Last week, a group of dads belonging to the National Foundation for Autism Research honored me with an invitation to speak at their meeting. The online announcement said I would talk about my book, but I thought it would be more constructive to discuss a few parenting principles. I went in with a short list, and might’ve run out of things to say in just a few minutes. However, the audience was a public speaker’s dream come true. Everybody was so engaged! All that constructive energy renews my hope that the prospect for our kids is improving.

Anyway, these are the high points of what I said.

A child who is disabled is, first and foremost, still a child.

This may sound like a bromide, but what I’m recommending comes most easily when you are dealing with an apple-cheeked youngster who says cute things and gives you lots of great feedback. A child with problems that make him less than cuddly or responsive may inspire enthusiasm on your part for finding professional help. And that’s great. However, he also desperately needs to be told, repeatedly, in every way, that he is loved and cherished. Kids who give you no eye contact, or who are rigid or combative, need this reassurance at least as much as anyone else. So in addition to being an advocate, be a daddy.

If your doctor doesn’t take your concerns seriously, consider finding another doctor.

As noted previously on this blog, not all doctors are on board with the importance of early intervention, even today. If you find yourself dealing with someone from the nineteenth century, dump him. The next guy you see may be just as bad, but there are good doctors out there—people who know this. We parents owe it to our kids to find them. Remember: Whatever choice is made, we are the ones who live with the consequences.

Have extravagant goals for your kids.

Swing for the fences. If you strike out, at least you know you tried. Imagining a wonderful outcome is not the same as being in denial. Denial is excluding or ignoring information we need to attend to. It’s pretending that everything is fine when things are not fine. Instead of that, I’m talking about doing everything we possibly can to turn the situation around. For me, the question has always been whether I was willing to relax and coast while knowing that there was something I might be doing that could make a difference. And I wasn’t.

Choose your battles.

Initially, I meant to talk only about not letting other people rope you into promoting philosophies and causes that don’t necessarily benefit your child. However, I spent most of my time talking about unwinnable confrontations with school districts. Everyone present had a lot to say on this topic, and this is where I learned the most. Because these days, parents who are prepared and who don’t quit seem to be winning more often! And as for those causes, participation can be energizing. Well, yes, I did know that. Perhaps some of the lessons impressed upon me over the years have been incorrect. If I give this talk again, this point is the one to work on.

Stay balanced

This one almost seems to contradict the point about swinging for the fences. I think it’s consistent if each of us applies common sense. Our families will not be helped if our own lives are ruined in the process of trying to overcome a chronic problem. We must take care of ourselves while we are taking care of our kids. And since I was speaking to a room full of dads when I said this, I referred to a guest blog post from last summer and finished by recommending hugs for wives as well as for kids.

I originally wrote this item for another website, which subsequently took it down without notice. Maybe it was too controversial. ; )

The other morning, Susie, my 11-year-old, mentioned that her teacher told the class that she’d first learned to read via the so-called whole-word approach, which of course is now very much out of favor. I told Susie that “whole word” probably describes the method I used many years ago in helping her disabled older brother learn to read.

Back in those days, I got my guidance from Glenn Doman, author of How to Teach Your Baby to Read and founder of a highly controversial clinic for treating brain-injured kids. My son Joseph did learn to recognize words via this method, although that skill never progressed to a functional level. Whether the problem lay in the method or in his capacity to learn (or my own capacity to teach) is still open to debate.

I also told Susie that, if the past is any indication, phonics may in due course drop out of favor as well, either to be replaced by something new or by a return to whole-word. I have no argument whatsoever against phonics. My point is just that there will always be warring factions, most especially when it comes to matters of education and child-rearing, and progress seems to occur along a zigzag path.

Nothing brings the divisions into focus more sharply than the experience of raising and advocating for a developmentally disabled kid. I could go on all day listing the topics people fight about here.

• Which is better, segregated special education classes or total inclusion/mainstreaming?
• What about vaccines? Are they a greater danger than the diseases they guard against? If so, is the problem only one or two vaccines, or the accepted schedule for giving them, or are they all suspect?
• What about terminology? Is it worthwhile to object when you hear a word like “retarded?” If so, what’s a better term? Challenged? Differently abled? Special-needs?
• Should kids with developmental disabilities be helped to improve, to be made more like the rest of us, or are they just fine the way they are?

