The day after our daughter’s traumatic entrance into this world, we learned she had cerebral palsy. On top of midnight feedings and dirty diapers, those first years for us were also filled with surgeries, doctors, therapists, monitors and equipment, in home nurses, and medication.
We weren’t just learning to be new parents, we were learning to become fierce advocates for our daughter. Here are a few of the resources we gathered during our journey.
DIAGNOSIS
Early identification is critical. In our case, Mia’s diagnosis was obvious at birth. However, if you feel like something is “off”, trust your instinct and seek a second opinion! Here are some great places to find answers if you feel like your child is at risk:
SUPPORT
Join a support group—online, through social media or in person. Seriously, I never felt so alienated as when diagnosis came. My mom-tribe includes rock-star moms raising a child with an exceptionality.
Down Syndrome Society of Kansas
NAMI (Mental Health)
Parent to Parent : For all diagnoses and fathers too!
R&R Collaborative Therapy Resources
EDUCATION
Every child is capable of learning! Special Education was the most complex system we had to navigate. Individualized Education Plans, 504 Plans, Individualized Family Support Plans all have their own acronyms and separate meanings, but do not be intimidated! I received all of my training from Families Together, Inc. They are definitely the most connected agency in the state, partly because Individuals with Disabilities Education Act (IDEA) makes sure of that, but mostly because they are staffed by parents who are raising a child with an exceptionality. Families Together trains parents through awesome workshops and individual consultation to be able to navigate the special education system and the health care system.
COMMUNITY RESOURCES
Since we couldn’t use a typical babysitter or daycare provider, we had to have specialized caregivers. Luckily, the Sedgwick County Developmental Disability Organization is a single point of entry that connects local families with services and helps families understand the eligibility requirements, waiting lists and compliance process for specialized services and subsidies.
It’s counterpart, COMCARE, offers comprehensive services for children with mental health issues including behavioral problems stemming from mental health.
FUNDING
Mia’s first wheelchair cost more than my first car! Doing a little creative “fun-raising” and getting in touch with these these agencies helped tremendously.
Kansas Society for Children with Challenges
Since we couldn’t use a typical babysitter or daycare provider, we had to have specialized caregivers. Luckily, the Sedgwick County Developmental Disability Organization is a single point of entry that connects local families with services and helps families understand the eligibility requirements, waiting lists and compliance process for specialized services and subsidies.
It’s counterpart, COMCARE, offers comprehensive services for children with mental health issues including behavioral problems stemming from mental health.
MEDICAL EQUIPMENT
Children grow and develop at crazy rates—children with special needs are no exception! Here are a few places that got us through some growing pains:
Assistive Technology of Kansas
Independent Living Resources Center
Cerebral Palsy Research Foundation
LIFESTYLE & RECREATIONAL ACTIVITIES
All kids want to have fun! Mia loved her cheer squad and we made a ton of friends! Here are a few resources that connected our entire family with fun!
AMBUCS (trikes and home modifications)
Special Olympics (various team sports through the area)
Boundless Playground at Sedgwick County Park
Warren Theaters )offers Sensory Friendly movies throughout the year for blockbuster family movies)
YMCA (offers adaptive classes including swimming)
Great article, Rachel! I’m sharing it on our Kansas Truck Mobility FB page. Thanks for all you do!