Previously posted here
I probably should take a nap instead of vent, but... What fun is that?
I've heard from so many special needs parents that dealing with the IU (and groups like it) can be one of the biggest headaches. I dont love our IU by any stretch but this weekend I'm fuming.
I shouldnt be... It's not like this catches me off guard.... It just pisses me off.
So, first the good... I love Bobby's BSC. She's amazing. She 'gets' Bobby and doesnt let him get away with anything. She works really well with his preschool teacher/aides, and is just a real treasure when it comes to support for Bobby.
His OT: this is the only therapist who has contacted me to set up make-up sessions (since OT started so late) (and, actually, is the only one to not tell me they dont have to do make-up sessions, which isnt true). I think she gets Bobby as well, and am looking forward to meeting her at our home on Monday. She called me on Thursday to schedule make-ups at home so that she can get to know me and Bobby's home routine, which I think is awesome and will help him in his school therapy too. I've spoke with her a few times on the phone, and I like her, so she's a keeper.
His SEIT: I didnt really get to know her, and now she's gone (I'll get into that in a bit).
His SLP: Speech was the last thing to get assigned. I finally had to tell the IU that if they didnt assign him a therapist I was going to start calling whomever I could get to listen and, three months after his 3rd birthday (and 4 months after our initial meeting/eval), he was assigned a speech therapist. Thanks to all of the breaks the IU takes and their lack of understanding how this type of mismash impacts children who a) have a slower time processing in general and b) struggle with new situations, this has been a disaster. We've seen her twice. TWICE. There was a three week gap between yesterday and her last visit, so it was like square one again. Which is tough. It takes Bobby so long to really connect with different adults that both sessions were basically wasted. He doesnt know her, she doesnt know him. I think she wants to help him, but at this point doesnt know him and doesnt know how. Which is frustrating (for her, I'm sure, too). She seems competent and I believe her approach will be good for him; it's just getting a schedule that is really a schedule that is our problem now. And because, once again, the IU has a vacation day, she wont be here next Friday, which means when she comes back in 2 weeks, she'll still be a stranger to Bobby.
This ticks me off, but what really gets me is the one-to-one aide he is supposed to have.
Before the holidays, we had his IEP revision meeting. His case manager was late, but the news was good: he had been approved (FINALLY) for a one-to-one aide to help him in preschool. This person would be trained by his BSC and the BSC will oversee him/her. They will help Bobby particiapte in activities that he is struggling in, as well as help reinforce directions and skills (which is great, since Bobby needs a little time to process things). We were told by the IU how this would start when school resumed in January (which wasnt true exactly since the IU was on vacation when school resumed! WTF!!! ISNT YOUR JOB TO HELP KIDS IN SCHOOL????? Sorry... my fingers vented on their own). So, come his second class of the new year, we're all waiting to see how his aide, who will be at school from 8:15am-12:15pm, will work out...
At 10:15am, I got an email from his teacher. No aide. The person never showed.
I spoke to Bobby's BSC as she was leaving for the day (while I was in the pick-up line) and she was suprised the IU had assured us (Peter and I AND the school) that an aide would be starting, since they were going through the agency the BSC is from and since the BSC would be training him/her, her schedule would have to be adjusted to be on-site. She (the BSC) hadn't been notified anyone had been assigned because... wait for it... no one had been assigned!!! And she didnt hold out hope that there'd be anyone on Thursday either (she was right). She told me she'd text me once she heard there was someone assigned).
It's nice to have someone on our team because, when I emailed the IU to let them know that there was no aide, the response was that the case manager would look into it and take care of it... and I've heard NOTHING. That was Tuesday. There's been no "We havent assigned him an aide" or "The aide wasnt able to start" or anything. Nada.
I know what it is like to work for an agency that is underfunded and overworked. I know it's tough. It's not fun. There's always something to do and not enough to do it with, and someone will always be unhappy with what you are doing. But come on... The IU works with children. The work FOR children. Early theraputic intervention is what helps kids who are struggling become productive students who have confidence in their abilities and are able to work through their weaknesses with their strengths. A half-assed approach doesnt help anyone.
We're getting a new case manager, as our current one is being reassigned to a different job, and I'm hopeful that we'll be able to establish a good working relationship that will benefit Bobby. But today, I'm just frustrated (and ticked off) with how this semester is already shaping up.
Thank God for a preschool teacher and aides who never quit, and for a BSC/therapists who are really trying and working hard for Bobby's sake. Otherwise, I think I'd want to bury myself under a rock!
I hope things are quickly resolved for you guys and B receives the services he should very soon. Many hugs.
I have been frustrated with the services provided to my children also. Lots of calls. Lots of follow-up. Lots of frustration. I'm sorry, but it shouldn't have to be a full time job following up with them to ensure that the kids are serviced as they need, but it can feel like it is! I can't help but think about the families with parents less able to advocate for their kids...it's almost like the system depends on those families. It's heartbreaking. Sigh.
Thank goodness Bobby has you as his advocate. You're doing a good job with this, don't forget that.
Post a Comment