Finding Ourselves on the Autism Spectrum

My new address part 2

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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

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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.

************************************************************************************************************************

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. 🙂

 

 

 

I’m amazed as I’m looking back through my journal how many lessons I learned back then that can still be applied in some way today. Trying different options, building on what seems to be working, and being willing to aim at shorter-term goals that are within reach apply just as well to working on social skills and schoolwork strategies as they did to trying to facilitate beginning communication. The details of the situation have changed, but the principles remain the same.

We started using some baby signs with Simon when he was a non-verbal toddler, but we also began introducing pictures to help interest him in communication.  According to the therapists, pointing with the index finger was a big deal, so we were working on that, too.

August 11

A little more responsive with LC, the speech therapist, offering her raisins and watching closely while she did a finger play. Schedule running a little late. We put up a picture of a balloon on the door of the room where the balloons are kept.

August 13

Simon became very energetic and playful right after breakfast, and did okay with B from Parents as Teachers, although he was more interested in his own activities than the ones she brought. He did really enjoy pushing a tennis ball through the “X” slits in a coffee can lid. Seems to want very frequent attention, like he’s making up excuses as he goes to get it (e.g., will pull me out of my chair and then wander for a minute before deciding on something to ask me for). Indicated pictures (with a little prompting) to get both his pacifier and some juice.

August 14

When I show Simon a picture of balloons, he seems to know to pat it to make a request. Just have to take him to the frig when I think he’s looking for pacifier and he’ll pat the picture right away. Need to start getting more pictures together, but still to take things slowly.

August 15

Simon behaved very well at the grocery store, even in the cart, partly because I gave him a grape on his request every few minutes. In the morning, he seemed to want to see the microwave, and when I said “microwave” a couple times, he started waving (since he heard me say “wave”). After we had a little spat and made up, he came out to see me in the kitchen, handed me the two pacifiers he had, and went back in the other room. Not sure if it was a peace-offering or he just wanted them in a safe place while he wasn’t using them. Doing well using the photos if I take him to them, and will point to a teddy bear and an apple in his Baby Minnie’s Busy Day book when I ask him. Does most pointing with his whole hand, but some with the index finger after he thinks about it a minute. Had lots of fun playing on an unplugged phone. He wanted me to pretend to talk, but then he’d take the receiver to see if he could hear anything.

August 16

Getting lots of pictures taken for Simon. Hope they turn out. Used his whole hand to point to the stop sign in Baby Minnie’s Treat book a couple of times, and he let me take his index finger to point to a couple of things. Went through a chapter of the Fowler book LC loaned me that discussed the advantages of the way we’re working with Simon (cognitive strategy) over a purely behavioral approach (ignore gestures and reward verbal). He had fun playing at the library and even helped clean up blocks with only a verbal request, but he was very unhappy to leave. Didn’t want to sit back down in his high chair after standing up in it at lunch, but when I verbally insisted several times, he made a sad face and then sat down, for which he received much praise. Used his whole hand seven or eight times to point to the kitty on different pages of Where Is Baby Donald’s Kitten?, and pointed with his index finger once to that and once to the pacifier in Goodnight Baby. Said a very deliberate “ba” looking right at us in response to sounds we made to him.

August 17

Lots of babbling today, especially that “ba” sound. Did very well having lunch at Applebee’s, even though it took a long time to get the food. Daddy had the idea of photographing food found on kids’ restaurant menus so Simon could learn to choose his own meals there. Took Simon out after a big rain, and he absolutely loved the puddles. Played with water and rocks and had a great time.

August 18

Did really well with LC today. Played telephone with both of us and let her help him take slippers on and off. He really liked when she made one of the slippers act like a puppet. He waved as she was leaving even before we said goodbye or waved at him. She suggested he might like to start getting into the alphabet. First Steps play group (which I tell Simon is “school”) starts tomorrow. Meanwhile, I have two rolls of film being developed at Wal-mart of pictures for him. Covered almost every food, and a lot of activities. When asked to choose his nighttime books, he actually put the ones he didn’t want back in the basket and handed me the ones he did want.

