The Story on Tuesday

Charlie at the beach on Sunday
No, we did not play hookie from school and work and go to the beach on Tuesday!

We went to the dentist: Charlie had an 8am appointment. (I just couldn't resist putting up another beach photo–indeed, a sweatshirt photo.)

Charlie did really good (and the dentist is a champ himself); I'll have more to say about this tomorrow. I did bring the iPod touch and did use the timer, and it helped.

I've posted about the (take a deep breath; this particular topic has been note to evoke a heated comment stream) question of a cure for autism over at Care2.com, with some discussion of the experimental drug Novartis reported on as having caused 'substantial improvements in the behaviors associated with retardation and autism in people with fragile X syndrome.' And, also mention of the five new appointees to the Interagency Autism Coordinating Committee, along with some reference to topics like functioning 'levels' (those 'hfa' and 'lfa' terms) and neurodiversity. Yes, all subjects known to evoke fighting words in the autism community.

But the real story of yesterday (Tuesday) is, once again:

Charlie did good at the dentist.

And did we walk.

Advertisements
Comments
11 Responses to “The Story on Tuesday”
  1. Regina says:

    “Charlie did good at the dentist.”
    And that’s the moneymaker – Excellent! I look forward to the expanded version.
    Off to check out the controversy at care2.com (smile), although I note that the Fragile X drug press report, although scientifically very interesting and potentially with promise,is very preliminary to the point where the Novartis folks claimed to have reservations about releasing the information, and that it’s subject to the usual caveats about more and expanded clinical trials before making firm statements of clinical efficacy.
    Take care.

  2. Regina says:

    Y’know, having looked at that, the term I might use, might – depending on reality v. potential hypotheticals, is treatment.
    I have certain conditions for which I take medications – I’m still me, but with less of the ailments which prompted me to seek treatment in the first place. Just to go out on a limb, I find it somewhat interesting that it is the psychological realm that brings out the most debate on whether treatment intrinsically leads to “loss” of the “real” person. Depends on whether you are looking at some ideation of an optimum that might not exist, period, or improving function and capacity of the person within reasonable boundaries and taking into account whether that person sees it as an improvement of his or her life from his or her view, as opposed to some political “worldview” (and this is meant genericly).Then there is the side-effect aspect to reckon with (and that’s something I feel does not get quite as much consideration as it could).
    YMMV.

  3. Jemaleddin says:

    How wonderful! Jared has had all of his serious dental work done in a hospital under sedation, so I can only imagine how nice this must be! Congrats!
    As for your other article: it’s odd that people want to call every treatment for typical autistic behaviors a cure. We don’t think of the pill as a cure for fertility. We don’t think of Prozac as a cure for depression. And we don’t think of Ritalin as a cure for ADHD.
    If the new Novartis drug helps manage certain behaviors, that’s great news for those that benefit from the treatment, but they aren’t cured of anything.

  4. Jen says:

    Yayyy for a good dentist visit!

  5. farmwifetwo says:

    I find that those that lobby against a “cure” think that a “cure” means a brain transplant. You alluded to this in your Care 2 post and seem to believe it as well.
    I have one that will be “cured”. I’m hoping by Gr 8 to lose the IEP… hoping. A child that is as “normal” as his peers, that is being taught social and behavioural skills via Ont PPM 140, that has a fusion (keyboard/computer) and OT to deal with the anxiety/claustrophobia.
    Cure means independance. It’s not some “way of being”. Every single person is different than every one else. To claim you are “special” is a crock. If you don’t require services, you don’t need a dx to join a cutsie club.
    Would I “cure” the little one…. Yes, tomorrow. There is no way you can tell me it’s “ok” that he cannot go to Karate with his bro. That it’s “ok” for him to sit there and cry when he cannot participate. He cannot b/c of a lack of supports and inability to follow the directions. He’s been in Level 2 at the pool for a YEAR and hopefully will finally go to Level 3 next fall. A YEAR!!!!! He can barely speak, can’t figure out how to make friends… And is going to live in care for the majority of his life…..
    But… not curing him… not allowing him the opportunity to make his own choices, to live his own life, to allow him friends, family, sex for that matter….
    According to the “anti-cure” crowd… he should just “get over” it.
    If a drug allows him to learn, allows him to talk, allows him to make his own choices, allows him to learn to socialize…. We’re there.

  6. Barbara says:

    Wow. I had similar thoughts, but cannot say it better than Regina and Jemaleddin.
    What they said. 😉

  7. Louise says:

    So glad for Charlie’s dental appointment! He really is mastering the skills that will keep him in good health and stay safe in this blooming, confusing world.
    Is a person who suffers from depression and takes a drug “cured”? Are they changed into someone they’re not? What about one who takes insulin for diabetes, or thyroid replacement hormone?
    Most drugs are not “cures” – not even aspirin or quinine. They alleviate symptoms. The only true cures I can imagine are surgeries for repairing faulty vascular systems, or congenital malformations. Even casting a broken bone leaves its trace in the body.
    We are the sum of all the events that have occurred to us, both the physical and the mental. Even if Charlie’s autism could be magicallt wiped away tomorrow, he would still be Charlie.
    There is no “normal” – there are only coping skills. Sometimes a drug helps create environment that gives us more power over our situations.
    If this new drug helps a few people achieve that, more power to it. The world is full of pain and distress. Almost every human strives to alleviate that.
    Hooray for Charlie!

  8. Synesthesia says:

    Frustrating. They only studied a handful of people. I hate trickle down science in that Men are Still from Mars and Women are Still From Venus sense of the word. One study, based on a handful of people and they go and assume, oh, look, there will be a cure.
    What really is needed more is actually understanding autism better. People understanding autistic behaviour instead of trying to wipe it out.Why can’t more folks learn how to socialise with people on the spectrum? And why do folks make such a big deal out of normality and socialising? Which I think is overrated. This could be because I like socializing in small doses and would rather sink into some serious music.
    Though I do have trouble meeting new people. I’m kind of torn between a love of solitude and a desire to collect more people, but I have no real pack instincts.
    It’s a good and a bad thing.
    I don’t know why some autistic behaviours are considered bad and worthy of a cure. Many times there is a reason for them.
    Also a person could be “high functioning” and seem like they are “normal” but could still require services and be refused
    Understanding is needed more than a magic pill, I think.

  9. I can’t wait to hear more about the dentist! Jack and I just went. Third try. Still no success.

  10. God Bless you guys on your journey..

  11. autismvox says:

    @Jemaleddin,
    I was thrilled this visit went so well — but we are going to have to have more done in the hospital with Charlie under sedation; am hopeful we can just manage to keep Charlie going to the dentist’s office for regular check-ups. He’s almost as tall as the dentist now……
    @Regina and Jen and Louise and Brenda,
    Dentist success = something to crow about, what can one say!
    We figured surgery was inevitable. I would like for Charlie’s teeth to be x-rayed to rule out cavities and all that—I suspect it’ll be much less stressful, in the long run. We’ll keep working on Charlie being in the dentist office for routine check-ups; helps that the dentist seems really determined to do what he can, and to accommodate.
    Now for the dance with the insurance company!

Leave a Reply

Please log in using one of these methods to post your comment:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

  • What’s all this about?

%d bloggers like this: