[WARNING: This is a post unlike that which usually gets posted on The Dojo. I'm not modifying the content direction of the site, though. I've also trimmed out a lot of detail, so this is, by no means, an exhaustive history of my daughter's issues. -Ed.]

No. I’ve not composed a grandiose ode like Beowulf of anything. I just though I’d fill you in on what’s been occupying my time of late. Sadly, its not a technical thing or some new gadget. Its my daughter. She was born Autistic and with significant food allergies. A couple of years ago she started having seizures. Were it this simple, though, I’d be pleased as punch. Not that she has these challenges to deal with, but… you’ll see in retrospect. Some years back when we tried to place her in school (she’s now 11) we started to hear from her teachers that she was having difficulties. Not long after that, the school “declared” that she had ADHD (Attention Deficit, Hyperactivity Disorder) and demanded that we medicate her. We disagreed, myself having spent my youth with ADD around my neck like an Albatross and her issues being nothing like mine. 

Needless to say, that started off a long round of tests with a wide range of professionals. In most cases the results clearly indicated High Functioning Autism with dozens of small, related sub-diagnosis which poor, old dad doesn’t quite recall. We figured out the allergies when one day she came home from daycare with a cold. We stopped giving her milk for a few days and, miraculously, the horrible coughing and wheezing went away. The minute she had any dairy, it returned. Later we would find that she is allergic a wide range of foods and additives, so she has what I call a “Whole Foods Diet”. We were able to arrange several different services for her through New Mexico’s liberal services department, but when we moved back to Los Angeles, that’s when the game changed, and that which forms the basis for my lament.

In California, when one has a child who needs services one is protected by a State law called The Lanternman Act. The physical representation of this law is a network of Regional Centers (RC) which dot the state. You simply apply for services, they determine if your child is eligible, and if you are, you get services. Simple enough. We were living in Monrovia at the time, so we applied at the local RC. We handed over copies of all of her documents and they looked them over. To our shock, the RC determined that she was not eligible. Since I had started working in Long Beach and was no longer in the regional covered by that RC, we stopped proceedings there and restarted them at the RC in Torrance. They were quite nice and very forthcoming, but when it came to seeing my daughter as eligible, they also denied her. 

Now, at this point you might think that my wife and myself just got it all wrong and were barking up the wrong tree. We were, and are, not. At about this time we met up with a neuropsychologist in Irvine who also happened to be associated with the RC in Orange County. He started seeing my daughter and testing her again and had come, again, to the determination that she is Autistic. We also started hearing bad things about the RC’s we had already tried, but that the West Side RC was much, much better so we should move there. We did so, and moved into Los Angeles, directly in the area of the WRC. Again we met a range of professionals purportedly dedicated to providing services for children who needed it, assisting them in the challenge of becoming productive members of society, or at least the best they could be. 

To our shock and surprise, they denied her entry. This time we protested and it went to a court called the Office of Administrative Hearings. In this “hearing” the judge listened to both sides of the case (my wife represented our daughter without a lawyer since we can’t afford one), dealt with witnesses, and slogged through all of the data which my wife and myself painstakingly copied over and over and over again. In the end, this “judge” decided that my daughter was not eligible for services based on a single report from a small EEG study performed by UCLA which even stated that she was Autistic and ignored all of the other data. At this point she had already had a couple of seizures and we were getting frantic. The WRC counsel argued that she hadn’t had enough seizures. We managed to locate a lawyer who would take care of our appeal pro bono, so we started down that road. 

Despite the number of failures we had already faced, nothing prepared us for an appellate judge who decided to act as judge and psychologist and actually pronounce that, based on what he’d read in the report from WRC, he didn’t “think” my daughter was Autistic. I was starting to question why all of these people who a) had money to lose and a budget to manage or b) had no training in the skills necessary to diagnose Autism were getting to decide the fate of my daughter. Meanwhile, she was having more seizures and the medications weren’t working. She was getting hostile and self destructive, so we had to take her off the medications. When it became clear that we needed to make sure she was covered medically no matter what, we filed for SSI. They asked us to go see their doctor and we filed all of the necessary paperwork and it was then just a waiting game. 

One night, while getting ready for bed, she had another seizure. This one was more pronounced than the others, but she is still conscious and aware that she is having a seizure. She was very unhappy and fearful of these ongoing seizures, but she eventually went to sleep. The next day she still hadn’t fully recovered, having difficulty operating the left side of her body. It took two full days for her to start moving and speaking mostly normally. We took her to see a new neurologist, and he was helpful. He also wanted her to have another MRI. Fortunately, the MRI returned clean, so she’s having seizures, but not because of some tumor or growth. Then we get word back from SSI. She had been declined. The reason given was because she’s not disabled enough.

So, here we are. Its not the usual story which gets posted by a gadget blogger, but its my life and what I deal with which causes me to sometimes not update as much as I’d like to. It makes me proud that I can say that I have over 140,000 readers who come to my site and read my words every month, and that number is growing.

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