The above questions barely scratch the surface, but it would surprise me if you did not feel a strong reaction to at least one of them. Even in the best of circumstances, parenting can sometimes be scary; and you can multiply the scare factor by a hundred when disability is involved. We want to believe that we have a handle on things, some semblance of control. If we don’t have that, how can we hope to give our kids the security and opportunities they deserve? And so we quite naturally look for justifications that will enable us to take positions with some confidence.

Over the long haul, however, there are trends and counter-trends in most if not all of these controversies. Just as in whether to teach reading via whole-word or phonics.

And yet, the fact that we may one day view things differently doesn’t mean we’re not entitled to opinions now. Of course we are. Because we have to make choices now. But somewhere along the line, I noticed something about myself. As the parent of a disabled boy, I had certainly formed strong opinions; and my concern for him, and my pent-up frustration with the limited opportunities available to him, had created in me a sort of righteous indignation that could burst forth when I encountered views contrary to my own.

Maybe now and then it’s healthy for us to let off steam in such cases. On the other hand, I wonder whether taking up the banner of a cause, any cause, really benefits our kids. After all, they are what this is all about. We adults are going to disagree over one thing or another, and maybe we need to accept that.

Click here to listen to the 60-minute  interview that was conducted on Sept 8 by Robert Rose, PhD. Excerpt below:

“…I think there’s something about the way human beings are wired that makes us want to turn over control and authority to someone else. I felt that tug at a couple points in the story I tell. Trouble is, other people tend to not know much more than we do. And getting direct access to something higher than other people is problematic. At some point, all of us run up against the fact that we don’t have the full picture. We don’t know why things still are the way they are. We have to assume that there is a reason. At least, that’s my assumption. And, if we truly are incapable of fixing things to our liking, seems to me, we have to find a way of being at peace with that. Now, one thing I’ve observed is that understanding this concept with my head is not the same as being able to do it well. I mean, finding peace is still a work in progress for me. Maybe that’s because I still don’t fully accept the premise that nothing can be done. Deep down, I still want to think that solutions exist for our problems.”

UPDATE: Dr. Rose has written a book of articles in which he ponders the lessons to be drawn from various interviews, including mine. Please contact him (icdrrose1 (at) gmail dot com) to purchase a copy at a very discounted price.

Dave and Bill at Cyberhood Watch Radio gave me my first one-hour interview, and the time flew past. Click here to listen. Excerpt below:

I’ve just received an email announcement regarding an attorney’s presentation for families who want to convince their school districts to provide services for their disabled kids.

 The email has its due share of acronyms that may not mean much to people outside the fray (IEP, IDEA, FAPE, OAH), but the message is pretty clear. Despite whatever the law says, and despite whatever ideals educators may have had when they entered the profession, nothing is fair. Essentially, the attorney will tell parents:

• How to plead the case for individualized services for their child
• To remember that, under the law, they are in theory “equal members of the team”
• How to break through the perception of the “crazy parent”

I used to go through those battles. Two or three times, in wrestling with Joseph’s school, I hired advocates–career educators who knew the lingo and knew how to pounce when the teachers and therapists representing the school tipped their hand. Despite a generally pleasant veneer, it was always an adversarial situation. Obviously, things have not improved.

Given the fact that money is tighter now than at any time in memory, how could things have improved? Fighting the system doesn’t come naturally to most of us. It certainly did not come naturally to me. Of course, seeking help for our kids leads a lot of people outside their comfort zone. But although we do have to seek that help, I can’t avoid wondering whether some avenues are worth the trouble.

Public money for things like individualized ABA programs just isn’t there, if it ever was. Families who insist on it are routinely blamed for their “sense of entitlement” – and generally end up with nothing anyway.

Am I wrong? I say that based on everything I’ve experienced and observed over many years, but somebody please do tell me I’m wrong.

What I like best about Rob Rummel-Hudson’s memoir is his depiction of duking it out with his daughter’s school in hopes of getting an assistive technology device that would help her communicate. In the end, the family raised money via their website and bought the thing themselves. It’s a beautiful victory. Not the end of their struggles, mind you, but the kind of step forward that everyone loves to see.

