1 hour, 37 minutes (#287)

“1 hour, 37 minutes,” Jim proclaimed as he and Charlie biked into our driveway. “Went to the park and all around both sides of town and two-plus towns over—and lots of kids out, since it’s Spring Break.”

What else can be done in 1 hour and 37 minutes, Charlie’s longest bike ride to date?
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1) A superific bike ride with a dad and his boy. With an autism dad and his autistic son.

2) An “arts and crafts” session of cutting, laminating, and velcro-ing during which our Lovaas consultant and I strategized about how to help Charlie handle transitions and wait without flopping backward on the floor and hitting his head. She asked how Charlie’s grandparents are doing and I gave her the latest (they could be better); I mentioned anti-ABA, anti-Lovaas blogs. We sat on the floor (my kitchen table is a mess of newspaper and Charlie crumbs) and talked about what to do for Charlie when his school closes. She had brought a calendar with the days marked off in Red Schoolbuses and pictures of our house so Charlie could note how many days would have to pass before school starts.

3) A fine walk in downtown Jersey City across from where the WTC used to be.
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4) Picking up bushels of pinecones, sticks, and dead leaves from the back yard and driving two bins full over to the recycling center, Charlie in the front seat.


5) Teaching two 50-minute classes, one in ancient Greek on the “comparative and superlative of adjectives, the other in which we read a poem (carmen 11) by the Roman poet Catullus in which he bids his friends, Furus and Aurelius, to tell the woman who has abandoned him how spurned–how hurt–he really feels, like a “flower touched by the passing plow” (praetereunte postquam / tactus aratro est).

Isn’t that how “devastated” some parents of autistic children describe themselves as feeling on receiving a diagnosis?

In my first autism blog that I began in June 2005, My Son Has Autism, I wrote that finding out your child has autism as “like the end of the love affair.” I came to that analogy because of how a parent feels a metaphorical “death” of certain “dreams and hopes” on hearing the “diagnosis of autism.”

But a parent needs to realize, the “dreams and hopes” lost, gone, broken are not the autistic child’s. They are the parents’, they are those of us non-autistic adults who, finding ourselves hanging onto a child “labelled autistic” are told we have just received the death knell.

Says who?
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Ok, says the team at the Minneapolis Children’s Hospital Child Development Center who gave us Charlie’s autism diagnosis on a scorching hot day on July 22, 1999. The team included a “Dr. Miller” (the psychologist); an MSW (who smiled professionally as Charlie stared at her screen saver: “They always look at those things”); a nurse who listened seriously to us on gluten-free casein-free diets and yeast allergies (Charlie was discovered to have celiac disease as a result); an Asian American intern who frowned when Charlie cried as she tried to administer the Vineland; the OT who (when Charlie stumbled on a little staircase in her therapy room) informed us that “these children do not feel pain.”

I need to check my journal, but that evaluation clocked in at less then 1 hour, 37 minutes. (It sure felt longer.)

6) After speech therapy, Charlie and I went for a walk to the playground, where he went down and up the slide 20-something times; ate homemade spring rolls for dinner; said “giff Mommy phone!” with a smile and then “Daddy talk phone!”; showered; jumped on the guest futon as I put on the sheets and blankets in preparation for my parents’ visit; climbed into his own bed; fell asleep.

97 minutes can change the world.

Comments
17 Responses to “1 hour, 37 minutes (#287)”
  1. squaregirl says:

    Wow! An hour and 37 minute bike ride? I’m impressed! Way to go Charlie! I see that he has inheritied his parents stamina and work ethic 🙂

    Sitting on the floor for and arts and crafts session is very familiar scenario for me…in fact now that I think about it, I can’t quite remember the last time I sat on actual furniture.

  2. Bronwyn G says:

    These children do not feel pain?

    Since when?

    I submit to you that autistic pain can be measured on the higher ends of the chili scale.

    And the only reason the doctor would have for saying that is the opoid excess theory – which is a theory only.

  3. Camille says:

    Hi Kristina.

    You have a lovely son. You seem to have a very nice family all around.

    I still detest ABA. 🙂 I used to taunt the ABA therapists who would drop in on the aut-advo board to bug us or to learn that it was time for them to “retool” that ABA was going out of style.

