The Monkey

This will be long.

Jagger is doing well. Better, I guess. I don't mean "I guess" in a negative way. I mean we have had some good news, but we still have a lot of work to do. With this work though comes news that everything will be alright eventually. Hopefully. So far it seems.

Starting in January, Jagger has been going out to Orlando to a phenomenal neurophsychologist. He gets tested for a couple hours at a time for everything under the sun. Jagger needed a follow-up to his diagnosis that he got from Columbia. Everyone knows that he was diagnosed as having an autistic spectrum disorder, but was right on the border and Columbia felt, at the time (even though at the evaluation they said it didn't look like he was going to meet the criteria), that he was on the border. They ended up stating that with intervention and treatment for his symptoms that he should be fine. We decided to have him re-tested 4 months ago due to some aggression and hostile behavior along with not understanding some of what was going on with him in regards to what is typical and acceptable. The hardest thing with Jagger is deciphering each  moment and having to figure out if his behavior is because of his issues or if it is just typical child behavior. Did he just punch me in Outback because the music is too loud, the lights are bothering him, he needs his joints done (something we do at times to keep him calm), a smell is too overwhelming, etc. or is he just pissed because we asked him to sit down? It's hard to figure out what is happening all the time.

So, we were excited about Dr. Gorman because he had a good reputation and he has a lot of experience dealing with sensory processing disorder and autistic spectrum disorders. Jagger finished up his testing and I met with Dr. Gorman 2 weeks ago. I absolutely love this man. He seems to be like the kind of guy you can bbq and enjoy a beer with. He is so laid back and relaxed and really made me feel welcome and spoke in my terms, not "doctor speak" (which I have actually gotten pretty good at).

He said that for right now it looks as if we can drop Jagger's spectrum diagnosis. Jagger is now "socialized." It almost sounds like he was an aggressive dog or something. "Socialized." There really is no other way to say it though. One of the big issues Jagger had was that he was not interested in other children. His peers and older kids he would go so far as to turn his body away if they tried to make eye contact. One child at the park was trying to look Jagger in the eye and Jagger kept turning his body away. The ended up walking in a circle with Jagger a step ahead. The kid just gave up and went to play on his own. In the beginning of school last year his teacher said he might just be behind and just playing along side his peers and it wasn't too uncommon at almost three. Mid-year though she mentioned that he seemed to be getting more reserved so she started making him sit next to her as her helper in the beginning of the day when they did songs and whatever else they did. It helped him a lot even though he still didn't really have any friends. This year he was slow to make some friends, but he now has a best friend/girlfriend who he kisses and holds hands with all the time. He apparently also is "one of the boys" now. That took a bit, but he plays with the boys in his class a lot now. Well, when Paige and Linda are not there at least. My boy love the ladies. Linda has down syndrome and doesn't speak at all, but she loves all over Jagger all day long. She is always hugging him and trying to cuddle him. I have to admit that when I go pick him up, I get just as excited to see Linda. She is so tiny and precious and I just want to take her home with me and get cozy. Anyway, Jagger is now "socialized." Eric came home from the park a few months ago and said that it was so cool because Jagger went up to some kid and just started to play with him. It was new territory for him and it was cool. There are still days when he needs a little nudge, but I think that is now more typical of his age than of his issues.

Now, we have been able to drop the ASD diagnosis, but Jagger still has Sensory Processing Disorder (it used to be called Sensory Integration Dysfunction). This is not at all a shock to me and my mom looked at me (she was there also since she is a HUGE factor in my weekly help with Jagger and has taken his issues on like Eric and I have) and said, "no surprise there." Dr. Gorman laughed and said he was relieved that he wasn't telling us something we were going to be upset about. Gorman explained it this way: My mom was sitting on the couch listening. She was able to listen and comprehend because all of her senses were working and processing properly. Now imagine if she noticed the hum of the light, the feel of her watch on her wrist, the way her shoe was sitting on her foot, the smell of the couch, the loudness or quietness of Gorman's voice, and the way her hair felt on her neck all at one time. She wouldn't be able to concentrate. When that happens in the brain, the body checks into fight or flight mode which is why many people with sensory issues are angry, hyper, irritated, etc.  When they body is in fight or flight mode, it's checked into a high stress setting all the time. Once it get's too hot, it's very hard to get it back to normal. It needs interventions to do that.

We found out that Jagger has issues with speech reception and verbalization. He tested above in language skill, meaning he has a great vocabulary, but it's understanding what people are saying to him at times that gets him. He also has a hard time remembering what he wants to say so he repeats A LOT. A typical sentence will sound like this:

J: Mom

M: Yes

J: I went to the store and I. I went to the store. I, I, I went. I went to the store and I got. I went and got. I went to the store and got a ball.

At times he will be halfway through the sentence and forget what he said at the beginning and start all the way over. Sometimes he gets frustrated and mad. Other times he just takes 8 years to say 5 words. We are so used to it that we usually don't notice it.

He also can't do puzzles. I knew this though. They gave him very, very basic puzzles (the kind for 2-year olds) and he could not get them. He couldn't remember certain patterns when they did some sort of block set up (except the two really hard ones that most kids don't get, he did) and he had a hard time doing some mazes. He also couldn't do hand shapes. He could make the peace sign and the "a-ok" symbol, but the other 8 pictures he couldn't copy. He couldn't remember certain letters when they showed him what they were and then removed them and asked him. There were other things, but that is the main stuff.

The thing that is funny though is that people know Jagger for his memory. He saw the PA at his neurologist last month and Jagger asked her were her glowing ball was. He was 2 the last time he saw her and she was shocked that he remembered. He remembered things that most people don't. He has an uncanny ability to remember directions and how many different ways a person can go to get there. Dr. Gorman said that certain parts of the brain work certain ways when it comes to memory.

The funny thing is that if we were going to medicate him for this, if his behavior was so out of control, that he would be medicated with the medication that he is already on for his epilepsy. So we are essentially getting two bangs for our buck.

He said Jagger was very, very bright. Unusually perceptive and funny for his age. Related very comfortably with the testers, but definitely wasn't out of the woods yet.

He needs speech therapy (we have already known that and were waiting for him to get his tubes and now will get one in Texas) and Occupational Therapy with a non-school focus. Most OT's in the school system work on sensory issues that focus on making it possible for the child to sit and listen and learn. He said he recommends OT's who focus on all aspects of Sensory Processing Disorder so that he is being helped with all issues and not just the ones that will get him through school. He needs to be able to go through life productively. With that, he feels that he will be fine. That once he learns some self-regulatory behaviors and gets a handle on some out of control sensory dysfunctions, that he will be just fine.

Yay!

Comments

[Nichole]

Wow! That is alot to process! But, I am glad that things are going well for Jagger. He's such an amazing little guy! :)