09 Dec 2009
“Stress is when you wake up screaming and you realize you haven’t fallen asleep yet”
The stress level is about an 11.
- I was in touch with the people at Every Move Counts, they have a method of trying to get communication out of kids like Pearlsky. Some emails back and forth, but then no response to the last two emails where all I ask is if they know of anyone they have trained in my geographic area. Strange for them to stop talking at that point. I didn’t even get to tell them they really, really, really, need to change their web site look (especially starting with the font). Does anyone out there have any experience with them or their method? PLEASE contact me if you do.
- Five days without a washing machine, I do a load for her every day and on the weekend I do mine as well. I wish her diapers were a larger size … anyway, I fixed it last night. After both the local professional repairman and the Maytag repairman-only super-duper-you-need-a-paid-subscription-to-call hot line had no clue, I figured it out. And I fixed it, so there. Now, if I could only come up with a fix for someone around here …
- Woke up yesterday morning in a puddle. Ever wake up in a cold puddle? Not fun. Yes, I patched the waterbed before going to sleep last night.
- I am leaving for five days next week, this nanny has only stayed one night with Pearlsky in the past, and of course all the rituals are different from the usual daytime ones. Different meds, she acts differently at night, different seizures, the whole morning routine, AFO’s, etc. Yes, I will have my cell phone, pager, email (BOTH smartphone and netbook) (what a geek), I can watch on the web enabled nanny cam, but I am still really uptight. Today we did a dry run using the lift in her bedroom (different than the one in the family room) and rehearsed how to compound one of her meds that needs to be made daily. And on. And on. I am fairly nervous and stressed, but putting on a good front. Before you ask, yes, Pearlsky’s mom will be in town, lives only three miles away, but has not visited in about six weeks, has no clue about any of the routines, and of course Pearlsky cannot stay with her since her husband has a cat and Pearlsky is extremely allergic. (Yeah, no need to comment …)
- I am learning more than I ever wanted to know about IEPs. Thanks to everyone for your comments in the last post (and I did note it took Barbara egging you on …) and in private emails. Please, keep commenting there if you have more to add or have not added yet. Lots of good food for thought. That post will happen. And in regards to that, here is a poll that will be interesting to all (especially me) … please “vote” if, in fact, you have a child on an IEP who is on the more severely disabled part of the spectrum (yes, I know, back to those words and stuff, hey, I’m stressed, cut me some slack!).
Sorry for the stress and the over use of the parenthesis keys …
Five days away! It’s worth the stress, isn’t it? I suppose it depends on why you are going and what you’ll be doing, right?
Ah yes, the night routine as opposed to the day routine…I can’t even imagine. I haven’t left my daughter at night since we kicked out the nurses back in 2001. Have slept much better. You know, I bet the nanny is great or you wouldn’t even try it and in the end, it’ll all come out in the wash…..(sorry, just had to…)
Glad you fixed the washer – will the nanny be doing the laundry, too? Hoping the washer-fix reduces your concern some. This post starkly emphasizes the meaning of your online moniker. Encouraging you to get a grip and remember how important it is to protect yourself from stress-related illness in yourself – for Pearlsky. Yes, I am good at adding guilt and I am not even Jewish.
How about we leave the discussion on Every Move Counts until after your trip? Travel safe, Friend.
I’ve never heard of Every Move Counts so I took a look at the video. Honestly, I don’t see what is so unusual about what they do, it seems pretty normal work for kids with pre-intentional communication (with multiple disabilities). What I assume from things I’ve read from parents is that there is not enough of this kind of work going on in hours and intensity, and that communication not addressed on IEP’s as parents would like (request’s for assessments, waiting for months then AAC devices being turned down for a variety of reasons).
Don’t know if this may be useful- enhanced natural gestures is used frequently in the US with kids with AS and I noticed the video mentioned gesture as communication. Some children and adults with AS have very severe movement disorder, so it tries to mould the gestures they can do in to something more easily recognisable.Must go – kids on the move.
Hope you can relax while away. As for the washer and dryer, I would give up all my other appliances before my washer and dryer.
Ugh, the IEP goals. They are never met. Sometimes they are worked towards, or halfway met. Never all the way. Or maybe one little goal is met. Never have we even met half of them. I hate goals.
I was wondering if you have ever brought your daughter to a speech language pathologist. They may be able to help with getting her some sort of communication. (it wont be perfect but even something that says yes and no)