I let Jake pick out a tube o’ Pringles at the WalMarts the other night. Pringles are Jake’s crack. Thank goodness they at least come in low-fat and light versions now, why they’re practically health food!
As a bit of background, Jake finally realized a couple of weeks ago that he’s tall enough to reach the top lock on the pantry doors and life has been a living hell ever since. It was hard enough controlling his diet before, when he only had access to the food that we gave him. Now that he can mosey in there and help himself to anything, including the few snacky items kept on the very top shelf, the shelf that I can barely even reach, my days are filled with chasing him out of the kitchen and yelling at him to get out of there and taking away whatever he’s managed to grab while I was in the bathroom or laundry room for thirty seconds. Yeaaahhhh, today is the day that Joe will be making a trip to the Home de’Pot for some sort of handles that we can run a bicycle chain with a combination lock through, which is what we use on the refrigerator.
So a few minutes ago, I’m in the laundry room, elbows deep in wet clothes and I hear Jake foraging in the pantry. Apparently it’s time for second breakfast already! “Jake, get out of there!” I yell. But of course he doesn’t listen. Joe is still sleeping so he’s no help. By the time I can poke my head out, Jake has walked over to show me what he has, which he at least has the courtesy to do usually. He’s gotten himself a small bowl of Pringles.
I ask, “What do you have?”
He responds, “What do you think?”
I am speechless. Touche, son. Carry on.
“WTF? Are those fortune cookie hats?” Jake and I were getting out of the car at Ukrop’s this morning to pick up a couple of final ingredients for Jonathan’s birthday feast tonight when I noticed them. Tables set up on either side of the entrance, brightly-colored banners and balloons, several pre-teen girls with bizarre headgear, and a lone mother chaperoning. As I locked the car and prepared Jake to go into the store (which basically involves making sure his shorts aren’t twisted and his shirt is pulled down properly), I squinted and studied them more closely and realized they were lemon wedge-shaped hats. They were selling lemonade.
As we approached the traffic lane to cross to enter the store, Jake took my hand and pulled me to a stop while eyeballing the setup in front of the store. Jake knows this store intimately. He’s visited it at least once or twice a week all of his life. He’s usually pretty comfortable there, unless he’s having a tense day and the noise or crowd gets to him. He’s never seemed phased by other “vendors” set up in front of the store. Girl Scout cookies, KoC handing out poppies on Memorial day, other fundraising activities, whatever. But, as those of you familiar with autism know, just because it wasn’t a problem last time, that doesn’t mean it won’t be a big freaking problem this time. They do like to keep us guessing, don’t they? Those wacky tricksters!
So I was a bit surprised and a lot worried about his stopping. Was he upset by the unexpected change in the landscape of his familiar Ukrop’s? Was he going to refuse to go any further? Was he going to have a meltdown and throw himself to the ground, screaming, right there in the parking lot in front of the grocery store? Will I shatter my TV screen from the sheer force of screaming at it before the Sotomayor hearings are through? All very, very likely scenarios.
But nay-nay, not today! Instead, Jake leaned into me, smiled a shy little smile, pointed at the girls discretely (which is huh-yuge for Jake, who points *point* at you *point* with everything *point* he says *point*) and said, “Water.” Pretty damn close, kid! So, relieved that a meltdown wasn’t in my immediate future and pleased that Jake had figured out what the dealio was and wanted a piece of that (a sip of that?), I told him it wasn’t water, it was lemonade, and we would get some on our way out. Which we did. Well, mostly he did, with some prompting from me to hand over the dollar and remember to say “Thank you” at the end. And there was a sticker involved, bonus!! I love me some stickers.
I was reading something on one of the forums in an online autism community recently, I don’t even remember which one now, and there was a really great discussion going on. With opinions being shared and respected, other points-of-view actually being considered, people disagreeing in a respectful way and offering rational, well thought-out arguments for their differing opinions. It was indeed a rare and beautiful thing to behold!
And then someone took offense to the term “autistic” being applied to people with autism and it was all downhill from there. It wasn’t the first time that I’ve heard that argument, said argument being that it should be person first, disability second. So the correct way of saying it would be a person with autism, not an autistic person. That autism shouldn’t define a person and that there is more to a person than just autism.
I can see the point there. And I agree that it has some validity…to a point. After all, if a person has cancer, we don’t refer to them as canceristic. (I keep wanting to type canceriffic there, which would give a completely different vibe, no?) But I think that for people like Jake who are profoundly affected by autism, it’s quite reasonable to refer to them as autistic. Autism affects every part of Jake’s life. I’ve been thinking about this for nearly a week now and I honestly cannot come up with a single aspect of his life that is not touched by autism. So I use “autistic” to describe Jake not as a disability, but as more of a personality trait. He’s autisteriffic!
