Taking the Scenic Route

Saturday September 22, 2007

22nd September 2007

Saturday September 22, 2007

posted in Uncategorized |

Yes, I watched it.  I was rolling my eyes within minutes, but I watched the whole thing.

There were good things about it.  I appreciated what she said about babysitting being such a good help, and how people around you don’t know how to react (they don’t rally around like they do with other diagnosis, largely because nobody understands what it is).  I could identify with how hard it is in the beginning, how overwhelming, and how different the journey is than the one you thought you were getting into.  Also good:  that we should take another look at the vaccine schedule, and that one size doesn’t fit all.  I also agreed that doctors need to listen to mothers more, rather than dismissing our instincts.  We are the experts on our children.  No amount of med school can change that.

I was not thrilled with several aspects.  First, it’s Jenny McCarthy.  She isn’t exactly the most credible “autism expert” out there.  How much do I really want to listen to somebody so dumb they cut their hair in a style that has to be pushed out of their face twice a sentence.  (made my face itch watching her).    Second, she offered very little by way of evidence. There was only a short video of “after”, with no “before”.  You just have to take her word for it that he is “healed”, even though he still has traits that come up now and again, so they have to keep squashing that down.  ( a cringe worthy statement ).

The main problem I had was the big picture.  I find it increasingly difficult to listen the the culture of “cure”.  I find it distasteful when she describes her son as “trapped” and putting herself in the role of martyr heroine that is going to “free him, brick by brick”.  It seemed really self-serving.  It also furthers the culture of “cure at all costs” and leaves people venerable to feeling guilty if they don’t have the same “success” and accusations of not doing enough.  It sets up a culture that makes people start blaming the parents if their child is not transformed to typical.  There is a big disparity in outcomes of seemingly similar kids, that is independent of treatments.  Some kids respond well, some don’t.  Since the only real treatment available tends to be more successful the younger you start, there are a lot of kids out there with “autism” labels much younger so they can access treatment.  Some of these kids will end up with a higher functioning level just because that is their development curve and because the labels were attached much younger than they would have been even 10 years ago. 

I think seeing people who have practically limitless resources spouting such a guilt inducing treatment plan is almost cruel.  Most of us can’t afford the level of treatments her son had, and yet we are held to the same standard, or worse, accused of being selfish or that we never should have had kids because “we can’t afford them”.  Who the heck expects to spend $70K/year in therapy (conservative estimate…we are at about that much a year with only about 3 hrs a week…but much of it is paid by financial aid) in addition to the normal cost of raising a child.  Who expects to spend several thousand a month so they can follow the diet, and take the supplements.  That is more than double of what we make in a year. 

I wasn’t sure how to respond to Holly’s statement on changing the vernacular from “autistic person” to “person with autism”.  It makes me really uncomfortable to say “person with autism” when many of the people actually affected by this difference prefer to be called “autistics”.  I still struggle figuring out how to handle the semantics of how to talk about this, which is sort of ironic in and of itself.

I guess, all in all, I don’t understand what people are trying to “recover” from.  It would be like asking me to “recover” from blue eyes, or a preference for Birkis, or being a natural night owl.  All of these are inborn, or stem from the personality I was born with.  They aren’t separate from me.  You can put me in high heels, but it isn’t going to make me comfortable wearing them, but I can do it if I have to if that is what it takes to gain your approval.  Hmmm….maybe I can recover from “birki-ness”. 

 

***edited to add one more thought***

What really dissapoints me the most is that we keep seeing only the extremes of autism in the media.  I guess it is to be expected simply because it is a more interesting story, but it isn’t the reality of most families affected.  Most of us deal with someplace in between.  I would like to hear more about the austistic spectrum.  About the variences.  I know when I saw Autism Every Day, it did not help.  One one level, it totally freaked me out, and on another, It created a plausible deniablity because I didn’t relate to a lot of it.  Zane’s issues are not that extreme.  If anything, it further delayed my acceptance, and his diagnosis, because it gave me a reason to doubt what I was hearing.  Compared to those kids, Zane just seemed quirky.  On the other end, he doesn’t really look like the “recovered” kids either.  The majority of cases are in the middle someplace, and even if you have extreme moments (which we do), most of life is not like that.  There is a normalcy to it.  Why do they not show that?  I think it would go a lot further to help with awareness and acceptance if people realized that it isn’t scary.  I know I am a thousand percent more comfortable with the more severe end of the spectrum now that I am used to the middle of it.  I suspect that I am not alone in that.  If you can find a way to relate, it only expands your ability to relate to more.  ***end of edit***

 

On a similar note (and part of why it took me a while to respond)…

We had our appointment with the Developmental Pediatrician on Friday.  She is the only one in the State of Kansas, except for KC area, which is served by the Children’s Hospital in MO.  We talked to her about the gluten/casein diet.  Zane had been tested for food allergies and Celiacs and some other things along those lines (all of which showed he didn’t have those issues) and that, combined with the cost, combined with the fact he would need to be under strict medical care because he is already on the skinny side, left us struggling with whether or not we should attempt the diet.  We really, really can’t afford it.  My instincts aren’t screaming at me that we need this and it would devastate our finances.  But, we needed to at least explore the option.  She said that she had several patients who had done it, with no ill effect.  However, none of the gains were miraculous, and there is no way to know if the gains would have been made without the diet.  We had seen some of the exact same type of gains over the last year and did not have the diet.  Some gains are just due to maturity, and they look like miracles to us in the thick of it (I didn’t think he would EVER sleep more than 3-4 hours straight…that, in and of it self probably has made the biggest impact on our lives).  Basically, we left feeling like it wasn’t worth us wracking ourselves with guilt.

