Imagine knowing exactly what you want to say, but the words don’t make it from your brain to your lips. You know how you want to move, but your body fails to comply.
This is the reality of living with something called full-body apraxia, a term I hadn’t heard until recently, despite my 30 years of being diagnosed with this and or that disorder. Many treatment providers fail to recognize how these motor and sensory differences might manifest.
In 1996, a group of 10 Asian American families founded a support network for people with disabilities and their caregivers. The organization eventually became a nonprofit called Friends of Children with Special Needs.
Today it serves over 1,500 Bay Area families, about half of them Chinese American, and offers a variety of programs across three locations.
Tens of thousands of California children with developmental delays aren’t diagnosed until they hit the school system. For children whose delays are detected late, the ramifications can be lifelong. That’s because interventions such as behavioral, physical and speech therapy are often most effective when started during the toddler years.
Billions of connections are made in a young child’s brain. Research shows between 85 and 90 percent of brain development occurs before a child turns 3.
Reaching adulthood can be like “falling off a cliff” of services for young adults with special needs.
As parents and advocates, we still have a long way to go to ensure these students graduate at the same rates as their peers and exit college with the same skill sets. How well a person makes a transition is usually dependent upon the degree of support that is available.