Tag Archives: Easter Seals

Knowledge is Key

By: Amy Liss, Relationship Coordinator

Every month we seem to have a day that brings awareness to a specific disability. For example Friday, March 25, is National Cerebral Palsy Awareness Day encouraging people with cerebral palsy to share the many things they enjoy and can do using the hashtag #CerebralPalsyCan.

11182119_10104980955721620_7285392519176070049_nWhile I think these days are great, I personally believe that every day should be Awareness Day. My dream had always been to be an elementary school teacher. Although I may not be teaching in a classroom, my goal is to “teach” every day. Whether I’m giving a speech in the community, giving a tour of our building to someone that hasn’t heard of Easter Seals and its mission, driving up and down our hallways meeting new families, or engaging in conversation with long-time friends, I feel that I am always trying to educate.

For those of you reading this that may not know me, I’m 33 years old and have Spastic Quadriplegic Cerebral Palsy. There are many different types of Cerebral Palsy. I am lucky to be able to speak and have a mind that works pretty well most of the time. 🙂

Next time you come in contact with a person with a disability, here are 5 things I believe you should keep in mind:

  1. Just because a person is nonverbal doesn’t mean they don’t understand what you are saying. Treat them normally. Talk to them at a level they understand. Do not talk down to them.
  2. Most people with a severe disability need a companion to help them. It is important that you remember to talk to the person and not to their companion. For example, people tend to ask my companion questions instead of directing them towards me. They say “does she like college basketball?” If the question was formed, “do you like college basketball?”I could talk for hours about March Madness.
  3. I’mMarchMadness.jpg an identical twin and I have a younger sister who is 28. My family did a wonderful job of including me in all family activities. Throughout my life, I’m grateful that I’ve always been accepted and included. Sometimes your special needs child can occupy a lot of your time and that is understandable but it is important to remember that siblings need attention too. Try to spend one-on-one time with each sibling. In my family, we call these “you & me kid days.”
  4. Patience is crucial. Sometimes others don’t take the time to get to know people with disabilities because it may take them longer to do things. If you take the time to get to know someone with a disability and include them in your group, you may quickly notice that we’re more alike than different.
  5. Be as open as possible. Tell others about you or your child’s disability. That’s how we educate.

amy group.JPGYou may be surprised at how much YOU can teach!

Amy works as the Relationship Coordinator at Easter Seals DuPage & Fox Valley. Learn more here: http://eastersealsdfvr.org/about.

Holiday Travel Anxiety

Anxious about the upcoming holiday travel? Here are two great resources and perspectives to help you prepare.

The first is a blog post from the Easter Seals Inc. blog with “12 holiday travel tips for families with special needs” by Sara Croft.

Sara Croft compiled “tips from behavior analyst, therapists and respite providers to make holiday traveling a more enjoyable experience for everyone involved.

Before the airport: 

  1. Make sure you pack everything your child might want/need in a carry-on bag, including a change of clothes. Create a sensory pack with their favorite calming toy, stuffed animal, object or blanket. Sensory items are a great relief for kids who may become anxious due to first time traveling and fear of the unknown.
  2. Discuss what the experience of the ticket counter and the security check might be like to the child before you arrive at the airport. You could simply talk to the child about it, discuss it with them, or use social stories to aid in the explanation.01_Mason Esquivel
  3. Make sure you call TSA Cares at 1-855-787-2227 at least 72 hours before boarding the plane to ask any questions you may have. A TSA Passenger Support Specialist can be requested to provide on-the-spot assistance. The TSA has a helpline for individuals with special needs.
  4. Try to book flights when your child is generally the most able to handle a change in routine. For many children this may be in the morning when they are not tired and overwhelmed from a long day.
  5. Ask your doctor for a letter describing your child’s condition especially if your child has an “invisible condition” such as autism. It might be helpful to show documentation of the disability to airport security or flight attendants. Visit the TSA’s website and print the disability notification card that you can present at the TSA screening.

At the airport and on the plane:

6. To make your walk to the gate easier, approach the check-in or information desk to ask for a ride or shuttle to your terminal.

7. Inform TSA of your child’s disability and how they might react to security screening or waiting in long lines. Most airports have a family line or will allow the parent and child to be screened together.

