Sarah - posted on 11/16/2011 ( 5 moms have responded )
Let me apologize, in advance, for the book I'm about to write! I have never posted here, but enjoy reading and learning from everyone. Thanks to all who are willing to take the time to read all this!
My daughter is six years old. I just got a call from the school nurse that she has come in for the last few days around lunch time complaining of a belly ache. She does not want to eat lunch. She has not complained at home and has been eating just fine. This makes me think there must be something else going on. She has told me in the past, and apparently has also told the school nurse, that she doesn't like people looking at her while she eats. This isn't surprising to me as she also does not like to have her picture taken or to be in front of people - she cried at her pre-k graduation when she had to be in front of all the parents.
Here is some background on her: she has sensory processing disorder, ADHD and has several autistic tendencies. I have been unsuccessful in getting a diagnosis for her and have not had any doctors so far who I feel have take the time to listen to me about what is going on with her. She is developmentally behind in several areas including speech and language, cognitively, gross motor and socially. However, she has a great imagination and eye contact. She can be social, mostly to adults, but it must be on her terms. If she iniates it she may have a limited conversation, but if the other person iniates she is not open or able to be social without being very uncomfortable. She is currently in special education due to a school diagnosis of intellectual disability - she does get about an hour per day within the regular classroom. She gets speech therapy but does not receive OT or PT as the school says her problems in those areas do not effect her education. I strongly disagree with this, but have not been successful in getting those for her yet. I continue to work on this. I have gotten her teacher this year to agree to allow her to have a water bottle and I have bought her a weighted lap pad to use in the classroom. The teacher agrees that both have made a huge difference. I don't know what else to do to prove to the school that this effects her education. On top of all this, she can get very aggressive and will try to harm herself or others. When she is having sensory problems this really comes out. I have a sensory diet in place for her, but I only have so much control over what happens at school and she tends to let it all when she gets home in the evening.
I have already seen a developmental pediatrician and a neurologist. She was normal in development, with the exception of speech and language, until around age 3. She had a seizure around this age that did not show on an EEG, but having seen seizures before - this is what she had. Since that time, she seemed to not develop at a normal pace and has been much more aggressive. The neurologist tested for Prader-Willi and she does not have that. They also did an MRI that was normal. The developmental pediatrician gave us a scrip for Fine Motor OT but she has no problem with fine motor - makes me wonder if they listened at all! I still took her to the OT for a period of time. It was her OT who said she had SPD. We had to quit that though as the insurance would no longer cover it. Her general pediatrician only wants to make referrals to these people so I just keep moving along to the next doctor. We are going to see a psychiatrist who I found on my own next.
My first question is what to do about this lunch situation - I have already asked that she be seated at the end of the bench and away from the door. Not sure what else I can do? Second, how can I get the school to give her some OT for her sensory problems. It is obvious that it DOES effect her ability to learn and concentrate at school. Lastly, what are your overall thoughts on the situation? Where should I go next? Do you think she is on the spectrum? I can't help but feel like the doctors should be able to tell me more. Pretty well everything I have learned is from research I have done on my own.