Revisited
28 Apr 2012 2 Comments
Well, it’s 6 AM and I’m wide awake. My nerves are getting to me, interrupting my sleep. As an aside, for whatever reason, I can’t really seen the screen even with my glasses on… and for another, there’s a Lucy Goosey up here “helping” me too. Thus, typos are to come, I am sure.
Some months ago, back when I was a regular blogger and all, and I think it was around Christmastime, I wrote a post explaining that sometimes, all we (autistics) is to get a break from what we “should” be and to be who we really are. And so, in the piles of Christmas and birthday presents, I think that the child should certainly receive therapeutic toys, but also receive what he wants. This might mean that you’e 15-year-old grandson get Thomas the Tank Engine toys. It might be that your young adult daughter wants a specific doll. If you ask me, that’s perfectly acceptable.
I spent last week in the hospital trying to sort through some serious GI issues and of course we are no closer to figuring things out than they were when I went in. I have an appointment with gastroparesis specialist on Monday. My PCP wanted me back in the hospital yesterday but I convinced her to let me try to stay hydrated at home. The scary part is my blood sugars, of course. With the GP, they swing wildly and are downright impossible to control.
Anyway, as I laid in the hospital and paced the halls with my IV pole, friends stopped in almost everyday. Each time, the friend would ask what she could bring, and each time, I said, “I just want to see you!” Yeah, right. Silly friends insist on gifts.
And I was so excited at the realization of how well my friends know me. I have a giant cat stuffed animal, and a giant black lab puppy one, cat magazines, cat bracelet, even a little rose bush. Yes, I’m 24 and probably “shouldn’t” love stuffed animals like I do. I say, who cares?
Speaking of 24, I may be getting old, here. I still can’t see the screen.
PS- Happy 500th blog post to me 
Growing up as me
18 Apr 2012 7 Comments
I’ve never been one to carry a purse. And at this point, I’m kind of known for my backpack. It’s a full-size backpack, but it’s really pretty. And you know, I’ve been happy with my backpack. It fits the nineteen thousand things I like to keep with me, Diet Mtn Dew and all, and it doesn’t slide down and clunk people when I move my arm like a purse tends to do. So for years, ten years?, I’ve been content with my backpack… until I realized something.
Everyone else carries a purse.
I carry a backpack.
Maybe I want to carry a purse too?
Now hold on a second. Don’t for one second think I want to assimilate into society to the point that I’m indistinguishable from everyone else. No, no. That’s not me. To some degree, I’m always going to stand out, whether it’s my extreme shyness, my health issues, or my soon-to-be-service-dog. My communication style is unique, and while I’m not socially inappropriate, I definitely have my own style there, too. I don’t know if I’d maintain a full autism diagnosis at this point, but I’ve got the quirky thing down pat. I’m okay with that.
But there are certain ways that I don’t really want to stand out. My “thing” right now is that, as I’ve grown up so much mentally in recent months, I want to look my age, too. I’m 24, but I don’t really look like I’m in my 20s. My backpack, Disney t-shirts and such don’t really help this situation. I constantly get asked what grade I’m in.
And so, I found a purse. A nice huge shoulder bag, the brightest coral I’ve ever seen. It’s all Lydia. It stands out. But it stands out in a way I like.
My mom took me shopping for, shall we say, grown up clothes. Today at church (where I subsequently had a panic attack and bolted from, but that’s another story), I was told that my shirt was pretty… rather than awww, how cute, Mickey Mouse. My clothes are a little unique. They’re me. In a good way.
Next, I’m after a hair dryer. I go out with wet hair all the time, but I think it adds to making me look younger, so I’m going to dry my hair before I leave in the morning… most days.
I find that as I make these changes, I realize that I’m even more comfortable with myself than I ever was before. I feel like me. Quirky, yes. Stand out? Maybe so. But in a way I like.
Just don’t expect me to wear make up everyday. That’s pushing it!
Two years
02 Apr 2012 9 Comments
It’s been a while, hasn’t it? I have to wonder if I’ve forgotten how to write. My fingers feel pretty at home on the keys. I’ve been here, living life in its ups and downs. I had some personal issues that turned into some health issues. All is not well, but it’s certainly better than it was.
