Finding Ourselves on the Autism Spectrum

Posts tagged ‘anxiety’

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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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. 🙂

 

 

 

It seems I was mistaken

It seems I was mistaken.

My middle son, Alvin, likes to make noise – constantly. He hums and drums and whistles quite loudly all through the day until each and every other member of the household is at their wit’s end. And I have honestly believed, up until quite recently, that this was done for the express purpose of annoying the people around him and/or getting attention. It has seemed even more bothersome in light of the fact that two of us have Aspie issues and difficulties tuning out background noise in order to function. And when my NT husband who doesn’t generally have these issues has also been driven to distraction, I have usually concluded that the noisemaker was, in fact, being a trouble-maker.

Please understand, Alvin does cause trouble. He “stirs the pot” so to speak and will move from room to room in our home starting unpleasant interactions with whomever he finds. Besides making random noises all through the day, he will talk at length to people who are clearly trying to read, nag people about issues on which they’ve already declared their position quite clearly, comment upon siblings’ activities and personal habits, and even harass our pets when he’s feeling bored – all seemingly just to get a response. He also has a tendency to invade other people’s space and to barge into rooms that aren’t his when other people are trying to be left alone, because he doesn’t like being alone. And when he’s not doing any of that, Alvin’s still making seemingly random noises.

I usually deal with Alvin’s anxiety and boredom by going along with whatever social plans he happens to make, giving him jobs to do which take him out of the room currently being occupied by his latest victim, and trying to find books series for him to read. Once Alvin finds a series he likes, he’s a reading machine. I also try and create times when I will specifically pay attention to him and give him a chance to tell me about whatever is on his mind. He doesn’t really require that other people participate in his conversations and frequently argues with whatever they say, anyway, but he has a tremendous need to talk. Still there are frequently times when enough is enough, and I just need a few minutes of quiet in order to think before I can figure out how to meet his needs and mine and everyone else’s. And that’s generally when things like the random noises become too much.

Alvin doesn’t have a diagnosis. I can tell from my experience with Simon that Alvin has major anxiety issues, and I’ve witnessed his temper. I even took him to therapy for a while to try and work on anger management. He has problems with being alone, unless he’s really engaged with a book or a game, so he keeps seeking out company. Then his general behavior begins to annoy whomever he’s with, and Alvin gets defensive and angry. He’s smart and loves to argue, so then the interaction turns into an argument, which with siblings can often escalate into something physical. So basically, the kid moves from room to room leaving problems in his wake. I can actually tell what room he’s in by listening for where there’s a problem brewing in my house, and when he’s away at a friend’s, the house is noticeably quieter.

Once again, all of us including myself have been working on the assumption that Alvin is doing this on purpose – or that at the very least he has some control over his behavior that he’s not exerting. He’s not autistic. He behaves very well at school, and I’ve never had a complaint from any of his friends’ parents. He has at least a general understanding of which of his behaviors are problematic for other family members and why, because he’s been told at length again and again. But it just keeps happening. And I think I’m starting to see why.

As it turns out, Alvin is constantly making noise even when no one else is around. Lately I’ve been finding him humming and drumming and tapping and whistling even when there’s no one there to annoy. I’ve also been trying out this idea of looking at my other kids the way I look at Simon – not assuming he can do things just because others can or because he’s supposed to be a certain way at a certain age. Simon has a diagnosis and a whole string of professionals who could give reasons why he has certain difficulties. Alvin doesn’t have any of that, but does that really mean there’s nothing going on with him? He’s certainly anxious, and while that might be reduced if he weren’t in such frequent conflict with those around him, for now maybe the noise-making behaviors are just his way of soothing himself. That’s how I would interpret the situation if it were my Aspie son doing the same things. Why should he be the only one who gets the benefit of the doubt?

My husband will occasionally joke that Simon is my child and Alvin is his child because of their personality traits, and I haven’t disagreed. (We’re still not settled on which of us gets to claim our overly social Theodore :)). More and more it’s looking like I’ve been judging the behavior of my essentially NT middle son differently simply because he’s not an Aspie. Looking back, I think I’ve been holding Alvin to a different standard. It’s a standard that hasn’t worked for at least two of us in this family, so why should I assume it would work for him?

Just as I’ve been in the middle of writing this we’ve had another problem between siblings. It was typical in that there was really no one person at fault. Simon didn’t want Alvin invading his space, Alvin was just trying to talk to him, and everybody overreacted. After separating them and solving the immediate problem, I told Alvin some of what I’ve been thinking about things that he does not really being on purpose and maybe just being a way to calm himself. He told me that the “not being on purpose” part was what he’s been trying to say before, and I told him I was sorry for not understanding and believing that right away. I’m not sure exactly where we go from here, but just saying that seemed to calm him down quite a bit. We still have the problem of managing the needs of a family member who feels compelled to make noise and the needs other family members who require quiet in order to think and function. Hopefully with all of our needs on more equal footing we can start to make some progress.

