March is Cerebral Palsy Awareness Month

By: Jack McGraw, Easterseals DuPage & Fox Valley client

While 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.

I 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.

Can your child benefit from Constraint-Induced Movement Therapy?

By: Emily Muzzy, Occupational Therapist

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

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

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

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

Who is appropriate for constraint therapy?

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

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

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

What does a session of constraint therapy look like?

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

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

Toe Walking in Toddlers…is it Normal?

By: Bridget Hobbs, PT, DPT

Walking on the balls of the feet or “toe-walking”, is quite common in children just learning to walk. The good news is that many children out-grow it within a few months of walking.  However, if your child is toe-walking beyond the age of 2, it is worth talking to your pediatrician about it, as there may be an underlying cause associated with this.

There are a few main reasons why children toe-walk:

• Shortened Achilles tendon

A shortened Achilles tendon (bottom part of the calf) can cause less flexibility at the ankle, making it more difficult for a child to get his heel down when walking.  When this is the case, physical therapy can help stretch the calf muscle group and strengthen muscles in the core and front part of the lower leg. This therapy can help the child learn to walk with a more typical “heel to toe” walking pattern.  Sometimes your therapist will recommend a brace to wear during the day and/or at night in order to help get a child’s heel down when walking and stretch the Achilles tendon at night.  In some cases, a series of casts may be used to help gain range of motion at the ankle.  Surgery may be recommended for correction in rare cases or when “toe-walking” persists into later childhood.

• Sensory Processing

“Toe- walking” can also be a sensory-seeking behavior. Children who need more proprioceptive input will lock their knees and ankles. Children may also lock these joints to feel more stable and better prepare them for physical activities, such as running. Some children walk on their toes as they are hypersensitive to different textures or temperatures on the floor. “Toe-walking” can become a habit and if done frequently, can lead to tight Achilles tendons. This is why, if you or your pediatrician feel like your child has sensory concerns, that they are evaluated by an occupational therapist to help with strategies.

• Underlying Medical Diagnosis

If “toe- walking” persists beyond the age of 2 or if it is accompanied by muscle stiffness, difficulty with communication or language delays, coordination problems, or if your child toe-walks just on one side, it is a good idea to speak with your pediatrician about it so you can find out if there is an under-lying cause.  Diagnoses including Cerebral Palsy, Muscular Dystrophy, Spinal Muscular Atrophy, Charcot-Marie Tooth and Tethered Cord have all been linked with early “toe-walking”. Some (but not all) children with Autism and other Pervasive Development Disorders (PDD) have also been noted to toe-walk.

• Idiopathic “Toe-Walking”

Idiopathic “toe-walking” is used to describe a child who toe-walks without any known reason.  Children who walk on their toes may have frequent falls, lean more forward when they walk, and show more difficulty with balance. “Toe-walking” may also be hereditary, where more than one child in the family toe-walks.   Early recognition and intervention is fundamental to prevent a shortened calf muscle and help develop a normal walking pattern and balance reactions.

Many children “toe-walk” as they learn to walk, and with a proper heel-to-toe walking pattern, they learn fairly quickly. However, if you are concerned that your child is toe-walking beyond the age of 2, or is showing other difficulties with development, it is important to speak with your pediatrician.  They may refer you to a physical or occupational therapist who can further assist you and your child.

Learn more about Physical Therapy services at Easter Seals DuPage & Fox Valley: http://eastersealsdfvr.org/physical.therapy.

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.

While 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’m 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.

You 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.

An Incredible Mile

By: Hannah Thompson

Hannah started this blog in 2012 as an Easter Seals DuPage & Fox Valley intern. You can read the first blog post here. The below post has been adapted from her personal blog.

Photo by Rich Howe

I woke up super excited as it was the day of the 12th Annual Run for the Kids: Superhero Hustle. Morgan comes in at 7:00am and is tired but excited! I picked out yoga pants, an Easter Seals T-shirt, and my Victoria Secret athletic jacket.

I see Mom and Dad in the parking lot and I am pumped! I find my therapists and we go stretch in one of the therapy rooms. We quickly stretched and Mom helped us bring the walker to the start line. Mom had to go to my little sister’s water polo tournament but she took so many pictures before.