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!
I once had a dream that Jake could speak to me. This was six or seven years ago, only a couple of years after he was first diagnosed with autism. It’s funny, but it never occurred to me until just now, as I’m writing this, to wonder if in that dream he was no longer autistic or if he was just suddenly able to communicate but still had the other symptoms of autism. From the way he was behaving and talking to me, he didn’t seem to be very autistic
In my dream, I was beyond excited because I could finally ask Jake questions about all of the things that he had never been able to communicate with us in real life. At last I would get answers to the baffling, idiosyncratic, remote world of our baby boy!
I remember asking Jake questions about why he did this, or what it meant when he did that, and did he like this, that, and the other thing. And I asked him if he knew how very much he was loved.
The feeling of joy that I experienced during that dream is indescribable. I have never felt anything like it before or since. Not falling in love with and marrying Joe, finally becoming pregnant after 10 years of marriage, the births of my children, no accomplishment or experience has ever brought the same rapturous, all-encompassing bliss that I felt during that single dream. Even now, I can still feel that sense of rapture when I allow myself to remember that dream.
And when I woke up and realized that it was only a dream, the pain and heartbreak that I experienced was equally indescribable. To this day, I still can’t recall it without breaking down. I never want to have that dream again, because the agony upon waking and realizing that it was only a dream is too much to bear twice.
I’ve been thinking a lot lately about what I would say to Jake if he were suddenly able to communicate with us verbally though. While I don’t want that dream ever again, I would take one day of being able to talk to Jake in a heartbeat, even if it meant that he would default to autistic the next day. The opportunity to talk with Jake, to get answers to all the questions that I’m left guessing at now, to learn more about how the world feels for him and how we can help him…hell yeah! Even if only for a day. It would totally be worth the pain of losing that again at the end of the day.
I would ask Jake why he screams so much. What is he trying to tell us, what does he want or need? I would ask him if there’s a way of communicating that might work for him that we haven’t thought of or tried yet. I would ask him what things bother him and why, could he help me understand what life feels like for him. I would ask him if there’s anything that he wants to do or activities that he’d like to try. I’d ask him if he’s ever been mistreated, either physically or emotionally…by a teacher, another student, a bus driver, a family member, anybody?
And I would ask him if he knows how very, very much he is loved.
A few of my friends have posted on Facebook about their first memories of Michael Jackson because let’s face it, for my generation, his music was the soundtrack to a large part of our youth. Specifically, a couple of them have recounted memories of skating to Rockin’ Robin. These friends are obviously much, much older than I because I wasn’t aware that Michael or the Jacksons ever did a cover of that song.
I have some very vague memories of the Jackson Five/5 era, but I mostly came to know and love that music when I was older. I even have ABC on my ipod. Instead, I came of age during Michael’s Off The Wall period. I got my first real stereo with a turntable when I was twelve and that was one of the very first records I owned. Instead of Rockin’ Robin, I have memories of skating to Don’t Stop ‘Til You Get Enough.
I love that video. Especially compared to the trailblazing sophistication of some of his latter videos. I can just imagine them explaining the concept, “Basically Mike, you stand in front of a green screen and sing the song, then we’ll add an LSD trip post-production.”
That video was made in 1979. There was also a video for Rock With You (Hamburglar pants and glitter Uggs, Mike!). MTV didn’t begin airing until 1981. So where were these videos being shown before MTV? I have some foggy, faint memory of something on TV late Friday night maybe that showed music videos…does this sound familiar to anybody else? Or is this one of those things that nobody has ever heard of except my sister and me, like Barbapapas?
I didn’t love the Thriller album like many people did. Probably because it was played to death and I have this thing about if I hear a song too often, I officially detest it and will henceforth avoid it at all costs. Billie Jean is one of those songs. I thought it was a stupid song to begin with (yes, I’m one of those people that actually listens to and judges a song based on it’s lyrics) but the music was great and it was catchy, they just played it. into. the ground. I had also moved on from pop to more of a punk/rock thing by then. I will admit that’s it’s possible that I may or may not also have in the very recent past had P.Y.T. on my ipod as well.
I also really liked a lot of stuff off his Bad and Dangerous albums. I still can’t resist the urge to bop along when I hear The Way You Make Me Feel. “You knock me offa my feet now baby. Hoooo!” And remember the anticipation of the primetime premier of the video for Black or White, with the cool morphing faces at the end?
Michael had a lot of problems, and he made some really poor choices. I don’t know that we’ll ever know the full truth behind a lot of the controversy that surrounded him. But he’s gone and that’s between him and his maker now. I suspect that his musical legacy will outlive all of us though, and rightfully so.
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!