Finding Ourselves on the Autism Spectrum

Archive for the ‘Communication’ Category

Shutting down and bouncing back

It appears I haven’t written a blog post in two months.  I’m not really surprised.  I’ve absorbed a bunch of new duties into my daily schedule, and it has required a lot of extra time on top of that to adjust.  I have managed to visit the occasional blog here and there and even to leave a few comments.  Gradually I’ve been trying to work my way back into things.  I’ve had ideas for several blog posts in the past couple of months that quickly disappeared when some new pressing issue needed my attention.  My kids will be on summer break from school soon, and since that will improve some things and make some more challenging, I really have no idea yet what my schedule will look like or whether I’ll have the time or inclination to write anything.  When I get too overwhelmed, I tend to withdraw and not want to communicate with anyone, and that’s been happening a lot lately, too.  Old habits die hard.  But since I already wrote an extremely long comment in response to this post at Alienhippy’s blog

I thought I’d take a shot at expanding it into a post of my own and see what happens from there.

I was just coming out of another shut down yesterday.  I’ve been experiencing this off and on a lot lately, probably because so many things have been pushing me way beyond anything resembling my comfort zone, which isn’t that large to begin with.  My son was having a shut down of his own yesterday after overloading on what were a very productive couple of days for him  (we have officially survived the biggest part of his Eagle Project – yay! :)), and needing to deal with his difficulty on top of everything I was already experiencing was a bit much.  I was kind of expecting it, but I still wasn’t really prepared.  And it kept coming in waves.  I’d think I’d helped him past something, and then a new anxiety would take its place.  I didn’t know what he needed and just kept trying all the different tools in my toolbox to see what might help in some small way.  I don’t think any one thing actually did the trick, but the combination seemed to eventually move things forward.  It’s like that with me many times, too. Thankfully, we’re both doing better now, but I still feel a bit discouraged knowing this isn’t something we’re likely to ever really get past.

For some reason, I think I feel guilty when I shut down, like I should be able to do better after all these years.  Mostly it seems to come from who I am and what I feel not being compatible with what’s expected of me and of others.  I need more down time, more time to process things, more stim time, more explanation of things, more help, etc., than what’s considered acceptable.  I don’t seem to know what I’m supposed to know or to be able to handle what I’m supposed to be able to handle.  If I’m honest, I usually don’t genuinely feel bad about myself.  It’s more that I’d like the rest of the world to adjust please, because I don’t fit here, and neither does my son, and I happen to know we’re both good people who are honestly doing our best.  I’d like for our best to be good enough, because it’s really all we’ve got.

Being confronted with too many demands on my time, my mind, or my sensory system tends to make me shut down, and being shut down seems to drain every bit of my energy.  It becomes a chore just to wash a dish or walk up the stairs, and talking to people is even worse.  I hide my issues as best as I can, maybe because I don’t want to be evaluated and found wanting any further than I already have been.  I try to sneak off to be alone and fixate on whatever I feel will help me at that moment, and when I can’t because of circumstances or unhelpful people, I become anxious and irritable and have trouble thinking.  When I do come out of that state, it feels a bit like a flood of energy, although I seem to be very low energy in comparison with other people, so that flood doesn’t last too long.  Sometimes I think of it like I’m riding a wave and try to use that energy to get a lot done, because I know I won’t have it later.

More and more these days, I am learning to accept who and how I am, and this allows me to do what I need to do to help myself much sooner.  I know that I have to meet my needs, because no one else will. I need to do whatever I need to do and to indulge whatever obsession I’ve currently got going in order to feel OK again, and it’s better for everyone around me if I just go ahead and do that.  The longer I wait, the worse things get, and I end up behaving in ways I regret and taking much longer to recover.

I tend to shut down less if I keep spending time focusing on spiritual things, and often that’s what brings me back around if I’m not too far gone.  But there are times when I let things go too far, and I have to indulge some other needs before I can approach anything with deeper meaning.  I think those are the times when I start to feel guilty, because I feel like I should have caught it sooner.  Then I have to practice forgiveness of myself and others in order to start over.  I really expected to be much more spiritually evolved by this point in my life. 🙂  Every day just seems to be the same struggle over and over – some feeling more successful than others, but none really fundamentally changing me or my situation.

