Finding Ourselves on the Autism Spectrum

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Eye exam anxiety

A typical Snellen chart. Originally developed ...

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Hi, Blog Friends.
 
Simon is going to his first eye appointment today to see about a problem he’s having in one of his eyes.  He’s having blurry vision in one eye, which may relate to an injury last year that we thought was no big deal, because he said he was fine. He’s nervous about the exam, and he’s worried about the possibility of having to get some type of corrective lenses.   He got upset enough about failing a routine school vision screening that he needed to come home.  Going to drag my 6-foot-tall autistic/ anxiety-disordered son there anyway, so any prayers or positive thoughts you’d like to send our way for a peaceful experience and a positive outcome would be appreciated. 
 
Thank you.
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Regrouping

I’ve got too many things running through my head at once to think out a coherent blog post this morning. But I’m in a happy sharing mood, so I’m just going to babble on for a while and see what comes out.

 My new address:
 

The first thing on my mind is that I’m glad I went ahead and changed my blog address – which also meant changing my user name – especially since it turned out to be a lot simpler than I thought. It was something that kept nagging at me after I unintentionally chose a username with my actual full name in it, which I use for lots of things, and realized that became the basis for my blog address. Goofy, I know, but I often tend to miss details like that. I focus in on one tree at a time, missing the forest and many of the other trees in the process. I haven’t had any bad experiences with my blogging so far, but I’m still pretty new to this, and I’m not ready to share the more spectrummy aspects of our lives with people who know me outside of this community at this point. I also don’t want to do anything to make my kids uncomfortable, which is why they already have pseudonyms here. So, anyway, this gives me a greater degree of comfort.

Simon was reading my blog:

I learned yesterday that my Aspie teenager had been reading a bit of my blog, probably because it was left open on my computer, which the kids end up using more and more for homework. I think for the most part he’s been ignoring it, but yesterday he asked a question about my choosing to put something in all caps in a recent post. He didn’t seem bothered at all by what I had written, and he generally lets me know in a big way when he’s bothered, so I’m happy about that.

We all need a mental health day from time to time:

Yesterday was a bit of a fallout day for Simon. After doing so well with the very intense experience of the robotics team competition, where his team got this special engineering award 

              

which he wore all through the next day :), he had a hard time managing back at school.  The change for Daylight Savings Time really didn’t help, either. (I’ve never been a huge fan of DST, and when we lived in Indiana for two years, we didn’t have to observe it.) Anyway, Simon made it reasonably well through Monday and even the beginning of Tuesday. By reasonably well, I mean he fussed a great deal and made a point of saying “this is insane” and “I really can’t do this” over and over again with reference to waking up, doing homework, etc., but with some help from me, he still got the job done. Then partway through Tuesday morning, he hit a wall.

So apparently somebody decided it would be a good idea to do vision screenings on the entire student population of the high school, and we had somehow either not been informed ahead of time or just missed the information. Simon has only ever had his eyes checked at regular pediatrician appointments, and there’s never been a problem. But these folks told him he didn’t “pass” the test with one eye, and that started a downward spiral. (That’s something we’ll pursue at some point, but he hasn’t noticed any problems, and this just wasn’t the day to get into it.) They did the testing during his second hour class, and he got too upset to make it to his third. I got a call from the teacher consultant saying he was in her office and having trouble. I hope I’ve mentioned at some point before that this woman is absolutely wonderful. Besides doing her job of being an intermediary between parents / students and the teachers extremely well, she’s taken time to get to know me and my son, and she lets him eat lunch every day in her office to decompress.

She and I talked. She passed along my assurances that he wasn’t in any trouble and that I would support whatever he needed to do, because he didn’t feel up to being on the phone right then. She called again later to say he was still having trouble relaxing, and this time he did talk to me on the phone. He decided to give a try at going to his fourth hour class, which wouldn’t be too stressful or require much interaction, and after that he decided he was ready to come home.

Hubby and I agreed over the phone that everyone needs a mental health day from time to time, so we were fine with him coming home. I made my boy some food and sat him in front of a funny television program, after which he played a video game. He never got the nap I was hoping for, but he eventually relaxed enough to face completing some homework and even helping Alvin with some of his.  Today he’s back at school and halfway through his day, and so far everything seems to be going OK. We fall down, we regroup, and we get back up again. Thankfully these days the process usually goes more quickly than when he was little. A lot more quickly.

