Category Archives: family services

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/

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

Understanding the Grieving Process for Parents of Special Needs Children

By: Sharon Pike & Cara Long, Parent Liaisons

It’s graduation season! We love seeing and hearing about the accomplishments of each graduate and their hard work! But for some parents, seeing their child’s peers reach graduation or other milestones, can trigger many emotions, especially if their child has a developmental delay or disability. For some children, these milestones will come much later or maybe not at all.  We hope to give you a greater understanding of the process families experience in coming to terms with a child with a developmental delay or disability. We speak from experience as we each have a beautiful young woman with a disability.

Sharon & Alison 2.jpgFirst, after the birth of a child with special needs, the diagnosis or incident that changes their child, parents will grieve the loss of the “perfect baby”, they’ve dreamed about. They grieve the dream, not the child.

Dr. Ken Moses is a psychologist who has devoted himself to helping people deal with crisis, trauma and loss. He describes it beautifully and accurately, “Parents generate core level dreams for their children even before the child is born.  Disability shatters those dreams. Grieving is the process where by parents separate from those shattered dreams and begin creating new dreams.”

He also says “few would argue that facing the devastating and continuing loss of having a child with a disability is among the most painful experiences that a person can confront. To separate from a lost dream, one must experience and share denial, anxiety, fear, guilt, depression and anger in whatever order or manner the feelings surface.” You can read more in The Impact of Childhood Disability: The Parent’s Struggle.

20110926 EasterSealsFashions (65 of 98)
Photo from Rich Howe

We recognize that for many parents this is their first experience with a disability and it unfortunately takes time to gain the insight needed. We want to help you work through the states of grief Dr. Moses mentions, so you aren’t stuck in a certain stage and can see the great potential in your child. This potential might be different than you imagined, but is still a wonderful journey.

We agree with Dr. Moses that the process takes time and honestly never really ends.  We learn to reshape our dreams with the help of the professionals we surround ourselves with. But grieving is the only way we can move on.  The parents who resist this process, become worse not better in response to the loss of the dream.

Below are Dr. Moses states of grief that you may be familiar with but need to recognize and move through them on this journey:

shockDenial/Shock

  • This stage gives parents the chance to “feel it” and start to find support and ways to navigate this new world they’ve been dropped into.
  • It buys time needed to blunt the initial impact, to discover inner strengths, find resources.

Anxiety

  • With the loss of a dream, parents are forced to change
  • Anxiety mobilizes the energy needed to make these changes

Fear

  • This stage speak to itself! The questions come “Will he walk, Will she talk,” “Will he go to college or marry?”

Depression

  • This stage is one that parents can feel repeatedly over the years and it’s depths can be simple sadness to deep, long lasting depression that needs medical intervention.

anger

Pain/Guilt

  • This stage also gives parents the chance to “feel it” to “question it” and ask themselves “What did I do to cause it?” “Why did my body fail?”

Anger

  • This stage parent ask,”Why me, why not you?”
  • A parent’s sense of justice is challenged
  • Their anger is often directed at someone or something (child, medical professional, or spouse)

Acknowledgement and Hope

  • Parents have come to grips with the fact, this is life and with modifications they can still live the dreams they had for their child and family.
  • They learn that there is always Hope.

This journey is reflected in this poem from a parent of a child with autism.

What You Should Know About My Child
by Brian Rubin 

Remember that he is, first of all, my child.
Let me see him smiling in his sleep.
And let me think how handsome he is.
Help me not lose sight of my son
In the sight of his limitations.

I know that you care for my child,
And that you work hard with him.
I need your expertise to help him become All that he is capable of being.
You need my help in understanding who he really is.
And in the following through at home
With things that are important.

Remember though, that you send him home at night,
And have weekends off and paid vacations.
Let me have the luxury of having a vacation…
Sometimes physically, sometimes emotionally.
For  a day… a week… a month..
Without your judging me.
I will be there for him when you are long gone.

I love my child with an intensity that
You can only imagine.
If on a given day, I am tired or cross with him,
Listen to me.
Lighten my burden.
Do not judge me.

Celebrate with me.
Rejoice in who he is and who he will become.
But forgive me if, from time to time,
I shed a tear…
For who he might have been.

renee

This journey is hard and can be isolating, especially for parents of babies with challenges.  But you are not alone. We are here to support families through this process. We can be your sounding board and help find whatever resources you need. To learn more about our family services, click here.

