29 Marbles

I originally posted this over two years ago, and like my last post thought it would be worthwhile to reprint it as many parents are preparing for IEPs.

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“Men must attend IEP meetings.”

This advice comes from Charles Fox at the Special Education Law Blog in a Father’s Day post discussing the role of fathers in the advocacy process. A short excerpt:

Fathers and men too often fail to realize that sometimes just showing up at a meeting in support of the child can make an enormous difference. In my list of essential advocacy points, I list that “men must attend meetings.” [number 11] I was actually accused of being a male chauvinist for stating this position at a parent training.What was lost in translation was not that women are incompetent advocates because nothing could be more untrue; rather, that the dynamic of the meeting can often go differently if the father, uncle, grandfather, brother or even male co-worker or friend comes to a meeting or mediation.

His list of 16 basic principles of advocacy is well worth reading, printing out, and keeping in IEP file to help you prepare each time you must go through the process.

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I’ve also written about my own experiences as an autism dad with IEPs, and as a dad in general.   I’ve been lucky, but I know this isn’t always the case.  What have your experiences been?

I’ve posted this a couple of times before, but it seems worthwhile to post again as many of us enter IEP season.  (originally posted last August)

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As a young Army officer, I read Sun Tzu’s Art of War many times (in different versions). When I transitioned into the civilian workforce, I realized that many of the ideas would translate to the world of business. (Not literally, of course. For example, Sun Tzu’s demonstration of leadership ability using the Emperor’s concubines as soldiers.)

The Art of War can also be applied to many other common activities, such as the IEP. You can pull from many quotes, but here is my favorite:

Know the enemy and know yourself; in a hundred battles you will never be in peril. When you are ignorant of the enemy, but know yourself, your chances of winning or losing are equal. If ignorant both of your enemy and yourself, you are certain in every battle to be in peril.

Of course, this may need some translation* into more relevant wording. Such as:

Know the district administration and their stated (and unstated) goals and resources, and know your rights and what is best for your child; in a hundred IEP meetings you will never fail to get what you need.When you are ignorant of what the district’s goals or resources are, but know your rights and your child’s needs, your chances of getting what you need in the IEP are 50/50.

If you are ignorant of both the district’s goals/resources and your rights and needs of your child, you are certain in every IEP meeting to get what you get, and probably not what you really need.

Of course, this important piece of advice can just as easily be translated into the school district perspective, I’ll leave that exercise to you.

Based on my personal experience, conversations with other parents, and conversations in the blogosphere, my guess is that most people (from both sides) go into IEP meetings knowing themselves, but not their “enemy.” As a result, we often see winners and losers in the outcomes of IEPs, the result of hard fought battles that leave everyone bitter and exhausted.

What would happen if both sides heeded this advice and came in knowing themselves and the “enemy”? According to Sun Tzu, both should expect to win. But both sides can’t “win”, can they?

To that I answer a resounding, “Yes, of course both sides can win.” Wouldn’t that be a nice change?

* (If you are interested in some thoughts on translation within a language, check out my post Knowledge in Translation on my No Straight Lines blog.)

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In a recent post suggesting the formation of an Alliance for Autism, Mike Stanton raised a few issues on which parents and adults with autism as a group may need to come to some sort of agreement.  One of those issues are the questions:  Is autism a disability or a difference? Can it be both?

More than just an academic debate, the answers to these questions have very definite real world consequences.  Disabilities are covered by various laws, policies, etc. etc..  Differences, on the other hand, are not.  This was brought home to me when I read the aspie:talk post an adult trying to get accomodations. Although his her issues were more related to not having an official diagnosis, the situation presents a good point of comparison.

If treated as a disability, supported by the proper diagnosis, then the company needs to provide appropriate accommodations to allow the employee to work.  If, however, autism is seen as a difference, then the company is under no obligation to provide this employee any unique accommodation.

In a comment to the post, Al had this to say:

i would lay out what accommodations you need in the workplace without referring to the medical issue… which is unsolvable at this point. just state what you need item by item as matters of personal preference, in terms of “developing a comfortable working environment” and “ways they can help you be happier and more productive.” many of the social problems you have are probably going to exist at any workplace, i would guess, i’m not sure to what extent a diagnosis would alleviate the “micro-social” situation.

Obviously, this is an area where parents and adults with autism may have some differing opinions.

Difference, or disability?  What do you think?  Me, I’m still trying to figure out what I think.

