I have been reciting the Serenity Prayer to myself all morning as Gavin is in rare form today.  He's not misbehaving or anything like that but he's talking about random things in a nonstop manner.  As terrible as this sounds (and I know it sounds terrible) Gavin is basically think to breathe anymore.  I don't know how else to describe it. I think Lizze said it best the other day.  She said,  "Gavin is chronologically 11 years old and emotionally 3 or 4 years old.  It used to be that It used to be that Gavin would mostly act 11 and sometimes act 3 or 4. Anymore however, Gavin is mostly 3 or 4 and only sometimes acts like he's 11.". Does that make any sense? At the risk of sounding…

  I haven't said anything about this until now because I wasn't sure exactly what was going on and I didn't want to say something until I knew for sure. However, today it actually happened. The Foundation for Community Betterment   Earlier this year I was contacted by a friend from high school, Denise. She had been following our story and had actually been helping me out with some logo art work. She is a member of an organization called The Foundation for Community Betterment. Excerpt from their website:  "The Foundation for Community Betterment is a national organization dedicated to community enhancement by creating an immediate, positive impact on the lives of individuals or organizations that share our philanthropic vision, but who currently lack the means to succeed."  The recipients…

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…