Sunday, June 24, 2007

Choices

Choices are funny things. When I was young, it seemed that choices were very black and white. Will I have chocolate or vanilla ice cream? Will I watch Scooby Doo or Superfriends? Will I play with Jonathon or Travis today? Because I was a simpler person, being a little kid, I had simpler choices.Any adult, I think, will agree with me that choices are just not so simple anymore. It seems that about 100 times per day I am in a position to make a choice, and that there are not just two options to go with. To draw an analogy, choices or 'tests' in life progress from true/false, to multiple choice, to word problems, to essay questions. I sincerely hope they don't become too much more complicated than they are now, because the next logical step in my analogy is doctoral thesis, and I frankly don't want to have to deal with any of those.For parents of children with special needs of any and all kinds (in my case, I have an autistic son), the predictable set of choices you will be faced with looks different than those of parents with "typical" kids. In our case, the set of choices we dealt with, in retrospect, followed a clear chronology, though to be sure this chronology is not true for all parents in a similar situation.Though I present our choices in X vs. Y format, this is not intended to imply there are only two choices, as I explained above.

Acceptance vs. Denial
When we received Jason's Dx, we entered uncharted, for us, territory. We frankly had no idea what to do first. We knew we wanted to help Jason in any and every possible way. We did not know how to do this. Jason at that point responded to us very little and had no working communication skills other than pulling us in the general direction of things he wanted and crying when something was wrong. We had no choice but to rely on "experts" and literature. My wife and I are not "joiners", so support groups and the like were not at the top of our list.Any and all information we gleaned at that time, though, was to be viewed in the light we cast on it. We had a choice to accept the Dx, or to deny that our son had been Dx'd correctly. I do not remember a time that we flat-out denied the fact that Jason was autistic. I do, however, remember that "curing" his autism was something we viewed as a goal. For those of us in the Western world, it is difficult to accommodate a situation that does not have a cure - that some brilliant scientist, therapist, surgeon, or inventor can put a Silver Bullet into the problem and *snap* make it disappear. So, we accepted Jason's autism and set out to help him in any way, the favored way being to find a cure.

Cure vs. Treatment
I am the Thinker, and my wife is the Doer in our family. I took my role seriously, and began to research autism. Of course, I went to the internet. I spent about 6 months looking at all recommended treatments and cures for autism. I parsed and supplied the info to my wife (and my parents, who were a huge help through all of this), who initiated the plans. One month after Jason's diagnosis, he was enrolled in an behavior modification/skill acquisition program (I describe it thusly because, though the agency used some ABA principles, it is in no way Lovaasian-ABA). We began to research support/funding available from the state. We had an appointment set up with a DAN! doctor. We had instituted treatments, and were working on finding a cure. I heard about mercury, and began to grow angry. I read about chelation, and began to grow hopeful. Jason would be saved!A little later in the process, a few weeks before meeting with a DAN! doc (after a bad experience with another one we had been referred to), I typed into Google for the first time "Autism Blog". I found Left Brain/Right Brain. As I read, I felt like I was on the verge of an epiphany. Not only, according to the author of the blog and all available links, were the proposed cures being sold not effective, they were harmful in many cases! Not only did acceptance of Jason's autism mean not denying it, but it also meant that I should accept Jason for who he is and not try to "de-autism" him! And this wasn't just one guy talking - it was a whole community. And most of them were autistic adults! Wow. I had never (knowingly) talked to an autistic adult before. It turns out, I realized, there are many, many autistic adults who would not take a cure if it was offered. This resulted in a whole new paradigm of thought. I have said before that we would have arrived at this conclusion on my own, we just reached it a lot faster with the help of the Neurodiversity community online.

Overparenting vs. Underparenting
Now that we knew a cure was not going to be found (though there were certainly plenty of people trying to sell us one), we had to decide - what is best for Jason? We settled into the following group of approaches:
Behavior Modification Therapy: As I stated above, this is not really ABA. There is some record-keeping done after sessions (not during). There is no negative reinforcement. It focuses on skill acquisition, parent-training, and communication skill development. Jason loves to do it, and his therapists have become some of our closest friends.
Hippotherapy: We take Jason weekly to ride horses at a very special place called R.E.I.N.S. Horseback riding is said to improve gross and fine motor coordination, provide an opportunity to "bond" with the horse, provide self-confidence with the skill acquisition, and numerous other benefits. To my knowledge, none of these are proven to be true. We don't care, as Jason loves it, and its a very healthy hobby to have.
SLT: Jason's speech was very slow to develop, and is still very atypical at age 5.