I am not grieving, despite the concern (?) from CS in a comment on my most recent post.  (Nor am I simply in denial as I’m sure some will tell me about my thoughts on autism and raising an autistic child.)  I have written about grief and autism before, though, and this seemed like a good time to dust that post off and repost it.

From April 2006, Autism and the 5 Stages of Grief:

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For many families, a diagnosis of autism in a child brings about a profound sense of loss. Since most people don’t actively educate themselves about autism before the diagnosis – let’s face it, no one thinks it can happen to them – most of what they know comes from what they may see, hear, or read in the media. Unfortunately, the vast majority of stories about autism in the media are about the ‘devastation’ of autism, of how kids are ‘lost’ in a strange and terrible world away from society.

As a result, I think that many people who find themselves facing an unexpected diagnosis slip into the 5 stages of grief. The link provides some details on the 5 stages, including some discussion of why some think they are not valid, but here are the 5 stages themselves:

• Denial
• Anger
• Bargaining
• Depression
• Acceptance

These are the stages, as I understand it, that a person will go through if left on their own, if they don’t receive any support or gain any understanding beyond the feeling of loss. One of my goals with Autism for Parents [ed: an unfortunately now defunct site] is to present an alternative to these ‘default’ stages that treat an autism diagnosis as a devastating loss with a series of steps that parents can take to fully understand their situation and go beyond mere acceptance.

Here are the steps I’ve come up with.

• Denial – unfortunately, unavoidable [ed: at least until everyone accepts that it could happen to them and/or that it is not a bad thing to have happen]
• Confusion – again, unavoidable
• Understanding – the process a parent takes to understand the situation. In this step, will answer the questions that come from the confusion stage.
• Plan – based on understanding gained in previous step, make a plan for your life ahead (something parents do with all kids)
• Act – live life to the fullest, adjusting the plan as your understanding grows.

I’m interested in any feedback to help refine the individual steps, or the overall concept itself. I’ll explore each of the steps in a bit more detail in subsequent posts and will consider all comments/suggestions.

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Another comment, this one from Phil Schwarz, talks about the real need for grief in some situations, but also reminds us of what it is we are really grieving.  Phil references Jim Sinclair’s Don’t Mourn For Us, which I discovered, and wrote about, along with Phil’s Cure, Recovery, Prevention of Autism? not long after writing the “5 Stages” post.

To me, the most important stage for parents is Stage 5 – ACT.  In this context I don’t mean act in a “big” way, trying to change the world while all but ignoring your child.  I mean act in a “small” way, as a parent, doing your best with what you’ve got and raising a happy, confident, and self-assured child that becomes a happy, confident, and self-assured adult.

Or, as Phil so eloquently put it in his comment:  It’s what you do beyond the grief that matters.

It’s been a busy week or so, and I am still pulling together a review of The Speed of Dark, but I jotted a note to myself to blog this last weekend following the Republican National Convention and all the furor surrounding Alaska Governor Sarah Palin and her newborn son with Down’s Syndrome.

Over the weekend, and with the news about Gov. Palin still fresh and in rotation, my iPod mix shuffled itself to Sinead O’Connor’s version of Phil Coulter’s  “Scorn Not His Simplicity”, written about his young son with Down’s Syndrome.

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See the child
With the golden hair
Yet eyes that show the emptiness inside
Do we know
Can we understand just how he feels
Or have we really tried

See him now
As he stands alone
And watches children play a children’s game
Simple child
He looks almost like the others
Yet they know he’s not the same

Scorn not his simplicity
But rather try to love him all the more
Scorn not his simplicity
Oh no
Oh no

See him stare
Not recognizing the kind face
That only yesterday he loved
The loving face
Of a mother who can’t understand what she’s been guilty of

How she cried, tears of happiness
the day the doctor told her it’s a boy
Now she cries tears of helplessness
and thinks of all the things he can’t enjoy

Scorn not his simplicity
But rather try to love him all the more
Scorn not his simplicity
Oh no
Oh no

Only he knows how to face the future hopefully
Surrounded by despair
He won’t ask for your pity or your sympathy
But surely you should care

Scorn not his simplicity
But rather try to love him all the more
Scorn not his simplicity
Oh no
Oh no
Oh no
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I first heard the song many years ago when O’Connor first released it, and if you are a parent of an autistic child hearing it for the first time you can imagine my reaction.   I’d love to hear yours.