Finding Ourselves on the Autism Spectrum

Archive for the ‘Insights’ 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.

Putting things into words

TED 2010 Temple Grandin

Image by redmaxwell via Flickr

OK, I’m sort of having a little “aha” moment here, and the challenge I’m finding getting the moment into words to share actually relates to what the moment is about.

I’m in the middle of watching a very cool speech by Temple Grandin at the TED Conference, which you can find here:

http://www.eileenparker.com/2010/03/temple-grandins-speech-at-the-ted-conference/

Temple is sharing a lot of information about different types of thinkers, and I realized I usually have trouble deciding what kind of thinker I am. I’ve definitely noticed some tendencies. I can take in information through visual, auditory, or other sensory channels, but I have a lot of difficulty attending to more than one channel at a time. I’m not sure I actually ever do attend to more than one channel at a time – I’m just relatively proficient at switching between them, and I tend to switch frequently if I’m not particularly absorbed by something. If I’m listening to someone speak, I may find after a couple minutes of actually attending to what they are saying that my gaze has drifted elsewhere. I have no idea whether other people notice this about me or not. And if I’m concentrating on something visually, it’s hard to hear what anyone is saying to me. If I’m being bothered by something on a more primitive sensory level, it’s a challenge to attend to much of anything else at all.

I have also noticed that I seem to communicate more clearly in words when I can write and edit and change things around – unlike trying to talk to someone in person or on the telephone. I can have a tendency to go overboard with rewriting and correcting myself sometimes, but with no opportunity to do more than one draft, I really have a hard time getting across to another person what seems perfectly clear in my mind, even thought it’s not in words. It probably doesn’t help that I do a lot of my conversing through the day with children and teenagers, who also have a tendency to have lots of only partially-formed thoughts popping out of their mouths. I don’t get so much practice speaking with adults, apart from sharing the latest adventures of our kids, which don’t usually require much editing – just relating of things as they happened.

I don’t plan what I’m going to say as I’m talking, because I can’t really think and talk at the same time. (That doesn’t sound too good, does it? 🙂 ) It works OK when I know ahead of time I’m going to be dealing with a particular issue and have some kind of script for that in my mind to keep me on track. Otherwise, I can be as surprised as anyone by what comes out of my mouth, and I sometimes learn things I didn’t know I knew by hearing myself say them. I’ve actually had some tremendously cool conversations with certain individuals I trust just by talking and listening that way.

So I had been trying to decide if I was more of a language-based, auditory learner – unlike my oldest, Simon, who has shared with me that he sees in pictures or in pictures accompanied by words and gets totally freaked out if the pictures aren’t there, which has happened before under great stress – because I don’t consciously see everything in pictures and sometimes even have trouble forming a visual for things I hear if I don’t already have an associated visual file for that somewhere in my head.  I think I have a lot of trouble translating things that come into my mind from one channel into some other form.

[ A little digression here: When I read a book, I feel a need to have some actual individual’s face in my mind attached to a particular character or I can’t really connect with the book. It’s very helpful if I’ve seen the character portrayed on film or television, because then my mind just goes right to that actor’s face and voice. That works out well for the mystery novels I read, because lots of novels have the same main characters. If I don’t have a ready reference like that, I sometimes just end up choosing some actor I’ve seen in something that reminds me of a particular personality and use that.]

The truth is, I’m not sure I have a handle on how I actually get the impressions that are in my head. I suspect I’m scanning things from a variety of channels (auditory, visual, memory) and then zeroing in on those that interest me in some way.  It makes me think of the Google reader I’ve only recently discovered and started using to keep up with lots of different blogs – I can see parts of a lot of things all together at one time, then just pick out things I want to focus on one at a time.  But the reader holds onto the other updates while I am focusing on just one, whereas in my mind I tend to lose track of anything not in my current view.  I think where words and language come in is when I’m trying to sort through all the images/impressions swirling around in my mind into something that makes sense and can be retained for future use – at least for me, if not other people.

I have this thing about organizing. I get totally geeked walking into an office supply store. I can lose track of hours organizing books on my shelves or files on my computer without actually feeling a need to read any of them at that particular moment. I do read quite a bit, but it’s a completely separate interest for me from filing away information and sources of information. I’ve stored away so many articles on my computer about autism-related issues that don’t directly relate to my life, because I just like having it handy to retrieve in case maybe someone I hear about might be able to use it. Some info is also for myself and my family, but even that needs to be indexed and categorized, because I don’t seem to have any working or long-term memory to speak of. I see something, decide it has value, and immediately want to put it away somewhere where I won’t lose it – with my mind definitely not being a reliable place for storage. I can scan and re-familiarize myself with something extremely quickly once I’ve read it through once, but without going back through after some time has passed, I have a lot of trouble retrieving any relevant information.

