn’t bad – different is just different!”

For more information on the services Easterseals provides for children with Down Syndrome, visit: http://www.easterseals.com/dfv/our-programs/downsyndrome.html

March is Cerebral Palsy Awareness Month

By: Jack McGraw, Easterseals DuPage & Fox Valley client

jack1While many wear green on St. Patrick’s Day, you can wear green all month long to honor Cerebral Palsy Awareness Month. Why green? The color was chosen to reflect youthfulness and new growth, as well as hope for advancements in treatment and acceptance.

Cerebral Palsy is a disability that is caused by damage to the brain before or at birth. It mostly affects movement and fine motor skills but can have a large range of severity for children. Some children with cerebral palsy can walk or talk, while some may use a wheelchair or assistive technology device to speak like me.

Honestly, living life with a disability can be very challenging but I don’t let it stop me from having an awesome life! I have a lot of friends, a great family and have been a successful student. I graduated from St. Charles North High School in 2017 and am now a proud honors student at Elgin Community College. My communication device uses eye gaze technology and helps me type up essays and lecture notes.

I also love sports. I really, really love sports. While my disability has kept me from participating on teams with my friends, it hasn’t stopped me from being a huge fan. I had the privilege  of being a team manager for football, basketball and volleyball while in school and those were very special experiences. I really felt like a part of the team and got close to some of my teammates.

jack2I have been going to Easterseals since I was a little boy. I have done Physical, Occupational and Speech therapies. Easter Seals has helped me to be as independent as I can be and my therapists have always listened to me and asked me what I want to be working towards in therapy. They have been a great support to me and an asset in my life.

People with disabilities aren’t really very different from people that don’t have disabilities. We enjoy a lot of the same things and want to be treated fairly like everyone else! Having a disability is hard, but I haven’t let it stop me yet! Life is good!

Editor’s Note: Easterseals DuPage & Fox Valley offers many resources for children with spastic and non-spastic cerebral palsy and their families including physical therapy, occupation therapy, speech-language therapy, assistive technology, inclusive day care and parent-to-parent support.

Treatments and therapies can benefit a child with cerebral palsy by helping him or her gain the strength and mobility needed to take first steps, speak first words and maximize their independence.

For more information on cerebral palsy and therapy service at Easterseals DuPage & Fox Valley, visit http://www.easterseals.com/dfv/our-programs/cerebralpalsy.html.