>Going to my group today, my biggest fear was that I wouldn’t fit in. That kind of did happen, only, not in the way I expected. I expected that I was somehow be completely different than these people…. not autistic at all, maybe. That I wouldn’t have anything in common with them. That’s not what happened.
There were only three other people, all men besides me, all older than me (two in their late 20s, one in his late 40s). They all have Asperger’s, and if I may say, they are as stereotypical Asperger’s as it gets. One of the guys also has Tourette’s and therefore a vocal tic that is “unrelated” to his Asperger’s. When it comes to the autism spectrum, the doctor said that I am considerably more severe than they are.
Whoa. What?! Me?! I thought that I was really, really, really mild. But these guys don’t have problems with eye contact. They were discussing things about body language that I didn’t know existed. They don’t have any sensory problems. One is married, with children. None have problems with meltdowns (?!) or stimming or self injurious behaviors. I don’t want to discount their struggles, but I’m left wondering, where is your autism?!
So, I guess I have to reframe my idea of my own autism, I guess, if what they have can also be considered on the spectrum. I’m just a bit confused. Anyway, today we talked about body language (I was lost), making eye contact (it makes me hurt, so he had me practice watching his mouth, but I still kept looking away, darn it), melt downs (guess the other guys don’t have those or even understand what they are), how to show that you’re interesting in a conversation, sensory overload, how other people show that they’re bored of listening to you… basically, went through many of the traits of Asperger’s and how the affect each of us. These guys did not talk. I’ve realized that I’m somehow more outgoing than many people with autism… not always engaged with people, but I do like to talk to them, sometimes. Just, don’t you necessarily try to talk to me, if I don’t know you, because I might ignore you. It’s gotta be on my terms 🙂
The doctor asked each of us what we’d like to be able to do better in social settings. For me… when I go out, I can’t just go out with a group of people unless one of a few certain people (i.e., my mom or Leigh or someone) is going. I need someone who I can really depend on in case I get confused or melt down when I’m out. I’d like to be self sufficient enough to be able to go out to eat with a group or something and handle the little things that come up well enough not to have to depend on someone. Also, I kind of need that person as a social “filter,” so that I can communicate with the other people. Anyway, if I could even get moving in the right direction, that would be great.
By the way, Disney would is absolutely INCREDIBLE about handling even last-minute dietary restrictions. We set up a few reservations… it was taken care of within four hours of the initial e-mail: the reservations, dietary notifications, forms to fill out, emails about what I can eat at what places at each park. An awesome lady named Brenda does a great job handling it all. This huge places, which has 60,000 employees, can handle individual dietary issues like that, and such a fast turn-around! And, I can eat brownies, pizza, ice cream, and chicken tenders at dozens of places at the parks down there, not just one or two things at a couple of random spots! Ahhhh! Not that I’m excited or anything 🙂
>So far, GFCF is going very well. My blood sugar crashed in the middle of the night, and I absent-mindedly threw together a bowl of cereal with (gasp) regular milk. I have been paying the price for the past 18 hours! I guess after getting a break from it, my poor stomach just can’t handle the stuff. Ugh. I like how I’ve been eating. For example, today I had GF cereal and almond milk for breakfast, a few peanuts and dried figs as a snack, two eggs and a piece of GF toast for lunch, then brown rice with 1/2 a chicken breast and green beans for dinner. Yum! No “cardboard” here!
Tomorrow starts the new autism group. When I was discharged from partial, they discharged me to this group. I guess it’s mostly social skills-based. To be honest, I have very little idea of what to expect. I know that it’s 8 people, 6 of them men, mostly mid- to late-20s. I don’t really know what we’re going to do or talk about. I’m really nervous.
What if I don’t like autistic people? What if I’m nervous around them? What if I don’t know what to say? What if, and please don’t let this happen, what if I’m still the one weirdo that no one knows what to do with? What if no one likes me? What if I don’t fit in?
I never seem to fit in. Why would this be any different? I’m so, so hoping that it is.
>I know how much stock may people put into the connection between autism and gluten/casein. I’ve never met someone who’s done “the diet” for that reason, though, so I can’t really say what I think. Before I go too far, let me just say that the main reason I am getting rid of gluten and cow’s milk is NOT due to the autism.
I’ve been massively, head-to-toe itchy since… forever. Also, I’ve had stomach cramps and all sorts of other nasty problems for the past 6 or 8 years, getting increasingly worst. I’ve been biopsied for Celiac, which came back negative. I do have GERD and take hefty doses of some medications for that. I was hospitalized last summer with severe stomach pain/swelling, GI problems galore, and severe regurgitation of every bite/sip I took. No real answers, except for some med changes that helped the acid reflux to calm back down.
My nutritionist has mentioned several times that “when things settle down” we needed to think about kicking the gluten and see how my stomach did then. Well, this, folks, is as settled down as life gets. I think it’s time. I picked up a few GF things (pasta, pancake mix, cereal) and almond milk (because I am very aware that at least straight milk and ice cream is a problem, although some cheese and butter is okay)… so far, all are very good.
So, for the next week or so, I am going to figure out how to get the gluten out, what that looks like. I’m not going to do it 100% just yet, as I’m going to Disney next week, and that’s a terrible place to start going GF! Then, when I get back, GF it is.
