All in the name of progress

I managed this week to conduct not only the “transition to junior high” IEP for Captain Oblivious, but also the first negotiating session with the new managed health care people. Let me say, either meeting was seriously worth several glasses of wine and maybe a Valium.

The IEP meant meeting the responsible people at the junior high, and realizing with more of a pang than I expected, that these professionals who have seen the boy through five years will no longer be a part of his life. A new autism support teacher–fortunately a young lady I’ve known since she was a child– means everything will be different. Everyone is well aware of his issues now, and the repetitive nature of the listing of needed supports for success hammered home how difficult he can be.

We joked about how he thinks he knows everything, and I said he should hurry up and get to be 18 while he still was smarter than everyone else, so he could get his own place and be right ALL the time. The school psychologist, who’s been a real support, wondered how I could be sure C.O. would be out on his own when he was 18.

“Because his father said so,” I assured her, and there was a big laugh.

But at the same time there was a little poignant pause when I really wondered.

The day before, I’d spent several hours with the new managed care team for mental health, where they analyzed the results of the two-hour evaluation the children had a month ago with a local psychologist’s intern. I didn’t get to see the report, “because of HIPPA,” they said, but I was aware the recommendation had been exactly along the lines of my request, 30 hours of mobile therapy and TSS a week all summer for Little Miss and C.O. for an inclusion summer camp to work on social skills. The director of the wraparound agency we used before was there, and she backed me up 100 percent as they went over the recommendations they had advised me we needed to have.

The county person kept popping up with useful statements like, “Oh, have you heard of Autism Speaks? They have an awesome website.” Yeah, no kidding. I’ve been at this seven years, pal. What’s your excuse? The rep from managed care seemed to understand everything we wanted as we went through the children’s strengths (relatively few) and areas of concern (how much time do you have?) and came up with a beautiful recommendation. We all left smiling but weary.

Then Michelle from my agency says, “Oh, by the way, you may not get it.”

“What? No! Everyone was happy. They wrote it all down!”

“They always do. Then they take it back and decide whether they’ll approve it or not. If it goes to Peer Review, even less chance.”

So I headed back to my car with a sigh, wondering if that whole six or more hours had been a total waste. And now, after a week of reviewing just how bad the situation is so we can get help, I’m looking for my rosy-colored glasses so I can get a positive outlook again. Bottom line is, every problem we overcome means we’re moving forward. And besides, C.O. came home from track and field day with his first blue ribbon ever today–and Little Miss got a blue, a 3rd and three 4ths. Just have to keep those blinders trained on the bright side.

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11 thoughts on “All in the name of progress

  1. It is weird to make that adjustment from it’s all bad to it’s all good. Or something like that. We do that too when trying to qualify for thing – have to look at the dark side. Then it’s hard to find one’s way back to the bright side somehow. But LOVE the ribbons. That’s a very powerful thing, those ribbons. Good work, kids! And good work to you too. 🙂

  2. I’m so glad I stopped by! I am the mother of an almost nine year-old boy with both Asperger’s and bipolar disorder.

    I’ve been to several IEP meetings in the past four years, and only one can be classified as successful. Maybe it had something to do with the gigantic manilla accordian files on case law, the educational needs of autistic children, and civil rights. Possibly, it could’ve been due to the sweet little book I sat on top of those files – Educating Handicapped Children: The Legal Mandate by Reed Martin.

    Sure they were props, but whatever works! Ryan finally has access to the services he needs to be academically successful. Now, if we could just do something about his brutal honesty (I farted!) and social misfires (I hate everybody!), then my work here would be done! 🙂

    Exactly, exactly, my friend. As much as we hate the labels, theoretically they bring progress. Wait till ‘I hate everybody’ becomes “I’m going to kill you.’ A marvelous moment indeed, though also not literal in meaning.

  3. I always learn something here. The end was depressing though. Makes you wish you could take over and run everything for yourself.

    The ending with the ribbons got some smiles. Thank God.

  4. “blinders trained on the bright side”

    Amen to that. We need to stay focused on not only our goals for our autistic children, but also to stay positive.

    I’d have loved to bean that woman who recommended that “Autism Speaks” website.

    Sending you hugs… IEPs are always draining.

  5. I’m a little confused as to how HIPAA laws affect you seeing YOUR kids’ reports. That seems really wrong to me…or did I miss something??

    It’s not that I can’t have them–I have to request them directly from the evaluator’s office; the agencies can’t give copies to me. Ridiculous bit of red tape, but I see where it comes from.

  6. I really hate Autism Speaks. I just want to say that for the record.

    If you really feel like getting some anger out, you should get in on the Alex Barton thing.

    I’m still pretty much in shock on this one.

  7. Wishing you rosy glasses and earplugs for when the double-speak comes in, my friend. I pray that your kids get all that you wish for them, and more.

    Congratulations on the ribbons, too! You also deserve a blue ribbon for being a great mom!

    You all are so supportive–I love my online community!!

  8. It all sounded so good. I hope it turns out as well as you hoped. Very frustrating if they lead you on just to turn you away.

    But the ribbons are EXCITING!

    Good news! All was granted. The wraparound gods are smiling on us. 🙂

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