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.
Whichever 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.
Create 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.
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.
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.
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?
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.
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.
The Way I Actby 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.
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.
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.
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.
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.
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:
Helping children when a family member has cancer HERE.
Learn 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
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
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.
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.
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.
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!
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.
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!
Trust your gut. If a piece of the IEP doesn’t feel right, and you can’t reach an agreement with the school, make sure it is documented that you do not agree. Remember, just because you disagree doesn’t mean it will be changed. The whole team has to agree to change it. But I always say, ask for the moon and hope for the stars!
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.
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.
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.
Heather Barilla is a mom of 3, one having special needs. I have been traveling to Walt Disney World all my life, visiting over 40 times (but who’s counting?). I have also been traveling to Easter Seals DuPage & Fox Valley for almost 10 years! I loved planning Disney Trips so much, that I started my own business, Palm Tree Travel Agency, an Affiliate of Magical Moments Vacations.
Now I’m booking and planning Disney trips (and more!) for families just like yours. I have found Walt Disney World is by far the best place to travel with special kids. The cast members are welcoming and understanding, the parks and resorts to be accessible and easy to navigate. I have found a place where we can be with our special family, and not be that different after all. It’s truly become our vacation destination.
When To Go:
A question I hear often is, “When is the best time to visit Walt Disney World?” Anytime is great! Disney has planned special events throughout the year that are all enjoyable, including the Flower and Garden Festival that starts in March and Mickey’s Not So Scary Halloween Party in the fall.
While traveling in the peak seasons can be manageable, planning trips to Disney in less crowded months may provide a more enjoyable experience. My daughter didn’t walk until she was almost 3. We chose to vacation in September, when it was mostly preschool families and adults. May and October have great activities and less crowds, and can be some of the best times to visit.
Whenever you decide to go, planning is essential in getting the most out of your Disney Vacation. Dining reservations can be made 180 days in advance of your arrival date, and if you are booked at a Disney Resort, you can make reservations for your entire stay, up to 10 days.
One of the first things to consider when planning a family trip to Disney is accessible accommodation. Disney offers many types of rooms and resorts for all family sizes and any budget.
Each Disney resort has handicapped rooms. This isn’t just for wheelchairs, there are rooms especially created for visual and hearing needs as well. For families that need a place that is super wheelchair friendly, I’d choose the Contemporary Resort or the Bay Lake Tower. The Contemporary Resort has a wheelchair friendly layout with a variety of dining options and the Bay Lake Tower’s pool has a zero depth entry, with a handicapped chair lift.
Disney Resorts have all sorts of transportation options. Moderate and Value Resorts will offer buses to all the parks. Some Deluxe Resorts offer monorail, boat and bus service. Bus drivers will lower the buses to accommodate wheelchairs if you can’t transfer.
With multiple parks at Walt Disney World, there is always something exciting going on. Once you enter the park, head for Guest Services where you can obtain the Disability Access Service Card. You don’t need a doctor’s order, all you need is your personal information, and be willing to have a photo taken. Once inside, you have access to all the different parks.
Magic Kingdom is one of the main attractions at Disney World and is where Cinderella’s castle is located. Getting to Magic Kingdom is easy by monorail and buses. So many rides at Magic Kingdom are for the whole family and many don’t require a transfer. A great escape is Tom Sawyer’s Island. There are paths and caves and areas to explore and run. Or, you can sit quietly on a rocking chair and enjoy the view.
Epcot is my kids’ favorite park. Here you can experience nature, science, and the world. Our favorite exhibit is the World Showcase, where you can interact with cast members from different countries and there is an accessible boat ride in the Mexico exhibit. We also recommend The Seas attraction which is based on the movie Finding Nemo. Each evening at Epcot there are Illuminations which includes a firework show. Accessible seating is available near the Port of Entry shops.
No matter what theme park you go to during your time at Disney, the FastPass+ makes it easy to pre-plan and be prepared. All parks use the FastPass+ system, and the My Disney Experience App is simple to use on your phone or computer. I have found that planning FastPass+ selections an hour apart has kept my family moving with minimal waits, and occupied for the morning, ready for our afternoon break.
When it comes to dining while in Disney World, there are a variety of options to choose from. Disney s chefs and staff are accommodating when it comes to special nutrition needs.
When booking a dining reservation, you are able to select certain allergies that may be present in your dining party. Once you check in at the hostess desk for your reservation, always mention again that you have a special dietary need. Your ticket that is taken to your table should have the word allergy stamped on it which alerts your server and the chef.
If you go to a restaurant with a buffet, you can always request that your children’s food is prepared and brought out separately. This will ensure it is not taken from the buffet to eliminate cross-contamination.
In order to ensure that all your dietary needs are taken care of when you arrive, contact Special Diets at Walt Disney World before you travel.
Taking a Disney Cruise gives you the opportunity to see destinations such as the Bahamas, the Caribbean, Europe, Hawaii, and Alaska. Disney’s Staterooms are large, as they have families in mind. The handicapped rooms on Disney Cruise line are huge. You have tons of space to move around, store your chair, and easily access all your room’s amenities.
One of the unique things that Disney Cruises includes is the Kid’s Clubs. They are designed for kids of every age level and you will have an opportunity to talk with the counselors to make sure all your child’s needs are met, and what extra procedures might be necessary.
Disney Cruise Line gives you a wonderful all inclusive experience with your family unlike any other. It truly is an opportunity to play with your kids, or have some alone time for just you parents.
Summer vacation is on its way! Many families and I discuss the difficulty in scheduling vacations. Not only do our busy schedules make it hard to go away and relax, but finding an accessible family-friendly destination can be overwhelming.
But family vacations are where wonderful memories are made. I found several destinations below with a little help from a Center parent.
Shared Adventures is a non-profit organization that puts on an impressive array of programs through the summer for special needs children and adults. In July, they host an annual Day on the Beach, which offers adaptive or assisted kayaking, canoe rides, scuba diving and floatation for people of all ages! Volunteers erect plywood “paths” for wheelchair access; you can also rent beach wheelchairs. The day ends with live music and free food!
Splore, is a not-for-profit that provides outdoor activities for special needs children and adults at affordable prices. They organize river trips, rock climbing, hiking through a partnership with Red Cliffs Lodge. More of a resort that a hotel, Red Cliffs Lodge offers an impressive variety of accommodations and activities. There are wheelchair-accessible rooms adjacent to the lodge. Sidewalks with ramps let to all patios and to the museum. The meals are “traditional cowboy fare”, the chef can rustle up special menu plans upon request. Utah prides itself on offering accessible recreation!
Island Dolphin Care is a not-for-profit magical place for children with special needs and their families to enjoy and discover new abilities through dolphin therapy. Parents and their children celebrate their strengths and even new inspirations through classroom activities and dolphin therapy.
The founder, Deena Hoagland‘s goal was, and still is, to help children with special needs and their families who have developmental and/or physical disabilities, critical, chronic or terminal illnesses and emotional challenges. Deena is a mom who witnessed the remarkable recovery of her disabled son Joe, at the age of three after swimming with dolphins. Her son was born with a heart defect that required many open heart surgeries. During one surgery, Joe suffered a massive stroke which paralyzed his entire left side. Through repeated therapy sessions with dolphins and hard work, he regained use of his left side. Deena believes that all children with special challenges should be given an opportunity to enjoy life‘s experiences through a full range of activities, including dolphin assisted therapy, all children love to smile, laugh and have fun!
I learned about this destination from Center parent, Lynn Matusik, whose family has now traveled twice to the island Dolphin Care. Who better to talk about their recent experience then her?
Lynn: Our son Sam LOVES the water. We thought it would be a wonderful experience for him if he could somehow swim with dolphins. Due to his severe disabilities and being 100% dependent on others we were not sure if this would be something he would ever be able to do.
During one of our weekly therapy visits at Easter Seals, our therapist told about a place that a fellow client had visited called Island Dolphin Care which is located in the Florida Keys.
We did some research on Island Dolphin Care and found it to be a family oriented facility.
Our first trip to Island Dolphin Care was in 2014. From the moment we saw his name on the board, walked out of the elevator (yes the ENTIRE facility is handicapped accessible!) and were greeting by staff, we knew this was the perfect place for our son Sam. The staff at Island Dolphin Care are incredible, welcoming, knowledgeable, patient, unbiased and understanding.
Sam participated in the IDC (Island Dolphin Care) 5-day program. There are four days of classroom time and 5 days of dolphin swim time. In the classroom, families and their children are able to work toward IEP or therapy goals if they chose, with a therapist while applying those skills by participating in aquatic related crafts and projects. It was truly a time to laugh and enjoy family time in a non stressful environment!
Swim therapy time with the dolphins was INCREDIBLE! Our son worked with his therapist, dolphin trainer and a dolphin or sometimes two! Sam was able to work, interact, and play safely with his dolphin in a structured environment. IDC also provides swim time with siblings so they are also able to interact with the dolphins along with their brother or sister. The last swim day at IDC is for one parent or caregiver and child. They swim freely in the water among all of the therapy dolphins and other families. The dolphins at island dolphin care are so patient, gentle and loving with the children that words cannott express the emotions that parents feel when they see their child interact with these beautiful creatures. Seeing our son Sam smile and hearing his giggles were truly priceless.
