Finding Ourselves on the Autism Spectrum

Archive for February, 2011

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. 

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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. 🙂

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