Frustrations

There's a bit of a political bent to this, so I'll warn you now.

I simply cannot wrap my head around the availability for services that are out there for children with cancer, leukemia, diabetes and countless other health problems. Not that these children shouldn't get help, but why isn't there also an autism network that is equal to this? Is it because there are so many kids with autism? Is it because of the fighting within the community on how to effectively treat autism?

I don't know the answers.

I do know that I'm frustrated every time I try and figure out how to convince Derek's insurance to cover anything. I'm frustrated that on one side I'm told a state mandate isn't a good idea because it will make insurance rates rise and I won't get much support on the R's side. I'm frustrated that politically every one wants to push autism back and forth on each other. "It's the school's problem!" one side claims. "But its a mental health issue!" is the comeback from the other side.

WHY is my child's future and how he will function a political issue? What is wrong with this picture? I don't see the R's and D's sparring over childhood cancer, or juvenile diabetes. So why is wanting some help such an issue?

I haven't even been able to write about the parity bill meeting, because I walked away shaking my head. What a mess. It would be great of what comes out of it won't allow autism to be excluded, but even then, I don't see it doing a whole world of good.

What we have is a network of DAN! Doctors who can easily charge $200 per hour, not counting labs. I'd say 90% of health insurance companies won't cover a dime of it.

We've got the Pfeiffer Treatment Center back east, once again huge hourly rate and insurance not willing to pay. Pfeiffer does have a financial help program, I'm not sure on the specifications, but I'm willing to guess that an average family making $30-$50k a year won't qualify, and simply cannot afford those sorts of visits.

We also have the Autism Treatment Network that is gearing up. The plan to be at 6 major teaching hospitals across the country, and I'm lucky, very lucky, to have one less than an hour away. I have no idea what will become of the ATN, and if they will be able to have procedures covered by insurance of if they too are just going to become the next expensive treatment to add to the list.

Sometimes, as a parent, you just feel so lost in all of this. You know in your heart if your child had cancer, or leukemia you could find a multitude of places for help, some even covering most or all the costs. You'd find hospitals and resource centers of support with open arms and willing help.

We have the internet, a few conferences each year that also cost, so you need to decide if that plane ticket and conference fee is worth it, or if its better spent on a DAN! visit or a couple weeks of ABA, and not much else. Its sad, and I can only hope that one day, that having a child with autism isn't a political blunder, but a story of hope, help and a road towards recovery.