Finding Ourselves on the Autism Spectrum

Posts tagged ‘perspective’

Then and Now

I’m in a nostalgic mood today. With Hubby’s help using a scanner at work, I changed my header to part of a picture I took many years ago (before digital cameras), when my oldest was a toddler and showing early signs of being “different”. As Simon grew and developed, so did his relationship with his Fisher Price Little People. This picture is from back when they were just things to line up in squares on the floor.

I started keeping a journal back then, mostly to track progress and to convince myself that things really were moving forward. It was a special time in our lives, watching our child gradually emerge from his own little world and branch out into ours. I’ve had this nagging feeling that I ought to post some of that somewhere, but I’m not exactly sure why. Maybe someone would get something out of following our journey through the early years. Maybe I just want an excuse to revisit that time. Maybe, as my youngest is approaching his eighth birthday and I have just had my forty-third, I’m not quite ready to let go of my younger days of having little ones and being so central to their lives.

I find myself making plenty of “I remember when” comments on the blogs of other parents who have younger kids on the spectrum. So much of what they share sounds so familiar. I think it would have helped me back then to share some of what I was writing of our experiences at the time. But then we didn’t have things like mommy autism blogs. I’m so glad that, as least, has changed.

Here’s a little taste of some of what I wrote, starting at the very beginning:

JOURNAL FOR SIMON

Start of journal and Simon’s current status:

June 10 (back entry)

Simon understands and responds to verbal “chairs are for sitting”. He waved both hands in response to wave and verbal request and waved at store clerk when Mommy did, too. Also brought a book to Mommy with a verbal request. Putting snap lock beads together well, instead of just taking them apart.

July 17 (back entry)

Used “more” hand sign at least three times at each meal to get fruit when Mommy held out the fruit and asked him if he wanted more.

Note:

Not sure where to begin here without leaving a large period out that I can only summarize between the end of the “Baby’s First Year” calendar and now. I’ll start with how things are now, and work back if I get around to it.

Currently Simon is very clingy with me and seems to feel threatened that others who come into our house will keep him away from me. At the same time, he will take another person’s hand to solicit their help in finding me if I have left the room. Seems willing to respond to the speech therapist only when she is very enthusiastic and doesn’t talk a lot with me and when I stay in the same room. Very responsive to the lady from “Parents as Teachers”, who is very energetic and cheerful, and since her latest visit has taken much more interest in finger plays, although he does not do the hand movements himself. He especially likes one she showed him called “little turtle” and will occasionally let me move his hands. He pays much more attention the more enthusiasm and surprise I can throw into it. I’ve started doing one called “butterfly wings”, too (out of the Baby Signs book), with a butterfly that lands on your nose, and once now he’s seemed to take a real interest in my nose, which he never had. He seems to enjoy praise, especially clapping, and enjoys when others copy what he’s doing.

He loves being in the water, whether in his pool or the hot tub, and he seems to recognize all of our bathing suits. He even brings me his suit when he sees it as a request to go out. He seems to be generally in a better mood when he gets lots of physical activity, so we try to take him on walks most evenings. He seems to understand that he has to have shoes on to go out and will attempt to put them on himself.

Working on a new idea of trying to get him to listen to music. Starting with mealtime, since he’s sitting still anyway. Suggestions from Mom and my reading are that I used very interesting and varied music and play the same tunes enough that he can get familiar with them. Currently using Vivaldi’s “Four Seasons” and a tape of Pooh songs. Also getting him to listen to a talking tape that has a picture book with it, and he seems to pay plenty of attention. Daddy had the idea first of having him listen to the audio of his favorite video, and for the first few times he paid great attention. Like with anything else, the challenge is to keep things fresh so he doesn’t get bored or feel pressured.