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. 🙂

Coping with feelings

I read something at Alienhippy’s Blog towards the end of December, when I was brand new to the blog world, that really stuck with me: 

“I think that the lack of empathy thing is just a shut down mechanism of self protection because emotion is so intense …”  (You can find the rest of the post here http://alienhippy.wordpress.com/2010/12/29/toys-and-empathy/ .)

That was one of the first things I read that let me know I had come to the right place – someplace where another person had actually felt some of what I felt and understood.   Up until recently, that was a very rare experience for me.  I’ve had quite a few of these moments since then, and I am so grateful to have met so many wonderful new friends.

 In my “Figuring It Out” post I wrote about my difficulty in accepting negative feelings in my kids.  I had come to the conclusion that this had something to do with my feeling responsible for fixing things.  As the mom of a child on the spectrum, it always feels like I’m the one who has to handle a problem, because no one else seems to understand what to do.  So I’m constantly on my guard for things that look like problems, and I’m anxious because the truth is I don’t always know what to do.  I’m also afraid that if I don’t figure out what to do pretty quickly or if I get it wrong, the problem will get bigger, and everyone will suffer as a result.  Seeing that typed out makes it seem like an awful lot to ask of myself.  But it’s what I’ve been doing for all these years, and it gives me a sense of fulfillment to make such a meaningful difference in my child’s life.  I just have to learn what is truly helpful and what is just stress.

I think there’s something else happening in the anxiety I experience over other people’s feelings, and over my kids’ feelings, in particular.  All my life I’ve been overwhelmed by any strong emotions in myself or others.   When my parents would argue, I shut down.  When other girls picked on me, it was the same thing.  Instead of expressing or even just processing something, when it got to be too much, I turned it all off so that I could keep on functioning and doing what I needed to do.   It wasn’t that I didn’t feel anything.  It was that I didn’t know how to respond or what to do about it, and I couldn’t tolerate that state of extreme anxiety for very long, so I found a way to make it stop altogether.  The thing about stopping emotions is that you seem to have to stop all or none of them, so I ended up blocking a lot of good stuff, too.  Thus began my ongoing relationship with depression. 

My kids have plenty of their own difficult feelings, and each of them has a tendency to get overwhelmed pretty quickly.  Simon has been diagnosed with an anxiety disorder, and I know Alvin well enough to know that he has a worse time with anxiety even than Simon.  Little Theo is only seven, so it’s hard to know how much of his reaction to things is just because he’s so young.   What is hard for me to experience with all my kids is that they don’t seem to do this shutting down thing – at least not around me.  Each of them – even Simon now to a large extent – is holding it together through their school day and through some other activities.   Then they come home, and I get to enjoy the aftermath.   Being confronted with a bunch of unrestrained energy and emotion from three different individuals is just not something that I came equipped to handle. 

I find myself a lot of the time either trying to fix what’s bothering my kids so they can be happy or brushing off their feelings in the hopes of not having to deal with them.   I’m wondering if maybe my not wanting to be around their negative feelings is because I’m afraid of experiencing those feelings myself.   If I allow myself to feel what they are feeling along with them, I’m afraid I will be overwhelmed.   It makes me anxious when I am confronted with a stressful situation and I’m not already in an optimal state of mind, because then I don’t have access to my instincts, and my instincts are what I trust to help me make good decisions.  

A while back I started reading a copy of How to Talk So Kids Will Listen and Listen So Kids Will Talk, and a great deal of it is about the healing effect of just letting your child express a feeling and letting them know that you hear what they are saying without trying to fix or judge anything.   This is completely counter-intuitive to me, because like the authors and much of their audience, I hadn’t experienced a lot of that myself growing up, and my own spectrum issues don’t make it any easier for me to pick these things up on my own. I’ve managed to try this approach on some occasions – ackowledging or reflecting back a child’s feelings without adding any emotional charge of my own to the situation – and the results are truly amazing, even with my spectrum son.   It turns out they do have the capacity to work some things out for themelves and even to calm themselves down, and when they still need some help, we’re all in a better state of mind to figure out what to do next. 

I’m starting to see why this approach is so powerful, given the effect that blogging and exchanging ideas is having on me.   Having a place to express myself and a community of people who will respond with encouragement and understanding  allows me to release a lot of what’s bottled up inside and to relieve some of the pressure.  It allows me to breathe and opens up a space where there’s room to care about others.  Thank you all for that.

