Update on Caleb

So I have been putting off on giving an update on Caleb. I know many of you have asked how his appointment at KU Med went. We appreciate your concern and thankful for the prayers.  He started getting scared the closer the day came and the day of he did great.  If he was scared that morning, it didn't show.

First off I'd like to say we are not looking for a diagnosis, rather just the help he needs to continue.  The appointment did not last all that long.  Two hours from the time we checked in, to the time we walked out.  They interviewed Heath and I while we watched Caleb play through a two way mirror.  He did play pretty well, that has never been a problem with adults and we told them this.  They also played with a baby and bubbles most of the time.  So they didn't get to see him with the items he is normally playing with.  Then we saw a doctor that checked him over, listened to his heart and had him walk in a straight line.  After that we waited while they came to their conclusion.  It was that he is not Autistic and needs to learn to be flexible.  They stressed flexible over and over.  We should teach him the word and help him change.  I'm not sure what being flexible has to do with lining your cars/trains up when playing with them or having all of your books in a row so you can see them all.  It would be nice if in his routine he was more flexible when things change last minute but he is a lot better with this than he was in the past.  And be flexible in his eating.  He is a very picky eater.  Very.  So we took their recommendations and have started to have him try one bite of whatever we are eating and then he can have his usual, which is only about 5 or 6 foods.  We tried for the first time last night, a piece of hamburger.  They ate them at school that day for lunch, well he didn't but the other kids did.  This worked great because he said his friends all liked hamburgers.  He was nervous to take a bite but excited because everyone else likes them.  He did take a bite, and then threw it all up.  Bring on the horrible parent feeling!  We will try again another time but we are giving him a few days.

We agree he is not Autistic nor does he have Aspergers, however there is another diagnosis on the autism spectrum.  It is called PDD-NOS, which means Pervasive Developmental Delay-Not Otherwise Specified.  It is on the low end of the spectrum, meaning the child has some of the symptoms/characteristics however not enough to be diagnosed.  In my mind this is Caleb.  He comes home crying when he has to move his clip down at school or if one of his friends does.  There have been a few times he says one child was teasing him and they had to move their clip down.  Them having to move their clip down hurts him more than the actual teasing.  And there are several other concerns we have.  So after no getting any returned phone calls from KU Med we are getting a 2nd opinion at Children's Mercy.  If they can give me a better explanation other than teach him to be flexible, I will be okay with that.  On the summary they said he is great at puzzles...how would they know?  They never got one out. This means we are not done with this process and after talking with his teacher and those that help him at school it was agreed this is the next step to take with him.  So we are asking for continued prayers.