To date, the well-intended young man who suggested my daughter with autism relieve her symptoms with a few tokes on a joint wins my personal autism mother's prize for the most bizarre uninvited suggestion for my daughter's disAbility. Many others have come before him. And true to course of this journey, I'm certain he will not be the last. It seems to come with the territory of having a child with obvious differences….
"What's wrong with her? Cat got her tongue?" Ouch. My spirit was particularly tender at the start of our autism journey. The clerk at the cash register had asked my very young child–only recently diagnosed with a severe developmental disAbility that was additionally compounded with a severe speech and language disorder–what Santa was going to bring her for Christmas. To this day, she'd follow such a question with a blank stare and silence. The comment was an induction to my first Christmas with autism, back when visits of grief came around unannounced and gut-punched. I looked at him and said, "No, she has autism." His response: "Oh, that's what's wrong with her." Ouch, again.
There was the mother in my daughter's Waldorf preschool. Bluntly she said to me, looking at me straight on, dead serious: "I think you are doing too much [intervention]." Oh, heavens. If she only knew. This was an alternative hippie-style school and the rigors in which I'd engaged my child ran counter culture to their counter culture. A kind woman I befriended there later admitted that she had thought the same thing as the mother who blurted her verdict. But, first my friend read up on autism early intervention. And then, she understood. She understood about brain plasticity and the need to intervene quickly with this pervasive disAbility that affected so many areas of my child's life. It was a preparedness plan. Survival. Protocol. I was customizing it. I was at the hippie school one day a week. I was doing creative arts therapies. A public preschool. Private speech and occupational therapy and group speech therapy. A couple years later, I would realize that we were doing too much or too much variety or too many venues, but I was doing what I thought was right at the time and I was desperately trying to infuse creativity into the rigor and compensate for a school system that was failing us with too few hours of engagement as per national best practice standards….
"Autism! Call me!" The card was tucked under my windshield wiper. I assumed it was from a parent hungry to connect with the owner of my car which sports it's own share of bumper stickers–one about loving someone with autism and another reading, simply: "Autism Awareness." Instead, the number I called was someone convinced that the line of quality, frozen organic food he wished to sell me was sure to change the life of my autistic child.
Oh. Bother.
Many years have passed and my skin has thickened. So many suggestions have been made by people who seem to either congregate at health food grocers or churches. They come out from behind the produce isle or behind the center pew. There have been so many that I've forgotten the most of them–juices, supplements….Did I mention pot?…Besides being unsolicited, the problem with many such suggestions is that the giver fails to take into account the in-cred-i-ble amounts of interventions and earnest research and prolific professional consultation a parent has been doing for years. In our case, a life-long diet of whole foods–organic as much as possible. And, while it provides a good foundation for my daughter, it is not a cure and my local Whole Foods Market supplies me well, thank you.
So, I decided to poll a group of mothers. Not just any group of mothers, but The Mothers From Hell. I told them about the pot suggestion and our private discussion group comments were double digits long. From that I picked two winners:
"Have you ever tried Shock therapy to get rid of his symptoms?" [And, yes, shock therapy has actually been used on autism.] The mother fantasized her reply as "Have you ever heard of punch therapy?"
The second prize winner's entry falls into the most uncomfortable arena of God and disAbilty. Specifically when followers of religion make judgments and proclamations. There seem to be a lot of those disciples lurking round the pews. Stay tuned for: "Things People Say. Part III" For "Things People Say, Part I," click here.
Postscript, the rest of the series:
God bless all you do, Leisa! Thank you for posting!
All I can say is “Good grief.” unsolicited advice makes me want to barf… Especially when I am the one doing it. Thanks for the reminder to keep my feet on my own is of the street.
Deborah (aka Tawanda Bee)
Thank you, Margie! And Deborah aka Tawanda Bee: ha! As said via another Nonviolent Communication student. It was through NVC that I learned that unsolicited advice is a violation of others. I don’t feel nauseous like you say you do, but I feel a burning resistance in either my 3rd or 4th chakkra. I’ll have to pay attention next time it happens. That would either be the power chakkra (3) or heart (4)….Interesting. Here is how I handled one incident, in case you didn’t see it. It gives me an opportunity to go into compassion and realize that this person’s strategy didn’t float my boat but they are trying to contribute. What I think sometimes happens is seeing a person with a disAbility brings up discomfort in others and they feel they need to fix it, fix them, fix you or say something to “make it all better.” It’s an opportunity for them to look at what’s coming up within them, but the easier strategy is to externalize and dump a fix it….This series is an attempt to take a look at the cost on our families when it’s handed to us, unwanted. I’m sure you are familiar with this first hand, as well. https://leisahammett.com/2012/02/things-people-say-part-i.html
Leisa,
Love all you wrote and have had my own interesting exchanges with people who are, to put it politely, “curious” about my teen daughter who has autism or have something to share with me about autism that they are sure I need to know. All well meaning but sometimes difficult to bear day in and day out.
Look forward to reading more…
Karen Jackson
Norfolk, VA
Director, Faith Inclusion Network
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