Childhood disintegrative disorder: Bad News I spoke with Dr. Mitra the neurologist from the Cleveland Clinic  that evaluated Gavin this past Monday. She explained to me that they have not seen anyone like Gavin before and so they don't know what to tell us.  She said that Gavin's symptoms don't fit any known degenerative neurological disorder or disease. This may be some exotic or extremely rare degenerative neurological disorder or disease. She also said that they have not ruled out  childhood disintegrative disorder either but that we will need to see someone else for that.. This was literally like a kick in the gut and I immediately felt sick to my stomach. I was hoping beyond hope, that we were going to get good news but this was not the case. We are once again left with…

Emmett is sporting his Thomas the Tank Engine shirt today.  He had speech and OT this morning so he had to get dressed. Once he got his shirt on her wanted his picture taken with it on. He is very proud of his shirts and shows them off to everyone he meets.  It's the way he introduces himself.  Some people shake hands or pass out business cards,  Emmett sticks his chest out shows people his shirt.  

I just received a phone call from Dr. R's office stating that Gavin had exceeded his coverage limits for the year.  They received a letter stating exactly that. Now Gavin is on disability and so is covered by Medicaid.  We have never run into this before and so I'm not sure what's going to happen. This couldn't have happened at a worse time.  We have no idea what new medical care or interventions Gavin is going to need.  I will be spending my day on the phone figuring out what the heck is going on and what our options are,  if any at all.  

Another night of ungodly temperatures and humidity.  Everyone is camped out on the floor in the living room once again. When will the heat wave end?  I heard today we had another 10 days. Hope everyone is staying cool.......  

Childhood disintegrative disorder: Really starting to worry It's now Thursday night and we still haven't heard from the Cleveland Clinic about Gavin. This week I have been paying much closer attention to Gavin's movements. The more I see the more worried I'm becoming. I don't know if maybe I'm just focusing more on this now or if it's really this bad. Gavin is becoming more and more uncoordinated. He's dropping things more and more often. This is honestly starting to freak me out. I have no idea if this is related to his loss of upper and lower peripheral reflexes but in my mind it makes sense that they are related. It's like his body just isn't doing what he wants it to do. That scares me to death, it really does.…

Someone asked me a question today and it got me thinking.  The question was if any of my kids ever have night terrors?  This person was concerned because their ASD has night terrors and they don't know how to help. If you have ever experienced your child having a night terror it's scary and helpless,  ASD or not. A night terror is kinda like a really bad dream that the child is physically acting out.  It's very difficult to wake them from one of these night terrors. In my experience they are very unsettling witness and there was much that I could do but wait it out. Gavin had horrible night terrors when he was little.  I even recorded some to show the doctors because Lizze and I were terrified…

The Radio Android Show raised almost $2000 for the Autism Society last night. I want to say thank you to everyone for their support, especially everyone at Android Activist for putting this together. We definitely raised some money for a good cause and also raised Autism Awareness as well. Thanks again Scotty for having me on the show. - Lost and Tired Post by Wordpress for Android via Nexus S 4G without the use of proper editing tools and disadvantages of a bastardized version of auto-correct. Please Vote for Lost and Tired (just click the link) and help me spread Autism Awareness. Everyone can Vote once a day :)

It's now Thursday and we still haven't heard back from the Cleveland Clinic. The doctor said we would hear from her before Friday. She also said she would call with more questions but she hasn't. I don't know what we are supposed to do for Gavin. Something is definitely wrong and I hate not knowing what we are up against.  I hate being in the dark..... - Lost and Tired Post by Wordpress for Android via Nexus S 4G without the use of proper editing tools and disadvantages of a bastardized version of auto-correct. Please Vote for Lost and Tired (just click the link) and help me spread Autism Awareness. Everyone can Vote once a day :)