Tracey Alley, an Australian blogger, very kindly offered to make What About the Boy? her book of the week. I contributed a unique post to go with the basic information, and hope you will check it out here.

Another guest post went live today on a blog called TheAdventurousBitch. It includes a photo from when Joseph was a little guy just starting to walk. Please check the right-hand column from time to time, as I hope to be able to continue adding additional links like these.

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.

So there we were, the wife and I, sitting by the backyard pool at our friends’ house and enjoying a little camaraderie with the other guests.

I had been chatting idly about travel destinations with a retired airline pilot when a gentleman I’d never seen before happened to join us. Before long, I found myself deep in discussion with this new guy, the pilot having turned his attention elsewhere. We touched on sports and other safe subjects, but before long things became more exciting.

Craig, my new friend, mentioned that as a child he had been diagnosed with cystic fibrosis and had been given five years to live. I don’t think we exchanged ages, but based on appearances I’d have to say that, like me, he has left his youth far behind. Somehow, he survived CF, at a time when almost nobody did.

Seeing my interest, he told me that in his teenage years he’d studied the Chinese art of qi gong. The CF was already in remission by then, but he credits qi gong with the fact that he has kept it at bay all these years. What’s more, he and his wife, who is Chinese, have occasionally applied the principles they have studied — or the gift they’ve been given — to alleviate the sufferings of others. He mentioned a woman afflicted with Lou Gehrig’s Disease who regained mobility (at least temporarily) with their help.

At some point in the discussion, I explained my fascination by telling Craig that I have a disabled son. Craig seemed to think he and his wife might be able to help Joseph. In all these maladies, he said, treatment is a matter of locating a “blockage” in the flow of energy and freeing it. Now, that explanation doesn’t mean a whole lot to me. My education, such as it is, is Western. I understand the flow of blood through the circulatory system, I understand the flow of heat through a conductive material, but I don’t know what is meant by the flow of energy.

On the other hand, I don’t understand how acupuncture works, either, but I know from personal experience that acupuncture can sometimes help. A couple years ago, it conquered my very painful and debilitating case of frozen shoulder syndrome.

I like to know how a treatment works. But more importantly, when faced with an unacceptable problem, I like to hear that improvement is possible.

Over the years, this mindset has prompted me to do a great many extraordinary things on behalf of Joseph, some of which are described in WATB. A few of the providers I sought out did help him acquire new skills. Most of them succeeded only in transferring money from my bank account to theirs.

But again — some did help! Therefore, others might yet help further.

Qi gong is one of the few things we have never tried.

Other treatments, conceivably, may not have had a fair trial. Since my chance encounter with Craig, I’ve found an organization that is giving presentations here in Southern California regarding use of stem cells as a treatment for various conditions including autism spectrum disorders. They provide a mother’s testimony that this treatment improved her sons’ communication skills, eye contact, and openness to learning new things.

Joseph underwent something similar back in the 90s and staged a temporary improvement.

What’s offered now may be better, more advanced. I have been assured that it is.

Giving it a shot would mean crossing the border, no doubt because it is not legal in the U.S.

Hmmm. Am I ready to do that again? I’ve never based these decisions on whether a treatment was endorsed by the authorities. On the other hand, it was a disappointment to discover that these folks were not more mainstream. Also, while it’s true that I wouldn’t hesitate to trade my right arm for a significant improvement in Joseph’s condition, what they do is not cheap.

All families dealing with chronic issues may not share my fixation on the search for answers. There is, after all, something to be said for acceptance and balance in one’s life. I offer the fact that Song Yi and I were enjoying a poolside party as evidence that we too try to lead a normal existence. However, just below the surface, ready to respond at the slightest provocation, lives hope for something more.