This is reminding me of how my husband assured me fairly early into our marriage that I didn’t need to study to retake a driver’s test for my lapsed license, presumably because I was a good driver and an exceptional student, and because he found the test so easy. I had the study materials in my hand, but I didn’t use them, because I favored another person’s perceptions over my own self-knowledge, which I didn’t feel secure in or able to explain. I then proceeded to fail the written test and had to wait to take it again. Ten minutes study was all I needed, but I NEEDED the ten minutes to access that information and to carry me past over-analyzing the language of the questions and trying to process too many different scenarios from every possibility I could imagine.

Now that I’ve written way more than I intended when I first sat down, the point of this whole “aha” moment is that it’s just dawned on me that my focus on language isn’t necessarily because that’s the learning or means of expression that comes most naturally to me. I think it’s actually because it’s my means of trying to sort through and organize everything in my mind that mostly streams into it raw and unprocessed. It’s analogous to being in a messy room – which happens way too much in my home for my peace of mind – and having to sift through and put things away in order to be able to start finding anything. My outer experience is actually mirroring my inner one, which fits in with my overall personal view of the universe, so it somehow makes sense to me.  For now I suppose “that’s all I have to say about that”. 🙂

The challenges of visiting family

In a comment on my last post, Aspergirl Maybe linked a very useful letter, written from the perspective of a child with autism to family he is going to be visiting, that I’d like to share here:

http://joyinthevalley.wordpress.com/2010/12/22/holiday-letter-from-an-autistic-child-to-his-family-and-friends/

My response to her very thoughtful suggestion relates to an upcoming trip of mine to a family wedding, and it grew into a blog post of its own:

I think this type of letter could probably provide some enlightenment for some of my family members and even friends about specific issues relating to our situation, although I think they will be the ones who already listen and respect my needs and those of my family.  They are also the ones with attention spans long enough to read a carefully worded letter.  I do feel like it’s time to start sharing at least a bit more with them.

The Others:

There are some other family members who don’t generally give the impression of hearing me no matter what the subject matter.  They appear not to listen or read past the first few words I try to share, and I feel flustered enough around them that I know I take a lot of words to get across what I am actually trying to say.  I also don’t know how to deal with these people when they dismiss the things I do say because they believe they know better (on what basis remains unclear) and try to push me into making the decisions that they think are best.  I’m fine with making my own decisions and am not really looking for their input, but they give indications that peaceful relations are dependent upon my going along with what they think.  They often come across to me, and I believe sometimes to others as, well, “pushy”.   I don’t really know a nicer, clearer way to say it.    Nothing I say seems to make much difference, simply because they aren’t actually hearing anything I’m saying or are only taking in enough to facilitate them dismissing what I say, unless, of course, I happen to agree with them.

Most  family members just seem to know how these individuals are and to not be too bothered by them, although occasional scenes arise when strong tempers are involved.  These individuals are always kind to my kids, but they interfere with my parenting and me doing what I need to do for our particular needs, and that’s not OK with me.  The way they see it, they are just trying to help or to make things more fun, and it feels like they would take offense at any suggestion otherwise, because they also come across as very defensive.  I know there are lots of people like this in the world, but I don’t choose people with these personality types as friends.  I only have these few in my life because I’m related to them, and they are close to others who are close to me.   When I try to communicate my needs with these people and they don’t listen, I become very confused and frustrated, probably greatly out of proportion to anything that anyone else would find the situation itself warrants.

Communication difficulties:

I’ve run into some major difficulty fairly recently with trying to communicate with a particular couple of family members through writing.  Almost everything I said was misinterpreted, and trying to explain myself just seemed to make things even worse.  Even my attempts at apology and taking responsibility for the communication difficulties (this was probably not the best time to bring up the whole issue of thinking I might be an Aspergirl) were called irrational and passive-aggressive, which I found very hurtful.  It soon became clear to me that the only way to calm things down was going to be for me to just say everything was all my fault and to ask forgiveness without looking for anything in return.  It was really the only move I felt I had left.  It did the trick, and they calmed down and now appear to have decided we’re all fine again, but it left a bad taste in my mouth.  I’ve been working on my own forgiveness issues with regard to them, and I’ve let go of most of my anger, but I’m left with some serious trust issues.

Travel difficulties:

Part of the problem for me in having to travel to see family is that I have issues with the travel itself – joint pain, car sickness, separation anxiety from sources of comfort, and a kind of situational claustrophobia that comes from being cooped up in a car with four guys.  And that’s when everyone is getting along, which becomes less likely the longer the trip continues.  These difficulties leave me feeling very much out of sorts when I first arrive someplace and for a long while afterward.  I’m not exactly at my best for dealing with challenging personalities at that point.

