It's great to see such a huge turnout for this past weekend's No Kings Rally. However, at the end of the #weekend, a friend (who works in healthcare) asked me which rally I went to. I told him I didn't attend any due to caregiving responsibilities. He asked what was so difficult about bringing our son to a rally.
So...I want to talk about #caregiving for a bit. I've mentioned here before my son is fully #disabled with severe spastic #quadriplegic cerebral palsy, is #actuallyautistic, and has significant #sensory #needs. Caregiving is physically and emotionally #brutal. It's a significant #life change that, unfortunately, a lot of #people simple do not and cannot fathom - unless it happens to them.
The best way I can describe *my* #experience is it's real time #multivariable #calculus with known, unknown, and constantly changing variables. It requires high level non-linear systems-based thinking to solve #problems, #chaos #management, and constantly being on high alert.
#Burnout is inevitable, the #physical and #emotional #labor is genuinely exhausting on a cellular level, and #time and #access to self care is rare. It's also incredibly #socially #isolating.
In addition to the #social #isolation, navigating the outside world isn't just unnecessarily difficult it's a #failure of the #system. The uncomfortable #reality is most places are NOT #accessible, including #bathrooms. #Toileting is a basic #human #right! My son is too large and heavy for the baby changing stations in "#family #restrooms." We need to put him on a #dirty bathroom floor in order to change his #diaper. Where is the #humanity and #dignity in *that*?
I feel like a broken record explaining this to him for the past six years. It's honestly mind blowing and exhausting.
#parenting #disability #autism #support
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