8. It might be a good idea to bring noise cancelling headphones for the airport and the plane to help drown out some of the loud noise in the airport and the airplane. Sunglasses can block out the harsh bright light in airports and create a calmer environment.

9. Bring your child’s favorite music or no mess activity to keep them entertained on the plane. Colorful string beads, bags of beads, and items that light up are great additions for the traveling sensory pack.

On the road trip:

10. If your child escapes from their seat easily consider getting covers for the seat belt buckles and remember to check the child locks on the door.

11. Make sure your child is prepared for the road trip by creating a social story about the trip to read for them. This story may need to be read several times prior to the actual trip.

12. Have a visual aid to represent how many hours you have traveled and how many are left. A timer can help your child countdown the hours or minutes until the next stop or activity.

These are excellent tips from Sara to make holiday traveling easier for the whole family.

Another great perspective is from a local parent, David Perry, who writes in today’s “On Parenting” section of the Washington Post ,”When traveling with children, all needs are special.” David shares his family’s experience with traveling to Italy over Thanksgiving. It is a terrific story and a good reminder that travel with all children takes some improvisation.

 

Sensory Play for Winter Fun

By Maureen Karwowski, OTSensory Play

We all know that winter time can be brutal for active kids who are stuck inside.  I live in Chicago, and the winters can feel endless.  I work with children who have sensory needs, and sensory input can be hard to find when you are stuck inside.

Here are some ideas that are safe, fun and require only what you have in your home.

Heavy work and movement play ideas:

  1. Have a tug of war contest with your child/children using a blanket.
  2. Have your child crawl across a “mountain” of pillows, and couch cushions.
  3. Wall push-ups, chair push-ups, wheelbarrow walking, and donkey kicks.
  4. Jumping in place, hopping or jumping jacks with the red light/green light game.red/light green light
  5. Animal walks such as crab walking, bear walking, frog hopping. Play red light/green light with these different walks.
  6. Log rolling across the room, or over a pile of pillows and blankets.
  7. Play the “roly poly” game where your child sits on the floor and curls up into a ball, and rocks back and up again.
  8. Give your child a magic carpet ride. Have them sit or lie in a blanket and pull them around.  If you have more than one child, they can help you pull their sibling around.
  9. Play catch with large, soft objects such as pillows or oversized stuffed animals.
  10. Have turtle races where the kids are crawling on hands and knees using a large pillow or couch cushion on their backs as a shell.

Messy, Tactile Play Ideas:

Setting up a vinyl shower curtain or a paint tarp can minimize the mess, and allow your child tSensoryhe freedom to fully explore textures.  If you have a young child, you can always have them explore textures in the tub.

Here are some ideas:

  1. Have a car wash with cars, sponges, soap suds and a spray bottle.
  2. Shaving cream, finger paints and cornstarch mixed with water are all great textures. For more texture ideas click on this link.
  3. A bin filled with dry tactile textures such as rice, beans, split peas, aquarium rocks and sand are all great options. Hide items for your child to find in the bin for a treasure hunt.

For more information about Easter Seals DuPage & Fox Valley please visit EasterSealsDFVR.org.

Cheer Your Kid On with a Smile

As a client of Easter Seals and the Fox Valley Region, sometimes it can be hard to keep your spirits up. You go to therapy and the progress can seem really slow. It can be frustrating to go week after week not to see concrete progress. Parents have to be their child’s biggest cheerleaders. Here are a few tips to keep spirits up during therapy. Cheer

 

–         Acknowledge the little things such as a good step during walking if your child is in physical therapy.

–         Tell your child if they are close to reaching a goal.

–         Have the child relay what they did in therapy to another parent, a sibling, or another significant other in the child’s life.

–         You could make a fun progress chart at home and keep track of the progress they are making in therapy.

–         Have siblings or grandparents come in every once in a while and see how far the child has come. Grandparents in particular love bragging on grandchildren!

I recognize it is tough on parents too to see a difference when their child is in therapies week after week. Try to stay positive and remember that smiling at your child can make all the difference.