In general, sleeping and eating habits are good. Eats pretty well with a spoon now, except for a little trouble with scooping the food up in the first place. Just started trying raw slices of fruit. Haven’t been strapping him into the chair for about a month since trying it at Aunt Ruth Ann’s, but he occasionally climbs onto the table when impatient to get up. Very attached to his pacifier, and almost as much to his teddy bear. Pretty flexible about travel. Still loves videos, but his range of interest has expanded greatly, and some days he hardly watches any at all. Of course, other days it’s all he wants to do, and he seems to use it as a source of comfort when things aren’t going his way.

He can build pretty well with Megablocks now, and stacks regular blocks well. He can put together the wood shapes puzzle without help and even gets most of the pictures right on the critters puzzle. Big into throwing things downstairs and pushing them over railings. He will only scribble for a minute or so occasionally, but enjoys squishing little balls of Play-Doh. He helps put things in the washer or dryer sometimes and enjoys pressing the button for the garage door opener. Still loves the macaroni box. “More” sign has become very consistent and used for everything from stories to fruit, but Simon just seems to think it means “gimme” or “please”.

Looking back:

We did a lot of signing back when speech wasn’t coming along. We never used all that many different signs – just a few that were very functional. Once he got the hang of a sign he used it as often as a he could. I adapted some from a Baby Signs book after noticing that ASL signs seemed to require more dexterity than he could manage. We learned later that Simon had a motor planning problem that not only affected his large and small motor coordination, but it also affected his attempts at speech.

We lived in another state at the time and were very fortunate to have a couple of therapists who came right to our house free of charge. Benefits there were great at the time up until the age of three, at which point another agency took over, and benefits became virtually nonexistent. We moved back to the state where we currently reside when Simon was not quite three years old.

I’m noticing reading this how much Simon responded to a lot of enthusiasm. I’ve never been an especially energetic person, although I certainly had more energy years ago when this was written, so that was a challenge for me. Now the thing he seems to respond to most is humor, and that is something I can usually manage. 🙂

Simon still does very well in water. I think it’s because it provides lots of feedback for where his body is in space. He’s also still quite attached to videos and will watch some over and over again, although the type of video has somewhat changed. But even now he can still fixate on Charlie Brown and Peanuts videos, which were a staple items for him when he was little.

So that’s what I felt like posting for today. I have plenty more that I may choose to post from time to time. For now, it’s nice to look back and see how far we’ve come.

It seems I was mistaken

It seems I was mistaken.

My middle son, Alvin, likes to make noise – constantly. He hums and drums and whistles quite loudly all through the day until each and every other member of the household is at their wit’s end. And I have honestly believed, up until quite recently, that this was done for the express purpose of annoying the people around him and/or getting attention. It has seemed even more bothersome in light of the fact that two of us have Aspie issues and difficulties tuning out background noise in order to function. And when my NT husband who doesn’t generally have these issues has also been driven to distraction, I have usually concluded that the noisemaker was, in fact, being a trouble-maker.

Please understand, Alvin does cause trouble. He “stirs the pot” so to speak and will move from room to room in our home starting unpleasant interactions with whomever he finds. Besides making random noises all through the day, he will talk at length to people who are clearly trying to read, nag people about issues on which they’ve already declared their position quite clearly, comment upon siblings’ activities and personal habits, and even harass our pets when he’s feeling bored – all seemingly just to get a response. He also has a tendency to invade other people’s space and to barge into rooms that aren’t his when other people are trying to be left alone, because he doesn’t like being alone. And when he’s not doing any of that, Alvin’s still making seemingly random noises.

I usually deal with Alvin’s anxiety and boredom by going along with whatever social plans he happens to make, giving him jobs to do which take him out of the room currently being occupied by his latest victim, and trying to find books series for him to read. Once Alvin finds a series he likes, he’s a reading machine. I also try and create times when I will specifically pay attention to him and give him a chance to tell me about whatever is on his mind. He doesn’t really require that other people participate in his conversations and frequently argues with whatever they say, anyway, but he has a tremendous need to talk. Still there are frequently times when enough is enough, and I just need a few minutes of quiet in order to think before I can figure out how to meet his needs and mine and everyone else’s. And that’s generally when things like the random noises become too much.

