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

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

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

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.

Eye exam anxiety

Image via Wikipedia

Hi, Blog Friends.

 

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

 

Thank you.

Then and Now: Back to what works for us

Looking back through my journal again. Even as I delighted in the expansion of my toddler’s attempts to use his limited communication skills to include other people, I was also becoming more aware of the differences between him and other children his age. I tried to follow as much of the therapists’ advice as I could at home, but the advice wasn’t specific to our child, and it wasn’t always a good fit. Trying different things, making observations, and building on whatever seemed to be working was usually a good way to go. That’s still the approach I find myself using today.

 

 

August 30 – September 2

 Connecting with others:

Too much stuff to remember all of it. Highlights from our trip included the following: Simon really seemed to recognize and be happy to see each of the grandparents and to feel safe being left alone with them. He also seemed to genuinely recognize each of the houses, even K and S’s, and to go straight for the stuff he had enjoyed there on his previous visits. Despite developing a cold and spending lots of down time watching videos (especially the new Pooh one), he spent lots of time playing and paying attention to people, especially the kids. Simon played peekaboo with A for quite a while and seemed to be having a terrific time and trying to communicate with him like he would with me or his dad. He played with toys on the kitchen floor with E and did pretty well, even though he kept trying to be in charge of all the toys. The trip really showed how much progress Simon’s made lately compared to the last time everyone saw him. He recognizes people and places, he seems to have developed a real bond with his grandparents, and he waves spontaneously and frequently now and uses his hand signs and pictures to communicate with anyone he can.

 

 

September 3

 Noticing differences:

The little guy seemed incredibly wired and stressed after breakfast and kept making a short “ee” sounds over and over most of the morning. Tried gymnastics class, which was a little more structured and stressful than I expected. Even though several of the kids got cranky or whiny at different points, I really noticed a difference in how they participated in group activities compared to Simon. He enjoyed all the neat stuff to play on but was very unhappy about having to wait. He also seemed to have no concept of following along with what others were doing. Still, he was very comfortable with the instructor, and she was very patient and said he did just fine and the activity could only be good for him. He woke up in an unpleasant mood from his nap, and somehow seemed like he wanted to say something and was very frustrated. He perked up during playtime with Daddy, then spent some quiet video time, after which he was very wired. He stayed up a little late and had a bath downstairs. He seemed to enjoy the novelty. He babbled a lot all through the later part of the evening. He stilled babbled a little after story time, but went to bed peacefully enough.

 

 September 5

 Back to what works for us:

Kind of a crappy morning. “Modeling” the ASL sign for “more” (which is a little different from Simon’s) while saying “mmm-more” over and over again (on the new speech therapist’s recommendation) just seemed to confuse Simon. He fell twice at the library, and I kept trying to restrict his mess-making, because a librarian was staying so close by, so he was in a pretty bad mood. Both our moods stayed fair to rotten through the rest of the errands, and Simon seemed not to remember his “more” sign and kept using the one for “pacifier” instead, even though he was trying to get more grapes and even though I kept asking him to say “more”, which he usually understands. Finally I gave in when he made it clear at home what he really wanted was just to sit on my lap and watch a video together. So we made a change. I got out his favorite Pooh video, sat with him until he got up to play with the new toys and his macaroni box, and we ate a nice lunch together in front of the TV. At naptime I put Eeyore, Tigger, and Piglet in his crib by his head, and he smiled and went to sleep without a fuss. Time to get back to what works for us, and we’ll let the new ideas fit in where they can.

 

Ended up having a very nice afternoon and evening. After not having seen the sign at all for at least a day, Simon even went up to our cat, Charlene, first made a sign for water, then turned one hand over and made our sign for “kitty”. I got very excited and let him know how wonderful that was. He then went up to our other cat, Andrea, and did the same thing. After that we played outside, including some time with sidewalk chalk. He was happy and active through the evening.

Every bit of progress that Simon made when he was little was exciting and noteworthy for us. Truth be told, it still is. We haven’t been able to take a lot of things for granted, because each step forward represents so much time and effort for him and for us. It has never been simple or easy, but it’s been tremendously rewarding. I hope it’s made us better people. It’s certainly made us more appreciative of all that we have.

　

　

　

 

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.

　

　

　

　

　

　

My new address part 2

So here I am.  This was easier than I thought.  The rest of my day is balancing that out, though. :), which is why I don’t have anything much to say just yet.

I wanted an address change to remedy having a public username that I hadn’t realized would be public.  I’ve met some very nice folks here and have no problem with them knowing my full name, but I’m not sure I want people I know in my life outside this community – other than the few I’ve invited – to just happen across my blog and connect it with me.  At least not for now.

Please let me know if you notice anything that’s a problem here.

Thanks

Advice on making a change?

Hi.

Some of my blog friends have been participating in a discussion about anonymity, and it’s brought up an issue for me.  I have a confession to make.  Being completely technically challenged, I didn’t actually realize when I input my username that it was going to become part of my blog address and be available to everyone under the sun.  I’m a bit dense that way.  But once I did realize what was going on, I had made some nice new friends and felt like I couldn’t make a change without messing things up.  Then I did (what was for me) a bunch of writing, and I really felt like it was too late to do anything.

I haven’t met a single person here so far who I mind having my name.  I’ve been very fortunate.  But I do have some concerns about the future.  I don’t know how I would feel about people who live near me and know me in my daily life seeing what I choose to share here, and I’d really rather not have my current username.  A helpful WordPress video showed me how I could change my username and even have all my blog information transferred over to the new address, but it also said there was no going back.  And I don’t really know how that would affect things like having people who have already been kind enough to read my blog still be able to find me and having me show up on blogrolls and the blogging network.

So I’m going to do what I did when I first started blogging and just go ahead and ask for help.  Does anyone have any advice?  Is there a simple way to keep my current username from being associated with my blog and to still maintain all the rest?  It’s not like I have a big following.  Could I just put some kind of announcement on a blog post a while before actually making a change, or does something else make better sense?  Should I post something in the comments of the blogs of people who’ve been kind enough to comment here?  Is all this actually pointless, because now I’m officially connected to this name in webspace for all eternity? 

Any help would be greatly appreciated.  Thanks.

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. 🙂