Through my Parenting Eyes

By: Theresa Forthofer, CEO & President of Easter Seals DuPage & Fox Valley

While I am the President and CEO of Easter Seals DuPage & Fox Valley, I also happen to be the mother of three children.  Two of my children have Myotonic Muscular Dystrophy and Autism. My oldest, Ryan, was diagnosed when he was 7 years old.  He is now 24 years old. My youngest was diagnosed with the Congenital form of Muscular Dystrophy within days of his birth and he is now 18.

forthofer family

Having two boys with Muscular Dystrophy, meant lots of doctor visits and hours of therapy every week.  Throughout the years we had several different therapists and we liked them all.  They were all very nice and the boys were making progress.  Therefore, we assumed everything was great and the boys were doing the best they could.  Looking back, I sincerely wish I knew then, what I know now.  While they were progressing, they were not reaching their full potential.

I may be biased, but what I have learned since becoming President and CEO isn’t as significant as what I have learned about raising two boys with disabilities.  I share my story to help at least one other family find their child’s true potential.

For nearly 7 years, my son had (unsuccessfully) worked on putting his shoes and socks on independently.  His Early Intervention therapist worked on it, his private therapists from a nearby clinic worked on it, and his school therapists worked on it.  Over and over again we were told, he doesn’t have the strength.

17b_ProcoposJustinDip.jpg
Photo by Alexi Procopos

However, when I came to Easter Seals, I asked about Occupational Therapy for Justin.  I wanted him to put his shoes and socks on independently.  In just two sessions, his therapist asked me what our next goal was because he was putting his shoes and socks on independently.  I didn’t believe her and made her show me.  He did it and is still doing it!  His therapist explained it was a motor planning issue not a strength issue for Justin.  For years, I dreaded leaving the house because putting his shoes and socks on became something to battle over. Now those days are long behind us.  No more excuses for being late!

Occupational therapy worked so well, I signed Justin up for the feeding clinic.  At 12 years old, he weighed 40 pounds and we had tried everything.  We saw an endocrinologist, feeding therapists, nutritionists, etc.  The best solution was growth hormones, but Myotonic Dystrophy has cardiac complications, so this was not advised.

After attending the feeding clinic and starting a few relatively small changes, he gained 10 pounds in three months – 25% of his body weight!  He will likely always be small for his age, but we wish it hadn’t taken us so long to figure out these needs and find the experts at Easter Seals.  They imagined a future beyond what we had been told to expect by other professionals and without any limitations.

leadership meetingI hear these same stories like mine, nearly every week.  Children who have been seen for years and aren’t reaching their fullest potential.  When they find their way to Easter Seals DuPage & Fox Valley they often can’t believe what they have missed out on.  The progress their children are making so quickly surprises their families, their doctors and sometimes even us.

If you are looking for a therapy center or therapist for your child, here are the top 10 questions to ask:

  1. Is the center CARF Accredited and have a Medical Advisory Board?
  2. Is the center directly affiliated with any major research hospital systems?
  3. Who are your primary referral sources?
  4. What are the published results of your satisfaction survey and where can I find them?
  5. Is the therapist NDT (Neuro-Developmental Treatment) trained?
  6. What diagnoses has the therapist personally treated?
  7. What is the average level of experience of the therapists at the center?
  8. How many children do you treat annually?
  9. What training do you receive on a regular basis?
  10. How do you support parents and siblings?

As parents, we all want the absolute best for our kids. I found it here at Easter Seals and you can too!

Easter Seals DuPage & Fox Valley is a CARF accredited facility with a medical advisory board and affiliations with University of Chicago, University of Illinois at Chicago, Northwestern University and RIC (Shirley Ryan Ability Lab). With 87 therapists and professional staff with an average tenure of 19 years, the majority of therapists are NDT trained and are required to receive on-going training. The therapists are specialized in many specific areas including feeding, motor, sensory needs and more.

Easter Seals serves more than 1,000 families a week with locations in Naperville, Villa Park and Elgin.  Through an annual client survey, 99% of families report satisfaction with the services they receive and 98% of families report progress. The parent liaisons and social workers on staff provide support and family activities for all members of the family. Learn more at eastersealsdfvr.org. 

Back to School…. Yay or Nay?