Sibling stuff:

On a side note, poor Alvin had to do an unusual amount of difficult homework yesterday. Alvin takes a math class two years ahead of the rest of his grade, so he’s pretty good at math. And he has what amounts to a study hall at the end of the day, so he rarely comes home with much homework. Last night, even with help from Hubby and his big brother, Alvin spent two hours struggling through trinomial factoring. Simon became more helpful once I said that I’d give him extra video game time to make up for time he spent helping Alvin. 🙂 Simon is also very good at math and takes a class one year ahead of his grade – they didn’t offer two years ahead when he was Alvin’s age, which is a source of frustration for Simon and entertainment for Alvin. The nice thing about this arrangement is that Simon just had everything that Alvin’s class is covering last year. Later in the evening, Alvin told me that there were things Simon could do in seconds that were taking Alvin twenty minutes. Alvin said it took him longer because he’s not autistic. I think that may be the first time he’s referred to Simon’s autism as an advantage rather than an annoyance. I just told him that with all the challenges, his brother gets to be good at some stuff, too.

 

 

 

 

 

 

Try, try again

Busy weekend. Alvin went to a movie and sleepover birthday party at one friend’s house and now has another friend over to play video games after seeing a different movie with him. Theodore went to a friend’s laser tag birthday party. He was supposed to have a second party to attend after that, but the second friend isn’t feeling well today, so they had to reschedule.

Simon is off without us at an all-day robotics event. He left the house at 6:15AM and won’t be back until after 6:00 this evening. He went on his own with his robotics team, a cell phone, and some cash for lunch. For most kids, it’s pretty carefree day of fun. We’re just happy Simon sounded OK when we last spoke to him on the phone. This is actually the second day of a two-day event, and the first day wasn’t exactly smooth sailing.

Our boy has come such a long way. The idea of him being able to attend any function at all on his own is a relatively recent development. He has a parapro with him all day at school, and my husband and I have generally been with him everywhere else. Occasionally he can be at a friend’s house when the parents know him pretty well, but we still make sure to be on standby and listening for the phone. His dad still takes off work every year to attend various scouting functions and goes with the boys to summer camp for a whole week.

In seventh grade Simon finally found a club where he was comfortable. It was a strategy game club, and that year it was being run by a friend of ours who knows him very well. Simon loves strategy games and is annoyingly good at them, so he really enjoyed the activity. Plus they had snacks. Come to think of it, pretty much every activity I’ve been able to get him to attend without having to twist his arm has provided him with food on a regular basis. Whatever works. 🙂

This year Simon started high school, and he’s tried quite a few different activities on his own. He’s had issues with at least half of them, but he’s also found a few keepers. One is the game club, which not only offers strategy games, but now Simon finally has people with whom he can play Yugioh without having to enter an official tournament. And he loves GO club. GO is an ancient game involving little black and white stones placed on a board to try to gain and take over territory, and Simon is developing a reputation for his playing ability. Hubby is annoyingly good at most games, too, but he can’t beat Simon at GO, and it pisses him off.

Simon also joined the school robotics team. This is much more of a time commitment, plus it involved some financial investment. Simon has had some problems with frustration over tasks in which he is less interested (he mostly likes programming), dealing with people who don’t seem to know what they are doing some of the time, and – since the build season started – sensory overload from all of the noise. Though he’s been attending fewer of the meetings, he’s hung with it, and he decided to go to two of the team’s regional competitions, the first of which started yesterday. He got to take the day off of school, which was a plus. He still has to do all the homework. And he still had to get up at 5:00am yesterday and today to ride the bus an hour away.

We weren’t sure Simon would be allowed on the bus yesterday, because he hadn’t attended the last meeting, which we found out later was supposed to be mandatory, and because he hadn’t been there to receive his team shirt. But they gave him his shirt and let him on, and we let him go. There aren’t any parapros for optional team trips, BTW. Hubby said he’d be available to go retrieve the boy if needed, and I made sure Simon had a cell phone to call me. We knew the noise level would probably be a sensory nightmare, but Simon’s tolerance has increased over the years, and we hoped the promise of food and hours of mechanical competition would be enough to compensate. It wasn’t. At least it wasn’t yesterday.