Another thing that’s a problem for me in traveling is my concerns about sleeping arrangements and how we will deal with sleeplessness in myself or other family members.   To sleep sitting up in a car just doesn’t happen for me. (I once spent the night lying on the floor of a school bus on an overnight trip, because I was the only one who couldn’t get to sleep in a seat.  Yes, it was as gross as you’d imagine, but I was so tired that it no longer mattered.)  My kids only sleep in the car if they’re really exhausted and we’re driving at night.  Being able to sleep wherever we’re staying really does matter.   Sleep problems are an issue with all of us at some point or other, but here at home we always have other rooms available and can move around. Usually it’s just one of us having difficulties, but some nights it kind of turns into a night-time version of musical chairs, and it’s interesting to see who ends up where by morning. 🙂 I know for many people, they just need a place to lie down and stretch out and they’re good.  We’re usually more high maintenance.  Hubby doesn’t always get this part, because he can usually fall asleep anytime and anywhere, although staying asleep is sometimes another matter, and he’s often up in the middle of the night or very early morning doing computer stuff here.

When we stay away from home, things can become more difficult, because the extra rooms are usually occupied by sleeping people who would probably prefer to remain asleep.  Also, when we’re visiting with family, everyone wants to stay up late and has a hard time winding down to go to bed.  Then during waking hours, the ones who didn’t get enough sleep and couldn’t do anything about it end up cranky and short-tempered.  The upside is that sometimes we’re exhausted enough from staying up to go right to sleep, but that’s not always the case.  For myself, I rarely get a decent night of sleep away from home, partly because I end up having to sleep close to family members, some of whom make enough noise that I can only manage a few hours of sleep even with earplugs.  I also end up dealing with whichever of my children is either having sleeping issues or just can’t get themselves settled down to let the others sleep, and that cuts into my own sleep time, as well.  None of this tends to bring out the best in me, but I can usually get by for a while with people whose company I enjoy.

What to do about it all :

Having already had some unpleasant experiences that were difficult for me to understand, now when I’m with certain people, I tend to feel anxious or threatened.  My fight or flight response kicks in, and it’s hard to communicate effectively in that condition.  Difficulties associated with travel make it worse.  I’ve already had some discussion with a couple of people I trust about options to help with sleeping arrangements and with having some space to ourselves when we need to regroup.  In terms of practical preparations, we’ll do what we can.  For personal preparation, my main goal at this point is to build myself up enough before I go that I can be firm about my own decisions without becoming angry or defensive in the process.   That last bit is the tricky part.   The one thing I don’t want to do is to make a challenging situation even worse.  I’m hoping that continuing to process my thoughts and feelings through writing will help to facilitate my self-assurance and peace of mind.  (And if anyone here wants to kick in any suggestions,  I’m definitely willing to listen. :))  I’m also working my way through some Zen literature that has helped me with difficult feelings in the past.

Cover of "Taming the Tiger Within"

Cover of Taming the Tiger Within

I think I may have to work on maintaining those qualities of peace and feeling secure within myself  in the presence of some stronger personalities before I can be calm enough to communicate effectively with them.   I think it’s at least worth some time and effort on my part trying to improve these relationships and the effect they have on me  and my family.   Honestly, I’d really like to get to the point that  all of this stuff can be in the background, and we can relax and enjoy what should be a very special day for two very special people.

Letting in the light

"Kirche Gröben" (big church), Brande...

Image via Wikipedia

So I’m just realizing something. I tend to think of myself as not being particularly creative. I can frequently see new ways to apply other people’s ideas – which I suppose is creative at some level – but I rarely come up with anything original on my own. I’m OK with that. I have other skills. But as I’m looking back through some of my old journals, I’m realizing I was actually making something up – I was trying to put down “nice” things and to paint a pleasant, “normal” picture of our lives fit for public consumption. Not so much in Simon’s toddler journal, because that was really written just for myself. But later on, I started taking some journal entries and emailing them to family living hours away. Somewhere along the line, I started writing with my little readership in mind, and I censored myself accordingly. I wrote what I thought would be amusing or cute to make aunts and uncles and grandparents feel good and feel positively about my own little family. There’s nothing inherently wrong with that. The grandparents, in particular, seemed to enjoy it quite a lot and look forward to my next installment.  But I had stopped writing for myself.

Then there was the wall my Simon hit in first grade. After we had pretty much convinced ourselves that we had this “recovered” autistic child and were happily patting ourselves on the back, we discovered whole new issues and a whole new level of discomfort. I still remember the first phone call I got two weeks into the school year informing me that Simon “wasn’t adjusting well” to first grade. That started us into a downward spiral from which it’s taken years to climb back up to a place where the future looks promising again, if very different from what we had previously envisioned.

When Simon was little, the things with which he needed help seemed more straightforward to me – talking, turn-taking, sensory issues, motor skills. I seemed to have an aptitude for approaching these things, and more than one therapist suggested I might make a decent therapist myself. And while Simon had enough social anxiety at four years old to warrant putting him on medication, he’d made great progress and had been off the medication and doing fine for months by the time he finished kindergarten.

Then first grade came with a full day of structured activities, more challenging social interactions, and a well-meaning teacher with terrible instincts and no time to listen to me. Simon began to hate school and to see many of the people around him as enemies. We were dealing with school staff who didn’t know much of anything about autism and seemed to need to see their own methods fail before considering any of our ideas – not that we had much clue what we were doing, either. We were in uncharted territory, and we had little in the way of guidance. But we were definitely having more success at home, and we knew there had to be a way to expand that into our son’s school experience.

While all of this was going on, we were still living in the same neighborhood and seeing all the same people we had before things went downhill. We didn’t know how to explain to them that the child who seemed fine when they saw him in other situations was really struggling now just to get through a regular day. For better or worse, Simon eventually started having problems in other areas, too, as he lagged behind his peers socially. My husband took the lead on talking to some of our friends. I mostly did what I do, which is to shut down. I was never very comfortable socially myself, and having a child so different from everyone else’s made that much worse. I stopped talking or writing to people except when I could come up with something to say that was both pleasant and true, and that happened less and less frequently. I was too overwhelmed with the challenges we were facing to care much about that at the time.

I became more and more isolated not knowing how to “fix” everything that seemed to be broken. I didn’t know how to process having a child who was not only struggling but was doing so in such a way as to make people believe he was purposely being difficult. He didn’t cry or withdraw every time he got overwhelmed anymore – now he was becoming angry and confrontational. I’m going to go ahead and give the first grade teacher a big slice of the credit for that development. I eventually started calling her the “High Priestess of Love and Logic” behind her back. It worked with her own kid, so it must be the answer for everyone. My son’s reaction to being continually asked to solve his own problems when he had no tools for doing that was to finally get fed up. And while he made improvements all along the way, I’m not sure he’s ever really stopped being fed up. However, he has started to see the positives in some things and to actually want to do well in school and get along with other kids, and that’s huge.

So the original point of all this when I started writing today – besides distracting myself from dwelling on Simon’s upcoming optometrist appointment – was that the reason many people don’t know much about our lives is because I haven’t actually told them much of anything. I’ve continued to write occasional emails and to make infrequent visits to see family and friends who don’t live near us, all the while trying to look like everybody else. And while I find myself mentioning autism fairly early in meeting folks in our neighborhood these days, they mostly don’t actually see much of Simon – except those who have know him for years and have kids whom he sees at different activities or even, on rare occasions, just to hang out and play games.

It wasn’t a conscious effort to exclude people. It was just that for so long we were the only people I knew dealing with any of this. I only ever talked about things with teachers, doctors and therapists, and my husband. Gradually we’ve let some others in, and we’ve even met a few other families in similar situations. People have been overwhelmingly supportive and understanding – or at least not openly judgmental. No one besides the occasional playground bully or passing stranger has ever been deliberately unkind. Most people want to be kind, and if they don’t, then I don’t want them in my life.

So why do I find it uncomfortable outside this wonderful blogging community to share when we’re having a “moment” or a struggle and it happens to be related to my child having autism? I have no problem mentioning injuries, attitude problems, or things I just find frustrating. I’m sure people I’m friends with on Facebook know more than they care to about the vehicle I currently drive. They all know I “share” items related to autism from time to time, and a few have either asked about our situation or asked for some general information on the subject. I suppose I just have it in my mind that most people aren’t going to “get it” when I share something spectrummy, because that’s not part of their experience. It is, however, part of mine – every day. And maybe people who care about other things going on in my life would like a chance to show that they care about these things, too.

So I posted something spectrummy on my facebook profile today about Simon’s anxiety over going to the eye doctor, and  I’ve gotten several supportive responses already.

“Begin challenging your own assumptions. Your assumptions are your windows on the world. Scrub them off every once in awhile, or the light won’t come in.” ~Alan Alda

(I love Alan Alda.)

As I let little streaks of light into this closed-off room of mine, I can see myself and my life a bit better, and I’m finding myself wanting to let in just a little more.  Sharing through this blogging community has become part of a larger process for me, and I’m grateful to be having this experience.

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.

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