By: Sharon Pike, Parent Liaison

As the first day of school is fast approaching I am hearing two camps of parents.  The ones that are counting the days till the bus comes with the routine of school that brings a sense of normalcy and structure to their homes.  The other camp, is the one that are holding onto summer with all their might, dreading the routine and busyness that the school year promises.

Marita Blanken_4 cropped MG_9142BWhichever camp you’re in, know you’re not alone! Either way it’s time to shift gears and focus your energy on getting everyone ready for earlier bedtimes and wake ups, school lunches and getting out the door in time to catch the bus.

By now you’ve learned who your new teachers are so the kids know it’s coming. No one wants to send their child off to school frazzled so I recommend getting as organized as possible.
How to prepare your child

  • Move bedtime back and set alarms for earlier wake ups.
  • Start having the kids pick out their outfits the night before so everything is together in one spot for quick dressing.  If a schedule in your child’s room helps, make one that outlines the morning routine.
  • Have them help make lunch the night before so it’s all ready to go in the morning.

Preparations with the school before the first day

  • Review your child’s IEP especially the accommodations page so you can go to school and ask that things are in place before the first day of school. You don’t want to wait for the sensory diet items or special chairs to be available weeks later.
  • If your child has medical issues and things changed over the summer, ask to schedule with the school nurse to review any changes.
  • cammy can.pngCreate a one page at a glance about your child in a nut shell.  So, everyone from the principal, school secretary, janitor and lunch ladies understands your child’s unique needs and abilities.

Then hang on, as the first couple of weeks might be difficult. While there may be a few bumps to work out, before you know it will be October  and a nice routine will be established.

For help with your child’s IEP or other back to school assistance, contact our parent liaisons and visit our web resources at: http://www.easterseals.com/dfv/explore-resources/for-caregivers/iep-help.html 

Another great resource for back to school tips is from the American Academy of Pediatrics.

 

 

 

10 Things You May Not Know About Our Parent Resource Library

By: Family Services Department

  1. Our Mary Alice D’Arcy Parent Resource Library at our Villa Park center was created for you! A key part of our mission is to “…provide support for families who love and care for (infants, children, and adults with disabilities) …” We have listened and responded to the many questions we receive by finding highly rated books on those topics.
  2. We have listed many of the books housed in our library onto goodreads to make it easier to browse our shelves from any location. Click HERE to see our goodreads profile and view our book list.
    parent resource lib
  3. We add new books all the time and they may not yet appear on this list. Please ask!
  4. Our children’s section is separated from the parent books and off to the right side of the library. These books can be great for siblings to help understand a diagnosis or for when talking with your child about challenges they may be facing.
  5. Our Naperville and Elgin centers also have small library collections with many of the same books.
  6. We labeled our “bookshelves” on goodreads to match our library shelf subjects. If you find a book you want to look at and it is listed as being on the “behavior” shelf on goodreads, you will find it on that shelf in our library.  If you have any trouble finding a book you are looking for please ask a staff member for help.
  7. Checking out books is EASY! Here’s how:
    Books may be signed out for 3 weeks
    • Please complete the card located in a pocket inside the front cover of the book and return the card to the front desk
    • Please return all books to the front desk

Enjoy!

8. One of the most popular books (please ask for help if it is checked out when you look for it!) is:

parent resource lib 2

  1. We love feedback, suggestions and requests. There is a place for parent comments located inside the back cover of most of the books.  Please share your opinions so we can let other parents know what has been most helpful. If there is a book or a topic we don’t seem to have please come on in and ask.  We have staff bursting with ideas and suggestions and file cabinets full of referral sources we would love to share! If you cannot find a staff member please ask the front desk for assistance.
  2. Our expert social service staff encourage you to come on in, hang out, use the computer, look over the books, read a book to your child, ask a question or simply stop in and chat with a staff member – we are here for our families and we are great listeners and problem solvers!

For more information on our family services including additional resources visit: http://www.easterseals.com/dfv/explore-resources/for-caregivers/family-services.html.

10 great books to help you talk to children about disabilities

By: Karyn Voels Malesevic, Au.D., CCC-A

Many of us have struggled to find the right words when talking to our kids.  Knowing how much to say, or how little, or what type of words to use can be a challenge.

Enter the power of a good book!

Sitting down and reading a book about a character that may have the same disability as your child can be a great way to start the conversation.  Sharing stories is also a great way to help siblings and classmates understand and appreciate differences, or to help your child(ren) prepare for a big transition or difficult news.  A good book helps finding the right words much easier.

