July 14, 2009 at 5:38 am 1 comment

I attended a conference in Roanoke over the weekend that was chock full o’ resources (and nuts as my friend Kate was there!) I was torn because I was interested in just about all of the workshops, it was tough choosing only three.

It was all overwhelming to be honest and by the end of the first workshop, I was in tears. Things have been stressful here lately with Jake, we’ve added a new med to the mix so he’s been adjusting to that and as is often the case, things got worse before they started getting better.

Over the past couple of weeks, I’ve spent probably 40-50 hours online and on the phone, trying to find assistance getting Jake’s meds since his prescription coverage ran out. Everything I’ve tried has failed, all leads have resulted in dead ends, and I finally researched ordering them from Canada since I can get them for only $250/mo. instead of $450/mo. they cost here in the US. At the last minute though, and I mean literally the last minute, Jake’s dr came through with a voucher for a free 30-day supply of the drug! I went to the clinic to pick up the script to send to the Canadian pharmacy, where I had already established an account and placed the order, and he’s attached a sticker to the back of the prescription so we can get it here for free. And we can use that twice! If I hadn’t had Jon waiting in the car, I’d have offered to take the man out there and thank him properly!

Anyway, my point was that I’ve been feeling a bit frustrated recently with my inability to successfully access any services for Jake or our family. I now have a tote bag full of information and resources and contact information to sort through and pursue so I’m hopeful that we’ll be able to get some services for Jake soon. There are a ton of things that I’d love to be able to provide for him, therapies and equipment/materials and consultations, but finances have prohibited it.

It was great to get away for a couple of nights, it’s been forever since I went anywhere all by myself. I got to catch up with my friend Kate who works with the organization, Medical Home Plus, that sponsored the conference and I met a lot of wonderful new people. And the drive was lovely, it’s just gorgeous out there in the mountains, even without the fall foliage!

Before I go, I’ll share something that has had Joe and I giggling for a few days now. Jake has a new aide working with him at school this summer. New as opposed to the wonderful woman that has been with him during the regular school year for the past two years and went to summer school with him last year. She took this summer off. This new aide is a young man named Brian, and he’s very sweet.

Every day a form is sent home with Jake that details the goings-on of his day…what they did that day, academics, social skills, therapies, anything interesting or unusual, any problems or issues we should be aware of, and there’s space at the bottom for teachers and/or parents to write notes to communicate with each other. We initial it each night and return one copy and keep the other for our records.

Teachers/aides that have been doing this a while tend to only write what’s absolutely necessary but Brian, being new, writes descriptive, detailed notes for us. And he always tries to write something positive it seems.

On one of last weeks forms he wrote, “Jake seemed alarmed by the juggler who came to visit!” I laughed my ass off. Yeah, I don’t know who thought bringing a juggler into a class full of autistic kids was a good idea in the first place? But I bet Jake was alarmed by a guy, a man he’s never seen before, probably gaily dressed, throwing things around. Multiple things flying through the air simultaneously, a bit overwhelming sensory-wise, in the middle of the school day when we don’t normally have carny folk visiting to begin with. This is the kid that we have to prepare in advance if he’s going to have a substitute bus driver, he doesn’t do change in routine well. So yeah, I imagine that Jake was alarmed by the juggler who came to visit!

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Entry filed under: Jake. Tags: , , , , , , .

What I’d Say You Don’t Have To Call Me Darlin, Darlin

1 Comment Add your own

  • 1. yujie  |  July 17, 2009 at 12:09 am

    has Jake got his DD Waiver yet? we are still waiting for it. It is so frustrating that we not only have to face the 24/7 challenges at home, but also medical/school services outside the house! you are great! I am somehow a little tired of all the “new hopes/hypes” out there these days

    Reply

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