Looking back:

We used whatever was of the most interest to Simon to get him interested in using signs and pictures – favorite toys, drinks, food.  The idea was to focus on communication, rather than just verbal speech. Simon didn’t really start saying whole words until the following spring, when he had been receiving speech therapy for about a year and a half. And even then, his motor planning difficulties made it difficult for him to make himself understood. That also made first learning to point with just his index finger a challenge. Having other ways to communicate during this time did a lot to relieve his frustration and ours.

 

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.

I've been tagged

Kathleen at  http://autismherd.blogspot.com/ was sweet enough to tag me in a “sort of ‘what do you have by your bed to read’ meme.  The rules are that you have to take a picture of the books….explain a little about them…and then tag a few bloggers..” (I copied that bit from Kathleen.)

A few months ago I was going through a phase reading Shakespeare and Dickens – seriously.  Sadly, such is no longer the case.  My current powers of concentration tend to things with shorter chapters and simpler words.  And, truth be told, I don’t get much chance to read in bed these days, which pains me greatly.  Hubby snores more than a bit, and by the time I get into bed at night, I can usually only get through two or three pages of something before nodding off.  So I tend to do my reading during the day or evening sitting in my favorite glider chair that my children have not yet succeeded in breaking, which is located in the room downstairs that I try unsuccessfully to keep to mostly to myself.  Next to the chair I have two little tables, one of which is mostly covered in books (along with some afghan squares, a sewing box for my quilting supplies, and a brush for the cats):

That doesn’t really make it very clear what I’m reading, so here’s a better shot of the books themselves:

Mostly these are books that I’m just reading a bit at a time, alternating amongst all of them. 

 How to Talk So Kids Will Listen is something I look at periodically to keep me mindful of how I’m speaking to my kids and to get occasional new pointers.  It’s hard to keep seeing that there really are things I could be doing better with just a little practice.

Next to that is Anne of Green Gables, which I am rereading in hopes of finally moving on to the rest of the series.  Living in a house full of men, I find myself with a need for something girlie every once in a while.

Hitchhiker’s Guide to the Galaxy just makes me laugh and keeps me from taking life too seriously.  I first came across the series as a teenager, and I’m very happy that my two older boys have both enjoyed it so much.

I’m still working my way through Aspergirls off and on.  I have to be in the right frame of mind for exploring this one and asking myself which parts of the book resonate with me and to what extent.  I had taken a break for a little while, but I think I may be ready to pick it back up again.

The green book is a collection of three works by H. Emilie Cady.  It’s spiritual reading that feeds my need for positive input, and I especially like her focus in one chapter on embracing different viewpoints.  There is a Bible below that which I am actually in the process of reading all the way through alternating between the Old and New Testaments.  I got stalled in that for a while, but now I am almost three quarters of the way through.

To the left of that is my latest P.G. Wodehouse book from the Blandings Castle series.  I came across the Wodehouse Jeeves and Wooster television series on PBS because I’m a fan of Hugh Laurie from “House”, who plays Bertie Wooster, but I like the Wodehouse books so much better.  As in the Hitchhiker’s books, so much of the enjoyment is in the narrative, which you really miss in any kind of television or film productions.

The little book left of that is an Alanon daily devotional book.  There’s a great deal of wisdom there, and it’s something I can read even when I’m having a bad day and can’t focus on much of anything else.

The last book is a library copy of Northanger Abbey by Jane Austen.  I’m not enjoying it as much as some of her other works, but I decided I was going to read them all, so I’m doing my best to appreciate what I can.  After that, I plan to move on to Mansfield Park.

There you have it.  And now to inquire about the reading habits of some other worthy bloggers:

Aspergirl Maybe at aspergirlmaybe.wordpress.com

Angel  at mindretrofit.com

Bruce at born2bme.wordpress.com

So what’s everybody reading?

 

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.

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