Note: We are excerpting the article that follows below my intro from the Center for Family Involvement blog. For those of us with older children, adult children, this rings so profoundly true. Kim
We love our children to the end of the universe and back, the moon is for parents of typicals. But we face exhaustion and burnout. In my household, I care for three daughters with autism. They require 24/7 attention. They are happy, well fed, reasonably well dressed and thriving. I am fortunate to have budgets to staff respite hours. Very fortunate. A dear friend in our community lost her husband 3 months ago. She is now raising her severely vaccine injured daughter alone. Many Dads are raising their special needs sons and daughters without Mom's help. Others of us are divorced, like me. Joint custody and co-guardian are merely words on paper that might as well be Charmin - one ply. The irony in my situation is that the less the girls' father does for them (there is no financial support and he sees them every three weeks by his choosing) the more I'm prone to burnout.And that would not be good for my daughters.
What's your story? How do you think you will cope as you age? I'm always working on ideas. Autism Ages is still up and running, with a slow start. We're too busy living today, aren't we?
November 22, 2019
By Erin Croyle
What exactly is a caregiver?
We assume that parent/caregiver is interchangeable. One of the same. It’s not.
A caregiver, by definition, is a family member or paid helper who REGULARLY looks after a child or a person who is sick, elderly, or disabled. All parents serve as a caregiver from time to time. But that is not the same as the “primary caregiver” role so many of us took on the moment we became a mom or dad.
Why does this matter?
Acknowledging how different and challenging the parent/caregiver role is important because it can consume us without us realizing it. We love our children so deeply that the lengths we go to ensure their comfort become our new normal. But our norm is not the norm. That’s why recognizing and honoring caregivers is so important. We love our children unconditionally and will do anything for them, part of that needs to be loving ourselves too.
How is parenting different from caregiving?
Parents need babysitters. Caregivers need respite.
Parents take their kids to well visits and sick visits a couple times a year. Caregivers administer treatments and carry binders full of medical records to quarterly, monthly, sometimes weekly appointments.
Parents listen to doctors. Caregivers collaborate with doctors. Caregivers get second, third, even fourth opinions. Caregivers are often the most important part of the medical team.
Parents make dinner. Caregivers feed their children, by mouth, by tube, whatever is needed.
Parents tell their kids to do their homework while they prep dinner. Caregivers spend an hour helping a child do what should be 10 minutes of homework, which they’ve also helped modify. Dinner is a daily crapshoot.
Parents go to parent teacher conferences. Caregivers go to those conferences and also IEP meetings, behavior plan meetings, care plan meetings, person-centered planning meetings, Medicaid eligibility meetings. So many meetings.
Parents take their kids to soccer practice and drink coffee on the sidelines. Caregivers search for a sport or program that is suitable, fill out piles of paperwork, meet with the people running the program, go over accommodations needed, and are on high alert monitoring their loved one, often jumping in to help.
Parents sign their kids up for after school clubs. Caregivers contact clubs to see if supports are available. They usually aren’t. So they request assistance, offer to help change the system, or offer support themselves. Caregivers sometimes give up or don’t bother asking, because it’s not worth the effort.
Read more at Center for Family Involvement Blog