Searching for answers

We had Dale seen by the developmental pediatrician at Phoenix Children's hospital almost two weeks ago. She spent 2 hours with Dale and I, which I was happy about. It might seem like overkill, but I imagine the multiple diagnoses are for insurance and therapy purposes. We still don't know the causes for Dale's delays, and I wonder if we ever will. The good news is autism has been ruled out, but sensory processing disorder (and of course ADHD, though the two are often confused) has not. Dale is still in preschool 3 days a week with an IEP, and I started him this week in another preschool class through the city on T/Th. He is so big for his age that I really don't want to hold him back from Kindergarten this year, so we are going to do all we can with preschool and therapies to help him catch up. The pediatrician kept talking about how big his head was, coupled with being so tall and having such big hands, knees, and feet. I told her his size was normal (she quickly interjected that it wasn't normal, lol) and I explained that I have very tall and large boned people in my family and she suggested that perhaps "Soto Syndrome" runs in my family but has never manifested itself until Dale. I'm honestly not worried about it and don't think he has it but as part of the process of "ruling out" diagnoses we have to get genetic testing. Dale also failed his hearing test (with mild to moderate hearing loss) with the audiologist but he had fluid in his ears and the audiologist felt that the fluid was largely to blame. Unfortunately it is a $100 copay for that test and now we have to go back for a follow up in February because hearing loss needs to be ruled out as well. Dale still had fluid in his ears (but he has no history of ear infections) when we saw the pediatrician a few weeks after the hearing test, and still today when we saw our regular pediatrician. He will be on antibiotics and some allergy nasal spray to clear it up so he can pass the hearing test.

Dale is really responding well to his Occupational Therapy and loves going. He now recognizes almost all of his letters and almost all his numbers 1-10. He still isn't able to write his letters but we are working on it. Coupled with his developmental delays are his pretty extreme (in my opinion) emotional sensitivities. It is SO hard to get him to do anything that requires any inhibition or is something he doesn't want to do. He cries and wails and retreats any time he doesn't get what he wants, but not your typical temper tantrum, but an emotional "I can't handle this" cry. It's hard for me to describe. Most everything about Dale's personality is hard for me to describe, other than things are "off". One thing I can describe, though, is that underneath it all he is an incredibly sweet little boy. My hope is that we can use behavioral modification to help his behavior and postpone any medications for as long as possible (preferably after puberty). His behavior hasn't been a big issue in preschool, but being in Kindergarten all day might be difficult for him.