Now, I’m mostly hoping that my itchiness calms down, and also the GI problems. However, if my attention gets a little better, or some of the other things like that? You won’t hear me complaining!
Anyone out there tried it, for any reasons (autism, celiac, allergies, other)? Thoughts?
>I’m a little exasperated. No, I can’t always say when I’m sad, but exasperated is one that comes fairly easily to me, in words. It may even come first.
I want to be around people who get it. People who getting, I long ago deemed “not people.” I’m getting worn down from trying so hard to be normal, act normal, look normal, seem normal… I just want a break, and I want to be me. And it’s one thing to be me in my own world, which I do every day, but when can I be me in your world, again? Yes, I have autism, I know, and I know that’s supposed to mean that I don’t want to share anything with you, but… oh, I really do. I try to share my love of my kitty with my mom, but all I get is, “I don’t want to pet the cat.” I want to share joy with people who get it, with some not people, for a little while, and feel like I fit right in, without having to try.
>I’m obsessing about what I need to bring to Disney World. Oh, yes, I’m obsessing about which shorts and shirts and whatnot, but mostly I am obsessing about what I need to make sure that I don’t melt down. I will be with my mom and my oldest sister (27). My mom would be upset my a melt down, and my sister just would not tolerate it. Her thought is that the crowds bother everyone, and that everyone else can deal with it, so I need to learn to deal too. …More on that in another post. I have been to Disney before, in October for 3 days with Leigh (well, with the college marching band, but mostly just with Leigh), and I was texting her from the next seat by the end of the trip because I couldn’t get words together. It was rough. Trying to avoid that this time.
Anyway, here is my list-in-progress for what I need to stay sane admist the chaos.
1. Smallish backpack to hold everything to stay with me all the time
2. Multiple water bottles to be filled with ice in the morning (I drink water like it’s going out of style).
3. I usually have a squishy, spindly ball with me… but it’s broken. As a replacement, I got a Tangle Jr. (http://www.seriouspuzzles.com/tty1800a.html). I’m going to connect it to the strap of my backpack so that it’s always within reach.
4. Ipod and sunglasses. Obviously.
7. I bite my hands, knuckles mostly, a lot more when I’m more stressed out. I’ve tried chewing gum, but it doesn’t work because gum isn’t hard. I don’t like ice. I finally broke down and got a chewy tube. It’s just a red stick; it almost looks like candy. I don’t intend to bring it anywhere with me or anything, but for chilling and watching tv or late at night… my knuckles might someday straighten out again. I feel pretty embarrassed, but other strategies just weren’t working. Something acceptable to chew on would be such a relief.
8. Band aids in case I get a blister.
9. Back up site changes for my insulin pump, juice boxes and snacks in case my blood sugar is low, etc.
10. Maps of wherever we are and wherever we’re going. I can’t read maps, but I need to have them.
Any other suggestions?
>Antecedent(s): My parents were talking about… something I didn’t understand… at dinner. When there was a pause, which I took to me “we are changing subjects,” I brought up that I got a brand new swimsuit today that I really liked. My mom was with me, but I was telling my stepdad. They then went on with whatever they’d been talking about, completely ignoring that I’d spoken. This happens fairly often, and it really bothers me because I never understand why! I brought my dishes in (we’d been sitting outside) and decided to watch some tv. Well, the window are open, and there was noise outside. I can’t follow the tv for squat when there are other noises. My stepdad then went to the basement and was making a lot of noise doing things with his motorcycle (not loud, but distant loud, if you know what I mean). The dog was barking. My mom was vaccuuming upstairs. The phone rang. Noise. Noise. NOISE!!!
I have a problem with scratching my hands/arms, from my elbows down. I scratch until I bleed, and then I scratch some more. It doesn’t hurt one bit. I have scars, and I hate them. But in that moment, I’m either unaware that I’m doing it or so relieved that I don’t care if it will scar. I know that it’s far worse when I’m stressed. It was particularly bad for a while this winter, right after I had to drop out of student teaching, had to take D’s on my transcript, etc. There were hundreds of conversations that went something like this: “Stop scratching.” (That’d be Leigh.) Whine (that’d be me). It’s so annoying to be told to stop. I’ve been doing it for many years with particularly bad points on and off, and very recently, I’ve realized that the real cause is the stress.
Anyway, as the noise built up, so did the itching. By the time the phone rang, I was scratching my hands to pieces, tears in my eyes, about to go over the edge. I texted someone from partial, M, someone who is really helpful with ideas, that I was about to lose it! She said, “breathe.” I got out my Ipod even though I was in the house, popped an extra allergy pill to calm the itching (it DOES help, even though I tell my mom sometimes that nothing works), and considered taking a Klonopin if things didn’t settle down. My mom came down and asked me what was wrong. I said the NOISE was driving me crazy, and couldwepleasegotoDee’stoseethedogsnow? Dee, a true angel in the form of a lady my mom’s age who lives down the street, has 4 adopted dogs and an adopted snake, all of whom she loves dearly: her kids, she calls them. I told my mom that I wanted the dogs, please. Well, Mom called Dee, who was away this evening. Okay. The F word, right, Jess? Flexible. Ipod back on. I got Truby, our dog, and plopped her on my lap.
And here I sit… still trying to calm down and wait it out…
PS- Truby was happy to be held, too, since she was less than thrilled with the commotion. Sorry if I look a bit frazzled. I was. I am.