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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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.

My recent posts, and your comments to them, has got me thinking about the following question:

Aside from being a good parent, advocating for our autistic children when they are young, and helping them learn how to advocate for themselves as they get older, what are some things that parents can do advocate for autistics in general?

I know what the basic message is, but what I’m not sure of is how best to get that message out; to friends, family, local media, educators, etc etc.

I’m going to be “off the grid” for the next 10 days, so I won’t respond to anything right away. But I’m looking forward to reading your ideas and suggestions.

I started writing about autism, specifically about being an autism parent, just over three years ago. One of my goals was to provide information that would be useful for parents who have recently received a diagnosis of autism for their child. This post is my attempt to give you, as a parent of a newly diagnosed autistic child, an idea of what you will likely find as you try to understand what that diagnosis means to you and your child.

Parenting is a challenge, no matter who your kid is. No matter what you do, someone somewhere will tell you that you are doing it wrong. If you are already a parent, you know what I mean. How many times have you heard someone tell you that your kids should spend more time outside, less time on the computer or with their video games, more time reading, less time on the phone; that you should spend more / less time with them, give them more / less independence, etc etc.

It is no different being the parent of an autistic child, except maybe for the passion with which complete strangers will tell you how poor a job you are doing. A few things you can expect to hear from others, or read in blogs, etc:

“You’re going to screw your kid up if you get him vaccinated.”
“You didn’t vaccinate? Why the hell not?”

“If you don’t start with intensive early therapy and treatment, there is no hope for your child.”
“If you start with all that intensive early therapy and treatment and try to change him, he’ll be emotionally scarred for life.”

“Why are you trying to mainstream him at school, he would be better off in a special placement.”
“Why aren’t you pushing for a mainstream placement, that is where he should be and the school just needs to suck it up.”

“You can’t blame that person for getting upset, that outburst was quite disturbing and invasive to others.”
“Screw that person. They need to just get over it an realize that everyone is different and has the right to be who they are.”

“You need to cure your child of this terrible affliction, recover him from the damage that has been done and get on with your life the way it was supposed to be.”
“Your child doesn’t need a cure, you need to accept that he will be different, that your life will be different, and that you need to just get on with it.”

These are, of course, examples from the extremes. But you will quickly find that there is not, in general, a lot of middle ground in terms of how people will judge you.

In your readings and explorations of autism, you will find that there is no known cause, and that some people think that vaccines are the cause. Some will even say that there is no cause (or least no need to find a cause). Those who think it was caused by vaccines will try to convince you that you need to cure your child through diet or other types of medical procedures, some will say you need intensive behavior therapy. Some will tell you there is no need for a cure. These are all things you will have to decide for yourself.

As you learn more about autism, you will also find yourself learning more about autism advocacy and all the forms it takes. There are groups of parents, medical professionals, and others that will tell you your child has been poisoned by vaccines and that you need to cure – sometimes referred to as recovery – him through diet or other medical treatment. There are those that will tell you that you need to cure your child through intensive behavior therapy. Many, though not all, of these advocates will also help you understand the accommodations and supports that you will need and are entitled to. Then of course there are all of the organizations that have formed to promote these various forms of advocacy. Importantly, the vast majority of these advocates are not autistic themselves.

Once you realize this, you will discover a separate world of autistic advocates for autism. You will quickly find that, despite the stereotypes, all autistics are not the same. You will hear that your child wasn’t poisoned by vaccines, or anything else, and that there is no need for a cure. You may also hear or read that some autistics do want to be cured. You will get plenty of advice – some good, some not so good – about how to raise you child from the perspective of someone who used to be an autistic child. You will hear from autistics diagnosed as adults, and learn what their life was like as an autistic child without the benefit / burden of a diagnosis.

About two months ago, autism blogger Lisa Jo Rudy challenged parents to “quit autism for just one day.”

Your child with autism may always be autistic, but there are places and circumstances in which it either doesn’t matter – or in which your child’s special talents make autism irrelevant. Whether it’s at the beach, in the woods, at a concert, or creating a work of art – just for one day – go somewhere where autism doesn’t matter.

Just for one day, quit being the parent of a child with autism. And become just a plain, ordinary, loving, proud parent.

Everything I’ve learned about parenting an autistic child can be boiled down to an incredibly simply stated idea (provided to me by a fellow autism dad): Parenting is parenting. My response to Lisa’ challenge reflects this attitude:

Just one day? Every day should be like that. At the very least, every day should start like that. You can’t always control how a day will end up, but only you can control how your day starts.

I am the parent of a trampolinist. I am the parent of a horse-back rider (equestrian?) I am the parent of two pianists. I am the parent of two high school students. I am the parent of two avid gamers. I am the parent of an autistic son and an NT son.

