Here is the blog post that I wrote 6 weeks ago and couldn't bring myself to post.  I'm posting it now because I'm at the point of accepting all this and it would be nice to have some support if anyone out there knows what I'm going through:

September 17th, 2011

This morning I drove to the new temple site to take a group picture of all the primary children in front of the nearly-complete KC temple.  The Primary president rode with me.  She is the kindest woman and just LOVES my little Jett.  She has a lot of experience with young children.  I asked her the same question I ask a lot of people who have had a lot of interaction with Jett. I asked her if she thinks there is something wrong with him.

See, for the last few years I have had the distict feeling that there is something different about him. Different in good ways of course, but also different in concerning ways.  The way he is so particular about things.  How he covers his ears at loud sounds, and when there are several different sounds at once, like at a carnival.  How he is so brilliant in some ways like spelling large words and doing math problems at a very young age, but he can't understand simple things that we are trying to communicate to him, like basic instructions or simple questions.  He won't look you in the eye.  When I make him look me in the eye, it is very difficult and unnatural for him.  How he seems to completely lack self-control at certain times (like in church) and is in his own little world a lot.  And how he will talk to absolutely anyone with no reserve, and doesn't sense when they are not interested in talking to him in return (breaks. my. heart. But he is blissfully unaware) He doesn't seem to understand a lot of what you're telling him or asking him.  He doesn't "get it" most of the time.  And he is entirely unable to answer any "Why" question.  The word "why" is out of his realm of understanding completely.  

The primary president said that she thinks he may have some degree of aspergers syndrome.

Definition and Symptoms from Mayo Clinic:

Asperger's syndrome is a developmental disorder that affects a person's ability to socialize and communicate effectively with others. Children with Asperger's syndrome typically exhibit social awkwardness and an all-absorbing interest in specific topics.

Doctors group Asperger's syndrome with other conditions that are called autistic spectrum disorders or pervasive developmental disorders. These disorders all involve problems with social skills and communication. Asperger's syndrome is generally thought to be at the milder end of this spectrum.

While there's no cure for Asperger's syndrome, if your child has the condition treatment can help him or her learn how to interact more successfully in social situations.

Asperger's syndrome symptoms include:

• Engaging in one-sided, long-winded conversations, without noticing if the listener is listening or trying to change the subject (Extremely accurate description of Jett)
•  Moving clumsily, with poor coordination (Not Jett).
• Displaying unusual nonverbal communication, such as lack of eye contact, few facial expressions, or awkward body postures and gestures
• Showing an intense obsession with one or two specific, narrow subjects, such as baseball statistics, train schedules, weather or snakes. (YES. For Jett it's numbers, letters and words)
• Appearing not to understand, empathize with or be sensitive to others' feelings 
• Having a hard time "reading" other people or understanding humor (maybe)
• Speaking in a voice that is monotonous, rigid or unusually fast (not at all)
• 
  
• Boys are far more likely to develop Asperger's syndrome than are girls. In early childhood, kids with Asperger's may be quite active. By young adulthood, people with Asperger's syndrome may experience depression or anxiety.

When she said that, it confirmed my fears and was both justifying and heartwrenching.  We talked about characteristics of children she has seen and worked with aspergers.  They all sounded remarkably like Jett: Brilliant well beyond their years with strange, OCD-like behavior patterns and appearing to be lost in their own world.  I fought back tears the whole conversation.  

After returning from the temple, we had a ward Luau in the cultural hall.  Jett, of course, went for the stage first thing.  No one was performing and the curtains were drawn so it wasn't a big deal.  During the meal he ran around talking to and playing with all the other little kids, and talking to all the adults he could find.  (Did I mention that he is INCREDIBLY friendly and loves ALL people?  Even the homeless men in the park the other day were viewed as potential best friends for him, but that's another story.) 

Then there were some performances by Hawaiian hula dancers from Libery, MO. We almost made it through that whole morning temple trip and Luau without any "events".  Almost.

As the dancers were performing, I heard a stir in the audience.  I looked up and, to my horror, saw Jett up on stage weaving in and out of the dancers like an ADD, out-of-control little monster.  I was mortified.  I was so embarrassed that I froze, and I just sat there watching him ruin their performance.  

The fact that I did nothing but sit there and want to crawl into a hole- that was more embarrassing than what Jett did I think.  Stupid Kate. Stupid, stupid!

Luckily two of my wonderful youth girls ran to opposite ends of the stage to get him. They had to pretty much tackle him to get control of him, while his pathetic, irresponsible Mom just sat there and did nothing.  The lady behind me even told me in a polite tone that I needed to go up there and get him.  I wanted to kick her.

So after that the announcer dude thanked all the performers, and thanked "our special guest performer, Jett".  I was too upset to crack a smile.  I just gathered up my children and got out of that church as fast as I could before the tears started flowing.  I have been in tears ever since. What an awful, awful day.  

Pete had to work the whole Saturday, and is leaving for California for a week tomorrow.  Horrible timing.  

Status of all of this as of today, November 3rd:
I have contacted 2 different sources for testing for Jett.  Pete and I have each completed a packet of questions about Jett for ADHD and Aspergers testing.  The results showed a high likelihood of both.  My gut tells me that ADHD is not the correct diagnosis.  But I am fairly ignorant of ADHD so I need to be more educated on it before making any assumptions.  I know there are SO many different forms of it.  


Aspergers seems to be the most accurate description of Jett's behavior.  But he doesn't seem to be very severe. At least compared to the children that I've read about in articles and websites.  Pete and I bought a book on aspergers on the kindle app on our phones.  The chapter that we read seemed to describe Jett, but after the first chapter the book became much more clinical and not useful to parents.  I'm waiting for an official diagnosis before I buy another book.  
We took Jett to a doctor on post and get a referral for him to be tested at the KU medical center. And I've met with the local child psychiatrist two times now. Those appointments were for me only, and the next appointment will be for the Dr. to evaluate Jett.  The waiting lists for these appointments are so long.  It's frustrating because I feel like I'm losing valuable time that I could be working with Jett.  I am doing everything I know how to do right now, but that's not much.  I feel powerless for the most part on how to help him develop normally.  My heart breaks for him when I think about the difficulty that he may have in his future.  I just want him to be able to do well in school and be well adjusted socially so that he will have lots of friends and feel good about himself.  


He is seriously the SWEETEST child. He has a heart of gold.  And of course all young children are guileless, but Jett is even more so than any child I've ever met.  He never gets angry. Never. He get's frustrated, and distressed, absolutely, but never angry.  And he LOVES his Mommy like nothing else!  We have a little dialogue we go through on a daily basis.  I'm not sure where he picked this up (because nearly everything he says is mimicking a TV show or book).
Jett: I love you Mommy
Me: I love you too Jett-Jett
Jett: And that's the best present of all.
Me: Yes. It. Is. (I was directed initially by Jett to say that last line, lol).