Month: March 2022

March is Cerebral Palsy (CP) awareness month. According to the CDC, CP is a group of disorders that affect a person’s ability to move and maintain balance and posture. Symptoms of CP vary from person to person. CP is the most common motor disability in childhood. Read more from the CDC here.

Lucky for us, we have an expert at our disposal! Our Community Engagement Manager, Molly Hogeboom, has a diagnosis of CP and shares her perspective below.

• What is Cerebral Palsy?

Cerebral Palsy is a congenital disorder of movement and muscle tone. The diagnosis often stems from a brain injury at or before birth. CP affects everyone differently. You meet one person with CP; you meet one person with CP. It can affect just your legs, muscles, your whole body, or as in my case, be only one side affected. For some, this may include impairments with communication also.

My CP affects a lot of my dexterity; in a sense, my right hand and arm are mildly paralyzed. My right leg is also weak, and my gait is different from an able-bodied person’s.

• How has this diagnosis impacted you/your family

Ya know. My cp impacts me daily, but I have learned to navigate its challenges, one literal step at a time. I do not let my disability hold me back. Resources and therapy set a strong foundation for me to utilize all of my abilities. I don’t look at things with an “I can’t do that” attitude, but rather, “how can I do that?”. The answer to that question may be, getting creative… like using my mouth to paint my fingernails. Making multiple trips when getting my lunch ( Because I can’t carry my drink and plate simultaneously) or, most importantly….asking for help when I need it. That is part of doing things with a disability. I may not physically be doing it, but acknowledging and advocating that I need help is, in fact, doing it. I have had a rock star support system from day 1 of diagnosis. My mom and dad, my therapy team, family, and friends. At times, my “right hand” is my amazing husband, Wes. We have two boys under three… so our hands are full quite a bit.

• How can our community ensure kids with Cerebral Palsy are 100% empowered and 100% included?

I hope that the community would be willing to learn more about CP as a whole. That goes for all ages… As an adult, know how your workplace or places of hobbies or interests can be more accessible. Offer help if you see a mom that needs assistance opening a door for their son or daughter that uses a wheelchair. Or someone, like me, looks like they might be struggling to carry something. And when I say offer, that is what I mean. I love when people offer assistance vs. just assuming the help is wanted. If you are a parent, teach your kiddo about friends of all abilities and how we are unique in our own particular ways. Hey, I can even bring the Easterseals CEFCU ability awareness program to your school. Learn about inclusion, the fantastic organizations in our area that may serve people, young and old, with CP, and donate your time, talent, or treasure.

• What do you want parents/kiddos with a CP diagnosis to know?

To Parents- Maybe your journey is just getting started…or you are in the middle of the ride… please know. You are everything to your kiddo.. no matter how old they are. You are the fiercest advocate biggest cheerleader…. Someone to wipe the tears and to celebrate progress with.

You are seen, loved, and know that those around you know you are doing the very best for your child. “You’re the engine that makes all things go, And you’re always in disguise — a hero.”

To kids with CP…. I would first say that reminder that they are not alone. I know firsthand that sometimes it is not always easy, but your CP makes you the star you are… Having CP only adds to your shine. Depending on where you are in life.. that might not always be easy to see. Still, I promise you in life, the possibilities are endless with the right team and support behind you. The obstacles you face might not be the easiest, but they are what make you, you! Embrace CP as a part of who you are, don’t be afraid to tell your friends and people around you how it affects you if you need to. As Abbey Curran once said. “I have Cerebral Palsy; Cerebral Palsy doesn’t have me .”I hope that statement sticks with you as much as it does for me.

Check out this video to learn more about Molly, her family, and their Easterseals journey.

A little over two years ago, Wendell and Kathleen welcomed tiny twin boys named Alex and Bennett. Their family celebrates these boys as their ‘one in a million kids.’

Bennett loves to clap along to music, play peek-a-boo, and pop bubbles. He loves making faces at himself in the mirror and following along with his brother, playing beside him. Bennett has a diagnosis of Down Syndrome.

Alex loves to read books with anyone who will join him, splash in the water, and explore new surroundings. He loves to climb on a large box in the family living room. He has a diagnosis of Mosaic Down Syndrome.

Both boys have low muscle tone, meaning they do not have the strength that many children do early on. They receive physical therapy through Easterseals and build strength and endurance every day. They are reaching milestones like sitting, crawling, and walking.

Recently, Kathleen shared this message with the students of Limestone High School “Easterseals is a huge blessing to our family. And you are a blessing by raising funds to help our kids and many precious kiddos. So thank you. Thank you for fundraising for Easterseals. Thank you for taking the time to be a friend to us today.  Thank you for any time you take for any child or adult with special needs throughout your days. It will make your life richer too.”

“Teaching our children kindness and providing opportunities to be a friend to people with disabilities help them realize how much alike we all are! Also, the way we adults talk about others who are different from us impacts the next generation in greater ways than we may realize.”

Kathleen, Alex & Bennett’s Mom

Hear Kathleen’s full speech from the LCHS Easterseals Kickoff Assembly:

In October of 2017, The Romero family received a prenatal diagnosis that their son would likely have Down syndrome. Those words changed their lives forever.

“He was born in May 2018 and he changed our whole family forever. He is the light of our lives and is always doing funny things.” Said his mom, Trisha.  Cruz started receiving physical therapy and occupational therapy with Easterseals at 9 months old.  He learned to crawl and walk; now he is running. Some of his current goals include jumping and walking up & downstairs. He is also working on eating foods with a fork, putting on a coat and zipping it and taking off his shoes.

In 2020 the Romero’s were looking into special needs adoption when they saw a photo of a beautiful, dark-haired girl in an orphanage on the other side of the world. They spent 6 weeks in Ukraine during the adoption process of their sweet daughter Livia. Like their older son Cruz, Livia has a diagnosis of Down syndrome. At that time she had low muscle tone, limited physical movement abilities and could only drink pureed foods and milk out of a bottle. When they returned to Central Illinois they were able to get Livia in to the same therapy team at Easterseals that was helping their son, Cruz. She has come so far in the last 18 months. She is now walking around and playing with her three older brothers. She is also learning to use utensils and loves all kinds of foods.

Trisha Romero recently shared this message with the students at Limestone Community High School:

“Thank you for all your support of Easterseals. Please continue to treat people with differences the same. I never thought I would get so much from having children with special needs. Learning to slow down, enjoy life and all the little things.”

Hear Trisha’s full message here to the Limestone students below