The month of March always has me in deep reflection. As an awareness month to educate the public about Cerebral Palsy and all that this medical diagnosis signifies, I think about all that my 11-year-old daughter has survived. I think about what emotional turmoil my family and I have survived and about the many families with a special needs diagnosis.
While caring and awareness may be brief for some, the many “hats” that I must wear are the forever symbols of the delicate care I must incorporate, as life is now filled with priorities much different than those of mainstream society. It is a rocky path strewn with emotional, physical, financial, and medical challenges, but these bumps in the road can be faced with help from caring organizations like CARE Parent Network.
Founded over 30 years ago after the implementation of The Lanterman Act (laws to protect and grant equal rights for those with disabilities), CARE Parent Network is a family resource center that provides support for the disabled and the loved ones that care for them.
When my daughter was first diagnosed with Cerebral Palsy, a medical condition due to injury of the Cerebral Cortex (the part of the brain that controls muscle movement and function), I thought her world had been shattered into pieces, resulting in many future hardships. Families feel lost after being told by a medical professional that their child has a condition that will limit their physical or developmental ability. They can feel alone with their fears as they navigate medical terminologies, paperwork, and life-long commitments to readjusting their daily schedules—let alone the educational options and legal rights of which one must be knowledgeable in order to wear a respectful but firm hat of advocacy. While a parent cares for the child, CARE Parent Network takes care of the family unit, providing a network of supportive and informative options.
Whether through support groups or one-on-one support, CARE Parent Network’s staff are not only knowledgeable but empathetic, as they are, themselves, special needs parents, like program director Hannah Michaelsen. With a degree in public administration and the parent of a son was with Autism, Hannah was a volunteer for CARE for 14 years before becoming its program director. The most gratifying part of her job, she states, “is to share in a chapter where others are more empowered and confident because of CARE’s existence; to equip the parents to advocate and navigate not only the system, but their daily lives.” Through CARE, doors are opened to compassionate directions of understanding. They help clients navigate the intricate paperwork of IEPs (educational planning and goals) and legal rights, as well as addressing personal concerns and frustrations.
May the months that introduce awareness also introduce connections that inspire compassion and a purpose to create a sustainable and capable community; one where a disability turns into visibility beyond the fog that can overwhelm us.
The ribbon we wear this month is about being aware that there are people who do care. It is a ribbon worn not just once a year but every day. May CARE Parent Network continue to weave together all ribbons and teach families to wear them with not just pride but unwavering hope.
For more information, please visit careparentnetwork.org or visit their Facebook group page: Care Parent Network
Stefanie Lynn Creations 