“Families are desperate for help,” writes Katie Miniel. “To get that help we must spread AWARENESS of the REAL LIFE struggles so that policymakers can make this a PRIORITY.”
The author comforts her daughter after a challenging day.
By Katie Miniel
Being a parent to a severely autistic young adult is a 24-hour on-call caregiver job. Even an everyday simple task is like trying your hardest to swim against the current. And no matter how hard you try to get to the top for air, you're constantly sinking deeper and deeper into the deepest darkest water where you forget what the beauty of the sky looks like.
The weight you carry is so heavy you can’t even focus. The only freedom you have at times is the chance to cry alone in the bathroom and BEG GOD TO LISTEN.
Every so often in between the constant chaos you get a glimpse of that light and happiness that you once knew. The days are filled with constant care and supervision because of the lack of safety awareness and behavioral control. With no mental limit, the strength is of more than a man.
One subject parents take the hardest is the judgment about discipline. You cannot beat a sensory processing disorder out of the brain of an autistic person with developmental delays. Autism is never a failure of discipline. Moving the needle takes constant work, positive praising, active ignoring, sticking by a routine and solid structure. It literally takes everything a person can give of themselves, leaving your soul tired and withered, while hoping you are doing all you can.
Parents turn to isolation, seclusion, depression. We often suffer undiagnosed PTSD, high anxiety, poor health and more. Most children with autism exhibit psychiatric comorbidities, including ADHD, oppositional defiant disorder, and anxiety disorder, as well as behavioral problems including noncompliance and defiance. These issues exhaust mothers and fathers.
People ask why we don’t send our children away. People don’t understand when you love so much, and sacrifice so much for your child, you can’t just hand them over to a state hospital to medicate until they are silent.
But families are desperate for help. To get that help we must spread AWARENESS of the REAL LIFE struggles so that policymakers can make this a PRIORITY. Because if we are UNSEEN and UNHEARD then no one knows there is a problem, and no one FIGHTS for the HELP, the RESPITE, the SERVICES that are today far too rare.
Katie Miniel lives with her family in Texas. To help give her daughter purpose and skill building she started Texas Made Soap, which offers a huge variety, including autism-themed soaps.
Editor’s note: To help raise awareness about severe autism, please share this new video, A Voice for Severe Autism: https://youtu.be/xwvKYE5C2Ys.
Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors.