People often ask me, what’s the hardest part of raising or teaching a special needs child?
I always answer: On what day? At what hour?
My autistic child is an independent adult now, and this last decade I’ve been responsible for the welfare of a beloved parent going through the bedeviling stages of dementia and physical decline. I saw it through to the end, frequently with a strange sense of deja vu–like I’m going through the process of raising an autistic child again, but in reverse. Where children progress, learn to communicate in nuanced ways, learn to roll with the countless changes to routine in a day, learn to make independent decisions, learn to identify their own needs and get them met, the adult with dementia loses these things cell by cell. Communication wanes, self-care and decision-making becomes impossible, independent mobility ceases, emotions flare then die, routine again becomes bedrock. There was such deep sadness in that reverse process, and while among so many challenges there was no single hardest thing, one of the greatest and most difficult commonalities in raising a child with autism and caring for a parent with Alzheimer’s/dementia is this: the second-guessing of what you’re doing by people around you who have nowhere near a full grasp of the facts but feel entitled to their opinion.
In elder care, you get a lot of the same stressful platitudes you heard when raising your child: “have you tried . . .?” and “you really should . . .” and “why don’t you just . . .?” and “she never did that with me” and “at least you can . . . .”
I got pretty good at deflecting such comments in various ways, from silence to kindness to reflecting the questions and comments back to the “adviser.” But how much more peace, comfort, confidence, and energy would have been mine if I hadn’t had to deal with the thoughtlessness, whether benign or judgmental. Either way, I don’t forgive it because “they meant well.” They may have meant well but they didn’t think before speaking.
So this is the lesson I’ve learned from all this, how I conduct myself differently because of it, and this is my plea: if you’re talking to people in the spur of difficulty or who are grieving (loss takes many forms), think once, think twice before you speak. Ask yourself:
Do I have all the facts?
Is it any of my business anyway?
How might what I’m about to say be received by someone who’s already hurting?
Am I imposing my belief system on someone who might not share it?
Will it be helpful to anyone other than myself? Am I putting my need to say it over the feelings and needs of the people actually living it?
Might I be more a bringer of peace by what I don’t say?
© 2015, 2019 Ellen Notbohm
Categories: autism, autistic, ASD, Alzheimer’s, dementia, caregiving, caregivers, eldercare, parenting, aging, special needs, kindness