It’s hard for me to watch my son go through this, because he has much less coping ability at this point.  Then again, he also has me, and much of the time I do seem able to help.  He also has a lot of great supports at school and at Boy Scouts and among our friends.  I sometimes wish I’d had more of the helps that he has when I was growing up, but then again, I managed, and I grew into someone who can help myself and help him.  So one way or another. we’re both doing  OK.

Putting things into words

TED 2010 Temple Grandin

Image by redmaxwell via Flickr

OK, I’m sort of having a little “aha” moment here, and the challenge I’m finding getting the moment into words to share actually relates to what the moment is about.

I’m in the middle of watching a very cool speech by Temple Grandin at the TED Conference, which you can find here:

Temple is sharing a lot of information about different types of thinkers, and I realized I usually have trouble deciding what kind of thinker I am. I’ve definitely noticed some tendencies. I can take in information through visual, auditory, or other sensory channels, but I have a lot of difficulty attending to more than one channel at a time. I’m not sure I actually ever do attend to more than one channel at a time – I’m just relatively proficient at switching between them, and I tend to switch frequently if I’m not particularly absorbed by something. If I’m listening to someone speak, I may find after a couple minutes of actually attending to what they are saying that my gaze has drifted elsewhere. I have no idea whether other people notice this about me or not. And if I’m concentrating on something visually, it’s hard to hear what anyone is saying to me. If I’m being bothered by something on a more primitive sensory level, it’s a challenge to attend to much of anything else at all.

I have also noticed that I seem to communicate more clearly in words when I can write and edit and change things around – unlike trying to talk to someone in person or on the telephone. I can have a tendency to go overboard with rewriting and correcting myself sometimes, but with no opportunity to do more than one draft, I really have a hard time getting across to another person what seems perfectly clear in my mind, even thought it’s not in words. It probably doesn’t help that I do a lot of my conversing through the day with children and teenagers, who also have a tendency to have lots of only partially-formed thoughts popping out of their mouths. I don’t get so much practice speaking with adults, apart from sharing the latest adventures of our kids, which don’t usually require much editing – just relating of things as they happened.

I don’t plan what I’m going to say as I’m talking, because I can’t really think and talk at the same time. (That doesn’t sound too good, does it? 🙂 ) It works OK when I know ahead of time I’m going to be dealing with a particular issue and have some kind of script for that in my mind to keep me on track. Otherwise, I can be as surprised as anyone by what comes out of my mouth, and I sometimes learn things I didn’t know I knew by hearing myself say them. I’ve actually had some tremendously cool conversations with certain individuals I trust just by talking and listening that way.

So I had been trying to decide if I was more of a language-based, auditory learner – unlike my oldest, Simon, who has shared with me that he sees in pictures or in pictures accompanied by words and gets totally freaked out if the pictures aren’t there, which has happened before under great stress – because I don’t consciously see everything in pictures and sometimes even have trouble forming a visual for things I hear if I don’t already have an associated visual file for that somewhere in my head.  I think I have a lot of trouble translating things that come into my mind from one channel into some other form.

[ A little digression here: When I read a book, I feel a need to have some actual individual’s face in my mind attached to a particular character or I can’t really connect with the book. It’s very helpful if I’ve seen the character portrayed on film or television, because then my mind just goes right to that actor’s face and voice. That works out well for the mystery novels I read, because lots of novels have the same main characters. If I don’t have a ready reference like that, I sometimes just end up choosing some actor I’ve seen in something that reminds me of a particular personality and use that.]

The truth is, I’m not sure I have a handle on how I actually get the impressions that are in my head. I suspect I’m scanning things from a variety of channels (auditory, visual, memory) and then zeroing in on those that interest me in some way.  It makes me think of the Google reader I’ve only recently discovered and started using to keep up with lots of different blogs – I can see parts of a lot of things all together at one time, then just pick out things I want to focus on one at a time.  But the reader holds onto the other updates while I am focusing on just one, whereas in my mind I tend to lose track of anything not in my current view.  I think where words and language come in is when I’m trying to sort through all the images/impressions swirling around in my mind into something that makes sense and can be retained for future use – at least for me, if not other people.