Alvin doesn’t have a diagnosis. I can tell from my experience with Simon that Alvin has major anxiety issues, and I’ve witnessed his temper. I even took him to therapy for a while to try and work on anger management. He has problems with being alone, unless he’s really engaged with a book or a game, so he keeps seeking out company. Then his general behavior begins to annoy whomever he’s with, and Alvin gets defensive and angry. He’s smart and loves to argue, so then the interaction turns into an argument, which with siblings can often escalate into something physical. So basically, the kid moves from room to room leaving problems in his wake. I can actually tell what room he’s in by listening for where there’s a problem brewing in my house, and when he’s away at a friend’s, the house is noticeably quieter.

Once again, all of us including myself have been working on the assumption that Alvin is doing this on purpose – or that at the very least he has some control over his behavior that he’s not exerting. He’s not autistic. He behaves very well at school, and I’ve never had a complaint from any of his friends’ parents. He has at least a general understanding of which of his behaviors are problematic for other family members and why, because he’s been told at length again and again. But it just keeps happening. And I think I’m starting to see why.

As it turns out, Alvin is constantly making noise even when no one else is around. Lately I’ve been finding him humming and drumming and tapping and whistling even when there’s no one there to annoy. I’ve also been trying out this idea of looking at my other kids the way I look at Simon – not assuming he can do things just because others can or because he’s supposed to be a certain way at a certain age. Simon has a diagnosis and a whole string of professionals who could give reasons why he has certain difficulties. Alvin doesn’t have any of that, but does that really mean there’s nothing going on with him? He’s certainly anxious, and while that might be reduced if he weren’t in such frequent conflict with those around him, for now maybe the noise-making behaviors are just his way of soothing himself. That’s how I would interpret the situation if it were my Aspie son doing the same things. Why should he be the only one who gets the benefit of the doubt?

My husband will occasionally joke that Simon is my child and Alvin is his child because of their personality traits, and I haven’t disagreed. (We’re still not settled on which of us gets to claim our overly social Theodore :)). More and more it’s looking like I’ve been judging the behavior of my essentially NT middle son differently simply because he’s not an Aspie. Looking back, I think I’ve been holding Alvin to a different standard. It’s a standard that hasn’t worked for at least two of us in this family, so why should I assume it would work for him?

Just as I’ve been in the middle of writing this we’ve had another problem between siblings. It was typical in that there was really no one person at fault. Simon didn’t want Alvin invading his space, Alvin was just trying to talk to him, and everybody overreacted. After separating them and solving the immediate problem, I told Alvin some of what I’ve been thinking about things that he does not really being on purpose and maybe just being a way to calm himself. He told me that the “not being on purpose” part was what he’s been trying to say before, and I told him I was sorry for not understanding and believing that right away. I’m not sure exactly where we go from here, but just saying that seemed to calm him down quite a bit. We still have the problem of managing the needs of a family member who feels compelled to make noise and the needs other family members who require quiet in order to think and function. Hopefully with all of our needs on more equal footing we can start to make some progress.

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.

Coming back into focus

I get overwhelmed a lot.  By events, personalities, sensory input, illness and injury, too many responsibilities, too little time  – even sometimes by a single thought that goes round and round in my head.  Mostly it’s the thinking that gets me.  When my head is in a good place, I cope with the other stuff. 

I’ve  tried to start several different posts since my husband’s truck accident.  I can’t seem to get my thoughts organized around any one topic.   We’re both functioning fine and grateful for how things turned out, but we’re also still processing some things, and for me that takes the form of having trouble concentrating.   That’s not a new experience for me, but trying to write and stay in touch with people when I’m feeling that way is new.  Isolating myself has always been much more my style.

Here’s a picture we took at the junkyard the day after the accident, btw :

The force of the impact was all on that driver’s side door.  Amazingly enough, my husband made it out of this with just a sore foot and one scratch on his head, neither of which is bothering him now.   And the other driver was fine and didn’t require a trip to the hospital, which is also a great blessing.

