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June 19, 2009 at 10:57 pm Leave a comment

Today marks the end of Jake’s first week of summer vacation. He has two weeks off, then he begins a part-time summer school program that lasts seven weeks, leaving two more weeks off before school resumes in the fall. Unlike most kids that live for time off from school, Jake doesn’t do well with school vacations at all. Like many autistic kids, he thrives on routine and structure. So the first couple of days of vacation he manages okay. I think he thinks it’s an extended weekend, or maybe he got his days mixed up and waaaiiit a minute, maybe today isn’t Monday after all? But by day three or so he’s generally had enough of this staying home business and he becomes cranky and restless.

He also really needs the stimulation that schoolwork and other activities, speech therapy, interacting with the staff and other students, etc. provides during the course of the school day. Not to mention the sensory input that he gets from occupational therapy and all the different equipment and materials they have at school. He has a rich and varied sensory “diet” that is an integral part of his school day, it’s part of his IEP, every member of his team is trained in numerous ways to deliver the sensory input that Jake needs to help keep him composed and focused.

I try to provide some of this stuff at home, printing off worksheets from free sites and buying activity books. There are tons of sites out there with arts and crafts projects ranging from the simple cut/color/paste activities that Jake enjoys and can do unsupervised to more involved projects that require supplies beyond scissors and glue as well as parental assistance/supervision. Jake is very creative anyway and often comes up with amazing things given nothing more than paper and scissors. This week we’ve cleaned out and reorganized his supplies, bringing out some “new” stuff that he hadn’t seen in a while, stickers and foam alphabets and stamps, and stocking him up with brightly colored paper as well as lots of the standard white stuff (paper, not coke).

We play various ball games, we build elaborate railway systems for Thomas and his friends, we go for walks and rides, we draw with sidewalk chalk and play hopscotch on the driveway (which is hilarious as Jake doesn’t hop, he kinda walks quickly through it, throwing a foot out when it’s necessary to touch two numbers side-by-side so it looks like he’s…I don’t even know how to describe it…tap dancing?), we write and draw and cut and color a lot. One of his favorite activities is to take the box of 96 crayons and a piece of paper and write the name of each crayon using that color. So he’ll write red violet using the red violet crayon, pink using the pink crayon, macaroni and cheese using the macaroni and cheese crayon, etc. Except he’ll get lazy with the macaroni and cheese crayon and he’ll write that one as “m & c”. With the ampersand, the boy’s a stickler for his punctuation marks.

We also scream. Except I do it internally. Why does Jake scream? Good question! Sometimes he just seems to be pissed for no reason, or screaming for lack of anything better to do. Sometimes we can tell that there’s something wrong but we’re unable to figure out what the problem is. Or we may recognize it as a pain scream but be unable to pinpoint to source of the pain/discomfort. Sometimes there’s an obvious reason. He’s frustrated over being told “no”. He’s pissed that he can’t have a popsicle or a bowl of chips or a hot dog. He screams over denied food a lot. I feel like I spend a large part of my day denying and diverting Jake’s attention from food. He’s happiest when he’s eating and he would eat literally non-stop if allowed. I suspect this is at least in part a sensory thing too. Chewing provides pressure to the teeth/jaws. I don’t know if the feeling of fullness after eating is a sensory thing or not? If there can be a disconnect there resulting in a lack of ability to sense fullness and if so, is that something that is common in autism? His appetite has increased since he’s been on Abilify as well.

Speaking of! I called to refill Jake’s prescription yesterday (the mail order place because it saves a few bucks on a three-month supply) and was thrilled to learn that Jake’s maxed out his Rx benefits for the year so if we would just pay $1112.22, they’d be happy to get that right out to us! Ummm, yeah…I didn’t want to pay my mortgage this month anyway! We have the crappiest insurance, I swear!! We’re allowed $4000 prescription benefits/year (that’s per person), anything over that we pay out-of-pocket. He has about $285 of benefits remaining so a one-month supply will only cost us $182, woowoo! In the meantime, we’re desperately trying to find sources of samples before the end of July. We see his doctor on June 29, when we’re probably going to look at increasing the dose anyway. (An appointment that our insurance won’t pay for because they don’t cover autism. Did I mention that our insurance SUCKS?!) I’m hoping to hit him up for a supply then. If you know anybody that works in a doctor’s office or hospital that may have access to samples of Abilify (15 mg, disc melt preferred but the regular tablet will work too), please hook a sistah up! I’ll trade jewelry for drugs!

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Misc. Off To See The Wizard

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