I have this thing about organizing. I get totally geeked walking into an office supply store. I can lose track of hours organizing books on my shelves or files on my computer without actually feeling a need to read any of them at that particular moment. I do read quite a bit, but it’s a completely separate interest for me from filing away information and sources of information. I’ve stored away so many articles on my computer about autism-related issues that don’t directly relate to my life, because I just like having it handy to retrieve in case maybe someone I hear about might be able to use it. Some info is also for myself and my family, but even that needs to be indexed and categorized, because I don’t seem to have any working or long-term memory to speak of. I see something, decide it has value, and immediately want to put it away somewhere where I won’t lose it – with my mind definitely not being a reliable place for storage. I can scan and re-familiarize myself with something extremely quickly once I’ve read it through once, but without going back through after some time has passed, I have a lot of trouble retrieving any relevant information.

This is reminding me of how my husband assured me fairly early into our marriage that I didn’t need to study to retake a driver’s test for my lapsed license, presumably because I was a good driver and an exceptional student, and because he found the test so easy. I had the study materials in my hand, but I didn’t use them, because I favored another person’s perceptions over my own self-knowledge, which I didn’t feel secure in or able to explain. I then proceeded to fail the written test and had to wait to take it again. Ten minutes study was all I needed, but I NEEDED the ten minutes to access that information and to carry me past over-analyzing the language of the questions and trying to process too many different scenarios from every possibility I could imagine.

Now that I’ve written way more than I intended when I first sat down, the point of this whole “aha” moment is that it’s just dawned on me that my focus on language isn’t necessarily because that’s the learning or means of expression that comes most naturally to me. I think it’s actually because it’s my means of trying to sort through and organize everything in my mind that mostly streams into it raw and unprocessed. It’s analogous to being in a messy room – which happens way too much in my home for my peace of mind – and having to sift through and put things away in order to be able to start finding anything. My outer experience is actually mirroring my inner one, which fits in with my overall personal view of the universe, so it somehow makes sense to me.  For now I suppose “that’s all I have to say about that”. 🙂

The challenges of visiting family

In a comment on my last post, Aspergirl Maybe linked a very useful letter, written from the perspective of a child with autism to family he is going to be visiting, that I’d like to share here:

My response to her very thoughtful suggestion relates to an upcoming trip of mine to a family wedding, and it grew into a blog post of its own:

I think this type of letter could probably provide some enlightenment for some of my family members and even friends about specific issues relating to our situation, although I think they will be the ones who already listen and respect my needs and those of my family.  They are also the ones with attention spans long enough to read a carefully worded letter.  I do feel like it’s time to start sharing at least a bit more with them.

The Others:

There are some other family members who don’t generally give the impression of hearing me no matter what the subject matter.  They appear not to listen or read past the first few words I try to share, and I feel flustered enough around them that I know I take a lot of words to get across what I am actually trying to say.  I also don’t know how to deal with these people when they dismiss the things I do say because they believe they know better (on what basis remains unclear) and try to push me into making the decisions that they think are best.  I’m fine with making my own decisions and am not really looking for their input, but they give indications that peaceful relations are dependent upon my going along with what they think.  They often come across to me, and I believe sometimes to others as, well, “pushy”.   I don’t really know a nicer, clearer way to say it.    Nothing I say seems to make much difference, simply because they aren’t actually hearing anything I’m saying or are only taking in enough to facilitate them dismissing what I say, unless, of course, I happen to agree with them.

Most  family members just seem to know how these individuals are and to not be too bothered by them, although occasional scenes arise when strong tempers are involved.  These individuals are always kind to my kids, but they interfere with my parenting and me doing what I need to do for our particular needs, and that’s not OK with me.  The way they see it, they are just trying to help or to make things more fun, and it feels like they would take offense at any suggestion otherwise, because they also come across as very defensive.  I know there are lots of people like this in the world, but I don’t choose people with these personality types as friends.  I only have these few in my life because I’m related to them, and they are close to others who are close to me.   When I try to communicate my needs with these people and they don’t listen, I become very confused and frustrated, probably greatly out of proportion to anything that anyone else would find the situation itself warrants.