    I still think so. The people who teach Charlie may be wonderful. I think Interverbal is a really great guy, he doesn’t seem to be too hurt by my feelings about ABA. I’ve been quite cranky with him in the past, too. Jannalou has seen me get cranky about ABA and she was doing it herself at the time. She used to have this horrible long signature that advertised she was doing ABA and it was there every time she posted to aut-advo. Jannalou (her experiences) has given me some of the best reasons to hate ABA. Lots of us resented Jannalou on the aut advo board, but Ballastexistenz stood up for her. Amazing.

    I still think that there is something inherently wrong with true ABA. It works, yes, it teaches kids some things. I don’t think it’s the best way to teach and I hate it’s history. I hate the unidirectional nature of it. I hate the button pushing nature of it. I hate the animal training nature of it. I despise the man Lovaas. “Floortime” “DIR” has loads of problems, too, but I can’t find a reason to despise it like I can for ABA.

    What about Vygotsky and scaffolding?

  4. KC'sMommy says:

    I just read Autism Diva’s post about ABA/Lovaas and was in tears. You see my son is new to ABA and I have seen wonderful progress since we have started:) He is learning to use the bathroom, point and sit properly in a chair. There are many more things that he is learning with his new therapist and for once in our lives I see less crying and a look of pride beaming from his face when we clap and hug/tickle him for doing such a wonderful job. He is learning and I am so proud of him, mostly I am so thankful to have ABA in our lives because I can now see that my son who has Autism can be taught using ABA. His teacher reports that he is very happy these days and seems to be more “into” what he is learning at school. My son who is severely Autistic and considered “Lower Functioning” (I hate that term) and who does headbang and pulls hair is learning through ABA and I am learning how to teach my son best.
    I do realize that in the past the things that happened to the children were indeed a tragedy.
    I do believe that things have changed and in my heart I do believe my son has is getting the very best help that there is out there.
    I respect everyones choices that they make for their children and I believe that we all want what’s best for our children’s lives, it may be ABA for some parents or Floortime etc. As parents we have to find what teaching method is going to work best for our kiddos. Every child is different of course . What may work for one child may not work for another. We must work together and support each other for our children sake:)

  5. squaregirl says:

    “Preachers err by tryng to talk people into belief; better they reveal the radiance of their own discovery”

    Joseph Campbell

    Thanks Kristina for teaching us all through the radaince of your own discovery!

  6. Amy S says:

    Hi Kristina-
    I have been reading your comments on AutismDiva’s blog for a while, an I have to say that it is refreshing and delightful to read about your son Charlie.
    My own son is 4 and a half, and loves to ride his bike, but in the house! We are lucky enough to have a big floor plan with a “circle” that he races around for hours at a time. Still has training wheels, but I aim to take them off soon.
    I’d like to know how you taught Charlie to stop when he first learned how to ride his bike. We are looking forward to taking my son on rides outside, but he still is quite inconsistent with his stopping when we tell him to. I’ve been trying to do this inside, so that I don’t have to worry about him going out into the street. He understands the danger of the street while on foot, but I don’t think he would have the self-control to stop on a bike.
    Again, I love reading your comments and immensely enjoy your posts about Charlie. I adore my son–he is my last baby out of five–so different from the others in some ways, yet similar in others. He has a unique and wonderful perspective on the world that has taught me so much in his short time here.
    But how can I get him to brake when he needs to?! Any ideas would be MOST appreciated.
    Thanks, I know you are busy.

  7. It is easy to hate ABA. As a humanist, I am philosophically inclined to find ABA and the work of B.F. Skinner and his descendants opposed to my world view. —- I posted on this awhile ago,

    http://www.kristinachew.com/autism/2006/02/the_art_and_sci.html
    The rift between theory and praxis is pervasive in all forms of knowledge and certainly throughout all academic disciplines. It is one thing to study various types of literary theory (Marxist, feminist, psychoanalytic, post-colonial, deconstructive, etc.) and another to “impose” them onto a piece of literature (such as a Sappho poem).

    As you well know, theories of the aetiology and the treatment of autism abound. And the hard task for all of us parents is how to discern what is best for our child—and to be willing to choose the theory or treatment that we have determined to be what our child needs, even if certain tenets of that theory or treatment are counter are own philosophical beliefs. Thus, the philosophical-theoretical basis of Floortime or RDI might seem more appealing to a parent’s views, rather than an approach that follows behavioral principles. It is dangerous to make judgements based on general principles and from one’s philophophical beliefs, without and before observing what a child is like.

    I very much value the work of Vygotsky and other educational philosophers and thinkers. If their ideas have been developed in accordance with the development of “children in general,” it is not so clear that how these might address the learning of a child like Charlie, autistic and neurodiverse.

