Finding Ourselves on the Autism Spectrum

Posts tagged ‘autism’

Letting in the light

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

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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.

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Then and Now: More about signing

 

We did a lot of signing when Simon started showing some interest in communicating but was still not doing much in the way of making different sounds. He would make an “eeeee” sound that changed depending on his mood, but he didn’t make a lot of other sounds. We learned later that he had apraxia, along with his other motor planning issues (which I believe are collectively called dyspraxia) and actually had trouble learning how to form different sounds. At this point in my journal he was about 20 months old and had been in speech therapy since he had been about a year old.

August 3

In the morning Simon took great interest in the cats and played with them by swinging around the “bird” toy in their direction. He laughed while they chased it. He brought me his juice cup to request more juice. Simon also used his index finger to point to the pacifier in the book upon request again. Twice I spent a few minutes putting his hands under the running faucet or handing him a small open cup of water to drink alternating that with saying “water” and moving his hands to make the sign. He seemed very interested.

 August 4
  
Simon let me repeat my “water” lesson of yesterday and even made the sign on his own three times to get more water. The same thing happened later in the day, and he also made the sign for father when his dad brought out a glass of water, asked if he wanted some, and I prompted with the sign. Seemed a little confused about my not responding just to “more” for more water. We need a little practice.
 
 August 6
 
Wandering around looking for something while doing his “more” sign seems to mean he’s looking for his pacifier. Plans to work on a sign for pacifier. Getting much more consistent sign for “water” (still showing him how to make the sign and putting his hand under running water or giving him a glass of water and repeating this several times in a row. We did the little turtle finger play several times, and he wanted to hold onto both of my hands while I went through the whole thing, which was new.
 
August 7
 
 Zoo Day. He was pretty quiet all day – seemed to be taking everything in. Most interested in the sea lions, which moved around a lot and made lots of noise, and the ducks he could chase on the sidewalk. Went up to a little three or four-year old girl and offered her M’s bottle of water. When she didn’t want it, he tried the little one in the stroller. The baby (about ten or twelve months) was very interested, and Simon held the bottle like he does for his dolly at home, and the little one put it’s mouth over the cap at the end. Extremely cute. The other interesting thing was at the playground, which Simon liked very much and didn’t get to spend much time at. He came across what looks like a stand up version of toss across and turned every single one to the “O” side. (M had to point this out to me, and we got a little on tape.) Another kid messed them up a little, so Simon went back and did it again. Lots of “water” signs around the more watery exhibits.

 

Had a wonderful time at the K’s later. K thought he was doing just great and that we were doing all the right things. Said to try just inundating him with communication options, especially pictures on the frig to make choices from and to communicate with people who may not know his signs, and to make sure the picture is always paired visually with the actual word.

Looking back:

I still look back on Simon having to have all the letters matching on that board as one of our early autism indicators. At this point, he still didn’t have an actual diagnosis, other than a speech delay, although we had experienced therapists who could see that there were indications and kept that in mind when working with him.

K is the wife of someone who was, at the time, a co-worker of my husband. She worked for and is now the board president of the Autism Society in our state. I had expressed concerns about whether to focus on signs or on pictures in trying to communicate with Simon. She basically said to do everything and look to build on what was working for him, and to this day I consider that one of the best pieces of advice I’ve ever gotten.

Figuring it out

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

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

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

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

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

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

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

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

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

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

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

The next step

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

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

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

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

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

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

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

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

Nothing in particular

I want to post something today, partly because I’m all about momentum and don’t want to lost what I have going, and partly because I’m feeling all warm and fuzzy about finding this wonderful community and just want to say hi and I’m very grateful you are all here.

Just us Aspies

The neurotypical family members have all gone out to a hockey game, and my oldest and I have the place to ourselves.   Other than me checking in with him once in a while to make sure no surprise problems have developed, we’re mostly off in our own spaces doing our own things.  We both enjoy our alone time and the peace and quiet when no one is trying to get us to do something interactive that’s supposed to be more fun than what we actually want to do.

Limited attention

I haven’t yet figured out what time setting my blog is on – I can only handle learning a little at a time, but I’m writing in the middle of evening, and my deeper thoughts processes just don’t function by this point, especially when I was up early this morning getting the oldest up and ready for an all-day activity.  I have trouble convincing my husband about this time of day thing about me, as he seems pretty much the same all through the day.  If you want to discuss something important with me, it had better be before I mentally shut off  for the night. Also when there aren’t too many other things going on at the same time.  You may think I’m taking it all in, but it’s likely that I’m really not.