I am, to use your words, “just a plain, ordinary, loving, proud parent.”

Every day.

Everyone will have something to say about how you raise your autistic child, most everyone will judge you in one way or another. In the end, of course, the only person’s judgment of you as a parent that matters is your child’s. All you can do is be a plain, ordinary, loving, proud parent. Everything else is just details.

After over three years of blogging about autism, I’ve finally found the right words to express my feelings, as a parent, about autism and neurodiversity.

I admire and appreciate the important and necessary work of Jim Sinclair for both autism, and in general for people with disabilities. It is an extremely well-written and concise expression of rights of those with disabilities, the folly of many parents in missing the individual beauty and development of their own child in the constant misguided comparison with an incomparable standard, and the need for public accommodation and acceptance of autism as a different way of being. I myself have used that expression, “a different way of being”‘ in conversation, and it describes autism well, without defining it as less-than.

I do not, however, accept the entire message and implications of the neurodiversity perspective. I understand the need for a concise theory, but sometimes the neat and tidy package does not fit some of the intricacies of reality.

I do not accept a logic chain that precludes reasonable treatment efforts particularly early education / intervention from being defined as anything but unacceptance, of one’s child and autism in general. I fully love and accept my child, regardless of the abilities he has now or in the future. I don’t accept that it makes me a lesser parent in that I am sending the message that my son is “not good enough” or I don’t accept him as he is. I am a full parent to my children. The same parenting ideals hold for my daughter who is neuroytpical. I am parenting her, based on my love, her needs and what will help her to live a full and happy life. I have always worked hard as a parent to educate her. Does that then imply that I do not accept her? Of course not, it means that I want to educate, stimulate, give options for how to be in the world, teach skills to foster communication and connection with others, as much independence as possible by trying to be the best possible parent.

If you logically extend Jim Sinclair’s argument, then no child is accepted if they are being educated. If we accepted children as they are, then we would not need to alter their natural state of being by educating them. Would the neurodiversity perspective have me feel guilty or wrong for parenting appropriately as per my definition of good parenting?

Sinclair’s stance works well for natural disabilities, but autism may not always necessarily be the natural sate of being for a particular individual. I do believe there may be some on the spectrum who have autism from a genetic basis, or that autism began before birth, which may indeed fall completely under the neurodiversity umbrella. However, the possibility of environmental triggers playing a role in autism exists, which would mean the possibility exists for reversal or treatment of same, as an unnatural state of being in certain cases. I love my son whether he was born with autism, developed it in utero, or was injured environmentally at some point which triggered or enhanced it. Just as parents whose children have cancer fully love and accept them, but still want to find a cure or treatment, as well as give them an enriching and happy life, how ever the condition progresses, so I want for my son. As for using cancer as a comparison, the comparison begins and ends with the way I have used it specifically in the above example.

I agree with Mr. Sinclair that rigid insistence that the child with autism communicate with neurotypical people in only a neurotypical fashion is selfish and narrow-minded, as well and limiting to the parent-child relationship and the child’s development. I agree with the need for those with autism to have allowances, accommodations, ways and places to be in the world. Education of the public regarding the rights of those with autism is sorely needed.

I applaud the work and feel that the neurodiversity perspective is a necessary part of public education and awareness, but I wish the perspective did not require a scapegoat to secure the strength of its message. Parents benefit from such guidance to a point, but not the accompanying pressure and judgment.

Words cannot define the overwhelming love I feel for my son, and no “perspective” will tell me that I am not acting in his best interests, and that I as his parent, am in the appropriate position to do so.

Finally, I fully and unconditionally love and accept my son (and always will), and I want the very best education and treatment for him. The two concepts are not mutually exclusive.

As you may have gathered from the indented quote (and a reference to a daughter I don’t have), these words are not mine. They are the words of Marni Wachs, and autism mother from Winnipeg, Manitoba, posted as a guest blogger at Harold Dougherty’s Doherty’s blog Facing Autism in New Brunswick. I’ve touched on many of these themes before at various times, but have never been able to pull it together as neatly and concisely as Marni has.

Thanks to Marni for allowing these comments to be posted, and thanks to Harold, who is known for an occasional rant against neurodiversity and the Autism Hub, for posting comments that include the statement, “I applaud the work and the feel that the neurodiversity perspective is a necessary part of public education and awareness.”

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EDITED (7/22):  Based in large part on Amanda’s comments to this post, I’ve gone back and modified the original post by highlighting those things that I feel and believe.  (Of course, I could have been much more concise about it and simply said, as Wade did in the comments, “Parenting is parenting,” but conciseness is not something I’m often accused of.)

Also in response to Amanda’s comments, I will be discussing Jim Sinclair’s writings in a future post.