An Extra Special Little Girl: one mother’s experience supporting a child with Cerebral Palsy
Five years ago a daunting diagnosis was entering our life and most things have not been the same since. I’ve faced frightening and complex information about the thing that matters most to me in this life. My daughter was diagnosed with Cerebral Palsy at 9 months old. We were immediately connected with Early Intervention services. When our journey began my daughter was extremely behind on her development, she had vision issues, she had trouble eating and swallowing, she couldn’t sit up or roll over, she struggled with sensory issues, her muscles were very tight, she was uncomfortable and cried all the time.
Therapy and early intervention services helped us set small reasonable goals with physical therapy, occupational therapy, feeding, and sensory issues. I began navigating the system for services that I’d previously worked in for 13 years. Even with that experience it’s been extremely difficult to navigate. The amount of time it takes for appointments 2 hours away for pediatric specialties makes it impossible to hold a full time job.
Being a Mommy of an extra special little girl can feel isolating much of the time, but because of that our lives have been touched by some of the most kindhearted and devoted people that walk the earth. Therapy, and Early Intervention services gave me hope after her diagnosis and showed me there is life after diagnosis. We will forever be grateful for our team. The work they do everyday changes lives and gives young children with disabilities a fair start and the opportunity they deserve to learn and reach their best potential. I can’t express enough how important early intervention services really are!
Editor’s note: While most of you have heard of Cerebral Palsy (CP), we know not everyone knows about its cause or how it affects people. Nina was kind enough to share some information about CP and how you can show your support this March for CP Awareness!
What is Cerebral Palsy?
Cerebral Palsy (CP) is the most common disability in the world and impacts over 18 million people; however, no two people are affected the same way. It’s a physical disability caused by a brain injury during pregnancy, birth, or shortly after birth. It affects movement, coordination, muscle tone and control, reflexes, posture and balance. Additionally, there are often co-occurring conditions such as intellectual impairment, epilepsy, behavior disorders, sleep disorders, impaired vision, autism, and/or impaired hearing. Limitations associated with this condition are influenced by the location of the brain injury and the intensity of it.While there is still no cure for CP, prompt treatment will drastically improve a child's long term capabilities and quality of life. The earlier treatment begins, the better chance children have of overcoming developmental disabilities and learning new ways to accomplish the tasks that challenge them every day. Every case is as unique as the person who has it and every child with CP is still a child. They need love, guidance, play, support, creativity and rules. They are all individuals with varying interests, personalities, gifts, talents, opinions, relationships and lives.
How can you get involved and show your support?
Cerebral Palsy Awareness Day gives us an opportunity to raise awareness of CP in our communities. It’s a day that will remind us we’ve come a long way, but we still have work to do! On March 25th, Cerebral Palsy Awareness Day, don’t forget to wear the color green to show your support and educate others.
Nina Watkins is the mother of two young children, 8 years old and 5 years old, living in Lane County. We love the outdoors and the cold snowy weather is our favorite!