Comments on: And when we were wrong, we promptly admitted it

By: 12 Steps- The road to recovery at the health and wellness channel

12 Steps- The road to recovery at the health and wellness channel — Mon, 29 Sep 2008 00:27:08 +0000

[...] from AutismVox focuses on Step 10, find that the call to self-scrutiny and to reexamination of oneself has always been important to [...]

By: Monday in Manhattan

Monday in Manhattan — Tue, 23 Sep 2008 17:15:16 +0000

[...] from his lunchbox before he had his afterschool snack, as he informed me. I felt foolish but promptly admitted it and Jim called and I said that we’d go into New York for a visit—-not exactly what we [...]

By: Jen

Jen — Tue, 23 Sep 2008 10:12:02 +0000

We were incredibly lucky in that during the first visit after our diagnosis our specialist sat my husband and I down and talked pretty bluntly to us about quack “cures” and what to look out for. I would love to see that kind of talk become best practice with diagnosticians. It also helped us considerably that most of our friends at the time were scientists, so they instilled a respect for peer-reviewed studies in us that held us back from going off the boards too badly. We definitely tried some things that in retrospective were pretty stupid, but I pretty much chalk that up to the initial grieving/panic/anger stage that people tend to go through, and I always refused to do anything physical to the kids (meds, diets etc). I’ve definitely made a lot of mistakes though- no question about it.

One of the things that I always found very helpful was having outside input on whether something was working or not- while I’ve definitely had qualms about it, there have been times when we’ve tried medications on one child and not told their teachers, workers, etc., so that we could get an unbiased opinion on whether something was working. I know that whenever we tried something new I was always desperate to believe that it was working, so even in my daily diaries and worksheets etc. I’d always tend to put a better “spin” on things, even if it didn’t really exist. Sometimes having someone who didn’t know that a new med was being tried could give us a much more objective opinion. I’m not sure that it’s the right way to go, as I’m a huge believer in our team working together, but it probably did save me from some stupid beliefs in the past.

By: Ivy

Ivy — Tue, 23 Sep 2008 00:39:52 +0000

Kristina, this post touched me deeply. I am, three years after my son’s diagnosis, realizing that many of the things we did were not ‘musts’, but certainly felt like it a the time, and it was an incredibly expensive lesson to learn, both financially and emotionally. In our case, we were told to ‘hurry, hurry, hurry’: try different therapies and approaches, because the ‘window of opportunity’ would close soon, so we did. We wanted the best for our son, we felt it was our duty. We did traditional therapies, and we also did alternative therapies that made ’sense’ to us. Frankly, even back then we realized a lot of things not only didn’t sound ‘right’ but were dangerous. We steered clear of that. And even so, we ended up spending more money than we could afford, and are now struggling with debt, and the emotional aftermath. We realized that some of those people that were so interested in our son, didn’t anymore as soon as the money ran out. Talk about a sobering experience. Now I focus more on quality of life for my son, and quality family life for all of us. So in the midst of realization and dissapointment, at least we learned valuable lessons. Ironically enough I still encounter people that now think I’m not doing ‘enough’ for my son. But now that I have time to spend more time with my children instead of being in waiting rooms 60% of the time and on the road for the other 40, it is my kids and my husband who are reaping the benefits. The road to recovery might be hard, but there is no looking back for us.

By: Maureen

Maureen — Tue, 23 Sep 2008 00:24:15 +0000

With regard to the evidenced and controversial treatments, New York State’s early intervention program has Clinical Practice Guidelines (it also comes as a CD) on interventions for Autism (they also have similar book series’ on communication disorders, motor disorders, and Down syndrome). The guidelines are broken up into three separate “books” one is the Technical Report which has the full texts of all the studies and evidence reviews, The second is the Report of Recommendations (full text of recommendations, summaries of supporting evidence) and finally the Quick Reference Guide which is just the summaries. Please note that Now the guidelines were researched a while back and it was a very expensive undertaking (not to mention the time it takes to perform the research and get them through a state health department the size of NY, but the guidelines at least lay out treatments (those in practice at the time of the research) and the available evidence supporting them. New Yorkers can get the guidelines for free, just go to the state’s website, non-New Yorkers can purchase the clinical practice guidelines–their research has been used by Autism Speaks to support the insurance mandates for Autism.

By: Kristina Chew, PhD

Kristina Chew, PhD — Mon, 22 Sep 2008 19:30:49 +0000

That would be something very helpful for any parents to have—–one of the publications that the AAP put out last year had a section like that. Certainly we didn’t encounter any such information when Charlie was being diagnosed.

By: Regan

Regan — Mon, 22 Sep 2008 19:11:23 +0000

My reflection is that I owe my developmental pediatrician for giving us a paper on evidenced and controversial treatments the day we walked out of the evaluation. We did a little further research but it helped keep us centered and helped us to stay aware of the odds. I can’t say at this point that I regret that knowledge.

By: Kristina Chew, PhD

Kristina Chew, PhD — Mon, 22 Sep 2008 19:07:21 +0000

Trying to live up to both steps right now.

By: Regan

Regan — Mon, 22 Sep 2008 18:59:44 +0000

Step 4: Made a searching and fearless moral inventory of ourselves
Step 10: Continued to take personal inventory and when we were wrong promptly admitted it.

It’s the facing of personal bogeymen, seeking to keep a clear eye and acceptance in the interest of achieving the serenity and personal strength to avoid continuing addiction.

By: Storkdok

Storkdok — Mon, 22 Sep 2008 17:26:09 +0000

I understand completely! I look back to some early things I said/believed, and am embarrassed at how totally ignorant I was. The most embarrassing thing I think I said was in an early IFSP meeting when he was probably 2.5 or 3 years old. I told them my goal was “recovery to be indistinguishable from NTs”. OMGosh! I feel like I am at a 12 step meeting! lol

Well, the important thing is that we keep a sense of humor about it all, don’t stress about the past and learn from it, enjoy the moment, and hope for the future, endeavor to make this a better world for our kids.

Slightly off topic, I am 2/3rds through Paul Offit’s book, and thoroughly enjoying putting the pieces into full perspective with the history of the events in his book. Talk about the need for a 12 step program…