The thing that happened

I did something silly last evening.  My ASD oldest son was waiting for a turn on the basement PC and decided it might be fun to beat mom in a friendly game of Blokus.  We bought this for the 7-year old, because the teenager wouldn’t like a gift in a box that said ages 5 and up, but we knew it was more along his line.  He commented on the fact that someone had restuck the sticky parts on the sides of the box that keep it from opening when it’s still in the store.  Odd, but life around here is usually odd, and I don’t ask too many questions about things that don’t seem to present a significant problem.  The little plastic pieces were still sealed in baggies inside the box, too.  This was surprising and we both commented that we thought the game, which was a Christmas present this year, had already been played by the other family members on a previous evening.  I especially remembered this, because as I was leaving to take the oldest to another activity, the comment was made by my middle son that he’d enjoy a chance to play the game and maybe even win once while his big brother was away.  My oldest doesn’t lose many games of anything, especially when there’s a definite strategy to winning 🙂  So we decided maybe we were mistaken and moved on.

Playing games

So we played our game, and since I had never played and had no idea what was going on until I could already see that I was way behind , he crushed me.  I did get better towards the end, when I knew more of what was going on.  I have to actually see a strategy played out to get it.  Middle son requested a bit more time to finish what he was doing on the PC, so the oldest asked to teach me a simplified version of a  game he really likes, which is called Go, while he waited.  At first I refused, because even my hubby gets completely frustrated trying to play this kid in Go. (Hubby doesn’t lose many games, either, and is having trouble adjusting to the fact that he just can’t beat this kid 🙂  If Hubby can’t take him, I’m just going to get pummeled, and we already did that once.  But he really seemed to want to teach me, and we actually end up having a very nice time, because he’s really quite pleasant in teaching mode.

Remembering

Fast forward to today.  I was straightening up just a little – because I’m the only female in the house, and it’s the only way anything is getting picked up EVER – and I noticed the Blokus game sitting out.  As I put it away, I noticed another Blokus game sitting under a pile of our other games.  And Then I Remembered.  Hubby had bought a second Blokus game weeks ago, because the price was just So Good, and he planned to hang onto it as a possible gift for someone later.  When my oldest was opening the sealed up Blokus game, it somehow never dawned on me that maybe this was The Second Game.  Understand, the males in my house are packrats, and I long ago stopped being able to keep track of what all is in our home at any given time.  Also, I’m going to go ahead and blame my husband for not stashing the second game somewhere that the kids wouldn’t come across it.  But still, this doesn’t reflect particularly well on my mental faculties.

Amusement

It was over an hour before I sensed the right casual moment to tell both my Aspie boy and my husband what had happened.   I couldn’t even say it without cracking up when I was only partway through.  At first Hubby just stared at me.  Then, in a disbelieving voice and with a quizzical look, he says “You didn’t.”  And Aspie boy and I both started cracking up.  Hubby was perfectly accepting of the whole thing, but we both know he’s going to be giving me a hard time about this for quite a while to come, because that’s what we do.   Once again, just because I  look like I’m with you, it doesn’t necessarily mean that I am 🙂

I’m tired, and the guys are  back from their game.  Good night all.

Homework on and off the spectrum,and Asking for help

Hi, Everyone.

I don’t know if this is considered bad form, but I just wrote such a long response to a question I came across on a Facebook posting for Hartley’s Life with 3 Boys that I want to turn it into a blog post.  I put more time and thought into it than I had initially intended, and I’m adding a few things here.  I mostly feel the need to write things after a comment or question made by someone else starts me thinking.  I really want to post something today, and I  have so much other stuff to get done, too – including reading through all the comments that have showed up since I checked last evening (I promised myself to get the laundry and cleaning out of the way first, and that can be my reward:).  Plus, this is a less angsty, slice of life sort of thing that I want to be able to write about sometimes.  If I get more time later I may move on to something deeper.  Then again, who knows?

On asking for help:

I feel like mentioning first that reason I got on Facebook this morning before venturing here or even to my email is that I decided to ask  for something I want.  Specifically, I was asking friends nearby for help with transporting my youngest home from school certain days so that I can have time to spend on my Aspie son and his homework right when he gets home and can still focus.  That’s a pretty big thing for me – the asking and the sharing of a little Aspie part of our lives .  But since I’ve been asking people here for help with questions and for doing me the great favor of reading my initial posts,  I’m very pleased with how that’s working out, so I’m trying to build on that momentum.  While I was writing this I just got interrupted by a friend letting me know she can help with my request, so that’s worked out, too.   I also asked/informed hubby this morning that he ought to tell me I look skinny today, which I do, because I haven’t yet found a way to eat while doing all this typing.  Since he’s an intelligent man, he responded with appropriate enthusiasm 🙂

