Step 1

Still getting over the initial set of emotions, we need to continue to move on, and finding out that the health system is as much of a joke as I have heard rumors about.

First I wou ld like to thank, the many whom have called and given out support.  It’s very much appreciated.  I had a couple co-workers come into my office to talk to me.  I may have seemed cold at the time, but do understand I really appreciate it.  Even if I don’t dive into details, just talking generally about this, makes me feel better.  Jen has gotten lots of text and messages of support and she’s also very appreciative.

I have learned about autism, is that this is a disorder which is more like numerous disorders put together under a single umbrella.  Each person affected by “autism” experiences the numerous disorders in various different intensities, and as such each person with autism, is different from the other.  I want to hear about your experiences, I really do.  I want to learn about all the different things that work, behavioral, bio-medical, communication, social, etc.  I want to hear about your experiences, books you have read, techniques you have used.  Since my child is likely affected differently than yours, I really want to hear about them, but may not follow through with them.  I want to understand all the techniques out there, and how they have worked for others.  Based on what we hear, research and learn, we will act upon it to help our son as much as we can, doing what we feel is best for him.

Dealing with health companies, is a nightmare.  In the state of California, we have Aetna as our healthcare insurance.  Our regional healthcare  group is Hills Physicians Medial Group.  Both have been assholes!  Aetna has finally started listening, however we are still struggling with getting Hills Physicians on board.  It isn’t so much that they won’t provide us with the care we are entitled to, its more that they are making it ridiculously difficult to help us come to, and provide proof of the diagnosis, which entitles us to the care we are need.

It started with a list of doctors for speech therapy, in which half of them didn’t even work with children, and the other half were no longer in business.  Next came their ever confusing process to get the services approved, by the various doctors involved as you are trying to find out what is happening with your child.  Right now we are still fighting to get speech therapy approved (we have been doing it for weeks now), based on the recommendation from a doctor, that they earlier approved that we should have a consultation with.  We are many phone calls and hours wasted away on trying to get this resolved. I’m hoping by Monday everything will be getting their approvals, but guessing that Hills Physicians will likely come up with some other weird process that makes no sense and causes even more delays in getting the approvals done.

The Regional Center, which did the actual diagnosis has been very helpful… but very slow.  They had 90 days from initial consult to doing the full evaluation.  On day 91 we called them, only to be told it would be sometime in November.  With a little persuading from my wife, we somehow got Nov 1 as the evaluation date. Go figure!  We get our diagnosis, then they tell us that because of the new laws which forces healthcare insurance providers to provide all required care for special needs children, the Regional Center has lost much of the State funding it has always relied upon.  They informed us it won’t be until the new year when we can get time with them to sit down and plan on the best diagnosis for Chase.

My child is 4 years old.  I know the most important thing about the treatment of autism, is early detection and intervention gives you the best odds for the future.  Early in this case means 2 – 2 1/2 years old.  Again Chase just turned 4 years old this week.  I don’t have a plan from a qualified doctor on the type of treatments and therapies that would be best for my child with autism.  And now I find out it may be 2 months before I have one… WTF!!!  We know ABA (Applied Behavior Analysis) is the leading type of therapy, and based on what we know of Chase’s severity of his symptoms, it would be appropriate for him, verus the other popular types of treatment for autism.  There are numerous different styles of ABA therapy… which one is right for Chase?

We’re looking at bio-medical treatments as well.  We have a list with a suggested order of things to try from Autism Society that we plan to follow.  The first few items are all different diets and nutritional plans to follow, so at least we can get going on this.  We did have Chase’s blood work done a few weeks ago, in which all of it came back clean, so we don’t have a specific area to target, however we do know some of the gastronomical issues associated with autism are not necessarily detected with blood tests.  Again we are doing this without the advice of a doctor, but since these are diets, which are actually quite healthy, we don’t see an issue with just forcing ourselves to do it.  Heck it might even benefit the entire family.

Step 1: Getting the appropriate care and treatments you need
This is going to be a tough one!

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