    The best test of a theory or treatment is what we see in our child, before our eyes, beyond and without any philosophy.

    PS. Amy, I will be writing about how Charlie learned how to use the brakes tonight. Thank _you_.

  8. Very few people can see ‘without philosophy’.

  9. Indeed, we are all in Plato’s cave!

  10. Julie says:

    Why does everyone bash on parents of newly-diagnosed autistic children who aren’t 100% gung-ho excited about their child’s new diagnosis? I’m sorry, but until the world is fully available and open to autistic people without making life any more difficult for them than for others, most parents are still going to go through a phase of, dare I say it, “mourning,” not to mention the difficulties of trying to understand a child who is very different from any other sort of human being than they are used to. Is that so terrible? The key is to help these people understand what autistic children and adults can be CAPABLE OF in life, so that the parents can feel good and they can help their kids feel successful. Hell, isn’t parenting all about combating tough times and learning your kids?

  11. Anne says:

    Don’t cry, KC’s Mommy. We are still far from knowing the best way to educate our kids. The best programs don’t exist yet. Having autistic people say the truth as they see it can only help us. Since we don’t have the luxury of waiting, and we have to do *something*, there is nothing wrong with applying some critical thinking along the way and making adjustments as we go.

    Kristina, the idea that we should do what is best for our children regardless of whether those things comport with our world view is, in itself, a philosophical belief. Isn’t it?

  12. Julie, that is parenting. We navigate through the tough times and we make mistakes, all in the name of love. We have to be willing and ready to make the mistakes–we just cannot know what our child will and CAN be.

    Anne, yes, “the idea that we should do what is best for our children regardless of whether those things comport with our world view is” is a “philosophical belief.” As Terry Eagleton (Against Ideology) writes, having no ideology is an ideology. But ideas (pace, William Carlos William) can get in the way of things.

  13. Anne says:

    Hi, Julie. It does seem like there is a period of mourning for many parents. I don’t think that this fact, as difficult as it is, requires others not to pursue the social change that will benefit our kids.

    It seems to me that some parents who are in this mourning period have a hard time hearing about what autistic people can do, and an even harder time seeing them do it. I would think that parents would be hopeful when they meet autistic self-advocates, but often they are not. “My child isn’t like you!” they say. “And anyway, what about my feelings?”

    Raising an autistic child can be a confusing experience at times, but that doesn’t make it bad.

    One of the hard things is understanding that your child is vulnerable in more ways than most other children, and knowing that, the less odd he is, the better chance he has of avoiding some of the stuff that will be dished out. And how you deal with that is where the philosophy comes in.

  14. Thanks, Anne–

    And I might add, where it might be time for us to look closely at our philosophy, and be open to change, however much I (as a parent) might not wish to.

  15. Amy S says:

    I feel like I have had to learn new my parenting skills specifically for my youngest child. We ‘mourned’ for a bit after his diagnosis, but that was two long years ago. So much has changed for us in those two years…
    We have all learned so much from my son that we have become more tolerant and accepting of just about everything. He has a great sense of humor developing and he cracks us up daily!
    Parenthood is ALL about adapting, tweaking your methods until you get it just about right, and then they (kids) go and change it all over again. This has been the case with ALL my children, not just this last one. He’s not so very different at the end of the day, and nothing we can’t handle.

  16. Phil Schwarz says:

    Jim Sinclair’s essay “Don’t Mourn For Us” (http://www.ani.ac/dont_mourn.html), which came out in 1993, the year before Jeremy was diagnosed, was one of the really formative influences on my response to autism. More than 12 years hence, it is still a very worthwhile read. Jim puts his finger on the nature of the loss that many parents need to identify and mourn, and then move on beyond. (It can be argued, perhaps, that it is easier for those of us with less strongly-defined expectations for what childhood and parenting should be — for instance, many of us parents who are ourselves somewhere on the spectrum — to mourn and then move beyond, with less vulnerability to the recurring triggers that precipitate further mourning. But I think Jim’s ideas are still very valid even if they need to be applied in several “wash-rinse-repeat” iterations over the course of a developing childhood.)

  17. Phil Schwarz says:

    Arggh — the blog software here doesn’t know how not to include a close-parenthesis after a URL in the URL itself…

    Here’s the URL to Jim Sinclair’s “Don’t Mourn For Us” in a form that should actually work when clicked:

    http://www.ani.ac/dont_mourn.html

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