So, as I’ve suggested before, I like the idea of finding alternative ways of getting what you want. By this point in my life it comes naturally. But again, alternatives are no sure thing, either. Rob’s most recent blog post tells the story of someone who apparently tried to emulate his online appeal for funds but who left the participants with a suspicion of having been duped. Such stories can only hurt future legitimate efforts, in the same way that fraudulent memoirs undermine the perception of those seeking to tell the truth.

I don’t know what the families attending that presentation ought to do. But like the school districts we all have finite resources (I’m talking about time, energy, and spirit as well as money). Governments seldom manage what they have with any wisdom, which is a big part of the reason behind what’s going on in the news today. In comparison, families can reach the end of their ropes a lot sooner, and with more finality. Choose your battles wisely.

Heard an anecdote today. It may be apocryphal but whether it actually happened really doesn’t matter.

A little old lady is in bed late at night, with the lights out, and she hears somebody trying to break into her house. She dials 9-1-1 but (due to budget cuts–entirely plausible here in California) gets only voicemail. She knows she can’t wait, so she hangs up and checks the phonebook for a doughnut shop. Calls that number and asks the manager if any policemen happen to be there. He says, “Well, yes, as a matter of fact we have two sitting here right now. Would you like to speak to one?” Next thing she knows, the bad guy is getting hauled away in handcuffs.

What’s the point of that tale? Quite simple: If there’s something you absolutely must have, or something your kid needs (which is the same thing), and the normal channels for accessing help aren’t working for you, don’t be surprised. Do be prepared to think creatively.

Maybe it’s a reflection on the quality of my own creative thinking, but I usually find that the first clever idea doesn’t work out that neatly. Staying with the above analogy, the shop is closed, or the cops have already come and gone, or maybe I can’t even find the blasted phonebook. In that case, there needs to be a Plan C. Any number of wild ideas will beat the alternative of giving up. What’s got you stumped right now? And how are you going to get around it?

Don’t be alarmed. People come to this site with a variety of beliefs, to which they are entitled. I have no intention of preaching.

But Easter is here again. In SoCal it’s nothing like the major event—which came with a sense of everything having been made new again—that I dimly recall from Easters long ago in Carolina. Still, the kids in our house are charged up. And I find myself pondering a phase in my life that’s covered in the latter chapters of WATB.

There came a point in the early 90s when our family’s confidence reached a very low ebb. The treatment program that had helped our son Joseph overcome some of his disabilities was no longer working. His mother and I had been pushing harder and harder to make it work again, and we were breaking, in every sense.

I saw myself, in those days, as the prodigal son, who’d set forth to achieve something on his own and instead found himself in the pigpen of life.

Judy helped me view our situation in those terms because, following an unexpected conversion experience, she’d reached the conclusion that there was another, far better way. With her lead, we sought guidance from people who taught that healing and fulfillment of all good desires was available thanks to the sacrifice made at the first Easter.

If the written account is taken literally, Jesus demonstrated many times that it is God’s will for people to live free from disease and disability. The first obstacle to enjoying that blessing, we learned, was simply ignorance of it. The second obstacle was failure to understand that believers have the right to it. Beyond that—and I’m paraphrasing and simplifying like crazy, on top of my very imperfect memory and understanding—success is a matter of activating divine power through faith. What is required on the part of the receiver, they taught, is not mere hope, and not an intellectual understanding, but an inner conviction that what has been prayed for is already true, regardless of appearances. Faith, we read, is “the evidence of things not seen.”

Just as belief in the therapy program had previously sustained us, this new faith removed much of the anxiety that had returned to cloud our lives.

Now, in view of what happened subsequently, conclusions might be drawn concerning the truth of the scriptures, or the merit of the teachers we had, or our own capacity. Various people I’m acquainted with would opt for one or another of those explanations. I’m inclined toward the second, but as I say in the book, the whole subject seems to be beyond anyone’s understanding. Like Judy, I had personal moments of fleeting contact with something greater than myself. But I cannot claim any enlightenment as a result. What Easter represents transcends anything manmade, certainly including religion.

Which kinda leaves me in the lurch when it comes to talking about it with the young ones.