Finding Ourselves on the Autism Spectrum

Posts tagged ‘progress’

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.

Progress, not perfection

Here’s a quote I like from an inspirational book by Martha Smock called Halfway Up the Mountain:

“Do you know that the word mediocrity comes from a Latin word mediocris meaning ‘halfway up a mountain’? Somehow this puts a whole new slant on this idea of mediocrity. It is not something fo be disdained or to be ashamed of. Rather, it is a halfway mark. And it does not necessarily indicate that this is as far as you can go. It says, ‘This is as far as you have come.’”

So we’re managing these days. We’re making progress some of the time, and just trying not to move too far backwards at others. None of the problems we were facing a week or a month ago have really been solved or gone away. Nobody has made any really exciting accomplishments lately. Some new challenges have arisen, and some things have even gotten worse. But we’re still here, and we’re doing OK, and that’s something.

The car that I’m not driving has needed to be jumpstarted for the past three mornings, although it did finally start today. Hubby says it’s because I just wasn’t taking no for an answer. 🙂 And he sort of fixed one of the non-working seatbelts in the back seat. Problems with extended family are not all resolved, but there have been real improvements, and after a couple of months that subject is no longer something I struggle with on a daily basis. I lost some weight and haven’t gained it all back, I’m exercising just a bit, and I am gradually making my way through the last couple of books I started. None of these things is just where I’d like it to be, but I’m still hanging in there and moving forward when I can.

The guinea pig that has been Simon’s roomate for the past five years passed away two days ago. He wasn’t showing any signs of illness – maybe just slowing down a bit – so I’m choosing to believe he went peacefully, which to me is a good thing. Simon was upset enough to spend two hours in bed, but we worked through things, and he finished his homework that night and was back at school the next morning. He talked through things very appropriately, and I think he found some of what I said to him helpful. He hasn’t asked about getting another pet, which is just fine with me. We still have three cats, one remaining guinea pig, and a dwarf frog, so I’m not looking to make any new additions. Where we are is just fine for now.

Simon is finding the Robotics club he’d initially been so excited about a bit frustrating these days. He says a lot of it is because of the noise level making it hard for him to follow what’s going on, which is something they really can’t reasonably fix during the build process. He’s still attending – just not as often and not with as much enthusiasm. He’s learning about hanging in there and working through some difficulties, and there are still parts of it he finds enjoyable. It’s not perfect, but it’s something.

Simon also got a bit freaked out about his new Computer Applications class this week, because he hasn’t practiced the typing component before – despite my repeated attempts to remind him of this and to facilitate the process – and he just happened to be sitting next to a junior his first day who was apparently already a very good typist. We got past his initial panic and frustration, set some more realistic expectations (which is in itself a difficult thing for him), found him some games at home that work on typing skills without being too boring, and he’s doing OK with it. He’d already gotten past one challenge just going into the class, since it’s being taught by the tennis coach whose team Simon decided to quit after just a few weeks during the summer. Nice guy, but I can tell he’s not exactly used to relating to kids who get so overwhelmed by things, so he’s getting to have some learning time, too. Overall, the class will be a good experience, even if it’s not exactly what either Simon or I had in mind at the start.

I’ve been getting lots of resistance recently from Alvin and Theodore – and occasionally from Simon – to following some rules I’ve been insisting on in order to take some of the drama out of life around here. I absolutely hate and shy away from conflict of any kind, so having a constant state of conflict in my home is especially draining. This is another area in which things aren’t all better, but we are making definite progress.

As an example, after years of trying to create the perfect system that would eliminate daily conflicts over electronic devices – taking turns, limiting time, multiple games and programs interfering with each other, being able to transition to some other activity, etc. – I looked back and discovered that some of what I had been doing had actually worked. None of it completely solved the problems, which was why I kept trying to find something else, but some things were definitely better. Once I got past how ridiculous all this must look to someone outside our family and the fact that we still keep making mistakes, I could observe some changes which seemed to have a positive effect and combine them into something useful.

I noticed that recording the beginning and end of each child’s turn greatly reduced the conflicts stemming from individual feeling like they weren’t getting their fair share of time, because it was all written down. Recording the times and using a timer also helped them transition out of the activity more easily, which is a significant challenge for all of them. Getting a parent’s initials on the same roster before being authorized to take a turn reduced the incidences of kids playing without permission, again because there’s a record. Now nobody has to rely on a questionable memory or conflicting reports. Lots of trust issues going on around here. 🙂

Having each authorization go through a parent for every turn has reduced the kids’ conflicts with each other over somebody taking too long or getting too many turns, which in the past have frequently escalated to arguments, meltdowns, and physical altercations. This has also allowed me some opportunities to plan better, because I can look ahead to what we have coming up – dinner, homework, scouts – and make a better decision about whether or not a turn is appropriate and who ought to take their turn when. It’s not fixing everything, but it’s helping.

Requiring everybody to close out whatever they’re doing aids in transition and helps prevent accusations of other people shutting off a child’s program or losing their accumulated progress on a game, because each child saves and shuts his game off himself. Only allowing one individual at a time in the basement where most of the electronic devices are located (except with special permission) helps reduce conflicts over siblings commenting on each other’s games, and it provides a natural limit on how many electronic turns can fit into a given period of free time among three individuals.

The best thing about all of this is that having a plan and having things recorded has helped me to feel more in control of the situation, which has helped me to relax and be more effective when problems do come up. When someone is running over time or freaking out about something – which still happens frequently – I am better able to be flexible and to work out a solution we can all live with. When there is a question about whose version of events is correct, I can remain objective and not have to take sides or question my own memory.

Each of these strategies has initially been tried separately, and each has prompted a lot of resistance at the outset. We’ve also had plenty of experiences of each of us just plain forgetting what we were supposed to be doing, suffering the natural consequences, and having to start again. But by focusing on progress, rather than perfection and being willing to make changes as we go, things are definitely better, and everybody is a just a bit more relaxed. Gradually the kids are becoming less resistant, and Hubby is doing his best not to derail things when I step out of the room for more than a minute. 🙂 This has helped build my confidence that we can handle other issues, too, and I’ve already got some other works in progress.

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.

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