There was also a looooong discussion about homeschooling.  Unlike regular peds, whom I think have no business nosing around in our parenting, a developmental ped needs all aspects of her patient’s lives to really get a good feel on what is going on with them.  (especially when they aren’t able to speak for themselves).  So, I expected to be questioned on this issue, and I was not disappointed.  In the end, she agreed with us.  Zane is a really unusual case, and the mixture of his autistic traits mixed with the high intelligence (he tested much higher than others were expecting him to), there isn’t a great placement for him…there would only be ‘the best we can do’.  Because of the resources dh and I have, we create a better placement for him at home than the public school can right now.  This was a very, very big deal.  In the state of Kansas, attendance isn’t compulsory until 7 years old, UNLESS there is a handicap.  That is part of why I wanted to stop the IEP before an official recommendation was made, because if we said no, there was always a possibility, however slight, that when we said no, they could come after us for educational neglect.  It wasn’t likely, but it was possible. 

 

And finally, some readings that have sat here, waiting for another “autism entry”.  lol.

Autism’s parent trap: When false hope can be fatal

Why I dislike “person first” language

Toward a Behavior of Reciprocity a journal article on how the behaviors of the people interacting with the autistic person makes a big difference in how well the autistic person is able to communicate.

 

This entry was posted on Saturday, September 22nd, 2007 at 11:03 PM and is filed under Uncategorized. Both comments and pings are currently closed.

There are currently 8 responses to “Saturday September 22, 2007”

  1. 1 On September 23rd, 2007, MommyofTomandElandJo said:
       

    You should write for a living my dear.  I enjoyed this post.   I too watched the Oprah episode.  I thought that it had some good points, but, mostly sat in disbelief. I am glad that your developmental pediatrician visit went well. I have been reading your blog for a while and am really proud of you and Zane for all of the progress he has made/is making.  I completely understand what you are saying about what the public school system has to offer. 

    That is also funny what you said about her hair.  I thought the same thing.  I kept thinking if my hair had to be wiped out of my face that often I would chop it off myself.

     
  2. 2 On September 23rd, 2007, ilovebakedgoods said:
       

    Thanks for the input. Very well-written! I can’t ever seem to formulate my thoughts quite so eloquently as you.

    I agree with your edit. Why doesn’t the media focus on all ends of the spectrum?? I have a hard time watching a lot of autism specials because I simply don’t relate to the guests who are usually on. My son was diagnosed with “borderline/mild” autism. I’m not even sure what that means. He has some traits, but not enough to just say “mild autism”? He scored right on the border when he was 2.5 on whatever that test is (CAPS? I forget now). As he gets older, the traits and “symptoms” sort of fade or evolve. He used to ONLY line his cars up to play with them but now he actually vroom-vrooms them, in addition to lining them up. He creates patterns all the time out of Magnetix, yet he also creates designs out of the booklet that comes with them. His typical traits seem more dominant so it’s harder for people to see the autistic side.

    I think you should send this to Oprah’s people. It’s pretty much an editorial review of that episode, and your edit poses a very legitimate point.

     
  3. 3 On September 23rd, 2007, SarahAriella said:
       

    The debate on using the terms “autistic” to “person with autism” seems to be older than my son’s diagnosis. Even those on the spectrum can’t agree so I suppose it is up to the individual or the family. Somehow, I don’t think my son cares either way at this point in his life. I tried to watch that episode of Oprah. I even set my DVR to record it while I was at school. In the end, I couldn’t relate to the episode enough to get past the first 20 minutes. I am not rich. I was never sitting in a photo shoot on the morning of a doctor’s appointment and I don’t have endless resources. I know Oprah preaches to the well to do modern woman, but it sure would be nice if she would remember that we aren’t all bottomless pits of money and do a show on how the lower middle class copes with autism.

     
  4. 4 On September 23rd, 2007, auntcathys5 said:
       

    Great post.  I’m learning so much from you.

     
  5. 5 On September 23rd, 2007, freeformlife said:
       

    That’s interesting, about the “person first” langauge. I was a sped teacher, and I’ve always been in favor of it, because I thought that it was important to see people as individuals first. On the other hand, maybe that holds more true for things that are not such as an integral part of a person’s self, like “person with diabetes” rather than “diabetic”. I mean, no one suggests that we say “person with two X chromosomes” rather than “woman”…

     
  6. 6 On October 1st, 2007, ilovebakedgoods said:
       

    I still haven’t seen the episode of Oprah, but I just saw Jenny McCarthy on some entertainment show and she kept babbling about her son being “recovered”. I really resent her using that phrase to describe the progress her son has made. My son has progressed in the 4 years since his diagnosis but I would never refer to him as “recovered”. It is there ALWAYS, no matter how much you try to ’squash’ the traits. She’s sending such a bad message to moms without the resources she has! Intensive therapy can help, but it doesn’t work the same for every person with autism.

     
  7. 7 On October 1st, 2007, ilovebakedgoods said:
       

    Also, why not focus on HELPING them, rather than “saving” them?? This is why I couldn’t watch that Oprah episode. I knew it’d rile me up.

     
  8. 8 On January 13th, 2008, thisistam said:
       

    Wow, this post really blew me away! I’m a developmental therapist in early intervention and I wish all parents could have such a grounded and accepting perspective. I’m sure its been a long road to get to the point you are now but I really admire your strength and your perspective on loving your son for who he is, not what you try to make him. I too cringe everytime I hear the word “cure” applied to ASD.  Also, thanks for the perspective on ‘people first languange’…that’s really interesting; I’d never thought of it like that before. It reminded me of the term “neuro-typical” that autistics (that feels so wrong!) use to refer to non-autistic people. Anyway, stay strong! It sounds like you’re doing really great things for your son!

     
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