Figuring it out

I just figured something out.  I experienced one of those “lightbulb moments” that don’t come nearly as often as I’d like.  I just saw the relationship between a particular behavior pattern of mine and the situation in which I find myself living each day.  Kind of like figuring out that I’m on the spectrum, this doesn’t really change the nature of me or my situation.  But suddenly my frame of reference has shifted, and somehow that makes a difference in how I feel about things.

I’ve always been very much a “live and let live” sort of person.  Not only do I not feel a need for others to believe what I believe or act as I do (provided they aren’t hurting anybody), but I actually think it may be necessary and important for them to believe or do something entirely different.  We are each unique individuals with different brain chemistry, skill sets, belief systems, and life experiences.  What works for me may not work for you at all.  We may be at different points on similar journeys, or we may be on different journeys entirely, since we all start in different places.   I enjoy sharing with others and having them share with me so that we can possibly benefit from one another’s different perspective and insight.  I really don’t feel a need to decide for someone else what they should think or how they should feel.  Mostly.  Except there’s this thing with my kid.  

Once again, I don’t feel a need to insist my kids embrace my personal belief system.  It keeps evolving, anyway, so it’s not like it’s something they could adopt and be done.  And I don’t get to decide that for them ultimately, anyway.  I share my views with them, but I also let them know about other people and others ideas.  Whatever decisions they make, I’d like them to do that with information and not out of ignorance.  And I share ideas that I’ve personally found helpful in terms of managing conflicts, dealing with difficult feelings, and coping with physical issues like sensory overload without necessarily expecting that they will adopt them – I can only hope.  I feel pretty good about all that.  But I seem to have this huge problem accepting my kids’ negative feelings.  And I think I’m starting to get why.

I can remember getting really annoyed with my mom years ago – prior to my son’s diagnosis – when she suggested I was too concerned about making my then-only-child happy.  I considered myself too evolved to try and control another person’s feelings.  Except, I learned later that she was right.  I don’t just want for my kids to be happy.  On some level I need it, or at least feel like I do.  And I think maybe it all comes down to one underlying belief:  that feelings signal something needed to be fixed, and I’m the one who has to fix things or they won’t get fixed.

My husband once called me “Annie Sullivan”, referring to the woman who first helped Helen Keller to communicate.   At that moment I had ten of my fingers on one of my son’s and was showing him what he needed to feel in terms of pressure in order to operate the control for a toy racetrack that was frustrating him.  Hubby had tried unsuccessfully for a while, but I had an inspiration and tried a different approach, and it worked.   That’s happened a lot over the years.  I’m not the only one who ever has an important insight, but the great majority of the time, when something about my enigmatic spectrum son isn’t working and everyone else, including him,  is out of ideas, I’m the one who gets things moving in a positive direction.  It’s my job.  And the ability to do that gives me feel a sense of specialness and purpose.  It’s become a big part of my identity.

I remember actually praying once for God to please provide whatever I needed and to change me into whoever I needed to be in order to help my spectrum son with all his difficulties.  No conditions.  Just give me the tools I need to do the job and I’ll spend the rest of my life doing it.  And to at least some extent, that has happened.  I’m constantly tuned in to my son and to any helpful instincts I might have about what is going on with him, and I am continually being brought into contact with the very people who can help me with whatever situation I happen to be facing at the moment.  I am open to good ideas coming from absolutely any direction, so I recognize lots that come my way.  I see more every day how my son and I are actually alike however differently our issues may sometimes manifest themselves, and that insight helps me to see what others often miss.  I’m doing what I was put here to do, and I feel truly needed.

The downside of all this is that I feel very insecure when a problem arises that doesn’t have a clear remedy, or when I know I am not functioning at my best, because I feel like the pressure is on me to find a solution and to find it quick.  Because that’s what I do.  And because if I don’t do it soon, the problem may grow bigger, and the consequences may be more severe.  The clock is ticking.  Will I find the right button to press?  What will happen next if I take too long?  Why does no one else seem to see that any decision we make has further implications?  However I choose to handle this, down what road will that decision take all of us, and what will we face along the way?

Because of my own spectrum issues, I find the unknown to be extremely disconcerting, and I tend to obsess over anything I feel has gone wrong in the past or might go wrong in the future.  I have the impression that I feel pain out of proportion to what others seem to do over a given event or circumstance, maybe in part because I’m feeling it before, during, and after whatever actually happens.  I carry the pain with me through time and can resurrect it full blown at a moment’s notice even after it appears to have faded.  I’ve seen how things can go wrong in our own lives firsthand, and that doesn’t even begin to touch the impressions made on me by stories I’ve heard from others.  So when someone tries to tell me it will all be fine if I just don’t worry about, I get very frustrated, because I know there’s a good chance that it REALLY WON’T.  At least not according to any definition of fine that works for me. 

So what all this leads back to is that frequently when my spectrum kid is out of sorts or having an issue – or even when another family member is significantly off balance ( because in my mind everything is connected, and because we all affect each other so much) –  I initially become anxious.   I overreact.  I add stress to an already stressful situation.  I sense a problem that needs fixing, when the truth is that somebody is just expressing a feeling or bumping up against a challenge, both of which they should be able to do without having to worry about how that impacts me.   It’s not what happens all the time, but it happens a lot.  We regroup and get a handle on things later, but an impression has already been made that grows deeper each time we end up there.

So figuring all this out doesn’t really fix this particular problem.  But if I can see it and how it came to be, maybe I can start to recognize when it’s happening, instead of being caught completely off guard and wondering how I ended up there again.  And maybe I can make a better choice in how I respond.  At least I can know that I have a choice.

Bless all of you who are sharing your journeys, and thank you for allowing me to share parts of mine.  It truly makes a difference.

The next step

Over the years I’ve let go of a lot of my attachment to goals and deadlines.  We get to things when we’re ready, and we don’t always get to decide when that will be.  Sometimes we don’t seem to be moving forward much at all.  Sometimes we lose some ground, but we try to remember that the overall trend is upward.  It’s just not a straight line.

Today has been a decent day so far.  Middle son came back from a sleepover  and has been enjoying his new Rockband for the Xbox.  He’s the only one of the three to take much interest in music so far.  My youngest had a playdate at a friend’s house and put a lot of effort into trying to clear a light layer of snow off the driveway to impress his dad before he got home.

My oldest has been a bit stressed today.  Nothing along the lines of a full blown crisis. At least not right now.  You never know what the day may bring.  But he woke up restless and not happy about the homework still remaining to be done before tomorrow, and he had it in his mind to escape his worries for a while by attending a local weekly Yugioh tournament.  He never does as well as he thinks he will at these things, but he gets a bit better each time, and he no longer falls completely apart in frustration.  So if we have time, as we did today, it’s nice to indulge him.

He did good by finding the website of the place where they listed the time of the tournament.  Then his dad asked him to call the place and confirm that it was actually happening today.  Not strictly necessary, but a good way to get useful information about any last minute changes.  And not a big deal for some people.  But my guy?  Hmmm.  Phone call.  Yeah, he wasn’t exactly comfortable with that.

This is the part where I have to figure out what he can actually manage today, because often he doesn’t know himself.  It doesn’t always work trying to base it on what he’s done in the past.  Since puberty hit, he manages some things a lot better, and some things have gotten more difficult.  He can stay in the classroom during every period on a pretty regular basis now and consistently participates, and he doesn’t refuse to do his assnments.  He can attend after school clubs in his areas of interest on his own. That’s all tremendous progress. At the same time, inviting a friend over happens much less frequently and only when we have just the right combination of mood and circumstances.  And he does NOT want to do phone calls. 

There was a period of time when I just would have pushed.  We’ve done a lot of pushing over the years, and it’s mostly turned out to be for the best.  He’s all about inertia and getting started, and once he gets past that, he’s usually fine.  It’s exhausting, but it’s worked.  But as he’s gotten older, sometimes the pushing just makes things worse.  Also, this kid is 15 and over 6 feet tall now, and I don’t look all that intimidating anymore, if I ever did.  He finally has some investment in wanting to accomplish things himself, though, and the best situation is when I can appeal to that.  But sometimes, he’s just not up for something, and it’s not a big enough deal to make into a Thing.

So here’s what I’ve been trying lately – with him, with the other kids, and with other situations that I need to address in my day.  I just ask myself, what’s the next step that we can handle?  What’s something to get us moving in a positive direction, if only moving slightly?  If he can’t manage the talking, can he look up the phone number? Can he dial? Can he sit next to me and listen to both sides of the conversation to get a feel for how that goes and what words get used?  Rather than bailing on the whole thing or handling it all for him, how can we help him move forward even just al little?  And often, once the pressure of having to do the whole thing is removed – because the anxiety that accompanies his autism is more debilitating than any other aspect of this condition for him – he finds he can do more than he thought he could.  And then he gets to feel like he accomplished something.

So he did everything up to sitting with me to make the call, and then they didn’t pick up at the other end. We  decided it was probably fine, anyway, and made preparations for him to go.  He handled his dad leaving him there on his own, us missing his initial phone call home, losing all his matches (including one to a little kid which produced a brief period of understandable swearing back in the car), and now he’s moving forward on his homework.  There’s nothing remarkable about the day, but we helped our boy get past being stuck, and he is handling his frustration without it overwhelming him, and to us that makes it a Good Day.

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