The teams took a break for lunch around 1:00pm, and I got a call from Simon saying he was feeling like he’d had enough. The place was an hour away, so I needed for him to hang on for a bit. I did my best to try to find out what was happening and how I might be able to help while I also contacted his dad, who had really been hoping to not get this call. It was hard to hear while trying to have a phone conversation with Simon through all the background noise, so we started texting. Over the course of the next hour I got messages from him saying he was exhausted, he couldn’t concentrate, he couldn’t find the food, and he couldn’t think clearly. At least he could still text. In between bouts of kicking myself for letting him go in the first place, I sent back messages suggesting he find some water, asking if he could see anyone he knew, and finally just asking where he was so his dad would be able to find him.

Turns out Simon didn’t do badly at all. Besides having the sense to call and ask for help, he stayed with his group and did his best to remain calm until help arrived. He also lost the money we sent with him and his new team T-shirt, but at least he kept the cell phone. 🙂 His dad and I decided the best plan would be to try to help Simon find food there and experience some recovery before talking about leaving. Hubby helped Simon to get food (which was on very large tables right out in the open that Simon was just too stressed to be able to see) and taking him out to the car for a quiet place to eat and regroup. Hubby did such a good job being flexible and supportive in the face of his own frustration. They discussed options, and a now fed and calmer Simon decided on his own to go home and try again in the morning. By this time, it was about 3:00 in the afternoon.

This time we sent Simon off with a backpack containing a water bottle, plus some extra cash in case he lost track of what we’d given him in his wallet (the loose cash from the day before never was recovered).  We also sent along two sets of earplugs to help him manage the noise level.  I couldn’t reach Simon during the morning today, which wasn’t making me happy in light of yesterday’s difficulties, but I also knew he might not be able to hear his phone, and he doesn’t always notice it on the vibrate setting.  He called at lunch to say he was doing fine , and he seemed in good spirits. No mention of wanting to leave early. He found out where his missing T-shirt ended up, and he knew where to find the food. I’m having trouble reaching him again, but by now the event should almost be over. So now I’m just waiting to hear.

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It’s after 8pm, and my boy is finally back home.  Simon said he had a great time even though his team got eliminated in the quarter finals  and that the medal he is now sporting around his neck is a special engineering award given to his team.   He was talking on the short drive from the school back to our house about underdog victories and mascots and other things he found very entertaining.   Now he gets to relax and stuff himself full of ravioli and garlic bread here at home.  He’s a pretty happy guy and very glad he decided to give this another try. 🙂

 

 

 

Perspective

I haven’t been in much of a writing mood lately. For me, that comes and goes. Figured I’d better sit down and try to write something, though, before the inertia becomes to strong for me to get going again.

I woke up in a bad mood yesterday. Just generally feeling really off, and the way the morning proceeded did nothing to convince me that it was going to get any better. Simon is always out of sorts in the middle of the winter, and it becomes a struggle for both of us just to manage the normal requirements of the day. On this particular morning he had also lost track of his school ID and a couple of assignments, and his binder for one class had come completely undone and out of order. He had also been up late working on some of the homework that he couldn’t find, and he hadn’t had much free time after putting off things that should have been handled on the weekend, so he was in a pretty foul mood. It was not a good start to his day, and I was too tired and frustrated to be particularly patient. I really hate sending him off to school like that, and I spent the whole day wondering when a phone call would come telling me that his school day had fallen apart, too.

After Simon leaves, I get Alvin up. He’s usually runs pretty much on automatic, so I was able to squeeze in a quick shower before getting him out the door. Theodore requires more attention, and there was some arguing involved in convincing him that this was not the best day to tell Mommy that morning chores were done when they actually weren’t. I got him to school, too, then headed home to regroup before starting on some errands.

When I arrived home I found my friend from a few doors down and her two youngest children at the foot of my driveway. She informed me that she’d misplaced her car keys and needed a ride to the school. She figured being so late she’d need to sign her daughter in, but I said my Theodore had gotten in OK and asked if she wanted for me to just take her daughter and give it a shot. At this point my friend disappeared from view at the side of my car, and I discovered she had fallen on the one patch of ice remaining at the foot of my driveway. She was sore, but nothing was broken. I offered to take her and her son to his doctor’s appointment, but she insisted it was within walking distance and that she wanted to walk. I got the daughter to school, then headed back to check and make sure she was still doing OK before going on with my day.

