Hello, I am brand new to the forum and I wanted to introduce myself. My name is Angela and I am from Arizona. I have two kids, a boy and girl - names Christoffer and Sarah. I have concerns that I have brought up to my pediatrician about my son but he thinks I'm overreacting.
First, my two kids are two opposite ends of the spectrum. My daughter, a boisterous, outgoing girl, does not display any repetitive behavior or strange capacity for knowledge at her age. She's very smart, but not to the point I am worried.
My son (now 4 years), on the other hand, has been diagnosed with a rare disease called FMF (Familial Mediterranean Fever Syndrome). This is somewhat off-topic, but I wanted to give a background for him in case his illness could affect his behavior. He was sick for the first 3 years of his life with recurring 105-108 F fevers with no explanation (it was a nightmare figuring out what was wrong with him...) Sooo, now he is diagnosed and on a magic pill called Colcrys that keeps his fevers in check. He also has ataxia because of a cyst in his cerebellum, so he lacks gross motor coordination. Can't go down steps and can't go up steps by himself. He can't jump off things onto the floor, climb ladders, or anything that calls for gross motor skill use. He has a difficult time running as well.
He's always been very disciplined regarding organization. There is a car bin, a lego bin, and doll bin...etc...He has to have an order to everything he does, or he is not happy. When he was a baby, he would not make eye contact with anyone. We worked with him at home and he finally got past that at around 18 months. He also could not clap or wave until he was around 2 years. He did, however, speak very early. He started talking at 9 months. Full sentences at 13 months. Did not walk until 18 months. He tested in early to Kindergarten, because he is at the level of early reader. He does basic math and understands many concepts. The only reason the school did not want to move him up is because in Preschool he has issues with focusing on the teacher and not paying any attention. He "is in his own world" as they have told me. He does interact with people, but usually is just an observer. He plays beside kids, not with them. He repeats himself *constantly*. I mean, when I say constant, I can tell you he has said in the last 5 minutes, "The rocket is really hot. It has fire on it. The rocket is really hot. It has fire on it...." times 10. I try to divert the conversation by asking why the rocket is hot. He most of the time won't answer and will just continue to repeat. He also talks REALLY loud most of the time. He does not have any hearing issues, but his voice just carries.
I've brought up these concerns to my pediatrician and he agrees my son has some OCD or Asp type behaviors, but he isn't too keen on "labeling" him. I am terrified he will get into middle school and get made fun of for being different. I don't mean the average made fun of, I mean the kind that breaks kids. Other kids won't understand him and think he's odd. My husband is supportive and also agrees there is something different about him, but is afraid to label him too, afraid that he will be considered special ed, even though he is extremely bright. So sorry this post is rambling...I am just worried.
19 Jul 2011, 7:13 pm
