Friday, July 28, 2006

Fun With Feedback

Not that it's really feedback, but today I found myself with an hour to kill. I'm still pretty sore from my first yoga class in 2 years, so I thought I'd take a look at hiddenrecovery's mentions and links. Some of the comments I've seen based on links from my stats page (it tells you the website someone was at before they came to yours). The Autism Blogging world is amazing!

Not surprisingly, the links are representative to the feedback I get when people write to me directly. Specifically, I can count on one hand the negative comments I've received by email. The majority of feedback comes by questions or thank yous. Thank you's for convincing them to look into intensive intervention, for the viable treatment options I've explained, for how to find services. I hear from many people around the world about how, after conversing with me, they got their child a program or supports that are effective and meaningful to their individual child. They report their child is happier and is "learning how to learn". That a year later, their child has enough skills to go to school, to play with a sibling. Stuff like that.

Am I tooting my own horn? It may sound like that, but I'm not. I'm sharing my positive response in order to demonstrate a point - the knowledge that Recovery exists is often the fuel for action in parents. News for me! Fuel to a parent to successfully get through the lows of their day, to advocate productively. My intention was to be referred to as an informational site. I didn't expect to be refered to as an "inspirational" site, but this is what it's become, this is how I'm often linked. Weird!

We all have a fuel, don't we? Hate, God, Injustice, Love, Information, Anger. Those are common fuels I've seen. Denial is my favorite. Like "promises" in advertising on television, you can believe what you want to believe to make it work for you.

Indeed, there is a minority of people that take offense to Recovery. There will always be parents that get false hope from Recovery stories - and blame those stories for something in their life. Perhaps a choice they made. The point being that indeed these parents are in the MINORITY. People read into them what they WANT to read into them, that fits with their emotional state, with what is going on with them. ex: I can tell a parent - "don't think about Recovery, call that ABA program, try the diet" over and over again. I'll get no response but more emails over and over again containing recovery questions.

I hear parents say they read a recovery story, and went on to try ABA or the diet, or chelation, or RDI, as an example. When it wasn't the magic bullet, they turn around and blame the account they read. They shout "See? ABA is total crap. Therapy X only made minimal difference to my son. All that money was wasted." My questions are always the same. What about that minimal change? Why isn't that worth it? What if you never tried X, and it COULD have made a big change? What if you had the right people to implement X? What then could have happened? Why not try everything you can to help your child, regardless of the outcome? It'll be quite a while till we know why certain things work or don't work for various subsets of children, if at all.

In college, I believed my ex-boyfriend really loved me when he cheated on me. I believed it because I HAD to, to get through my finals, until I had time to process it.

It's funny, inspiration. I was never a person that read other parent's accounts. I only read clinical, therapy related materials. Everyone has a fuel to keep them going, and mine was information. Information information information! Maybe the underlying theme was CONTROL for me. For other's, it's the mystical place where all is perfect, where it all "goes away" and this "bad dream" is just a dream. Other's drink a bottle of wine every night. Others take it out on their SPED directors (this was me too). Anger worked for me, it made me very productive. And it's worked in helping me help others, if that makes sense.

As we all know, we find support in others online, and feedback from other parents is often the best source, parent-to-parent. I talk to many parents - most of them bounce therapy ideas off of me. Others, want to know about recovery and if it's possible for them. I tell them to focus on maximizing the potential of their child, not so much as this "thing" going away. Giving your child choices, opportunities, and the best blend of therapy for their unique child. I talk about acceptance, denial, intensive intervention, the gamet.

For the record, my goal once Leo was diagnosed was NEVER recovery. I didn't know about it until years later. It was the happiness I've discussed on http://hiddenrecovery.com . I didn't know anything about recovery until 2 1/2 years after my son was diagnosed. The first mother I spoke to with a recovered child that was at that time 9 years old. I thought she had lost her mind. I never read Maurice or Serrousi to this day. I have the books, but it's just not my thing. They are my peeps, I think they are fantastic, but their stories weren't my interest. My fuel was my desire to make Leo happy. God, he a miserable little boy. I wanted to give him choices in life. My desire as a parent, to "make it all better", that gutteral (sp, help Anon) instinct we all feel when we hear a child cry.

But as time went by, I realized she wasn't crazy, and that there were many more that I describe on my main site. I didn't really occupy any of my thoughts on anything other than the present - what did Leo need TODAY? And be damned if he didn't get it. If he had one bad day out of a whole week, it put me out for days. I was all consumed with his overall welfare. Not until we were discussing a fading plan during one of our last clinics, did I realize ending therapy was a reality. I couldn't believe it. And the aftermath? That' s a whole other story I describe on http://hiddenrecovery.com

Indeed, life wouldn't be as interesting nor would I learn as much if if weren't for the disgruntled fans. I have a "fan" that has posted many times by the name of Anonymous. Anonymous even bashed my anonymity! The irony, I know. In a nutshell, this person(s) has criticized me for my spelling, my anonymity, and that I discuss the topic of recovery. I'm sure there's way more that I've missed and I'm sure there's way more about me that Anon doesn't like.