That's it. Jason's progress over the years is very comparable to the anecdotal stories we hear from all areas of the autism community, especially those who pursue some of the more extreme biomedical treatments. When deciding what to do to help Jason, we always think to ourselves "When Jason is an adult, will he look back and believe this was something we did TO him, or did FOR him?" This feels like a good approach. This way, we are doing everything we can to help him grow and progress (avoiding underparenting) while not reacting too strongly to his autism that we put him in situations that are unhealthy for him physically or psychologically (avoiding overparenting). By carefully listening to autistic adults, this is not all that hard to do.

"Equal" vs. "Special"
Probably our most current decision-making is based on how Jason fits in with the family, our and his friends, and general society. One way to look at this is in how he is treated and what expectations of him and others that we have - is he "equal" or "special". How we deal with various situations ranging from misbehavior to achievement is dictated by this difference. There is too much to discuss on this topic to include in this post, so I will leave it with this brief statement, and discuss it further next time I write: Jason, like every human being, is Special. The fact that he is autistic is simply the most easy-to-identify aspect of his special nature. But the goal is for him to be perceived as an equal by his peers. His autistic nature does not place him above or below anyone - it simply is part of his makeup. He is both Special and Equal.

These are just a few of the choices we made (though they are some of the biggest ones) over the past 2.5 years. We hope we've gotten it right so far, and hope to be right more than wrong in the future.

18 comments:

mcewen said...

I think that we [parents of autistic children] have schizophrenic tendencies as you have outlined. I have no idea what the 'right balance' might be? I know that I flip between the roles that you and you wife 'play'.
[Aside] I also had a 'curious' comment a while back, that said in essence' that my child[ren] would never respect me as a parent, because of how I 'dealt' with my children.[obsession ?]
'Respect' in that sense, is something that I have no knowledge of.


We, [you and I] may not be respected for our parenting 'styles' but I also have no knowledge of how we can do otherwise.
Best wishes to you and yours.
Cheers

kristina said...

Raising my son, I am too often reminded that paradox is something we live in all the time---and it's all right to dwell there.

Daisy said...

Thank you for the thoughtful post. I am a "thinker"; my husband is a bit more of a "joiner". I research through books and the Internet; he attends monthly meetings with other parents, teachers, and guest speakers.

Steve D said...

McEwen -
Let the naysayers have their (nay?)say. The only barometer of our success is our children's positive life-experience, and we can't even control that all of the time. Best wishes to you as well, as always. Cheers.
Kristina -
Is there any other way to dwell?
Daisy - For those of us fortunate enough to be in successful marriages, parenting is a tag-team sport. Thank God for that!

Autism Reality NB said...

"As I read, I felt like I was on the verge of an epiphany. Not only, according to the author of the blog and all available links, were the proposed cures being sold not effective, they were harmful in many cases! Not only did acceptance of Jason's autism mean not denying it, but it also meant that I should accept Jason for who he is and not try to "de-autism" him! And this wasn't just one guy talking - it was a whole community. And most of them were autistic adults! Wow. I had never (knowingly) talked to an autistic adult before. It turns out, I realized, there are many, many autistic adults who would not take a cure if it was offered. This resulted in a whole new paradigm of thought."

I am glad you were able to find a whole new paradigm of thought. Your list of dichotomies looks like the standard simplistic and distorted Neurodiversity rhetoric. The autistic adults you speak with do not share the same challenges as more severely autistic persons with no or limited communication skills. Nor is there unanimity amongst autistic adults about whether they would accept a cure or not for their autism disorder. I have worked with autistic adults who strive to overcome the deficits that define their autism and who are supportive of parents trying to help their children via ABA. You may wish to know that aversives are generally not used in ABA which today relies upon positive reinforcement.

Every parent of an autistic child accepts the fact that their child is autistic, they have little choice. But autism is by definition a disorder; not a higher state of being. Give your fellow parents a modicum of the credit you bestow upon your Neurodiversity mentors. Most parents are too grounded to transfer responsibility for their children's development to a group of internet strangers.

Have a good day. And enjoy the Kool-Aid.

