Ollie had his developmental check up today and he has fallen behind a few months in everything. It is so frustrating-right after his surgery, he was right on track, but he has really fallen behind in the last few months. I knew this, but it still stings and I feel like I failed by not advocating for more frequent PT/OT. He has a EI appointment tomorrow, so I am going to address it and advocate to get it as frequently as he can. Fuck.
First, I just want to give everyone hugs. I didn't realize we had so many SN moms here.
DS (almost 3.5) is doing so great since his ASD DX. We love our SLP and this summer he's doing once/week individual speech and once/week social communications group therapy with some NT peers. We love it and are so fortunate that we get to do it with our work schedules. We're hoping to continue this in the fall too.
Another thing we lucked out with is our OT has an intern this summer, so he's going twice/week (one session with intern) and we're only paying for one.
There are still things I wish he did differently and we'll continue to work on his interactions with peers, but overall he's doing really, really well and we're so proud of him!
And insurance woes are killing me slowly. I'm so grateful for it, but man it is such a beat down!
Brie that's a helpful explanation, thanks. R is getting weekly PT but when I saw OT mentioned I wasn't sure if perhaps that was something we should be advocating for as well. We're starting solids with her so I may call her EI coordinator to bring up in case they want to do an eval.
If you really like his rehab med doctor, I wonder if they could be his primary and then refer you to neurology when needed? The main reason we still actively have neurology in the mix is because of the seizure med. I believe the plan is to only see them occasionally if we can successfully wean her from the med. We love her neurosurgeon and she is our primary for now, with neurology and hematology in the background.
Hugs, KaraOrNot. It's hard to see doctors and therapists quantify things like how behind your kid is. When we got P's IFSP from EI, I was shocked that he was rated at a 1 month level for some things. But it's just a number, and I was comforted when I asked the therapists to explain the rating a bit. Sometimes the tests are just weirdly stacked against certain disabilities, or outdated, or whatever. I freaked out because his "adaptive behavior" rating was super low and they were like, "uh, yeah, that's because it hasn't been updated in 20 years and they want 4 month olds to be STTN and eating solids already."
laurenh, OT has not been super helpful yet but I anticipate it will be moreso as he gets older.
Thus far P has no seizure activity (knock on wood) so I'm thinking we can probably just continue to treat the rehab doc as his primary. I can deal with the neuro we have for occasional consults. Thanks for the input!
Post by longtimenopost on Jul 7, 2015 9:18:57 GMT -5
Brie you are totally right. KaraOrNot We just had DD's yearly eval a few weeks ago, and at 2.5 she is rated on a 6-9 month level in most things. The "tests" are silly. For example, one of the motor skills was standing independently and throwing a ball. Well, the girl certainly knows how to throw, but she can't stand independently - so she didn't get that one. It stings to see in writing, but it also helps "qualify" her for more services when that is what insurance and the gov. use to make decisions.