By Kim Rossi
My three daughters are home from school and their day program until at least early April. All indications so far are that the April date given is simply to keep parents from grabbing pitchforks and torches and storming the admin buildings. As a whole, AofA autism parents are the strongest, most dedicated, capable, unselfish humans I know. Oh dear, we're humans. Many of us aren't the young thirty somethings we were when we started our jaunt into the rabbit hole. Or forty somethings. We're in our fifites or older. Being a 24/7 caregiver takes a steep toll. We have to try to get our rest, keep our heart rates below "kaboom" and help our children, may of whom are adults themselves, process this dramatic change in their routine.
All in all, my girls are rather easy going. They circle the house like three beautiful planets, each in her own orbit in a separate galaxy from her sisters. A separate universe from her "peers." One is more independent than her sisters, who come to me several times each hour to fix hair, snap a photo of a nursery school video, pull up socks, detangle beads and other rituals that are important to them. Important to them and so, important to me. Still, when you have three with full autism, the odds are stacked against you. It's kind of like bringing a knife to a gunfight. I am in motion from the moment my feet hit the floor. I stop at around 9:30 after the girls go to bed. I'm very lucky they are good sleepers, I don't take that for granted.
I am blessed to have budgets for staffing through our CT Department of Disability Services. I have a kick ass team of providers whom I trust and adore. But we're in quarantine - and so I can't have them here right now. They depend on their "side job" here for income. We're all struggling.
Regarding school, all parents are wondering how to hold down a job and teach their kids with what's being called "distance learning." I work from home, which helps. But my day is busy constantly not just with this the main AofA site, but with our social media, keeping Facebook and Twitter going - we have a large following on both. I'm a single parent and 100% on my own financially. I promised Dan Olmsted I would guard the keys to this site with my life.
My youngest daughter attends a private out placement. They sent home a gigantic binder chock full of social stories, activities, her token board and even manipulatives. They created a shortened IEP and highlighted goals and how to meet them. I have a roadmap to help her. IT. IS. AMAZING.
Others have not been so fortunate. Schools sent their kids home with a wing and a prayer and a "take care, brush your hair," of nothing.
What are you doing to cope?