After my last post, I ended up messaging Dr. Linn Dyken back, thanking her for her prompt response. (5 weeks)
I then asked her if she could recommend a colleague who is also a sleep specialist. I asked for clarification on the ADHD issue. (More specifically, I asked of educational setting changes one’s diagnosis/who a person is. Does a person have a diagnosable condition, regardless of setting, or do their diagnoses change based on where they are? And I suspect the answer is more “varies depending on where they are” than she is willing to admit, lol.)
I got a response with zero answers but the doctor kiss-off of “Teddy is lucky to have such a strong advocate.”
I did, however, finally figure out how to get ahold of the neuropsych doctor who we saw initially (tip: don’t call CDD because they’ll pretend they have NO IDEA who that person is). I laid out the whole thing for her. a) I didn’t feel we still had any real answers – we had some pieces, but nobody seemed to be interested in putting them together b) Our experience at CDD was very frustrating and we are never ever returning, does she have ideas on where else to go c) What are our next steps
She wrote back, a 5 ish paragraph email, within 8 hours.
Neurocognitive Deficit is a generic term that means some cognitive issues are present, but given mixed findings and due to age, there isn’t anything more specific we can say at this time. She thinks/hopes as he gets older, we’ll be able to better suss out what the actual problem is, and hopes to see him annually or semi annually.
She expressed general uncertainty about all his other “things.” CDD said he doesn’t fit the criteria for ASD (but I’m not sure I believe them), but he’s confusing enough for them at this point that it’s hard to say if he has something like OCD or an anxiety disorder, or if it’s just his age (which I don’t think it is – he’s not really like other kids his age), or if it’s just ADHD, which can cause similar symptoms in some children. So an official, “I’m really not sure, but let’s keep watching and see if we can figure it out” is better than “kiss off.”
Also, she said he absolutely fits the criteria for ADHD and no, being homeschooled plays no role. She was waiting to read the reports from others, and her main hesitation is age. She doesn’t prefer to diagnose kids this young. That said, she did end up making that diagnosis and sees this as his prime issue at this time. The OT at CDD seemed to agree, blaming lack of attention and focus for his very poor fine motor skills. She thinks there is more than just ADHD going on, but addressing that first will make it easier to sort out the other things. But her only idea for addressing it was meds, and I’m not sure I’m willing to go there. There has to be someone who can help us without meds. Who that may be… I don’t know.
So, here is the state of “special needs” help in Iowa. The two main multi-disciplinary places are ChildServe and CDD. I’ve never met a family who was happy with CDD. The doctors I know at UI generally all agree that it’s awful. There are some good people there. But the overall experience, and the developmental peds in particular, are not good at all. Then there’s ChildServe, which also has good parts. But most parents I know walk away from their therapy experiences at CS feeling very dissatisfied. There is also a general sense among parents I talk to that ChildServe overdiagnoses kids to funnel them into therapy because that’s where they make their money. (That was certainly our experience.) (And I’ve talked to a few friends informally who formally worked at CS who have said much the same thing. We’re using Blank Peds Therapy right now, but there’s no overall holistic “what’s going on with this kid” sense I get there. He didn’t walk in with specific diagnoses, and I don’t get the sense he’ll walk out with anything, either.
And not to get all hung up on labels, but I personally think it’s easier to deal with something when you know what it is you’re dealing with. I want to be all “oh, it doesn’t matter what you call it…” but it does. Because how you treat it kind of depends on what the problem is. (I mean, all the ST in the world isn’t going to help if the problem behind your speech difficulties is untreated hearing loss, for example. Teddy can’t answer questions very well – but we would treat that differently if it was stubbornness, vs hearing issue, vs auditory processing issue, vs language issue, vs attention issue.)