We’ve complied a list of ten great children’s books to help confront tough issues.

To view our complete list of book recommendations for parents, caregivers and children, follow us on Goodreads.

  1. Rolling Along with Goldilocks and the Three Bears by Cindy Meyers- In this story baby bear uses a wheelchair, goes to physical therapy, and ultimately makes friends with Goldilocks. The story unfolds many of the familiar scenes of the classic tale ending on a hopeful note.349042
  2. Wonder by R.J. Palacio- August (Auggie) Pullman was born with a facial deformity preventing him from going to a mainstream school that is until now. He’s about to start 5th grade and being the new kid can be hard. Auggie’s just an ordinary kid, with an extraordinary face. But can he convince his new classmates that he’s just like them, despite appearances?
    11387515
  3. We’ll Paint the Octopus Red by Stephanie Stuve- Bodeen- Six-year-old Emma is gladly waiting for  the birth of her new baby brother or sister. She imagines all of the things they can do together. They’ll go to Grandpa’s farm to feed the calves, ride in the back of the mini-van making faces at the cars that go by, fly on airplanes, and someday, they’ll even go to Africa on a safari.264878
  4. Kids Talk about Bullying by Carrie Finn-  People make fun of me for wearing glasses. What should I do? Super Sam the problem solver will give you some strong advice on bullies.1172876
  5. The Way I Act by Steve Metzger- This vividly illustrated story is a fun way to show children how their actions may affect others. This book explores a variety of attitudes and traits, like compassion and bravery. Children will instantly recognize and identify scenarios such as meeting new kids, romping on the playground, and finishing a puzzle. Each scene illustrates proper ways to act and encourages readers to do the right thing.10253343
  6. Rolling Along: The Story of Taylor and His Wheelchair by Jamee Heelan- Taylor and Tyler are twin brothers and best friends. But the twins are different in one significant way: Taylor has cerebral palsy, while Tyler does not. Taylor explains to readers why wheelchairs allow many people to be more independent. This triumphant story offers a valuable look at both adjusting to a wheelchair and facing physical limitations with boundless energy and determination.1403392
  7. No, David! by David Shannon- When author David Shannon was five years old, he wrote a semi-autobiographical story of a little kid who broke all his mother’s rules. He chewed with his mouth open (and full of food), he jumped on the furniture, and he broke his mother’s vase! As a result, all David ever heard his mother say was “No, David!” Here is his story.1062516
  8. Nobody Knew What to Do: A Story about Bullying by Becky Ray McCain- This story tells how one child found the courage to tell a teacher about Ray, who was being picked on and bullied by other kids in school.805575
  9. Sara’s Secret by Suzanne Wanous- This author skillfully manages to go beyond the message to the heart of Sara’s guilt and embarrassment. Sara and Justin are more than stiff cardboard characters, and their humanity poignantly validates the feelings of children who have disabled siblings. Haas’ fluid, striking watercolors convey Sara’s emotions with an intensity that is well matched to the text.3937661
  10. Let’s Talk about It: Extraordinary Friends: Let’s Talk About It by Fred Rogers- How do you get to know someone in a wheelchair? Sometimes it’s hard to know where to begin. In his characteristically wise and gentle way, Rogers challenges the stereotypes that often plague children with special needs and celebrates six children who are extraordinary friends.

1348380

There are many great books out there, too many to list here!
Click this link to take you to our virtual bookshelves.  Here you will find the entire list of our recommendations, all available to check out in person at our Parent Resource Library.  Your local library should have many of these as well.

Another extensive list of books can be found HERE.

If you find your family confronted with a serious  issue or unexpected change that impacts your child, it’s important to prepare yourself before having a difficult conversation.  Here are some resources to help guide your first steps in talking about illness, death, divorce or autism:

  1. Helping children when a family member has cancer HERE.
  2. Helping your child deal with death HERE.
  3. An age by age guide for talking with kids about divorce HERE.
  4. Telling your child that they have autism HERE.

It often helps to connect with a professional who can answer questions and recommend an approach.