And now on to what was supposed to be my post before I digressed.  On the subject of how we approach homework for my three boys:

I don’t know what would work for anyone else, but this year my ASD guy started high school, and we’ve mostly gotten into a groove with the homework after a pretty bumpy start.  Mostly it’s been a matter of insisting that he and I both go through each subject for the day and see what needs done and if he has the needed papers, books, etc., BEFORE we can talk about going off to do anything else. I still have to insist on this every day.  Then I ask him to give me an estimate of how long each item will probably take, and we figure out a total (adding a bit more time in case he’s figured low), and we look at what else is happening that evening and how much time he has to work with.  He has a parapro, and she provides her own list of the homework assignments, in case he missed anything.  I had to ask pretty insistently for that, as a matter of fact, but it’s been a huge help.

At this stage, it’s working much better to then ask my ASD guy to generate a plan himself for how he’s going to get things done and in what order, but I used to do that for him.  He’s finally become invested in doing well after so many years of me thinking he maybe never would, and being a teenager, he feels a great need to be in control of as much of his day as possible.  If time permits, he really seems to need a half an hour of downtime before beginning his homework, so I go along with that, but I keep tabs on the time to make sure that after that he’s at work.  If I don’t, it’s a crapshoot as to whether he’ll get moving on his own when the timer goes off or not.  If there’s a ton of homework, he can alternate his work with timed breaks. Again, I need to help keep track.

For ASD boy, habit is everything, and if we let things slide or I don’t keep track of his time with him, he gets overwhelmed and starts becoming very resistant to working on much of anything.  He has a nice big desk in his room now (mostly he stores stuff there, but it leaves his bed free as a workspace :), so I often have him work there and check on him if his brothers are too much of a distraction.  I do have to keep checking, though, because he’ll lose track of what he’s supposed to be doing.

My middle son is NT, but he’s a procrastinator and very absent-minded, and he has pretty intense anxiety and anger issues.  What’s finally ended up working for him is that we go through much of what I do with my older son, but more quickly and usually just verbally.  If he doesn’t make a plan right when he gets home, it won’t occur to him again that anything needs to be done until late enough in the evening that he ends up having a meltdown.  With him, too, a timed period of free time, then back to work until it’s done.

My youngest is only 7 and ahead of grade level in reading and math, so even if we forget his homework until morning, right now it’s no biggie.  I do try to get him working on the same plan as the others when I can, mainly because I finally have a system worked out, and habit is such a big deal around here, but he has so little homework, and sometimes there’s just not enough of me to go around and keep track of everybody 🙂  Sometimes something’s just gotta give.

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Welcome.

Hi.  I’m Diane, and I’m a stay-at-home wife and mother of three boys.  My oldest is an Aspie, and I’ve recently come to believe that I am, too.  The rest of the family would probably be considered neurotypical, although they, too, have their issues.

I promised my middle son I’d give this title to my first blog post, since he came up with it himself.  He’s bright and creative and great at brainstorming.  For anyone who doesn’t know the reference of either the title of this blog or the post itself, they’re both from a book called The Hitchhiker’s Guide to the Galaxy that’s a big favorite in our home.  I first read this book and the rest of the series back when I was in high school, and later I found myself saying “don’t panic” almost automatically to my firstborn baby boy each time he would go into a conniption upon experiencing some form of discomfort, which turned out to be a great deal of the time.  Little did I know then how that phrase would come to define our approach to life here on the Autism Spectrum.

The main character in the Hitchhiker’s book is called Arthur Dent, and early on in the story he finds himself out in space with no familiar frame of reference and relying on one good friend and an electronic archive of information compiled by all sorts of people to help him navigate his way through the unfamiliar challenges he’s facing.   The more I think about it, this is sounding very much like my experience since becoming aware of my oldest son’s position on the spectrum, and later, of what I believe to be my own position there.  My closest friend is my husband, who shares this adventure with me every day, and I’ve also gotten  much information, help, and support from the articles and blogs I’ve been able to access through the Internet.  I’ve broadened my horizons even more in commenting on other people’s blogs and articles when I’ve felt inspired to do so and in hearing what they have to say in return.  After years of isolation and confusion, I can finally communicate with people who are living through experiences similar to my own or at least as colorful.  

I was so pleased to find a blog theme full of color and actually called “Spectrum” when I started searching this morning.  Seems like a perfect fit, plus it keeps me from having to obsess over trying to choose from among too many other possibilities, which I could do for a ridiculously long time.  It’s one of the “spectrummy” things about me. More on that later.

(I got “spectrummy” from “Spectrummy Mummy’s Blog” and want to go ahead and give her credit, since it’s a word I like and find myself using a lot.)

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