10, 9, 8, 7, 6, 5, 4, 3, 2, 1, START! I started walking with Dad, Joanne and Tami who are my devoted physical therapists, and Morgan. About a block in, Jenn, my main caregiver shows up with her dog so I have quite the entourage! I’m surrounded by little kids who have unimaginable challenges in their lives. They have a lifetime of surgeries and therapies to go through. However, on that day, they were being applauded for their heroism. To have them acknowledge me by cheering me on was humbling. In my case, being an adult has been easier than being a child with a disability. I had the storybook childhood but I had a lot more doctor appointments because I was always growing and that meant a lot of adjustments with my equipment or people wanting to make sure everything was working as it should. Now that we have that all figured out, Mom, Dad, and I know what is important which is my movement disorders so I see a neurologist once a year and physical therapy twice a week. That is nothing compared to other individuals with disabilities have to go through. We dodged so many bullets and that was why I was able to complete this goal.

When I was roughly three blocks away, I could feel the energy of the crowd. I start going faster and faster! My dad had to speed it up along with my entourage! I was fifty feet from the finish line and the crowd is CHANTING my name! Morgan and Jenn start taking pictures. It’s my moment! I cross the finish line and its bliss! I did it in 46 minutes which is less than we anticipated which had been an hour.

I got so many hugs and good wishes. I have to say thank you, thank you, thank you for the outpouring of love on Facebook and Twitter. It was unbelievable! Of course, thank you to my dad and other entourage members. It was an incredible mile!

The real reward was a therapist coming up to me and informing me that her client now wanted to walk a mile next year. That feeling is priceless!

Of course, thank you to Easter Seals DuPage & Fox Valley for 7 years of outstanding love and support!

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

Headed to the Gym

Physical activity for people with disabilities is crucial. If we don’t participate in the proper amount of physical activity, our physical impairments could get worse. For me, the proper amount of physical activity is physical therapy twice a week and getting out of my chair as much as I can. I know this is incredibly important, however, I get distracted. I’ll make plans with friends ex: go shopping and it creates a distraction. Obviously, I can’t always be exercising or stretching; I would not have a social life or go to work, but I have to balance physical exercise with the demands of life.

National Center on Health, Physical Activity, and Disability state:

“More recently, the 2008 Physical Activity Guidelines for Americans provides science-based guidance to help individuals with disabilities aged 6 and older improve their health through appropriate physical activity. These benefits are even more important if you have a disability, since people with disabilities have a tendency to live less active lifestyles”.

This is a challenge that everybody deals with. How much do I work out? What exercise classes are best? We all struggle with balance. How many hours of therapy give my child a life and also maximizes independence? It’s a hard question that I don’t have the answer to.

 However, some people commit their life’s work to physical fitness. The community of Easter Seals DuPage and the Fox Valley Region would think of our wonderful physical therapists as people who dedicate their lives to physical fitness and we do appreciate them. However, some people with disabilities decide to shatter stereotypes in the world of physical fitness. Craig Koonce, a power lifter who has Cerebral Palsy does that every day. He defies the odds in a gym. Koonce goes to the gym everyday to prepare for weight lifting competitions. He won state in Pennsylvania  in 2010 for power lifting and he went on to nationals.  He dreams of starting a center that takes holistic approaches for both disabled and able-bodied individuals. Check out his story here.

We can’t all be like Craig. I could never spend that many hours in a gym. That amount of physical activity does not appeal to me. Personally, I set aside certain parts of the day to have my personal care attendants get me out of my chair. It can be as simple as laying on the couch and watching my favorite TV show or after work, I usually stand with an attendant for a good ten minutes. USA Today states, “If you are in a negative-thinking cycle for more than 10 minutes, stop thinking and start moving. Move your body every hour; sitting saps motivation”. The magazine also says, building incentives and giving yourself a rest day is a good way to keep working out.

You can set your own regime and choose your own activities but it’s important to remember that physical activity is crucial when you have a disability. Plus, the holidays are practically here…if you exercise, you won’t feel as bad when you eat all those holiday goodies!