My own day started looking better to me right around this time. My friend has two of her four kids on the spectrum, and a third has an auditory processing disorder. Her husband had recently broken his wrist very badly falling on some ice on their own driveway and has had the first of two surgeries. She works weekends as a nurse to help support her family. And then she went and lost her car keys and fell in front of my house on her way to walk to an appointment. Yeah, my day wasn’t really all that bad. She called me later to say she found her car keys – in the ignition of her car and turned, so the car battery was dead. I couldn’t even offer her a jumpstart, because my own car has had to be jumpstarted almost every day in the past week – but at least the rest of the time mine was running. She had an AAA membership and got someone out to get her car going, so it all turned out fine.

I had another perspective-changing moment later in the day when Simon’s teacher consultant called. This woman is just about the most useful individual in my world right now and provides just the right official and unofficial support for my son in his school day. She actually listens to what I have to say and trusts my judgment, and she does a lot of the interacting with the parapro and teachers when things become difficult. She really seems to understand my kid and what he needs, and she’s always very positive and notices progress he’s making even in the midst of problems. Besides officially meeting with her twice a week, he eats lunch in her office every day and has a chance to decompress and and mentally sort through his day, which makes a huge difference for him.

The teacher consultant primarily called to address a question I had raised with regard to scheduling classes for next year, but we ended up discussing how much Simon seems to be struggling right now and how on top of things he had been for a little while previously. His pet dying really hasn’t helped, and neither have the snow days and school breaks and sick days that inadvertently took away his momentum. The good thing about the conversation was that I found myself pointing out just how much better Simon is doing that in previous years and how his off days now look better than his best days used to look not so long ago. She hasn’t had the opportunity to see this for herself, since she’s only known him for a few months, so I really appreciate her taking my views and my experience so seriously. We ended on a very positive note about hanging in there and appreciating all the positives and all helping where we can, and I became determined to be a force for good and optimism and appreciation for all my kids’ good qualities and accomplishments by the time they got home.

My whole attitude turned around. Truth be told, I haven’t been all that much fun for the past several days. I put a colorful welcome home sign on my door and a smile on my face and greeted each of my family members with genuine joy at their being with me. Nothing in the evening went much differently than usual in outward terms. We still had activities and homework to manage and conflicts arising, but I didn’t take it all so personally. I handled each thing as it came up, even including a 20-minute phone call (I hate the phone) discussing a potentially stressful situation at our elementary school . I made sure people’s needs were met, I was flexible and adapted where needed, and I even infused a little playfulness and humor into the evening despite some initial eye-rolling from my older children. It didn’t fix everything, but it really did help to keep things from spiralling out of control. And these days, for us, that’s about the best I hope to get.

It’s carried over into this morning. I got up late. Simon was moving in slow motion all through his morning, and the out of order binder from yesterday that will be graded soon is still out of order. Alvin was upset with me for making him do five-minutes-worth of morning chores after I woke him and he fell back asleep. I was out of Theodore’s favorite school snack and forgot to buy more the last time I was at the store. And I didn’t panic or get upset over any of it. And because I didn’t panic, neither did anybody else – at least not for more than a minute. I have to say, though, that I have real concerns about any group in which I am expected to be the calming influence. 🙂 I wonder how long this will last. For now, I intend to enjoy it while I can.

Freaking out

This is the third new post I’ve started in as many days. My thoughts just haven’t been coming together around anything in particular. I think I’ve got something to share now, though.

I was woken in the middle of the night last by a six-foot-tall teenager telling me he was “freaking out” and couldn’t get back to sleep. I have a tendency to freak out myself when my sleep is suddenly interrupted – that really made the baby years fun – so I wasn’t exactly at my best for handling the situation. It seems that what put my already anxiety-prone son over the edge was watching a scary TV show last evening. This is usually supposed to be an issue for younger kids, but it’s not that way at our house.

I hadn’t even authorized the viewing of this particular show, which was, by the way, not one of the scariest Doctor Who episodes I’ve ever seen. But you can never tell what’s going to hit a nerve with another person, and I get that. I personally stopped watching a lot of crime dramas, because that stuff really happens to people, so it does tend to bother me. I’m not so much worried about aliens moving into secret rooms in my house that I don’t know exist or impersonating me while I’m in a coma.

