divided front.

Pretty much everything I have read that has been written by parents of Autistic children say the same thing...a subtle warning to prepare yourself for hitting about 900 roadblocks when it comes to therapy and decisions and whose opinions count and whose don't.

A month into this and we hit our first one. And yes, it has to do with PECS, that I mentioned in the last post.

I kinda sorta saw this coming but I was trying to ignore my gut. Something, that yes, I know I should not be ignoring. But you know when you're being thrown into an entire new world of things, you tend to not know what to think or what to trust.

So Justin took the girls to speech today. He offered and I took him up on it, giving me a chance to do some much needed deep cleaning in the house without the girls present. In all reality, I should have taken the opportunity to take a nap or enjoy a moment of my life without kids, but of course the practical side of me saw an opening in the war of mom vs. house + kids.

He asked ST if she had talked to Dr. MAL about PECS and unfortunately she had not had that conversation yet with Dr. MAL. So Justin informed her of our decision and from what he said, the defense gear came on. And thus begins the battle of whose therapy is the best therapy. Really. In 2010, we are still dealing with the SAME issues that Catherine Maurice dealt with in 1987?! Really?!

It makes my blood boil. It really does. Because I don't care WHO is right, I just want my daughter. I just want her. I don't want to win awards for finding the best therapy options in rural America. I don't want to be recognized as some kind of pioneer. I want my Maddy. That's it.

Instead I'm getting a frustrated and anguished little girl whose world is slowly being swallowed up by a big black sea. All I want to do is rescue her and I'm grasping at as many red lifesavers as I can.

And not only was the defense gear on but so was the offensive gear too...specifically towards Dr. MAL and how ST thought her ideas were "out there". (In Dr. MAL's defense, she spent her entire grad program in Autism and studied under Dr. Mulick who has ties to Dr. Lovaas, the pioneer himself...Mulick who has his own success rates with EIBI and...blah blah blah...she knows her stuff. Alot of people still think Lovaas was a robot creator and not really helping children recover from Autism) ST then informed Justin that she studied at a specialized school for autism..therefore she knows how effective PECS is. Which Justin raised the question that if she studied there then why she she only doing speech and not more Autism specific therapy such as ABA or what not. Is there such a thing called a PECS specialist? She might as well be one.

Eventually she realized how she was appearing and gave up to say, "well, you are her parents and you can decide what kind of therapy she receives." Thanks for stating the obvious.

So here we are. I don't really know if I want to continue speech therapy with her...but if not, we're looking at a 3 hour round trip commute twice a week for 30 minutes. Yet, there is a possibility that maybe I could schedule her OT the same day as her speech so at least the trip would benefit twice. As if we're not fighting a hard enough battle with Autism in itself, let's throw in the distance, the remoteness, and lack of professional personnel.

I feel like I'm beating my head against a wall. A rock solid wall.

For the last few weeks I have been physically sick to my stomach at night. I thought for awhile that I had caught a bug but a month later, I have realized that it's me. I'm literally making myself sick with worry. At times in my life, I've lost my appetite due to stress or depression but this is new. I have never felt nauseous over something. So physically ill with worry.

The weight of the world seems to be on our shoulders. The weight of Maddy's world. And every new decision or obstacle adds a few bricks. Because there is no way to know at this point if we are making the right decision. And the dark mud that we are mucking through isn't getting any clearer.

I know that every child on the autistic spectrum is unique and therefore that child's therapy needs to be unique...so why are we attacking the different approaches? Why? Don't we all want the same thing? Our kids back?