 

To connect with a social worker or parent liaison at Easter Seals DuPage & Fox Valley visit: http://www.easterseals.com/dfv/explore-resources/for-caregivers/family-services.html


 

SpellLinksLearn more about how Easter Seals DuPage & Fox Valley is supporting literacy for children with special needs, check out our latest course offering in partnership with Dr. Jan Wasowicz and SPELL-Links.
Building the Brain for Literacy: Prerequisites for Successful Spelling & Reading A Multi-Linguistic, Prescriptive Assessment and Speech to Print Instruction

Tips for Practitioners and Specialists: Considering the Full Reality of Patients and Clients’ Lives

By: Sharon Pike, Parent Liaison & Jordyn Holliday, Communications Intern

Many parents will tell you that trips to the doctors office, specialists, etc. can sometimes make for stressful moments for children and families. When a child has complex needs, the level of stress can be increased. Once you consider factors and obstacles such as medical emergencies and other personal issues that a family may be dealing with, those appointments become tougher to make.

25_SheddJAMES.jpgIt is important for doctors and other specialists to be mindful and reevaluate the judgments they make on parents and caregivers. Before drawing conclusions on why a child may be missing appointments, it is imperative to consider the entirety of that child’s life.

Here are a few tips on how specialists can be more understanding of families:

  • Be Mindful: One important thing to remember is that in the vast majority of cases, no one is more concerned with the well-being of a child than that child’s parents and family. If there are appointments being missed or a lack of communication, there is likely a good reason behind it. Forming a solid grasp of this is a huge step in better understanding a client or patient.
  • Check for Signs: Often times, it is possible to gain a sense that something external may be happening in a child or family’s life. When you are visited by a patient or client, try to look for signals. Are there any noticeable signs of stress? Are there any patterns in appointment cancellations? Asking yourself these questions can lead to meaningful answers.
  • Appropriately Ask the Family: If you are unable to gain insight using the previous tip, think of a kind way to inquire information from the parent/caregiver. This can be done by simply asking how things have been going. By kindly asking how the child and family has been, or even asking about recent medical history, you are beginning dialogue that could help you understand the root of inconsistencies.

Acknowledging the lives of children and families outside of just the scope that you see them in as a specialist is a significant step in building better relationships with them. It’s important not to make assumptions, as they can often lead to uneasiness.

For more information on managing your child’s care and your own, connect with our parent liaisons and family services department at eastersealsdfvr.org/SocialServices.

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. 01_Mason EsquivelTrust 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.

My Child is Stuttering; Will He or She Grow out of it?

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

You may have noticed that your child appears to be getting stuck on words or repeating words and sounds recently, what do you do?  Your friends and/or family may have told you not to worry about it as they will likely grow out of the problem, is this true?  How can you tell if my child is stuttering?  When do I seek help for this problem?

In this post, you will be provided with a brief summary addressing questions related to childhood stuttering.

Prevalence

According to the American Speech-Language-Hearing Association (ASHA), in preschool age the prevalence of stuttering can be as great as eleven percent. The prevalence of stuttering is also greater in boys than girls up to 4:1 as the stuttering progresses.

Characteristics of Stuttering

Disfluency is anything that interrupts the forward flow of speech. Stuttering occurs when this disruption occurs within a word.

There are two forms of stuttering:

1) Sound/Syllable Repetition: repeating a single sound or syllable (e.g., g-g-g-going, bi-bi-cycle, etc.) and 2) Sound Prolongations; pausing or stretching out single sound (e.g, g__oing, ____bicycle).

Associated and/or secondary characteristics may also be present for a child who stutters.  These are described as movements as a reaction to the stuttering including but not limited to: distracting sounds, facial grimaces, head movements, movement of the extremities, etc.

Risk Factors

Stuttering is a disorder of childhood with typically emerges between the ages of two and a half and five years old. While genetics and neurophysiology appear to be related to the underlying causes of stuttering, environmental factors, temperament, and speaking demands may influence a child’s reactions to stuttering.

Recovery

80% of children will outgrow stuttering within four years.  During the first year however, 12% recover spontaneously.  Indicators that your child may continue to stutter includes but not limited to: no changes in frequency of stuttering, changes in stuttering type, duckpersistence of associated behaviors six months post onset, family history of stuttering, increased communication demands, etc.

When therapy is recommended

If you notice that your child is stuttering, mark when you first noticed the problem begin.  Initially, do not draw attention to the stuttering, decrease the communication demands and model slow and smooth speech when speaking to or near your child.

If you are concerned about your child’s stuttering, have them evaluated by a Speech-Language Pathologist who specializes in assessing and treating children who stutter.