So it’s my fault the show was available, because I mostly record them for me. Hubby is finally watching some with me, mostly because a lot of his favorite shows are into reruns, and there aren’t any compelling sporting events to watch at the moment. So he gave a couple episodes a try and decided it was actually kind of fun. Also, Alvin usually likes a lot of what I like, so he starts watching any time I turn on an episode when he happens to be around. Even the very sensitive seven-year-old Theodore has started being OK with having the show on and not feeling a need to go elsewhere, so I figured maybe we were OK in terms of everybody’s comfort level. And thanks to our new trial DVR setup – which we’ll probably have to give up after the introductory low price runs out – we can watch anything we have recorded on any of the televisions in the house. So while Simon was supposed to be getting his homework finished in the basement, Alvin turned on the episode, and that’s when the work stopped.

Simon actually can’t stop watching something once it’s got his attention. I’ve tried. He’s tried. I can yell right next to him or even walk around in front of the TV waving at him, and he just keeps looking around me, even though he knows it’s going to cause trouble. No matter what is on or who is watching, everyone in the house now knows to respond to the word “pause” where the TV is concerned, so that I can get my kid back. (In a house full of guys with a mom who can only mentally attend to one thing at a time, this is sometimes necessary with the rest of us, as well :)) Even Simon can usually pause the show, but he can’t just stop watching or look away while it’s playing. So it was a bit of a challenge when I came by inquiring about the status of his homework to get Simon back working again. Alvin paused the show, but Simon was hooked in by then, and kept begging me to let him finish. I probably would have gone along if it wasn’t getting so late in the evening and if I wasn’t already worn out from a snow day at home with the kids.

It turned out that there was more than one unfinished homework assignment, and one assignment was missing altogether. So we spent the next half hour looking for the missing assignment while I was supposed to be making dinner, but we didn’t end up finding it. Simon eventually got his other assignments done, and I agreed to let him finish the show – there were only 15 minutes left, anyway. He mentioned that it was kind of creepy, but he smiled as he said it, probably because he really likes the funny bits, so I wasn’t especially concerned. Some things bother him and some don’t, and it’s hard to predict what will be a problem. It turned out that this was a problem.

Simon came downstairs a while after going to bed and was a bit restless. He said he might be a bit wound up from the show, and I asked if he had something more relaxing to read in bed. It took a few minutes, but he came up with his copy of Cheaper by the Dozen – he’s listened to the whole book on CD many times, but this was a paperback copy he decided to try – and things were looking good. It’s a comfort thing for him, and I was pleased that he had come up with the idea on his own. When I went upstairs a little while later, he was already asleep. Problem solved. Not.

So I get the knock on my door sometime between midnight and one. The first thing I tell my son is No More Doctor Who. Then, in my confused and stressed and under-pressure-to-fix-things state, I spend an unfortunate period of time listing all the problems that this has caused and would probably cause in the near future – my inability to get back to sleep, the fact that we both had to be up at 5AM and would both likely be useless then, the fact that he was going to be extra tired while trying to deal with talking to his teacher about his missing assignment and also returning to the new class this semester that already had him so upset that he had to leave class the day before, etc. And I let him know that I didn’t have a quick fix.

When I had started to calm down a little, I found myself talking to Simon about taking control of his thoughts and developing some skills in less stressful moments that he could have ready when he did find himself “freaking out”. I talked about my personal spiritual beliefs and about finding his own beliefs that could carry him through difficulties. I mentioned that sometimes the good in the difficulties we experience is that we are motivated to reach for something better than just learning to live with discomfort – that we can have more than that and are meant for more than that. I also told him that when I wake up on my own once in a while “freaking out”, there are things I read and ideas that I focus on that help to remind me that I get to choose which thoughts to hang on to in my mind and which to send packing -that just because a thought appears in my head doesn’t mean I have to claim it and feed it and make it my own.

I’ve tried having some of these talks before, but because the subject isn’t entertaining, it’s hard for Simon to pay attention for long. That’s always bothered me, because I know what it is to have some measure of these problems, and I want for my son to be able to have the help that I’ve had. He seemed fairly motivated right then, and we didn’t have anything else to work with, so he went along. I got him to work on counting and slowing his breathing – that’s one we’ve practiced before – and I prayed out loud and said some affirmation-type stuff that I’ve personally found helpful, and he started to feel calmer. He even came up with an affirmative thought of his own. I stayed in the room while he went to sleep.

