THE LIFE SUPPORT PROJECT | RESOURCES
Safety Gear
Comfy Caps: Soft helmets made with fabric you and your child pick out. Leah’s caps are adorable and comfortable. When our daughter wears her cap it allows me to let her live more free and independent.
Video Monitor: Monitors to help us keep an eye on our daughter with epilepsy while giving her the chance to play more freely. So often we holler her name to check in on her and locate her. While this is a hard habit to break, it is one we are working on because she is bugged by our holler, particularly when her epilepsy is quiet. I recommend you do your own research and find a monitor that works for you and is within your budget. Feel free to check out the video monitor link I selected as an example of what to consider.
Epimonitor: The Embrace2, an all in one smart watch is the world's first FDA-cleared wrist-worn wearable in epilepsy for seizure alerting and epilepsy monitoring.
Seizure pillows/mattress: Breathe-zy is a company that makes anti-suffocation pillows and mattresses for our people with seizures. We also use bed sensors/alarms to help make her bed and sleeping as safe as we can control while living with an epilepsy diagnosis.
Gravity/weighted blanket: It is not uncommon that sleep challenges come with an epilepsy diagnosis. Consider buying a gravity/weighted blanket for your person with epilepsy.
Pulse Oximeter: If you have concerns about your child’s oxygen levels, these devices can help you monitor their levels when you are home. Explore the link and see what device feels like a good match for you, your child and your budget.
National Organizations:
Team Impact: A unique multiyear program matching children facing serious illness and disability with college athletic teams across the country. Their mission is to guide children and teams alike in a mutually beneficial relationship of belonging, empowerment, and resilience.
Organizations in California:
Epilepsy Chapter of Northern California
Camp Coehlo - June 23-28, 2024
Family Camp - August 15-18, 2024
PAASS - A program dedicated to creating an inclusive supportive environment for individuals with developmental delays and learning challenges and to allow them to participate in community-based sports and recreational programs.
Ability Path - A program celebrating neurodiversity and empowering individuals with developmental disabilities through innovative, inclusive programs and community partnerships.
Camp Via West - stay tuned for 2025 summer camp schedule
Matrix Parent Network and Resource Center is a parent-founded, parent-operated nonprofit organization empowering families of children with special needs to successfully understand and access the systems that serve them.
Information for Families living in California:
The Lanterman Act is a California law that promises services and supports to people with developmental disabilities and their families.
California Children’s Services (CCS) is a State program for children with certain diseases or health problems. Through this program, children up to 21 years old can get the health care and services they need. CCS will connect you with doctors and trained health care people who know how to care for your child with special health care needs.
Regional centers provide a wide array of services for individuals with developmental disabilities. Each center provides diagnosis and assessment of eligibility, and helps plan, access, coordinate and monitor services and supports. Regional centers can provide respite and daycare hours for families. They also may cover services in the first 5 years of life including speech & language, occupational therapy and physical therapy. As you gain experience with the services available for your child, take some time to learn about self determination and if it is a fit for you and your family.
The In-Home Supportive Services (IHSS) program provides in-home assistance to eligible aged, blind, and disabled individuals as an alternative to out-of-home care and enables recipients to remain safely in their own homes.
Therapies to consider for your child with epilepsy:
Occupational Therapy
Physical Therapy
Speech and Language Therapy
Therapeutic Horse Back Riding
Mindfulness/meditation resources:
Author’s and Moms who totally get life with an epilepsy diagnosis: