Finding Ourselves on the Autism Spectrum

Archive for the ‘How we manage’ Category

Shutting down and bouncing back

It appears I haven’t written a blog post in two months.  I’m not really surprised.  I’ve absorbed a bunch of new duties into my daily schedule, and it has required a lot of extra time on top of that to adjust.  I have managed to visit the occasional blog here and there and even to leave a few comments.  Gradually I’ve been trying to work my way back into things.  I’ve had ideas for several blog posts in the past couple of months that quickly disappeared when some new pressing issue needed my attention.  My kids will be on summer break from school soon, and since that will improve some things and make some more challenging, I really have no idea yet what my schedule will look like or whether I’ll have the time or inclination to write anything.  When I get too overwhelmed, I tend to withdraw and not want to communicate with anyone, and that’s been happening a lot lately, too.  Old habits die hard.  But since I already wrote an extremely long comment in response to this post at Alienhippy’s blog

http://alienhippy.wordpress.com/2011/06/04/i-think-it-is-my-trip-switch/

I thought I’d take a shot at expanding it into a post of my own and see what happens from there.

I was just coming out of another shut down yesterday.  I’ve been experiencing this off and on a lot lately, probably because so many things have been pushing me way beyond anything resembling my comfort zone, which isn’t that large to begin with.  My son was having a shut down of his own yesterday after overloading on what were a very productive couple of days for him  (we have officially survived the biggest part of his Eagle Project – yay! :)), and needing to deal with his difficulty on top of everything I was already experiencing was a bit much.  I was kind of expecting it, but I still wasn’t really prepared.  And it kept coming in waves.  I’d think I’d helped him past something, and then a new anxiety would take its place.  I didn’t know what he needed and just kept trying all the different tools in my toolbox to see what might help in some small way.  I don’t think any one thing actually did the trick, but the combination seemed to eventually move things forward.  It’s like that with me many times, too. Thankfully, we’re both doing better now, but I still feel a bit discouraged knowing this isn’t something we’re likely to ever really get past.

For some reason, I think I feel guilty when I shut down, like I should be able to do better after all these years.  Mostly it seems to come from who I am and what I feel not being compatible with what’s expected of me and of others.  I need more down time, more time to process things, more stim time, more explanation of things, more help, etc., than what’s considered acceptable.  I don’t seem to know what I’m supposed to know or to be able to handle what I’m supposed to be able to handle.  If I’m honest, I usually don’t genuinely feel bad about myself.  It’s more that I’d like the rest of the world to adjust please, because I don’t fit here, and neither does my son, and I happen to know we’re both good people who are honestly doing our best.  I’d like for our best to be good enough, because it’s really all we’ve got.

Being confronted with too many demands on my time, my mind, or my sensory system tends to make me shut down, and being shut down seems to drain every bit of my energy.  It becomes a chore just to wash a dish or walk up the stairs, and talking to people is even worse.  I hide my issues as best as I can, maybe because I don’t want to be evaluated and found wanting any further than I already have been.  I try to sneak off to be alone and fixate on whatever I feel will help me at that moment, and when I can’t because of circumstances or unhelpful people, I become anxious and irritable and have trouble thinking.  When I do come out of that state, it feels a bit like a flood of energy, although I seem to be very low energy in comparison with other people, so that flood doesn’t last too long.  Sometimes I think of it like I’m riding a wave and try to use that energy to get a lot done, because I know I won’t have it later.

More and more these days, I am learning to accept who and how I am, and this allows me to do what I need to do to help myself much sooner.  I know that I have to meet my needs, because no one else will. I need to do whatever I need to do and to indulge whatever obsession I’ve currently got going in order to feel OK again, and it’s better for everyone around me if I just go ahead and do that.  The longer I wait, the worse things get, and I end up behaving in ways I regret and taking much longer to recover.

I tend to shut down less if I keep spending time focusing on spiritual things, and often that’s what brings me back around if I’m not too far gone.  But there are times when I let things go too far, and I have to indulge some other needs before I can approach anything with deeper meaning.  I think those are the times when I start to feel guilty, because I feel like I should have caught it sooner.  Then I have to practice forgiveness of myself and others in order to start over.  I really expected to be much more spiritually evolved by this point in my life. 🙂  Every day just seems to be the same struggle over and over – some feeling more successful than others, but none really fundamentally changing me or my situation.

It’s hard for me to watch my son go through this, because he has much less coping ability at this point.  Then again, he also has me, and much of the time I do seem able to help.  He also has a lot of great supports at school and at Boy Scouts and among our friends.  I sometimes wish I’d had more of the helps that he has when I was growing up, but then again, I managed, and I grew into someone who can help myself and help him.  So one way or another. we’re both doing  OK.

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. 🙂

 

 

 

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.

Processing

I’ve been really flustered lately. And now I’m up at 4:30 in the morning, because I was having a weird dream – I rarely remember dreams unless I wake up in the middle of them – and then I needed to use the bathroom. Now my thoughts are spinning, but not in the usual negative loops. It’s just been a weird and busy few days so far, and I seem to have a lot to process. So instead of lying awake in bed running through all of it randomly over and over again, I’m going to give a shot at typing it out in order to process it all a bit and see how that goes.

My kids are on a week-long break from school, and that’s always a bit of a challenge for me. We started out the break with a visit from my parents who live about four hours away. My dad and I both have birthdays this month – mine was on Saturday – so that and my parents’ anniversary last month were excuses to celebrate with ice cream cake and a dinner out as a family. We fit in some euchre and board games, my dad and Hubby fixed a couple bothersome things in the house, I baked some bread and some brownies, and my husband grilled out in the middle of a blizzard.

That last bit probably requires some explanation. There was a big shift in the weather for the weekend after Hubby had already bought these little steaks he was all geeked about, and Theodore had a Cub Scout requirement about helping to prepare (not actually doing the cooking part) a meal cooked ( not necessarily eaten) outdoors. It was humorous enough for me to call various family members over to see at different points, but sad enough that I didn’t take any pictures or videotape, because I felt sorry for miserable snow-covered Hubby.

Back to my winter break. So, nothing momentous happened over the past few days, but a lot of things have just felt weird and have been accumulating. I turned 43 on Saturday. (I had actually been getting a kick out of 42, because it’s supposed to be the answer to Life, the Universe, and Everything :).) My three boys have been absolutely bouncing off the walls and each other, which stresses me out even when my parents aren’t around to watch. I’m having a very hormonally challenging week, too – probably TMI, but that’s been having an unusually large effect on me in the past few years. And there was a full moon on Saturday. Hubby keeps bringing the car home almost out of gas. Hubby also had to go in to work three different times during the weekend. My own car keeps needing to be jumpstarted. Water has had to be shut off in different parts of the house to accommodate the repairs Hubby and my dad were doing. The weather got lovely and warm for a couple days, and then we had enough snow the morning my folks were leaving that we had the whole family out taking turns with our two shovels, the brushes/scrapers for the cars, and the rock salt before they could get on the road. Theodore had his eight-year-old twin friends over to visit for about four hours yesterday. And Simon has been particularly out of sorts lately for a variety of reasons.

I appear to have actually been successful at pushing Simon to get all of his winter break homework done at the beginning of the break, when he still remembered what assignments to do and how to do them. And he made plans on his own for a friend to come over, which almost never happens. Good things, but not the usual for us. On the negative side, he made a complete fuss over a missing Nintendo DS stylus that he likely misplaced himself and for which we have several replacements. He also got too overwhelmed to make it to the last several meetings of the robotics club. And he got completely stuck when asked to make a birthday card for me – a task he does for various people several times a year with no problem, and that he managed for his grandpa just fine.

I had to obtain a replacement stylus before Simon would budge for our family meal out, which made me a cranky dinner companion. I also pretty much told him what to put on my birthday card, just so he could fulfill his dad’s requirement three days after the fact. I talked him through options for handling his friend’s request for sharing something on a videogame that was making him uncomfortable to share. He got to bail on the robotics thing even though he really didn’t have anything else to do. And I let him pretty much avoid everyone for the four hours the twins were here.

It all sounds pretty wishy-washy on my part, but it just felt on an instinctive level like he was in a bad place and needed some accommodations. Alongside the accommodations I’ve been insisting he still do his morning jobs and keep up with his typing practice and that he get a modicum of exercise. I’ve also been having him make a fair amount of his own food. I asked him to ride home with his friend who had been over to visit on Monday and to talk on the phone (eek) when another friend called to make plans to get together. Yesterday I took him to the store to buy Yugioh cards when he made a request, but then I asked him to go look for them on his own while I shopped for groceries. He looked and sounded ready to balk at that part. Apparently he had wanted to go with me to avoid being asked by his dad to do things like this on his own, and I was messing up his plan.

I didn’t insist, but I started a conversation about where he wants to be a few years from now and what small steps we can take in a positive direction. I’m not sure if he changed his mind or just wanted to get out of the conversation, but he headed off toward the trading cards on his own. I was just texting him to see how things were going when he showed up behind me with his mission accomplished and looking pleased with himself. He then helped with the checking out and offered to push the cart, and at home I asked him to bring in the recycling containers and make our salad for dinner.

While Simon and I were out shopping, Alvin and Theodore actually played Legos together for an extended period without fussing or fighting with each other. I honestly can’t remember the last time that happened. They built a Lego town of their own design and both seemed very pleased with it. Alvin was also a big help earlier in the day keeping an eye on Theo and his little friends who were visiting and heading off signs of trouble before anything could turn into a big problem. It was definitely an unusual day.

Later last evening Simon started a conversation with me that rambled all over the place from what were the first signs I had noticed that he had autism to why he isn’t yet feeling interested in dating. He asked lots of questions. He even started reading a part of Tony Attwood’s book on Asperger’s that I handed to him partway through the conversation. It was strange, but very cool.

So now it’s 6:30AM, and my family will be up in a bit. My own car is almost out of gas and will likely need a jumpstart. I have no idea what we’re going to have for dinner, and Theodore needs a present for a birthday party he’s attending today. Alvin will need a ride home from his sleepover at a friend’s house. I think I’ve cleared my head enough that I may be ready for a nap. As for the rest, I guess I’ll find out when it happens. 

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.

Progress, not perfection

Here’s a quote I like from an inspirational book by Martha Smock called Halfway Up the Mountain:

“Do you know that the word mediocrity comes from a Latin word mediocris meaning ‘halfway up a mountain’? Somehow this puts a whole new slant on this idea of mediocrity. It is not something fo be disdained or to be ashamed of. Rather, it is a halfway mark. And it does not necessarily indicate that this is as far as you can go. It says, ‘This is as far as you have come.’”

So we’re managing these days. We’re making progress some of the time, and just trying not to move too far backwards at others. None of the problems we were facing a week or a month ago have really been solved or gone away. Nobody has made any really exciting accomplishments lately. Some new challenges have arisen, and some things have even gotten worse. But we’re still here, and we’re doing OK, and that’s something.

The car that I’m not driving has needed to be jumpstarted for the past three mornings, although it did finally start today. Hubby says it’s because I just wasn’t taking no for an answer. 🙂 And he sort of fixed one of the non-working seatbelts in the back seat. Problems with extended family are not all resolved, but there have been real improvements, and after a couple of months that subject is no longer something I struggle with on a daily basis. I lost some weight and haven’t gained it all back, I’m exercising just a bit, and I am gradually making my way through the last couple of books I started. None of these things is just where I’d like it to be, but I’m still hanging in there and moving forward when I can.

The guinea pig that has been Simon’s roomate for the past five years passed away two days ago. He wasn’t showing any signs of illness – maybe just slowing down a bit – so I’m choosing to believe he went peacefully, which to me is a good thing. Simon was upset enough to spend two hours in bed, but we worked through things, and he finished his homework that night and was back at school the next morning. He talked through things very appropriately, and I think he found some of what I said to him helpful. He hasn’t asked about getting another pet, which is just fine with me. We still have three cats, one remaining guinea pig, and a dwarf frog, so I’m not looking to make any new additions. Where we are is just fine for now.

Simon is finding the Robotics club he’d initially been so excited about a bit frustrating these days. He says a lot of it is because of the noise level making it hard for him to follow what’s going on, which is something they really can’t reasonably fix during the build process. He’s still attending – just not as often and not with as much enthusiasm. He’s learning about hanging in there and working through some difficulties, and there are still parts of it he finds enjoyable. It’s not perfect, but it’s something.

Simon also got a bit freaked out about his new Computer Applications class this week, because he hasn’t practiced the typing component before – despite my repeated attempts to remind him of this and to facilitate the process – and he just happened to be sitting next to a junior his first day who was apparently already a very good typist. We got past his initial panic and frustration, set some more realistic expectations (which is in itself a difficult thing for him), found him some games at home that work on typing skills without being too boring, and he’s doing OK with it. He’d already gotten past one challenge just going into the class, since it’s being taught by the tennis coach whose team Simon decided to quit after just a few weeks during the summer. Nice guy, but I can tell he’s not exactly used to relating to kids who get so overwhelmed by things, so he’s getting to have some learning time, too. Overall, the class will be a good experience, even if it’s not exactly what either Simon or I had in mind at the start.

I’ve been getting lots of resistance recently from Alvin and Theodore – and occasionally from Simon – to following some rules I’ve been insisting on in order to take some of the drama out of life around here. I absolutely hate and shy away from conflict of any kind, so having a constant state of conflict in my home is especially draining. This is another area in which things aren’t all better, but we are making definite progress.

As an example, after years of trying to create the perfect system that would eliminate daily conflicts over electronic devices – taking turns, limiting time, multiple games and programs interfering with each other, being able to transition to some other activity, etc. – I looked back and discovered that some of what I had been doing had actually worked. None of it completely solved the problems, which was why I kept trying to find something else, but some things were definitely better. Once I got past how ridiculous all this must look to someone outside our family and the fact that we still keep making mistakes, I could observe some changes which seemed to have a positive effect and combine them into something useful.

I noticed that recording the beginning and end of each child’s turn greatly reduced the conflicts stemming from individual feeling like they weren’t getting their fair share of time, because it was all written down. Recording the times and using a timer also helped them transition out of the activity more easily, which is a significant challenge for all of them. Getting a parent’s initials on the same roster before being authorized to take a turn reduced the incidences of kids playing without permission, again because there’s a record. Now nobody has to rely on a questionable memory or conflicting reports. Lots of trust issues going on around here. 🙂

Having each authorization go through a parent for every turn has reduced the kids’ conflicts with each other over somebody taking too long or getting too many turns, which in the past have frequently escalated to arguments, meltdowns, and physical altercations. This has also allowed me some opportunities to plan better, because I can look ahead to what we have coming up – dinner, homework, scouts – and make a better decision about whether or not a turn is appropriate and who ought to take their turn when. It’s not fixing everything, but it’s helping.

Requiring everybody to close out whatever they’re doing aids in transition and helps prevent accusations of other people shutting off a child’s program or losing their accumulated progress on a game, because each child saves and shuts his game off himself. Only allowing one individual at a time in the basement where most of the electronic devices are located (except with special permission) helps reduce conflicts over siblings commenting on each other’s games, and it provides a natural limit on how many electronic turns can fit into a given period of free time among three individuals.

The best thing about all of this is that having a plan and having things recorded has helped me to feel more in control of the situation, which has helped me to relax and be more effective when problems do come up. When someone is running over time or freaking out about something – which still happens frequently – I am better able to be flexible and to work out a solution we can all live with. When there is a question about whose version of events is correct, I can remain objective and not have to take sides or question my own memory.

Each of these strategies has initially been tried separately, and each has prompted a lot of resistance at the outset. We’ve also had plenty of experiences of each of us just plain forgetting what we were supposed to be doing, suffering the natural consequences, and having to start again. But by focusing on progress, rather than perfection and being willing to make changes as we go, things are definitely better, and everybody is a just a bit more relaxed. Gradually the kids are becoming less resistant, and Hubby is doing his best not to derail things when I step out of the room for more than a minute. 🙂 This has helped build my confidence that we can handle other issues, too, and I’ve already got some other works in 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. 🙂

Close call

So my husband tried to die today.  Just a few minutes after we had talked on the phone about me not going out because the weather was bad, I got a call from him saying he’d been in an accident.  He knew it was slippery and was doing his best to be careful merging onto the freeway, and he remembers losing control and sliding but not the impact or losing consciousness.  He’s OK, but it’s been a very intense day, and his truck that he’s had since before I met him is a goner. 
 
I spent a long while talking on the phone with a truly wonderful woman who had stopped after she saw the accident, and she stayed on with me letting me knowing absolutely everything that was going on while my husband was being helped by the paramedics, etc.  She said she’d been in a serious accident before herself.  The first paramedic to get to my husband was a dad he knows from Boy Scouts.  When my hubby was trying to be cheerful upon seeing him and couldn’t come up with the guy’s name, he (the paramedic) decided a trip to the hospital was in order. 
 
I had woken up at 5:00AM and had spent the morning starting at about 6:15 watching my friend’s kids so she could be with her husband while he had surgery for his badly broken wrist. I was already feeling the strain from dealing with one child getting a nerf dart power shot to the eye approximately two minutes after their arrival, another having a scrape and a wet sock from playing chase in my kitchen, Alvin leaving a paper at home and needing it to be brought to the middle school, a child needing to go back to her house to retrieve forgotten snow pants, and the spectrum kindergartener who stayed with me for three more hours after the others had left nearly locking me in my own basement.  It was about fifteen minutes after I had started to breathe that I got the call from my husband and had to start scrambling to come up with a plan not only for my children, but for my friend’s children, as well.
 
Fortunately she called shortly afterward to say she and her husband were on their way home, and he had received a nerve block and would be OK for a while.  I turned the tables and asked if she could pick up our two little ones that I was supposed to retrieve, then I got to call each school and explain to each child – or in one case, the teacher consultant – what was going on and what the plan was.  I left a key in a place we’ve used before for the older boys and gave them a cell phone to call me.  I looked up the hospital, which isn’t one we normally go to, on Google maps and came up with a way to get there without taking the freeway.  By then my friend was back, so I returned her key and headed off.  I was quite proud of myself for finding the place without a problem, and they had a greeter sort of person right at the emergency room entrance to help me find my way without any hassle.  Hubby had been checked out pretty well by the time I got everything else handled and made it to the hospital, so we didn’t have to stick around too long.  He’ll be sore, but he’s basically OK, which was nice to see after they did the whole neck brace and backboard and ambulance thing with him to be on the safe side.
 
Before we made it out of the hospital parking lot, I got a call from Simon informing me that a police officer had stopped by with a citation.  Nice they could get to that before my husband even left the hospital.  At least Simon handled it fine, although it freaked him out a bit.  He had just opened the door and started to wander away thinking it was just Alvin arriving home from school.
I’ll probably have more to say about this after I’ve had time to process it all a bit more.  For now we’re just tremendously grateful, and some other issues that have been bothering us have been placed into perspective.

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.

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