IDC is a place where parents can leave the stress of caring for a child with special needs behind and just enjoy their child. It is an exceptional experience that the entire family can participate in and enjoy!
IDC will also provide you with hotel accommodation information, places to eat, other attractions, etc. to help make your stay in Key Largo one that you can enjoy with your entire family.
We could tell you so much more about our trip to IDC and our son Sam but we would love for you to experience the magic first hand with your special needs child!
I have been working with families and children with disabilities for more years than I care to admit. It is a great job that I love very much. The best days are when you feel like you have made just the smallest difference in the life of a child, a sibling or a parent. I talk to parents every day about a large variety of topics dealing with their children; potty training, behavior, siblings, school, anxiety, bullying, respite, the list goes on and on. If I was to address every topic that caused a family to be stressed, this blog would turn into a very long research project. For today, I am going to talk about a topic that parent of children with a disability often ask me, “how do I talk to my child about their disability?”
You know your child the best; you understand their many moods and your strong personality will get you through a difficult but necessary conversation. So put on your gym shoes and jump right in and get started.
Here are a few suggestions to remember when you have that conversation with your child about their disability:
Think about your child’s cognitive level, start there.
Be comfortable in what you are saying, rehearse, practice, talk it thru several times before talking to your child.
Be honest! My Grandmother told me, if you always tell the truth, you’ll never have to remember the story you told and tell it again, stick with the truth, it’s safe, easy and there is nothing to remember.
Be Consistent…….once you have decided on what to say, how to say it, always use the same story, wordage to talk to your child.
Be strong! You cannot be sad, cry or talk about how bad you feel. You are simply telling your child what is their disability. The stronger you are, the stronger they are! The more positive you are about who your child is, the more positive they will see themselves.
Check your guilt at the door! You cannot use this as a time to relieve your guilt about your child’s disability, this is a time that it’s not about you, it is about your child!
Pick teachable moments; when your child brings up the topic, when a question is ask, when he’s in the back seat of the car, when something has happened at school or a party. But make it when your child is calm, not upset or crying. This is not a good time, when your child is upset, just like you; they won’t hear you or what you are saying.
Follow your child’s lead-Long before they ask you about being different, they will know they are different! Use questions to see what they know, what they have overheard, what they understand.
Try to talk when your child is alone. You will know their cognitive level, what they understand, how best to talk to them, a sibling or other family member may have a higher or lower level of understanding and they will ask too many questions that will interfere with your talk.
Be ready…the time will come that your child will ask, “why am I different,” “why can’t I run like Billy?” It’s coming, so the sooner you are ready, the better prepared you will be!
Siblings will want to know too! Use the same skills we’ve just talked about, use the same “story” you have used with your child.
I don’t think any of us enjoyed the recent burst of arctic temperatures. Having a child in a wheelchair makes it all that more difficult to keep them warm and comfortable – and comfort is the key!
Here are a few ideas and resources to help you survive what is left of this winter.
Dress in layers.
When you become dehydrated cold sets in more quickly, so encourage your kiddo to drink a bit more.
Avoid bulky coats.
This is really important if your child sits in a car seat because bulky coats keep the straps from fitting correctly. Try thinner layers, blankets, or car seat covers that don’t go between the child and their seat.
Adapt your child’s coat. Make a vertical slit up the back of the coat so you can slip it on from the front and tuck it in around them. Depending on the coat you may want to take it to the tailor so they can finish the cut side and keep it from unraveling.
Try a poncho.
Look into buying a poncho that can be thrown right over the chair. You could also enlist a friend with sewing skills or try out this no-sew version that could be enlarged to cover a wheelchair.
Keep your cell phone charged or have a car charger.
You don’t want to be caught in severe weather with a dead phone.
Keep your gas tank full!
My dad used to say, “’E’ doesn’t mean enough!”
Create a winter survival kit for your car. Include water, non-perishable food and extra blankets!
Keep their legs covered with a blanket. The fleece ones work well or you could use a Snuggie.
Stock up on hand and toe warmers.
These are great when mittens and boots are too much of a struggle. Just be careful that they don’t get too warm for your child to tolerate.
Here are a few links some parents have found helpful.
Adaptations by Adrian Adaptive clothing for wheelchair users and person with physical disabilities which make dressing difficult.
Koolway Sports Helping to maintain the quality of living for people in motion