Still Keeping Pace With Our Boy
Thwarted Desires, Duly Dealt With

The Company We Keep


Beach sky in late March



We went down to the beach yesterday and Charlie and Jim had a splendid, sun-warmed, crosswind blowing, 18 mile bike ride.

It was our first trip back to the beach since, while I was sitting down to dinner with my students in Delphi, Jim texted me that, just before they had gotten to the beach, Charlie had gotten very upset at my mother. A very tough situation had followed, rendered all the worse by the fact that the four of them (my dad had been sitting in the front seat of the white car, my mother in the back with Charlie) were nowhere near our house. Things turned out all right-- Jim and I are, as you know, no strangers to extremely difficult moments that involve a flailing, now adult-size, child---but to say it was harrowing is the greatest of understatements. I did think I might have to head back home, which would have meant the end of the Greece trip for all of us. I was the only professor with my nine students, my colleague who was also to come having had to stay home as her grandmother had passed away the morning we departed.

Things turned out all right, the trip went on (and was exceedingly fabulous), Jim and Charlie and my parents made it through the week (though three-quarters of them have spent the pass week coughing and sick). My parents remain unflinchingly loving of Charlie, even when he has his very worst moments.

I have to say, it all made Jim and me wonder, what happens when there aren't people around who care so much for Charlie that, when something really difficult happens, they don't just write him off, up the psychiatric meds, and pronounce him only suited to live in an institutional setting?

I don't know the answer or if there is an answer. Obviously we and Charlie's teachers and therapists work everyday to teach him other ways to communicate everything from a stomach ache, an uncomfortable shirt, to severe distress. We seem to be doing a decent job with the day to day things; no small coup, considering Charlie's minimal verbal ability and apparently limited capacity for recalling words as he needs them. But when anyone is upset, fearful, tired, anxious, grouchy, it can be far harder to follow all those nice protocols you've been taught.

One thing I can say: That night in Delphi, as the students were helping themselves to big slices of bread and trying out the olive oil, I mentioned what had happened with Charlie. I also said that I was going to be very rude and spend the meal texting and staring at my cell phone.

The response was universally sympathetic, kindly, and concerned. The students asked about how my mother and Charlie were, and some did so for the rest of the trip. In my teaching, I have frequently mentioned Charlie and life with autism, but not so much with this group of students, who I started the trip not knowing as well as others on previous trips. On meeting a number of them last Tuesday, I was pleased to discover that the sense of camaraderie and (not that they would put it this way) fellowship they had grown to have after spending several days together traveling in a foreign country had remained.

It makes me feel hopeful, to think that there are more than a few out there who have such sympathy about Charlie. I like to think that no one can take care of him as well as Jim and I do and I have a hard time thinking that, should this indeed be the case, Charlie will flounder on finding himself reliant on others who don't do as we do. But I suspect I will have, albeit gradually, to let go of this fear, and teach Charlie to learn to be with others. Certainly it means a great deal to know that some others might be so kindly disposed towards him, even in the tough moments.

After we got back from the beach, Charlie and Jim rested a bit and then did another brisk bike ride. Despite all that exercise, Charlie did not go to sleep past 11. And, he didn't go to sleep in his bed, but stretched out on the big black couch, across the room from where Jim and I were sitting. I rather think, he wanted to share in whatever we were doing.

He is great company, is Charlie.



Jim and Charlie biking in their favorite place


Comments

HappyElfMom

Yay that things worked out so well!! But... yes... all of us who have children with severe needs do worry so much. I appreciate how you can be honest about the adult flailing about and ALSO that he is great company. I know those feelings quite well myself, often on the same day or even in the same hour... Hugs and peace to you. :)

Sarah

It is painful to hear about this. My heart goes out to all of you.What amazing parents you have! Our family fled for good when Autism was too much for them to take.

Your post makes me think: Mars will be 14 May 4th. I am 70 and single. His challenges are different from Charlie's. His conversation skills are kinda OK. But they grow out of perceptions and experiences unknown to "native" speakers. How long will it take him to master English as a Second Language? Will it be possible without my teaching methods? How will he learn to understand what he reads without me there to translate?

Where is the life-giving research on Autism language and communication knowledge and wisdom embodied in Autism Mothers?


Kristina Chew

Painful tough stuff, but I know I have to make myself think about it..... still looking for that life-giving research.

Sarah

Hi Kristina,

I am intrigued by the program Liz Ditz teaches to fund raisers which seems to involve a narrative called: Challenge, Creativity and Connection.

With Autism the Challenge has been made clear in terms of children, the Creativity is maybe something like ADA taking the blame away from the "Refrigerator Mother" and "curing" the child. The Connection to donors is giving money for the "cure."

What is the Connection in narrative that would bring the right kind of support to parent-therapists of teens? Charlie on his bike? Mars playing Mozart K315?

Liz, are you reading this? What do you think?

Sarah

Oooops. Typo. I meant ". . . ABA taking the blame away. . ." not "ADA."

Kristina Chew

@LizDitz, a question for you!

@Sarah, I was trying to figure out how the ADA fits in---though I think it makes sense too---

Liz Ditz

Sorry it's not something I teach but I heard about it from two really effective fundraising professionals I know. I've been trying to use it in my own marketing.

I was quoting a blog post by Kivi LeRoux Miller.

I spent yesterday morning watching Loving Lampposts.

Aside from enjoying "visiting" with Jim, Kristina & Charlie, one of the strong threads in the movie is the connection story

Connection stories are the “bridging the gap” stories and “big meaning in small events” stories. Start with a small, specific situation or event, and then look for the larger connection to the greater human experience. These stories usually have a little surprise or epiphany in them that really drives the point home. It’s a nice little story, but the meaning doesn’t become really profound until you add in those last few surprising details or revelations. You’ll see heartfelt connections between the people in the stories and also between the storyteller and the reader.

Again and again, Loving Lampposts make the point that people with autism are whole, authentic people.

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