Posted by: Sandi | September 27, 2007

Blog Challenge: ’07 Update

If keeping this blog updated was a school assignment, my grade would be an “F.” Luckily, I’ve been out of school for more years than I’d care to recall…and I’ll now try to redeem myself by updating our year so far.

Jessica Update:

The year started out with several major disappointments. After being on the waiting list for over a year for an inpatient Neurobehavioral program, we were told it could be several more years before they had a bed available…and that our insurance probably would not pay.

At about the same time, we found out Jessica was turned down for admission to a second inpatient program we had applied for. We were also beginning our 4th year on the state’s “URGENT” waiting list for a Medicaid Waiver slot.

In the meantime, Jessica’s behavior was spiraling out of control and her SIB was becoming worse. At one point, the sides of her head were nearly bald where she had pulled out her hair.

Then, in the spring, things finally started falling into place thanks to the wonderful and dedicated staff at Jessica’s school. They truly went above and beyond in getting us help. They spoke with the Community Services Board (CSB) to bring Jessica’s case for the Medicaid Waiver to the forefront. The CSB also offered a small amount of funding to cover respite care until the waiver slots were awarded in July.

In the meantime, the school was able to locate a short-term, inpatient Neurobehavioral program that had beds available. While this program’s goal was to simply stabilize the child, we felt it would be beneficial. If it worked, great…if not, it might give us some “clout” with the long-term facilities we’d been trying to get into. We called them that day, and Jessica was admitted that evening. I cannot describe how hard it was to leave her there, yet I was relieved that she was finally getting some help.

Jessica was diagnosed with a mood disorder and spent 3 weeks in the program while they tried and adjusted medications and worked on behavior strategies. The unit had it’s own classroom and teacher, so she was also able to continue working on her IEP goals during her stay. Because we lived out-of-state, upon discharge they arranged for her to see a local child psychiatrist to follow her and monitor her medications. They also arranged for her to receive in-home behavior therapy (which the CSB agreed to pay for). Suddenly we had services left and right!!

While the medications alone made a tremendous difference, I think the medication combined with intensive in-home behavior therapy was what made this so successful.

The behavior therapist began home visits a few weeks after Jessica was discharged. He was awesome…kind of a combination of Super Nanny and the Dog Whisperer. And, just as I suspected, I really was doing everything wrong -though Mr. B. was kind enough to assure me that these techniques, while seemingly simple, were really not instinctive -especially when it’s your child. It was definitely tough-going; but I was amazed at how quickly we saw results!

So, we’ve now “graduated” from behavior therapy and continue to see improvement. Jessica is more happy and relaxed than I’ve ever seen her. Her speech has really taken off and she is doing great in school this year (can’t believe she is in 6th grade!). She still has moments of aggression and SIB, but they are few and far between and we now have the tools to manage them.

And the best news…we found out in early August that Jessica was awarded a Medicaid Waiver slot. We are now just waiting for the official letter from the state so we can be assigned a case manager and begin services.

Other Family Updates:

In June, Amanda got her Learner’s Permit…which makes me officially OLD. Funny, that subtle shift -around age 13- when your child’s milestones begin to reflect more on your age than theirs. Anyway…

We started our first lesson in a fairly empty parking lot where I imparted the fundamental principle of driving a motor vehicle —don’t hit anything.

The first lesson went something like this:

A: OMG! Which way do I go?

Me: Go left. Don’t hit anything.

A: OMG! There are people walking!

Me: Stay on the road. Don’t hit them.

A: OMG! There’s a car coming!

Me: Stay in your lane. Don’t hit it.

A: OMG! There are two more cars!!

Me: Stay in your lane. Don’t hit them.

A: OMG! I need to pull over.

Me: Okay, pull over right here (don’t hit anything!).

A: OMG! That was so much fun!!!

Me: ggaaaaahhhh…

In retrospect (now that my life is no longer flashing before my eyes), the first few lessons where actually pretty funny. And Amanda has turned out to be an excellent driver. She can’t wait to get her driver’s license; and car obsession has trumped boy obsession for now! 😉

Whew! That was long. But I think we are now caught up!

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Responses

  1. Wow, it’s so great to read Jessica’s update! I’m sooo glad you got the Waiver slot! It sounds like she’s doing much better and sometime I’d love to hear your behavior management strategies.

    Hell her Happy Birthday from us! It is hard to believe it’s been over a decade since we first met!

    Still chuckling about Amanda’s driving lesson! Yes, we are officially old….

  2. Sorry about the typo…..TELL her Happy Birthday from us! 🙂

  3. Thanks Christy, I will (funny typo!!) 😀

    Yep, we sure are old…hard to believe our girls are in middle school and that we’ve known each other over a decade (yikes!)…LOL

  4. Welcome back, Sandi!!! I am so glad that Jessica finally got the help she needed and is doing so much better. I hadn’t even heard of behavior therapy.
    Amanda’s driving lesson was hilarious! I can’t imagine our boys turning 16, but I’m sure it’ll be here before we know it. Maybe I can convince them not to get a driver’s license until they turn 25 like I did….

  5. […] her last visit 3 months ago.  That makes for a total of 26 lbs. she has gained since she started taking medicines for her behavior in May.   She’s also grown an inch and a quarter and is now officially a […]


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