I know you’re probably expecting an Autism Awareness/Acceptance Day post. Would certainly be appropriate. But see, with the political battle between the two big autism organizations, I…. I feel stuck. Ever the people pleaser, I fear, well, to piss people off, on either side. I have issues with both organizations’ viewpoints. Neither is perfect. Where I fall tends to depend on the day. And so, for today, I’m not doing much for Autism Awareness/Acceptance day. I’m going to be me, always open to questions and inquiries. I’m going to try to build people up, like I always do. I AM wearing a small puzzle piece pin. I do not take issue with the puzzle pieces. I like to say that every person with autism is like another piece to a beautiful puzzle, one that needs every piece to display its true beauty.
So today’s ramblings are only loosely tied into autism awareness/acceptance. I mean, I’ve done some awareness and educational work both in groups and one-on-one at my church, and without that, I’m not sure I’d have the environment I do… but I’m getting ahead of myself.
So, I came to my church two and a half years ago in November of 2009. I had no friends except Leigh, and certainly none around here. I’d go with my mom and panic and have to leave the room time and again. Then my mom had to follow me, or I’d panic more. I couldn’t even run to the bathroom without her. I was afraid of the pastor hugging me, I was afraid of the music, I was afraid of… everything!
Fast forward to yesterday. I met up with one of my best friends at the church for the 9:15 services. My mom was at home. I go to bible study every week without her and without staff, too. I always meet H who is amazing at helping me to stay calm and is always a step ahead of me. So, no, I can’t just show up at church and sit through a service, but I can go with a friend… and if she’s not available, I think I’d manage with a different close friend.
I didn’t get up once during the service. I was totally fine. After it was over, I went out into the crazy crowds (hey, so, about two years ago I showed up at a Sunday service, saw the crowds, and turned around and left!) and found another friend and we chatted for quite a while. Yes, I can chat, in the midst of chaos. I have to trust the person I’m with to be able to handle me if I get upset, but I can do it.
I got some tea (I don’t like to eat or drink when I’m stressed), so I couldn’t have been too upset at the crowds. I hugged my pastor happily. I hugged my friends.
I’m leading a small group at church for young women with ASD, and that’s going great. Me? Leading a group?!
It’s such an amazing difference from two and a half years ago. I can’t believe how much I’ve changed. I have a ways to go… I still can’t handle church without someone kind of one-on-one with me, but at least it doesn’t always have to be my mom. And, even so, my friends aren’t going anywhere so I know I can rely on them if I need them.
Six months ago I had an evaluation that said that I had “no insight into normal relationships.” Hmph. Ask my friends, and they’ll tell you I most certainly do. It takes a lot of talking through every little thing to learn what they’re thinking and feeling, but I most certainly have compassion and empathy and I can most certainly help someone if they’re hurt, if I’m comfortable with them. I do tend to freeze with less familiar people, but I think that might be normal!
I’m not saying I’m not autistic anymore. I am. But I’m so much more than autism. I ran into a lady from church, someone I’d sat next to once, at a service dog fundraiser, and she asked who Lexie was for. I told her she was for me, and she was confounded. But… why do you need her? Well, I have autism. She couldn’t believe it. But you’re so independent! I explained some of what we have in place for me to make it through bible study, where she sees me, and she was blown away. I was just happy it’s not blatantly obvious.
I think, as I grow and change, I think of myself less as autistic and more as…. Lydia. Just Lydia.
I never did like to be put in a box.
The long-awaited book!
21 Feb 2012 6 Comments
Some eons ago, I mentioned that I was working on a children’s book that would help parents introduce their children to the idea of being autistic.
I give you A Piece of the Puzzle, written by myself and illustrated by Lars Askaner of Sweden.
It’s our hope that this book fills a need within the autism community by providing an accessible bridge for connection between parents and children.
Oh, and Temple Grandin says that “this book will help young children accept having autism and encourage them to develop their special abilities.” Which is, of course, pretty cool in itself.
I hope you enjoy A Piece of the Puzzle!
Thoughts on processing speed
18 Feb 2012 1 Comment
I told you that I’d come back and give you the other puzzle piece, didn’t I? And it’s taken me a few days, I know. I’ve been trying to solidify a third point or example in what I’m about to say… but my brain is stuck (oh, the stuck– that’s another subject for another post), and I can only thing of two. I hope you don’t mind.
