A very wise friend of mine has written a wonderful take on what is necessary to be the external brain for a person with Fetal Alcohol Spectrum Disorder (FASD). Like me she is the parent to a houseful of children affected by FASD. It can be so very frustrating as the world does not see this disability. The world is constantly telling the caregivers and the affected person how they must learn…they must adapt. They must learn to not have brain damage. I am unsure how a person can learn to not have brain damage. This causes so much stress for both the person who is affected and their family or caregivers. I hope all will listen to this wonderful food for thought.
Food for thought. Why is it that those that can see, really can’t see? A Blind person walks with a white cane….. … ….the world adapts to them-would you take their cane away? A deaf person can’t hear…… ….the world adapts to them-would you expect them to hear you? A person with diabetes and can’t eat certain foods…… …..the world adapts to them-would you expect them to eat high carbs and sugar? A person with Down’s Syndrome……. …..the world adapts to them-would you turn away their hugs? A person with a wheelchair….. ….the world adapts to them-would you take away their ramps and require stairs? A person with Cerebral Palsy…. …..the world adapts to them-would you be unkind and expect normal movement? A person with crippling physical deformities or missing limbs…… ….the world adapts to them-would you take away their adaptive equipment? A person with learning disabilities…. ….the world adapts to them-would you take away their IEP‘s? A person who is severely mentally handicapped…. ….the world adapts to them-would you take away their guardianships? A person with Alzheimers or dementia….. …the world adapts to them-would you expect them to remember yesterday? and yet…A child with the diagnosis in the FAS spectrum can have all of these things, but many times only has some of them…..is expected to “get it”, to “fit into society”, to “eventually learn”, without having a permanent external brain 24/7 to guide them… Oh how many times have I heard….If you just try harder, or longer or better they will get it, they will learn… Just like all these other disabilities, Fetal Alchol Spectrum Disorders are a lifelong disability. It doesn’t go away. It is a brain disorder. There is brain damage. It can’t be corrected, because we can’t grow new brains. Some days it seems like they “get it”, the next day it’s gone again. WE must get the glasses to see this. WE must adapt to them.