Volunteer

Here at Easter Seals DuPage and the Fox Valley Region, we recognize that volunteers are crucial to keeping our organization excellent. We recognize it so much that we recruit from different organizations. Recently, we went to Montini Catholic high school to raise awareness about Easter Seals. Over the years, we have found that having a recipient of our services provided speak and share their story is effective. Along with being an intern, I am a client so they asked me to go. Here is what I said:

During senior year of college, I was faced with a difficult decision. Do I go to Marquette University or Elmhurst College? Ultimately, I chose Elmhurst College. One of the many reasons that gave me confidence in my decision was that Easter Seals was fifteen minutes away. I have Cerebral Palsy and physical therapy is crucial to staying healthy. Let me explain my disability.

I have a form of Cerebral Palsy that is quite unique because my muscles are not super tight all the time. The actual cerebral palsy affects my balance and ability to talk. I have a lot of involuntary movement due to three movement disorders. I have a slight scoliosis on top of the constant movement and the cerebral palsy. As you can see, my need to be physically fit and have people watch everything going on with my body is great. I am a busy woman and I don’t have time to necessarily watch my body and worry about it. I was very involved in college, I was involved in a sorority, three honor societies, was active in Catholic campus ministry; I was a busy woman and still am.

Currently, I am interning at DuPage Easter Seals. This is an invaluable experience because not a lot of organizations would want to hire somebody with a disability. But Easter Seals doesn’t just talk the talk, they walk the walk. I have gotten hands-on experience. Its one thing to be in class, it’s another thing to work and gain experience.

I also am a professional speaker. I have spoken to doctors about how to treat patients with special needs, spoken to teachers and school staff about the challenges of high school; I’ve spoken to elementary schools about accepting people who are different. I speak to a variety of audiences.

Because of Easter Seals, I know my body is ready to go every day. I have two incredible physical therapists that have become like family to me. We work on physical therapy of course, but they know when I am having a bad day and they will make me talk about it. I am so grateful for both of them.

At this point, I want to stop lecturing at you and let’s have a lively question and answer session. You can ask me about anything, my disability, my equipment, my internship, or anything else, I am an open book.

The volunteer manager accompanied me and she explained how fun volunteering is. The students seemed to enjoy hearing from us. The best part was that three students had called our center by the end of the day wanting to volunteer. If you would like to volunteer, you can contact Cassandra Salinas at 630.261.6240 or csalinas@eastersealsdfvr.org.  MH900024438

Caregivers Early in Life Means Independence

There are advantages of having your child with special needs have a caregiver at a young age. For obvious reasons, it can be difficult for parents to trust someone outside of the family. However, if parents do not expose their child to other caregivers early in life, it can have ramifications later.

“You need-and certainly deserve-a break from time to time. In fact, without any “time off” from your parental duties, you are at risk for developing a stress-related illness, and jeopardizing your mental health” (families.com).  Parents can use this time to go out on a date or have the caregiver help during the day. This also allows the child to gain trust outside of the family which is important when they live in a group home or live independently with caregivers. Several successful stories can be found at:  abilitypath.org. For a independent future for your child, it starts with the first few relationships. “These first relationships are the foundation for young children’s growth and development in social, emotional, behavioral, language and cognitive domains. This is true for all children, including children with, or at risk for developmental disabilities” (ncast.org).

On a personal note, I’ve had several success stories. I had many babysitters since I was in pre-school. In addition to babysitters, I’ve always had an assistant with me at school. These women helped me realize that anyone was capable of helping me. There is one woman in particular that stands out when I think about care outside of my family.

 My family hired a young woman named Allison to be my respite care worker when I was 12. She came to give my parents date nights and a few weekends away. At the beginning, my mom would stay home and watch Allison interact with my younger siblings and me. As time went on, we began to look forward to our time with Allison. We would want Mom and Dad to leave so we could have fun and make ice cream sundaes! As the years passed, Allison and I became friends. She would take me to the city, on my first road trip and to other fun outings.

After seven years of spending time with me, I no longer needed Allison. I was going off to college and she was settling down with her boyfriend. She gladly helped me with the first week of college. After that, she got married and had a beautiful baby boy. I couldn’t imagine not having Allison in my life.

Allison helped me realize that anybody who was trained properly could help me. Working with Allison who was a virtual stranger at first, helped me be independent in college and after graduation. I feel as if my parents had not exposed me to people like Allison, I would not have had the confidence to be as independent as I was during my college years and beyond.  My family used the Jewish Children’s Bureau (www.jcfs.org) to find Allison. My family and I know it can be challenging to find the right first caregiver. Here are some resources to help you start: