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[quote=Anonymous]Ugh this post is hard, good for you for reaching out - my DS also received a very surprising DX right at 3 (Level 1), which came as a BIG SHOCK...it took months to get out of the funk, because I was frankly devastated. I am only a year after able to speak about this anonymously - as we have told NO ONE but his preschool and doctor. Grandparents know because we were so devastated so they knew something was off but frankly they've all blown it off like this is nothing and DS is fine - we're now in the world of too much evaluations and DXing - not helpful, so we've just kept our mouth shut. I wanted NOTHING to do with online resources, nor parent groups, nor nothing, I wanted it all to be a bad dream frankly - but if you're already exploring the post before mine has some great resources - definitely take your time (if you want of course).

We had a LENGTHY & fairly generic report from the assessor (private practice - we did not pursue early stages due to the wait times) which wrote a lot of things. Similar challenges with echolocia, in fact that was the only "symptom" which we blew off but what was a big issue was awful sleep - DS has insomnia and it has only recently gotten better (naturally frankly - with time and development perhaps) so it's been brutal in the house with the lack of sleep. DS Pedi was the one that decided its time to do an assessment - again mostly due to sleep.

Since a lot of intensive SPT, that's basically subsided almost 100% - fixations are rare, but sometimes there's some repetitive behaviors, but its VERY nominal - no issues with transitions really - DS does have a hot head sometimes and may tantrum but its ebbs and flows - sometimes DS is cool as a cucumber then sometimes not at all. 
We did some OT but frankly stopped due to cost & time. The assessor did recommend reassessing DS before Kindergarten but I question the DX all the time - some days I accept it, some days not - the DSM-5 is bogus really...lots of threads on this if you search with others expressing the same thing. 
We have yet to find a dev pedi due to the long wait lists and have not managed to get off the waitlist for genetic testing which the assessor had as one of the top recommendations (why I don't know since it sounds like its still a new field)...its all a work in progress...our DS is approaching 4 & as the post before me said, it's really impossible to say what the future holds.

All I can end with is that you are not alone, being lost I suppose is part of the process - we're all figuring out as parents of NT and ND kiddos...[/quote]

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