Sunday, March 27, 2011

The unknown

Thursday I received a call from medical(yeah, military, we call it "medical") and they had scheduled my oldest son, Anton, an appointment with a neurologist. This seemed like a godsend since we had been trying to get him in to see one for almost 8 months now with no luck. However, the reasoning for it is completely different than what we were looking for the initial appointment.

Back story:

Anton has always been a little different, a little quirky. He's done things in his short little life that have made me giggle because of his meticulousness. He would line his crayons up at the end of the counter top end to end right along the edge. He'd go through the recycle bin and pull out the 2 liter soda bottles and line those up in the entry way to the living room and stack them as high as he could.

And then there were the few things that weren't so funny. The things that made me wonder if he was "okay" or if there was something I should be concerned about. The vacuum cleaner was the scariest monster in the world.  If I turned it on he instantly went upstairs to his room to the farther corner next to his closet and hunkered down and shook like crazy until atleast 15 minutes after it was turned off. I dealt with this until he was atleast 3 1/2. The other thing was the "tantrums" as everyone else around me called them. They weren't tantrums. He wasn't trying to get his way by throwing a fit it was just like he would get overloaded or frustrated and had no idea how to let that out so there were "meltdowns" daily. Then to top all this, he never slept. He'd go to sleep at 2:30 in the morning at be back up between 5:30 and 6 am.

I became pregnant with my middle child, Aiden, when Anton was battling a lot of this. Near the end of the pregnancy the lack of sleep and constant stress of dealing with him got to me and I finally took him to medical to see what could be going on. They insisted he be taken to Yale to do an autism evaluation. My husband "put his foot down" so to speak and wouldn't ALLOW me to take him. He felt that the stress of the pregnancy and him being gone all the time underway on the submarine that it was just me getting worn out.

Well, then we fast forward 3 years when Anton begins kindergarten. He scored 37 on his entry testing where most other students in his grade scored 75 or higher. It wasn't that Anton didn't know these things, it was that he wouldn't speak to the teacher to tell her anything. Now we are over midway through the school year and Anton is facing retention because he's just not "producing" in class. The teacher doesn't feel retention is what he needs, but because of funding issues he hasn't been able to get the testing through the school to get him services. I've been fighting to get some sort of diagnosis that would require the school to give him help. We've seen a psychologist who refused to diagnosis him because he felt he was "too young" but that he did show signs of Asperger's syndrome as well as ADHD. He continues to go to occupational therapy once a week to work on his fine motor skills and sensory development. We'd been waiting to see a neurologist to rule out autism so that was what I thought this appointment would be for.

However, his pediatrician who looked over the reports from his OT said he feels he may be showing sides of neuromuscular disorder. I've refrained from doing internet research, I just can't bring myself to that. I'm praying that we have good results tomorrow and that everything is going to be OKAY and my baby boy is healthy and will be just fine.

Have any of you gone through this? How did you keep sane? I'm basically a one man show here since my husband isn't supportive of any of the testing and I live 900+ miles from family.

So if you could just say a prayer for him or send good vibes or whatever it is that you believe in because we could surely use it.



Rachel said...

I'm sorry to hear of your struggles. I hope the doctors can give you some answers.

Joelle said...

((HUGS)) and prayers headed your way!