I really like Anonymous - this person is a reminder for me about what many people think, and the emotions that come up when "recovery", and the factions within the Autism community. I only wish my admirer would actually read my website. I have a whole page dedicated to Anonymity, and why we are. I don't expect everyone to "get"where I'm coming from, and I truly empathize with those that get upset by my writings.

Anon. says I call myself an expert in DTT. This is confusing, as my whole site is dedicated to NET. (Anon. had scolded my spelling of "discrete" incorrectly - I am the worst speller!) Anon. made assumptions I didn't want my son unless he was recovered. I'm not sure how Anon. extrapolated this one out of anything I've written, but I'm sure she/he has her reasons. Anon. states my Resource page should be taken as "a grain of salt". I find this interesting, as many of the books on my site are on Anonymous's approved sites she/he blogs on. At any rate, my hope for Anon is that I've at least provided an outlet for those negative emotions. I truly hope I'm helping!

4 comments:

Anonymous said...

I remember touring at a prominent ABA center in NJ and one of the guides telling us to be learly of anyone claiming to have extensive knowledge in the field of ABA if they can't even spell the word "discrete" (as in discrete trial.) She pointed out that they often saw ads placed in the newspaper by districts and people claiming to be experts who would write "expertise in ABA/"discreet" trial wanted." She said, if they can't even spell the word correctly, they probably aren't experts. I see that you use the word "discreet" (under the "Therapy Bashing" section on your website) and can not help but think that this is just not a typo.
Sorry, I have to be leary!

Ashley loves Leo said...

I'd have to agree with you about ABA and experts out there. As the popular saying goes, "there's far more bad ABA than real ABA or even good ABA out there." I also think that's smart advice to stay clear of an ad that has a mispelling.

Perhaps I've seen your word written incorrectly too many times to count? Also, I do need a good editor for my site. That is something I've been looking into - a fresh pair of eyes to help with the myriad of spelling and grammatical errors (especially tense). It's just been low on my priority list. Am I spelling grammar correctly? I'll have to look it up.

It's incredible when you type in keywords for searching, how often the incorrect spelling comes up. I've also seen it as discreat.

So here's your answer to your question - it's NOT a typo, it's my spelling skills, or lack of. I just can't remember what is the correct spelling subconciously to many words - one of them, as you've identified for me, is "discrete".

Here's the boring part - my brain works like this - when I see or here something used incorrectly, I often get confused to which one is correct. I retain and recall all versions. My executive functioning weakness I suppose.

When I read a lot, say at night, really good books, my spelling errors decrease, as well as my speaking. When I don't, especially after the birth of my children, boy my brain adjusted quickly. "If you don't use it, you loose it" as they say.

I'm always looking up simple words in the dictionary because I just can't recall which version is the right one. I often misuse "too" and "to", but not on purpose either. My brain just selects the first one it finds sometimes. So there, my detailed explanation into my aweful spelling.

When we were looking for a Labrador Retriever, I did my initial search online. I saw all sorts of Laboradors, Labradars, Labadors. So whenever I have to stop and think about how to spell my dog's breed, I have to really think about it, and most likely I have to use my dictionary. Pretty entertaining, at least for the kids.

The other piece to remember is this - Leo never had a DTT program (see, I'm too afraid to spell it out now, LOL to myself). So again, I'm not an expert in DTT. Now, if it's NET via ABA, I'm all over it!

I hope you can look beyond my obvious deficits - spelling, or otherwise. Diversity is the spice of life.

Oh, and I totally respect the Anonymity, no apologies necessary. I just thought it was ironic. I am not going to judge you for that - you obviously have your own reasons.

That's the whole point of my site, why I talk about discrimination so much - judging others, rather than accepting others do things differently, and that no one is wrong. Ah, judging, the bane of my existence. And I know bane is spelled correctly, I had Leo look it up for me!

Thanks, Anon, for keeping it real. You've definitely inspired me to change all of my DTT errors. I don't want to contribute to the problem.

Robinson Cahill said...

I can't believe that given the information that is contained on this blog and on Ashley's web site, that the biggest controversy is the spelling ability of the author and audience! Since it seems no one can spell (discrete, Learly, aweful, etc) lets focus on the good that comes out of this site. I am a parent of a recovered child and anyone would be smart to pay attention to a lot of the great advice and resources listed on this blog. I hope more people find it, read it and take it to heart (regardless of their spelling abilities!!!!).

THANK YOU

Ashley loves Leo said...

Thx RC, I'm glad you found my site helpful.