All About: Kamden

We are now halfway through the school year, and thankfully Kamden is seeing some improvements. 

• He can almost write his name and can finally cut out things with scissors without cutting through the pictures completely.  
• He is regularly (at school at least) initiating going to use the bathroom, and most days comes home dry. 
•  Last Saturday, he was presented with a therapy bike called an Amtryke. His is equipped with both pedals and hand cranks and should help build his muscle tone. (One of his diagnoses is motor apraxia.)
• Most nights, he sleeps through the night with no night terrors and wakes up dry.
• The school is supposed to be trying to get a special needs aid to sit in on class with him to be a one on one help.

Sadly, there are still a lot of things to work on as well.

• He still is considered about 3 years behind on his basic motor skills.  
• He is not able to recognize the physical cue to have a bowel movement.
• His mild OCD seems to be progressing as does the ADHD.  It is to a point now that they are talking about removing him from the classroom for reading time because he's unable to control himself long enough to sit through a story.
• His muscle tone is still considerably low compared to where it should be.

There are also some things that we are seeing we will not be able to work around or predict when they will affect him.

• There are days he craves lots of activity and sound, but like the flip of a switch those same things can cause him to freeze and cry out in actual, physical pain because it is suddenly "too loud"/"too bright"/"too busy"/etc.
• He is always going to fixate on things that don't seem to make sense or bother anyone else.  We took him to look at Christmas lights last night.  He had one time seen something on TV about Christmas lights causing a blackout, and for the better part of the time we were gone, he kept telling us he needed to go home and make sure there wasn't a blackout.  By the time we got home, he was nearly in tears.  For another example, he freaks out if ANYONE is crying.  If it's a small child or baby, he will make us go and find them to calm them down.  While this is incredibly sweet and it's SO good that he cares about others, it becomes nearly impossible to show negative emotion around him.  He will get to the point of screaming because he's hysterical that something is horribly wrong with you.
• When something overwhelms him, he will likely not be able to verbalize what is wrong.  He tries and struggles to tell us, but 95% of the time ends up in tears, repeatedly saying, "I don't know... I don't know...  I just don't know...."  
• There are certain things that have to be just so and if they are not, he will not be able to relax or rest until they are.  
• There will be days that no matter how much we need personal space, he will need physical contact and closeness far more.  This will mean he will rub his face on us, need to pat or tap us, hold our faces, or be inconsolable if we are not in contact with him.

So, what are we going to do?

• Kamden is being reevaluated for physical and speech therapy this week.  He will continue occupational therapy twice a week and will possibly have the other two added in.
• We will be having him ride his bike several times a week to help build up his muscle tone.
• We are going to attempt, again, an intense potty training during his Christmas break.
• We are getting him in for a repeat MRI to check his bilateral ventriculomegaly and agenesis of the corpus callosum.  Hopefully there will be no change and we will not be looking at shunt placement.
• We will be working to get him back in with a behavioral psychologist to see how behavioral changes can help with his overall well being.  

Here's hoping. :)