At least in terms of autism symptoms, I’ve been on quite an upswing recently. Whereas I had been regressing for some time, losing skills and myself, somewhere along the way the switch flipped and I started to regain both. Yes, I still stare at the floor half the time when I talk, and no, I’m no conversational genius. Still awkward and quiet, too, as far as I know. But those aren’t things that bother me to any great extent. The meltdowns and self-injury and inability to communicate… that’s the stuff to be avoided, and I’m happy to say those areas are much improved as of late.
So anyway, another little quirk that hasn’t caught up with the rest of me is my processing speed. I have seven ways to Sunday to cover up the fact that I often don’t know what’s going on around me… but the fact is, I often don’t. Whether it’s conversation, motion and visual processing, or touch, it takes me a minute to know what’s happening, and often, by the time I’ve caught A, the rest of the world is already at G.
One way that processing speed affects me is with greetings and automatic responses. If someone comes up to you and says happy birthday, you say thanks, right? Or if someone asks “how are you?” an “I’m well, and you?” is called for.
Here in AutismLand, it’s a little different. You may remember (although I don’t expect that you do as it was many eons ago) that I often say “thanks” when I’m getting off the elevator. The person on the elevator looks at me like I’m nuts! Or, if someone says happy birthday, my response is, often as not, “you too.” How are yous get met with “thank you” as well.
What happens is this: The person says the greeting, and I don’t hear it yet, so I respond based on what I think they said. I fill in the blank and answer “appropriately.” Then, after I answer, I process what the person actually said and it clicks. That’s where the oops comes in. But, given that the person is usually fifty feet away by the time I’ve processed it, well, it’s to late.
My other processing speed issue, related to visual-motor processing, is escalators. Now, I can usually do them. If I’m really overstimulated, sometimes I ask for the elevator. But even on a good day, those pesky things take me a minute. I tell whomever I am with that I need extra time… and it usually takes me 3-5 steps going by before I can get on. So, it’s not a long time that I need… but if the person behind me is expecting fluid motion, well, they might trip if they’re not prepared for me to stop.
I tend to think that some sensory integration work would help me with processing. Sensory processing and processing speed, for me anyway, are all wrapped up together. After all, the speed at which I process sensory input affects the extent to which I can integrate the input. I don’t have space or resources to do much sensory work… and I’m also kind of lazy in that regard… probably the most helpful thing to me would be a weighted deep pressure vest, but that’s not happening due to cost. I’ll have to get creative! My favorite word!
Big news, another post to follow
13 Feb 2012 2 Comments
Have you ever done a puzzle with someone who just isn’t very good at puzzles and keeps jamming pieces together that don’t actually fit? An old friend of mine would do just that. This left me in the position of trying to figure out how to disassemble his pieces and reassemble them correctly, all the while avoiding sending the message that, “Dude, you kinda suck at puzzles.”
This post makes me think of those poor puzzle pieces. I have two things to tell you… two puzzle pieces… but they don’t fit together. Tempted as I may be to jam the pieces together and put them both in one post, I’m not going to this time (though I have before and likely will again). It’s not good for either piece to be jammed where it doesn’t fit, yeah? And I don’t want to take away from either thing I have to say by jamming it with the other information.
So, piece number one is that I’ve found a publisher, a real publisher, for Living in Technicolor. This is the… oh, the second one I reached out to, Conditional Publications. Conditional is a publisher by and for people with neurological conditions, including autism. In fact, the founder has ASD! It’s a very small group, and since they’re currently working on another book, it’ll be a little while until they get working on mine. This is no problem for me. I’m kept busy enough with other things that waiting is just fine. Look who’s getting all patient, would you?
That’s puzzle piece number one, and I’ll leave you to digest that while I continue to mull and think about piece number two.
Oh. Yes, I’m still on a break. No, this is not blogging. This, um, updating. But really, I’ll blog as things come up and happen and occur to me. I’m just not going to force it like I’d been trying to do. It doesn’t work, anyway.
Taking a relaxing
05 Feb 2012 7 Comments
We’ve certainly been on a journey, haven’t we? I’ve been blogging here since just months after I graduated from college. I didn’t know anything much about autism. I had one friend. I had just been faced with the fact that maybe I wouldn’t haven’t a “typical” adult life, and I was learning to deal with that. Juxtapose that to today, when I know autism inside and out. I have friends near and far, and even some in person! And while I fully accept that I may not work or drive or own a house or have children, that’s not going to stop me from being the best Lydia I can be. Yes, we’ve been on a journey.
