Walk, Sprint, Run, Dash: We Do It Together

A good portion of our walks yesterday could more accurately have been titled dashes through the snow. There just seemed to be an endless store of pent-up energy in Charlie and running up and down the stairs in our house or in the L-shape of the kitchen through the dining room to the living room was most definitely not going to be enough. Once outside, Charlie barreled down the sidewalk, smooth and fast.

We've already been thinking next summer will be high time for us to enter him in a road race, at least the one-mile "fun run." I suspect he may not be thrilled with the idea at first and Jim and I are certainly going to have to come outfitted in shorts and running shoes. I do think, once Charlie gets a sense of what's going on (may take a couple, maybe several efforts---nothing new there), he may settle into racing, or at least the activity of running on a track. Even wearing a parka + fleece jacket and without running shoes, he's got the form and he's certainly got the stamina. 

Jim and I have been wanting to take him on a long walk, but, perhaps with the snow changing the landscape, Charlie has not been inclined. So Saturday, soon as there was a hint of Charlie being on the verge of more or less barreling into the walls, we said "socks," or just handed these to him, Charlie suited himself up in coats and gloves, and out we went. 

The day passed in walks and car rides and quiet time around our house, with Charlie occasionally disappearing into his room and making it oh-so-clear that he wanted to be alone---something I'd say is more than age-appropriate. Charlie needs his space and he needs to do the equivalent of "decompressing."

His room is looking a bit barren, I'll admit. A couple of weeks ago he removed all the stuffed animals, kid-size blankets, and some bins of toys from his room. I found an old laundry hamper to put the animals in and he piled up the bins (a bit haphazardly). On Saturday we showed Charlie a bunch of Jimi Hendrix posters. There were so many it'll take another few times to decide on which to order.  Jim also wants to get Charlie a poster of the Fab Four, circa their appearance on the Ed Sullivan show.

This boy is growing up. My parents commented on this, noting that Charlie, while sending them plenty of smiles, was also asserting that he wants his space, and was much less amenable to being plied into doing things he wasn't inclined to do (like eating vegetables and other healthy offerings cooked by my mom).

For these reasons, I continue to shake my head at any notions that Charlie and individuals who are, like him, on the moderate to severe end of the autism spectrum, are somehow "3-year-olds in an adult-sized body." I know there are 3-year-olds who regularly say longer sentences than Charlie and scads of kids younger than him who could do a host of things he struggles to, such as reading, or sitting through a movie (Charlie does not want to go to a movie theater at all these days; too much of an overwhelming sensory--noise, lights, and more---experience), etc., etc., etc.. There's a lot more to growing up than that. 

I shake my head as much at a statement made by one Asperger's individual regarding the proposed revisions to the DSM-V, which will collapse Asperger's and autism into "autism spectrum disorder." Michael John Carley has said that he will "'have a very hard time calling [him]self autistic," along with someone on one "extreme" of the spectrum who "'might have to wear adult diapers and maybe a head-restraining device. This is very hard for us to swallow.'" As Bev at AspergerSquare8 wrote:

I am autistic, Mr. Carley. I have always been autistic, and I have never been ashamed of having this in common with people whose needs are greater than my own. I worry, though, that people might think I'm like you. I'm not. I know that having a disability doesn't make anyone less of a person.

Being the mother of a child who has been wearing such a "head-restraining device" (at school, and for less and less time), I suppose I can see why Mr. Carley and others might prefer not to be associated with someone like, well, my own child. Personally, I found the particular "head-restraining device" my son had to wear, as insisted upon by our former school district, extremely "hard to swallow." I've remained ever grateful for the solidarity of Bev and many self-advocates, and many parents and many others, towards Charlie and our family. 

It is not unusual for me, while waiting to pick up Charlie at the Big Autism Center, to see a child having "behaviors" and staff very pre-occupied in helping her or him. I find myself not thinking, "so glad that isn't Charlie," but rather, "that could be Charlie," and to feel the connection to that child in distress as I do for my child when he is similarly upset. 

"We Go With Him" is the name of this blog (thanks to Jim---I am not so good at thinking of titles). It's Jim and me on the road with Charlie, yes, and as much together with all of you out there. Because I for one (and Jim for two and, I will hazard, Charlie for three) much prefer being with so many others all across the spectrum and all over. There are plenty enough people who see individuals with autism and with disabilities, and Charlie, as "other" and someone (something) they'd rather be separated from. We've got a very long way ahead of us and the walking (and the running) are much lighter together.

Comments

[Brenda (mamabegood)]

Amen! (Interesting to see that some with disabilites might have some prejudice against others with disabilities. Proves we are all human.)

[Jill]

I, too, found Michael Carley's statement offensive. Honest, perhaps, but offensive.
It's ironic that someone who proudly labelled himself an "aspie" balks at being lumped in with "those other people." It seems that some folks like to think of themselves as gifted while being dismissive of the social niceties. They feel that they should be given a pass when it comes to being considerate of others. It's not that they're rude or self-centered, they're neurologically different than (and superior to) the rest of us.
Maybe I'm being too harsh, but the aspie vs. autie argument seems like something cooked up by Dr. Seus to demonstrate the hubris and foolishness of human beings, We're all people and no matter what our capabilities we should try and be respectful of one another.

[Regina]

(smile) Show Charlie any other groups? He might be a closet Nirvana or Green Day fan. Just kidding, I recall your comments about "A Love Supreme". About a year ago I had reason to redo my daughter's room and we did the jump-up to something more "grown-up" and verging on "IKEA-like". I didn't know how well that was going to go over, but she loves her room. I'm glad we did it.

The notion that anyone is summed up in a few words or lumped into a class on short consideration and "that's-that" is not realistic..too much scope and nuance there. Truth be told, I have moments where my behavior or thinking is not too far from kindergarten, and my daughter is the one who is behaving like the adult.

As for Mr. Carley's thoughts, well, perhaps he's reweighed his words, is doing so, or may at some time. I don't know. It was a stunning insight into a particular point of view from an unexpected source.

[Kristina Chew]

"It was a stunning insight into a particular point of view from an unexpected source"---

Regina, you said it best!

Nirvana, sounds good to me. Maybe R.E.M. too and, yes, John Coltrane----plenty of free wall space in Charlie's room.

[Regina]

Well Kristina - you know we're gonna expect photos when you guys finish the redecorating (smile).

Thanks for the prop (smile...again).

I was going to say have a good week, but I just realized that we may be having another day off due to President's Day. Have a good one-I hope another off day isn't "too much of a good thing".

[mamacate]

I agree, I have been unpleasantly surprised in the past by parents who took a "your son is so much more impaired than my son so I don't want my son to associate with him" approach, and as well as hurting my feelings (and creating an inexplicable situation for my socially-challenged boy who still asks for playdates a year later), it came as such a surprise. I don't really understand why you wouldn't want a fellow traveler on this often lonely road. Ah well. Move on (and demur on playdate requests) is all you can do. People deal with the process of acceptance in different ways. I'm thinking of parents here of course, but I imagine that getting a diagnosis for yourself might be similar.