Maya M said...

Mr. Doherty, here you are doing exactly the thing for what you are blaming your pro-neurodiversity opponents: you, an Internet stranger for Steve's child, tell Steve that he is a bad parent and you know better than him what is best for his child.

Steve D said...

Harold -
Let's clarify some things.

"I am glad you were able to find a whole new paradigm of thought."
Gee, thanks. Me too.

"The autistic adults you speak with do not share the same challenges as more severely autistic persons with no or limited communication skills."
Keep telling yourself this, Harold, so you can reconfirm your worldview. You choose to focus on the most severely autistic (your words, not mine) in your views, which is understandable given that your son has tremendous communication challenges. This does not mean that I or anyone else has to.

"Nor is there unanimity amongst autistic adults about whether they would accept a cure or not for their autism disorder."
Please direct me to anywhere I or anyone else has made this statement.

"You may wish to know that aversives are generally not used in ABA which today relies upon positive reinforcement."
Or, I may already be aware of that. Aversives are not the only negative aspect of ABA. Personally, I am very happy with the progress my son made in certain areas of skill acquisition using some ABA principles. Other things benefitted him as well, such as PECS before he began speaking, and social stories currently. Not everyone agrees with all approaches, Harold, and I fully accept that.

" Every parent of an autistic child accepts the fact that their child is autistic, they have little choice."
Not true, Harold. There are many families who are resistant to even receiving a diagnosis. There are those who would hide their children. Perhaps you would consider reading "Unstrange Minds", wherein Dr. Grinker discusses how autism is viewed in South Korea, or India?

"Most parents are too grounded to transfer responsibility for their children's development to a group of internet strangers."
And some parents like to hurl insults towards perfect strangers simply because there are variations in their view of how young autstic children should be raised. Go figure.
Some parents even take a moment to consider the possibility that there is knowledge to be gained from autistic adults that could be well utilized in rearing their own kids. Wow.

Don't let your political disagreements with some members of the "Neurodiversity" community color your opinions of all people who associate with that group. I think there's a word for that. Prejudice comes to mind.

And I'm really more of an iced-tea guy than a Kool-Aid guy.

Stemark said...

I have spent the last 27 years helping families with a special needs person navigate the maze of planning and advocacy options. I meet with about 500 families each year abd the single word that best describes each is "Unique".

I do not ascribe to any theory which attempts to be "the answer" across the spectrum of issues that face both the consumer or their primary caregivers. Life, in this enviroment, is dynamic by nature and second guessing or back seat driving is non productive at best and a waste of energy.

Do your research, attend your meeting and counsel with others who share your path, then do what you belive to be right. Review, revise and strengthen as the need arises. Don't ever give up.

God bless you for the sacrifices you have and will make on behalf of this unique individual.

Another Autism Mom said...

Steve,

It seems that every other day or month my attitude/point of view towards my son's autism changes. There are times when I feel extremely positive, and there are others when I get scared or depressed. Accepting the diagnosis and your child's differences is one thing, but handling the everyday challenges is not a breeze. However I don't lose sight of how wonderful my son is as a human being, even if I compare him to other neurotypical kids his age. I just hurt to see that life will be harder for him than for the average person. I am one of those overprotective mothers who can't bear to see anything bad happening to her child (sorry, I'm neurotic like that...) so I know I'm in for a bumpy ride. It will be hard to be always there to intervene and make sure he doesn't get mistreated or misunderstood by peers or other people.

Autism Reality NB said...

?As I read, I felt like I was on the verge of an epiphany. Not only, according to the author of
the blog and all available links, were the proposed cures being sold not effective, they were harmful in many cases! Not only did acceptance of Jason's autism mean not denying it, but it also meant that I should accept Jason for who he is and not try to "de-autism" him!"

I am not generalizing, stereotyping or caricaturing your comments Steve. I am taking your words at face value. And yhey are the words of the Neurodiversity Ideology.

Your "ephiphany", to again use your own word, scary as its implications are, is acceptance of an ideology which you regurgitate in your comment, which brands treatments as ineffective without acknowledging the huge gains mady by children whose parents were able to introduce ABA as an intervention.

Your words, as does the ideology of your "community", imply by necessity that parents seeking to cure their children do not accept their own children for who they are. And then YOU complain about being judged and insulted by others.