In the beginning and for several years, blogging was my way of processing the world. I couldn’t make sense of interactions and situations until I’d come and blogged about them. And believe me, I still need to type in order to understand. But, right now, I can’t really publicly type through my life. I need to do it privately.
I’m also running into the fact that, well, I don’t know what to write about anymore. I’m dry. Trust me, it’s not a good feeling.
And so, I’m going to take a break from blogging and recharge my batteries. I’ll come back when I feel ready, whenever that may be. If something happens that I want to blog about while I’m on my break, I’ll come blog about it. Maybe it’s not so much a full break as a… a… relaxing. I think I’ll maintain my Autistic Speaks Facebook page, so just check in there and you’ll know if I’ve posted something.
If you need me, just email me at autisticspeaks@gmail.com. I’m still here
It starts with a chuckle…
02 Feb 2012 2 Comments
I’m not one to wear my emotions on my proverbial sleeve. I can hide anything. I’m not proud of this, but it is what it is. Sometimes it’s pretty upsetting, when I’m falling apart inside but no one can read it on my face, so no one stops to help. I need to learn to express that I’m upset, and we’re working on that. Right now, I’m most likely to text it to you from 2 feet away. Hey, it works.
I’m a big fan of joy, let me tell you. I get great joy out of little things. But this face of mine, it doesn’t always show it. That makes me sad.
As I came off my SSRI a few months ago, for the first maybe two months, I cried at every little thing. Every touching moment… I’d be bawling. It was just withdrawal, but boy, was it weird! I never, ever cried (unless I was melting down) prior to this. It’s simmered out a little bit, and though I still cry more than I would have on the SSRI, it’s not all the time now.
But you know… I’ve noticed something else. I’m not sure when it started. Not sure where it came from. Maybe it was when Lucy came. Maybe not. But, I also laugh. It started with Lucy, who tickles me… she jams her nose right into my bellybutton and oh, it tickles. And I laughed, so hard. I was hysterical. She does this about once a day, and I let myself laugh. No little smiles or polite chuckles, though that’s how it started…. I mean real laughter.
And then I’ve found myself laughing at things on the computer and TV. Sometimes, I laugh so hard I can’t continue to see the TV (have you ever watched Ellen? You’d laugh too!).
Oh hey, Ellen’s on. I’m gonna go laugh!
Stretching my legs
31 Jan 2012 2 Comments
I keep finding myself referring to the concept of “stretching my legs.” Sometimes I’m talking about my social legs, sometimes it’s my conversational legs, sometimes it’s my sensory legs… but I keep coming back to this.
Every week for almost two years, I’ve gone to a Wednesday morning women’s program at my church. It’s something like a hundred (maybe a little short of that) women. It’s packed. In the beginning, we sit around circular tables, talk, sing, pray, eat, all in one big room. Only, that “big” room is quite crowded. Then, we break off into four or five separate studies. I’ve done…. let me think… Esther (a Beth Moore study), SHAPE (which was sort of about finding your place in the body of Christ), Ezekial, and now A Confident Heart (based on the book of the same title by Renee Swope).
Can you imagine all the ways in which my legs are verily nearly pulled right out of their sockets?
Here I am, sitting around a table with six or eight other women, and expected to carry on conversation. Now, my staff is on my left and my good friend Heather is on my right, but truthfully, unless someone directs a question right at me, I kind of can’t hold up my piece of the conversation. I’m so distracted by the loud, colorful, moving environment that it’s pretty hard to think about chit-chat. Did I mention that it’s loud? These are women who I don’t know all that well, making it even tougher. Conversational legs.
I really like these people… just not all at once, please!
The sensory environment can be really overwhelming. The sheer volume of 100ish women is, well, loud! And there’s music. And there’s food and smells and lots of motion and did I mention the volume? Cause, well, it’s loud. Sensory legs.
Anyway, there are also social issues galore to ferret through. Hugs comes to mind. I’m not a hugger, unless it’s one of a very select few people. Maybe I’ll hug you one day too, after I’ve known you for some years and been through heck and back with you, sure. But most people don’t get hugs from me. And yet, people try to hug… time and again. I know you’re being nice, and I really do appreciate the gesture… but why must we hug so readily? Amidst the loud, colorful, moving room… a hug is enough to send me over the edge. Social legs.