It could have been so much worse.  We got through the crisis of the day, and now we continue to manage any difficulties that arise as a result.  We continue to add little bits to the pile of stressors that’s been built up over the past few years, and we keep moving forward.  There’s a lot of stuff in that pile.  Deaths in the family, business difficulties, financial worries, his experience with cancer a couple years back (he’s all clear now), and all the stuff that falls under the heading of spectrum-related issues.  Some things are mostly difficult for a while, and some are always with us.  And every time it feels like it’s a bit too much to manage, something new gets piled on top.

I spent so much time early on in our marriage weathering problems big and small and waiting for things to get better.  I kept thinking we would get to some point where there would be a big light at the end of the tunnel, and we could breathe a sigh of relief.  I really thought we were there for a while when Simon was in kindergarten, verbal and bright and functioning reasonably well in the safe little world that existed there.  He had overcome so much.  Then came the next tunnel – first grade – which was much longer and darker than anything we had experienced before.  We’ve come through that, too.  And on to the next, and the one after that …

I had to switch metaphors somewhere along the line.  Now to me it’s more like riding waves.  When things are good, I enjoy the ride thoroughly and for as long as I can, because I know it’s only temporary.  The bad stuff is only temporary, too, which makes it easier to tolerate.   I think what maybe constitues my own version of a mid-life crisis is that somewhere in these past couple years I let go of that idea that someday everything will get better, and I think I’m still grieving a bit over that.  I’m not devastated, but it makes me sad.  Some things will get better.  Some will get worse.  It will all keep changing, and the only thing we can do is choose how we respond to each thing as it comes.   My parents are in their seventies and have a good life, but it isn’t anything you’d call better – it’s just different.  The problems are different, and the enjoyments are, too.  For better or for worse, I think I finally feel like a grown up. 

OK, that was kind of a depressing thought.  But now that it’s out there (instead of rattling around in my head), I don’t really feel terribly depressed.  I’ve been to this place in my mental processes before.  This is the point I have to reach just before I finally decide to take charge of my thinking.  Once I can see what’s going on, I get to choose where I go next, and that’s empowering. 

There’s some kind of story my mom got from her Alanon experience that I’m probably not going to get exactly right here, but I think it’s still worth sharing.  (I realize this is yet another metaphor, but that’s how my brain works, so please bare with me.)  It’ something along the lines of a person walking down a path and falling into a pit.  Eventually somebody comes by and helps them out.  I’ve heard different variations of the story.  Sometimes the person who falls in repeats the experience enough times that eventually they learn how to find their way back out on their own.  Sometimes the one who comes to help jumps down into the pit, too, which turns out to be OK, because that person has been there before and knows how to get back out.  Sometimes the person walking down the path has fallen down enough times that they remember and learn to avoid the pit altogether. 

(If I was being at all unclear here, the pit is supposed to be a metaphor for a negative behavior or way of thinking. 🙂 )

I’m not so good at avoiding the pit, although it happens every once in a while.   Mostly I’m better than I used to be at climbing back out on my own once I realize where I am, but that can sometimes take a long while, and the effort can be exhausting.   It just seems to work a whole lot better when there are people around to remind me that I don’t have to stay where I am if that’s not working for me.  It’s hard to reconcile that knowledge with my lifelong instinct to run and hide within myself whenever I feel stress, so I’m trying  a different approach. 

I’ve been catching up on reading some other blogs over the past couple days, and I’ve started Rudy Simone’s Aspergirls book, too.  Reading other’s thoughts and experiences helps me to remember that I’m not alone in mine.  And whether this post makes any sense to anyone else or not, writing this and other things I’ve shared with family and other friends over the past couple days is helping to bring things into focus for me.  Thanks for listening.  

 Aspie boy just finished his midterm exams and came home early, so he and I are enjoying some peace and quiet while we have the opportunity.   The kids are all off school tomorrow for a “records day”.  I finally feel clearer and ready to move forward instead of staying stuck.  That’s not a bad way to start into a long weekend .  🙂

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