Photo by Kyle Broad on Unsplash
A couple of weeks ago, I melted down.
I endured a LONG summer — sixteen weeks — without a full time program to keep Ian busy. Most days, Ian was at home with nothing to do. He can keep busy with computer stuff for a long time, but it’s not cool to expect him to sit for 18 hours in front of a computer every day. So, I tried to think up fun activities for him, on top of the usual chores of driving him to therapy and working on paperwork.
On top of all that caretaking exhaustion, I couldn’t stop listening to a very loud ticking clock. Ian’s public school entitlement ends in June. Now, hopefully, he’ll be totally ready for full time school and work by that point, and won’t need me for much. But that’s not a certainty.
And my work commitments increased.
By last week, I felt like I had a weight on my chest. My sleep schedule was a mess and I wasn’t even hungry. Burnout is a physical thing, too.
I had all the classic symptoms — a walking cliché. So, we talked about how to lessen the load with lower expectations and more self-care.
Steve and I also need the occasional weekend away on our own. We usually take Ian with us everywhere, because I’m afraid that he’ll crack his head open on the edge of the coffee table during a seizure. I also don’t like him home alone totally isolated. My folks and Jonah help out a lot, but I hate to bother them.
I reached out to the state to get some respite care service, but that’s yet another pile of paperwork and interviews. It will take weeks to get that set up. Most agencies don’t have workers who will work on random Saturdays, rather than in a full time capacity.
Happily, Ian’s school went back to a full time schedule yesterday. After wasting a day with dumb video games on my phone, I’m back to work. Work makes me happy, so I feel normal again.
And, when I’m fully recovered, I’ll slowly start figuring out some longterm solutions.
LINKS
“A 12-year-old schoolboy from a small rural town in the Bay of Plenty has caused a seismic shock-wave in New Zealand’s golfing scene – winning a national title after only having played three rounds of golf in his life…. Bayleigh also has autism; until recently, he spent most of his time in class under his desk, not speaking.”
“The ‘science of reading’ swept reforms into classrooms nationwide. What about math?”
“Grade inflation is not a victimless crime.”
Mini-rant:
More states are looking at reforming Paid Family Leave, which would benefit full time workers who only need 12 weeks to care for a family member. But what about caretakers, who are NEVER able to work, because their loved ones have serious issues?
Support for caregivers, should not be limited to those dealing with a temporary illness of a parent or spouse. Caregiving for a disabled child is a life-time, 24/7 job with no vacations. Many have never been able to hold a full time job. The gov't has to pay for that labor.
Caregivers should be paid a salary for the full amount of hours that they work. If they put in an 18 hour day, then the government should pay them for 18 hours of labor.
“In the fight against students’ learning loss, numerous states and school districts have implemented new curriculum in reading and math, bringing fresh urgency to another important issue that needs to be tackled post-pandemic: educating the educators.”
I wrote about local government in my main newsletter.
Burn out is absolutely real, and I hope the end of summer will mean some school day respite for you. My husband and I are infinitely looking for respite. On paper, my son is qualified for chunk of hours every year - finding actual providers (who will work for what the state agencies pay) for a date night or even a weekly shift, is next to impossible.
Yes indeed. I loved my husband and was his caregiver for years. The burden was immense but most people only concentrated on how my husband was, not how I was. We need to be kind to each other. The burnout is real!