Autism is a disorder Steve. True acceptance comes with acknowledging that reality. Talk to some of the autistic people who actually live in institutional care because they can't care for themselves, many of whom have little or no ability to communicate by technology or otherwise. You will have to go to them though, as I have done, they will not be posting witty, sarcastic commentary on internet blogs.

I did not permit your last post on my site to publish. Your comments were off topic, insulting and detracted from a joyful post about my son, not joy in his autism, joy in him.

Steve D said...

Which of my comments were insulting? Was it the part about how I agree with portions of what you are saying? Or perhaps that I respect your right to disagree with my points of view, but feel your methodology of insulting perfect strangers and drawing generalizations about their approach to parenting is inappropriate?
Hmmm...
So, to be clear, it is perfectly ok for you to drop in out of nowhere to insult me and mine, but you will censor a provoked rebuttal from appearing on your site? Interesting paradox, Harold.
Ah well, I guess I'll let you get back to espousing your misconceptions about Neurodiversity, ignoring any direct statements that contradict your established worldview, and avoiding any open discussion which threatens to force you to consider that you may be mistaken in your prejudices.
In other words, we'll agree to disagree.

Michelle Dawson said...

I've directed Mr Doherty to People First of Canada before. This is a group run by and for people with a lot of experience in being institutionalized. Indeed, this group originally formed in opposition to those who, like Canada's famous and powerful "autism advocates", demand the institutionalization of people who have certain diagnoses, who have certain behaviours, or who lack certain skills.

People First of Canada writes, "We know that people, regardless of type or extent of disability, do not need to live in institutions."

In contrast, Canada's famous and powerful "autism advocates" demand that autistics who do not receive unlimited ABA/IBI starting very early in life (that would be most autistics in Canada--most of us are too old to have had ABA/IBI as young children) must be institutionalized by the time we're adolescents, abused (kept in restraints), and mutilated (our teeth pulled).

Steve D said...

Michelle -
Thank you for your comment.
You and I are not exactly in agreement on the issue of behavioral interventions, but I respect your position on the issue.
Mr. Doherty seems to fail to recognize that a lack of adherence to his personal conception of how autism treatment should be approached does not equate to a poor outcome for all autistic children.

notmercury said...

What can we expect from someone who calls Mike Wagnitz a toxicologist. Reality, it's an illusion.

JoeyAndyDad said...

Great post. One of the things my wife and I learned in our attempts to help our autistic son was that it's OK to cast a wide net- explore things that even sound a bit dodgy, and then make the decision with your best judgment.

Also, if a therapy isn't working, stop it!

Every parent has to find what works for their child, and remember to consider the child's perspective and opinion- if they dislike the therapy and are uncooperative, the therapy won't be very successful.

Anonymous said...

Just found your blog while surfing tonight and wanted to make one comment about REINS.

I'm a lifelong horse person who happens to be on the spectrum. (I grew up in a family that rides.) I've volunteered with theraputic riding places since I was old enough to do so. I've found that most of the magic of horses and riding is just that- horses- and not anything uniquely theraputic to disabled kids. Riding will give your son something valuable now and when he's older- a social arena where at least some of his peers won't care how he acts or what he looks like, if he talks or if he doens't, as long as he likes horses.

Steve D said...

Anon -
Thanks for your comment, and I agree with you. The beauty of REINS, beyond the atual horses, is twofold. First, the staff is incredibly patient and understanding, they understand my son's needs and sensory regulation issues, and they love doing what they do. Second, since all riders are disabled one way or another, REINS is in essence a disability-free zone - no one even notices anyone's particular limitations, unlike in the "real" world. For this reason, it makes it an extra-special experience for Jason.
In the final analysis, however, I agree it is simply that horses, and horseback riding, is a wonderful pursuit.

Wil said...

Hey Steve, I've been a long-time reader of your blog and have really enjoyed it.

This post really hit home, as the topics that you chose were all questions and experiences that my wife and I have gone through since hearing our son's Dx.

We've went through the same full circle that you have, from learning about all of the "cures" to now focusing on helping my son with his sensory, communication, and nutrition issues.

The choices that we've had to make have been really significant, and I'm just happy that my wife and I have been able to agree with each other. I have no doubt these choices cause a lot of turmoil in relationships. It's not easy making life-changing choices for a 4-year-old :(

Anyway, thanks a lot for the work that you put into this blog!