Here’s the cool part. This morning, after we both woke up enough to be somewhat coherent, Simon told me that something had changed for him. He said that before the way he’d always gotten through things was to just put things that were bothering him back in some corner of his mind and try to just move around them or ignore them, but they were still there. He said that in just a few minutes of listening and breathing he was able to feel so much better and like he really could choose different thoughts. I mentioned that he could use some of what he’s learned on his own the next time he’s having a difficulty, and that we’d have a better starting point the next time he wants help from me, since we have an idea what’s working for him. He plans to write some helpful thoughts down at bedtime to keep next to him for when he’s having a problem. If that works out for him, I think I might suggest that being a helpful practice for before problems start.

Once we were both in this better frame of mind, Simon found his missing homework assignment. He even had time to complete most of it before leaving for school. As I keep finding to be the case, we didn’t get to choose the experience we were going to have last night and this morning, but we did get to choose how to respond. We even got to choose again after getting off to a bumpy start. And for us that gave the experience meaning and value.

I’m glad I’ve found a place to share these moments. This isn’t exactly Facebook material. 🙂

Coming back into focus

I get overwhelmed a lot.  By events, personalities, sensory input, illness and injury, too many responsibilities, too little time  – even sometimes by a single thought that goes round and round in my head.  Mostly it’s the thinking that gets me.  When my head is in a good place, I cope with the other stuff. 

I’ve  tried to start several different posts since my husband’s truck accident.  I can’t seem to get my thoughts organized around any one topic.   We’re both functioning fine and grateful for how things turned out, but we’re also still processing some things, and for me that takes the form of having trouble concentrating.   That’s not a new experience for me, but trying to write and stay in touch with people when I’m feeling that way is new.  Isolating myself has always been much more my style.

Here’s a picture we took at the junkyard the day after the accident, btw :

The force of the impact was all on that driver’s side door.  Amazingly enough, my husband made it out of this with just a sore foot and one scratch on his head, neither of which is bothering him now.   And the other driver was fine and didn’t require a trip to the hospital, which is also a great blessing.

It could have been so much worse.  We got through the crisis of the day, and now we continue to manage any difficulties that arise as a result.  We continue to add little bits to the pile of stressors that’s been built up over the past few years, and we keep moving forward.  There’s a lot of stuff in that pile.  Deaths in the family, business difficulties, financial worries, his experience with cancer a couple years back (he’s all clear now), and all the stuff that falls under the heading of spectrum-related issues.  Some things are mostly difficult for a while, and some are always with us.  And every time it feels like it’s a bit too much to manage, something new gets piled on top.

I spent so much time early on in our marriage weathering problems big and small and waiting for things to get better.  I kept thinking we would get to some point where there would be a big light at the end of the tunnel, and we could breathe a sigh of relief.  I really thought we were there for a while when Simon was in kindergarten, verbal and bright and functioning reasonably well in the safe little world that existed there.  He had overcome so much.  Then came the next tunnel – first grade – which was much longer and darker than anything we had experienced before.  We’ve come through that, too.  And on to the next, and the one after that …

I had to switch metaphors somewhere along the line.  Now to me it’s more like riding waves.  When things are good, I enjoy the ride thoroughly and for as long as I can, because I know it’s only temporary.  The bad stuff is only temporary, too, which makes it easier to tolerate.   I think what maybe constitues my own version of a mid-life crisis is that somewhere in these past couple years I let go of that idea that someday everything will get better, and I think I’m still grieving a bit over that.  I’m not devastated, but it makes me sad.  Some things will get better.  Some will get worse.  It will all keep changing, and the only thing we can do is choose how we respond to each thing as it comes.   My parents are in their seventies and have a good life, but it isn’t anything you’d call better – it’s just different.  The problems are different, and the enjoyments are, too.  For better or for worse, I think I finally feel like a grown up. 

OK, that was kind of a depressing thought.  But now that it’s out there (instead of rattling around in my head), I don’t really feel terribly depressed.  I’ve been to this place in my mental processes before.  This is the point I have to reach just before I finally decide to take charge of my thinking.  Once I can see what’s going on, I get to choose where I go next, and that’s empowering. 

