Preparing for another round of no answers

[egoldber]

it's not so much that i wanted a label, as that i wanted clear suggestions as to how to "fix" the issues. and in my mind, if you can't really tell me what's going on, how can you really tell me how to help fix it?

I get that, but it may not be a realistic expectation. In my experience, issues change over time. The intervention he needs now may not be what he needs in a few years. I would try to concentrate on understanding what his biggest 1-2 issues are at the moment and work on solutions for those concerns. And be prepared for things to change to re-evaluate what intervention is needed every few years.

But it is so frustrating when there is no clear cut answer! My older DD is like this. Overall lots of quirks and issues, and very little actually diagnosable at the clinical level.

[sste]

LMH, in your shoes I would just try to nail the question to the tester in a direct and personal way. I would say to her, "I understand there are gaps in DS's diagnostics and he does not fit into a clear category. I understand that there are tons of research gaps/missing research for clear categories and obviously very little research for kids like DS that don't fit into one category. So, I understand that it is difficult to make evidence-based recommendations to me. Given what you know of DS, your feeling for trends and promising directions in the research, IF THIS WAS YOUR CHILD and you had to go with your best vibe about what to do next, what therapies/approaches would you try and in what order of priority." And have your pen/paper there to write it down. If your meeting has occurred email her this follow up.

IME, providers respond best when you personalize it to them (if this was your son). Also they are worried when there isn't a clear category and clear research to support a treatment plan. They want to follow the evidence and research and don't want to have other people tell you later, "there is no evidence for what Dr. Tester recommended to you." You need to let them off the hook, make clear you know that there isn't adequate research and you are looking for her opinion about what she would do in your (layperson's) shoes.

HTH.

[westwoodmom04]

I have a friend whose son is very much like yours. Very bright but does not like new places, often refuses to leave the house, never been one to play with toys for long. Classroom behavior (ability to pay attention in class, stay on assignment) become an issue after K. They went through a trying year of testing where no diagnoses really stuck though he was diagnosed at various points tentatively as asbergers and then dyslexic, though neither really fit him. However, the ultimate diagnoses was severe anxiety. They are now working with a psychiatrist who focuses on children with extreme anxiety recommended by academic pediatric hospital and are sending him for the next year or two to a private school for children with slight learning disabilities where he will spend most of the day with a one to one or one to two teacher student ratio to help him overcome classroom performance anxiety and hopefully get him back to a mainstream school situation (most likely another private for small class size). This may be totally off point but maybe worth exploring further if your son's anxiety could be driving most of the other issues you are experiencing.

[daisysmom]

LMH, in your shoes I would just try to nail the question to the tester in a direct and personal way. I would say to her, "... IF THIS WAS YOUR CHILD and you had to go with your best vibe about what to do next, what therapies/approaches would you try and in what order of priority." And have your pen/paper there to write it down. If your meeting has occurred email her this follow up.

IME, providers respond best when you personalize it to them (if this was your child).

HTH.

When my dd had s large complex hemangioma as a baby, I was so confounded inmy doctors on how to proceed. My dad and my fil were both doctors. My dad encouraged me to say this same thing "if she was your child, what woukd you do". I did that with our surgeon when dd was 3 and got an amazing moment of clarity. Then this year when dd had a (likely) febrile seizure after having an (now unlikely) diagnosis of asthma, I said this in ex to the neurologist "if she was your granddaughter, what would you do". Again, it took the conversation down to a very very meaningful level.

So just wanted to pass those on.