So then we move to the studies, and my first issue is that I want to sit in the same seat every time. I chose a seat, the RIGHT seat, the first day… and every week since then, it’s been taken! I almost panicked. I had to sit on the side of the square I didn’t want to sit on, and my friend wasn’t beside me, and… and… it was all wrong! Rigidity legs.
Sitting in a room of, oh, 30 people? Listening? Sitting still? Oi vey. That’s enough to cause some serious anxiety. There go those legs, too.
I love, love, love this group, and I’m not about to let a little leg stretching get in my way of fellowship and worship. These women have accepted me, no questions asked, whatever I need to get through it. From becoming one of my very best friends to offering to me and giving me my Lucy, I’ve been so immensely blessed. Stretching is hard… but oh, is it worth it.
Torn between two worlds
29 Jan 2012 1 Comment
I warn you now that I don’t know where this is going.
I was at a new friend’s house the other day after bible study. She took one of the poems I wrote and worked it into a song, and she was playing and singing it for me, so we (staff and I) were at her house. What a nice lady, and a beautiful, gifted musician she is. She has such an infectious smile, infectious joy. Anyhow, while we were there, she said something like, “Now, I know you have autism, but I certainly can’t tell! How does it affect you?” And in the past, that would have ruffled me, maybe quite a bit. But this time, hearing the love in her voice, I just said, “Thank you,” and my staff mentioned that I hide a lot, which is true. We talked a little about sensory issues, too.
I try to get my mind around this.
Why, when student teaching, was it repeatedly brought up that “she can’t connect with the kids”?
Why, last year, were there threats of a group home?
If I present so very mildly, why can’t I function without staff 4 days a week?
Why? What’s the deal?
I tend to think that I have a kind of incredible ability to cover up. I don’t let my sensory issues show. Sometimes my own family can’t tell I’m overwhelmed until I completely shut down or lash out. Heck, sometimes, I can’t either. I think, if you knew what to look for… the body language and the far-off focus in my eyes… the frozen postures and darting glances… you might be able to tell. Maybe it happens in such a way that no one on the outside can see it… but I wish they could, because I can feel it!
Of course, if pushed far enough for long enough, I will completely shut down, stop talking, unable to process language verbally. Or I will lash out, screaming and crying and throwing things. But you know, that’s no fun for any of us, so I really try not to do that.
My communication ability is improving. I’m focused on two main things right now. One is to label my emotions, especially when with my staff. I tend to think, though, that if you know me well enough, and you type with me, I’m a pretty darn open book when it comes to what I’m feeling. Ask, Leigh, and Heather, ask my sister… they get it all. But fact is that I need to be able to express, to some degree, my emotions verbally, too, so I don’t get so frustrated. I do still tend to growl or slam my hands on the desk when I’m frustrated (can you say “checkbook”?), but I’m trying to say that I’m frustrated. I’d say we’re 50/50, right now.
The other thing I’m improving with is attending to topics of conversation which aren’t my preferred subjects. I have a long way to go here, but I am, as I said, getting better at it. My favorite thing is when my staff are talking together and I’m trying to keep up, and they stop dead and say, “Lydia, can you think of a question to ask us?” It gives me time to process. And you know, I usually can come up with something… it just takes me more time. We’re going to do an activity where we put topics of conversation in a box and pull them out, so each person can list a couple of her favorites, and then we pull them out and talk about them one by one. So, one time might be cats, but one time might be something I know or care little about. This is part of functioning in the adult world, and I look forward to improving my skills.
I think, at this point, the deal is that when you meet me, you don’t first think “autistic.” You might not think anything. And if you talk to me for a bit, you probably think, “Hm, she seems kind of young for 24.” But since the ladies at church and whatnot are older than me, ten years, twenty years, fifty years… I’m not sure they have a good hold on the fact that most 24 year olds are pretty adult. Thus, me acting more like I’m a older teenager, maybe 16-18, doesn’t stand out to them.
But that’s just a theory. The important thing is that people at church just love me and lift me up for who I am, labels or not. I wish that for every person on the spectrum! To be loved and encouraged for being who they are, beyond any labels.