There’s some kind of story my mom got from her Alanon experience that I’m probably not going to get exactly right here, but I think it’s still worth sharing.  (I realize this is yet another metaphor, but that’s how my brain works, so please bare with me.)  It’ something along the lines of a person walking down a path and falling into a pit.  Eventually somebody comes by and helps them out.  I’ve heard different variations of the story.  Sometimes the person who falls in repeats the experience enough times that eventually they learn how to find their way back out on their own.  Sometimes the one who comes to help jumps down into the pit, too, which turns out to be OK, because that person has been there before and knows how to get back out.  Sometimes the person walking down the path has fallen down enough times that they remember and learn to avoid the pit altogether. 

(If I was being at all unclear here, the pit is supposed to be a metaphor for a negative behavior or way of thinking. 🙂 )

I’m not so good at avoiding the pit, although it happens every once in a while.   Mostly I’m better than I used to be at climbing back out on my own once I realize where I am, but that can sometimes take a long while, and the effort can be exhausting.   It just seems to work a whole lot better when there are people around to remind me that I don’t have to stay where I am if that’s not working for me.  It’s hard to reconcile that knowledge with my lifelong instinct to run and hide within myself whenever I feel stress, so I’m trying  a different approach. 

I’ve been catching up on reading some other blogs over the past couple days, and I’ve started Rudy Simone’s Aspergirls book, too.  Reading other’s thoughts and experiences helps me to remember that I’m not alone in mine.  And whether this post makes any sense to anyone else or not, writing this and other things I’ve shared with family and other friends over the past couple days is helping to bring things into focus for me.  Thanks for listening.  

 Aspie boy just finished his midterm exams and came home early, so he and I are enjoying some peace and quiet while we have the opportunity.   The kids are all off school tomorrow for a “records day”.  I finally feel clearer and ready to move forward instead of staying stuck.  That’s not a bad way to start into a long weekend .  🙂

Helping each other

A few months ago I was at a local support group meeting for parents of kids with Asperger’s Syndrome. It was started by a couple friends of mine with kids on the spectrum, and we’ve been meeting about once a month. One of my friend’s daughters agreed to come and speak to the group to share her thoughts and experiences as a young woman with Asperger’s. I was impressed with how well-spoken she was and with her bravery in being willing to speak with the group. It made me realize that someone being poised and articulate and performing well in school didn’t necessarily eliminate the possibility of that person being on the spectrum, and that led to more exploring of my own life experiences. Starting out on that path has led me to meeting many wonderful people who have helped me to understand that I am not alone and that who I am is really OK.

Soon after reaching the conclusion that I was probably an Aspie myself, I was presented with the opportunity to help this young woman in exploring her own life. She had decided to write a research paper about having Asperger’s Syndrome, which was a huge step for her, and I was asked if I would agree to be interviewed as an older woman who was self-diagnosed. In typical Aspie form, and because of difficulty arranging both our busy schedules, we handled the interview by exchanging emails rather than in person. It was an interesting experience for me and served to reinforce my realization that I’ve spent my whole life using my mind to figure out strategies for coping with situations that didn’t feel natural to me.

This week we had another support group meeting, and my friend read the very eloquent conclusion to her daughter’s 25-page paper, in which she had expressed how much better she was feeling about herself and her future after having worked on this paper. I asked my friend for permission to share the email she sent to me after the meeting and offered to change their names to initials to protect their privacy:

“Hi Diane,

You have no idea how much hope you have given me for L by revealing your suspicions about having Asperger’s. When you first emailed me and said you think you have it – I thought no – you’re outgoing and friendly and socially appropriate and a great mom… you don’t appear to be on the spectrum. But after reading articles about girls and Asperger’s, well, it’s very different than for boys. Girls can hide it so much better or like L says – “fake being normal.” The more I learn about it, the more I see it in two of my sisters and my mom and my grandma.

Your advice to L not only helped her to write a great paper, but also to learn how to tackle her own personal issues. She has used your “cognitive therapy” approach to talk herself down when she is anxious and she says it helps. Knowing how well you have turned out – you have given me hope that L WILL eventually drive, she WILL go to college, she WILL get a job, get married and hopefully be a mom, too. So thank you for trusting me enough to share this information about yourself.

p.s. I liked our quiet little meeting where it was just the three of us!

p.p.s. L is gone for a whole weekend on a Youth Group Retreat and I didn’t have to force her to go. 🙂

Take care,

B”

This absolutely made my day, and I wanted to share J We really can make a difference in each other’s lives.

 

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