Communication difficulties:

I’ve run into some major difficulty fairly recently with trying to communicate with a particular couple of family members through writing.  Almost everything I said was misinterpreted, and trying to explain myself just seemed to make things even worse.  Even my attempts at apology and taking responsibility for the communication difficulties (this was probably not the best time to bring up the whole issue of thinking I might be an Aspergirl) were called irrational and passive-aggressive, which I found very hurtful.  It soon became clear to me that the only way to calm things down was going to be for me to just say everything was all my fault and to ask forgiveness without looking for anything in return.  It was really the only move I felt I had left.  It did the trick, and they calmed down and now appear to have decided we’re all fine again, but it left a bad taste in my mouth.  I’ve been working on my own forgiveness issues with regard to them, and I’ve let go of most of my anger, but I’m left with some serious trust issues.

Travel difficulties:

Part of the problem for me in having to travel to see family is that I have issues with the travel itself – joint pain, car sickness, separation anxiety from sources of comfort, and a kind of situational claustrophobia that comes from being cooped up in a car with four guys.  And that’s when everyone is getting along, which becomes less likely the longer the trip continues.  These difficulties leave me feeling very much out of sorts when I first arrive someplace and for a long while afterward.  I’m not exactly at my best for dealing with challenging personalities at that point.

Another thing that’s a problem for me in traveling is my concerns about sleeping arrangements and how we will deal with sleeplessness in myself or other family members.   To sleep sitting up in a car just doesn’t happen for me. (I once spent the night lying on the floor of a school bus on an overnight trip, because I was the only one who couldn’t get to sleep in a seat.  Yes, it was as gross as you’d imagine, but I was so tired that it no longer mattered.)  My kids only sleep in the car if they’re really exhausted and we’re driving at night.  Being able to sleep wherever we’re staying really does matter.   Sleep problems are an issue with all of us at some point or other, but here at home we always have other rooms available and can move around. Usually it’s just one of us having difficulties, but some nights it kind of turns into a night-time version of musical chairs, and it’s interesting to see who ends up where by morning. 🙂 I know for many people, they just need a place to lie down and stretch out and they’re good.  We’re usually more high maintenance.  Hubby doesn’t always get this part, because he can usually fall asleep anytime and anywhere, although staying asleep is sometimes another matter, and he’s often up in the middle of the night or very early morning doing computer stuff here.

When we stay away from home, things can become more difficult, because the extra rooms are usually occupied by sleeping people who would probably prefer to remain asleep.  Also, when we’re visiting with family, everyone wants to stay up late and has a hard time winding down to go to bed.  Then during waking hours, the ones who didn’t get enough sleep and couldn’t do anything about it end up cranky and short-tempered.  The upside is that sometimes we’re exhausted enough from staying up to go right to sleep, but that’s not always the case.  For myself, I rarely get a decent night of sleep away from home, partly because I end up having to sleep close to family members, some of whom make enough noise that I can only manage a few hours of sleep even with earplugs.  I also end up dealing with whichever of my children is either having sleeping issues or just can’t get themselves settled down to let the others sleep, and that cuts into my own sleep time, as well.  None of this tends to bring out the best in me, but I can usually get by for a while with people whose company I enjoy.

What to do about it all :

Having already had some unpleasant experiences that were difficult for me to understand, now when I’m with certain people, I tend to feel anxious or threatened.  My fight or flight response kicks in, and it’s hard to communicate effectively in that condition.  Difficulties associated with travel make it worse.  I’ve already had some discussion with a couple of people I trust about options to help with sleeping arrangements and with having some space to ourselves when we need to regroup.  In terms of practical preparations, we’ll do what we can.  For personal preparation, my main goal at this point is to build myself up enough before I go that I can be firm about my own decisions without becoming angry or defensive in the process.   That last bit is the tricky part.   The one thing I don’t want to do is to make a challenging situation even worse.  I’m hoping that continuing to process my thoughts and feelings through writing will help to facilitate my self-assurance and peace of mind.  (And if anyone here wants to kick in any suggestions,  I’m definitely willing to listen. :))  I’m also working my way through some Zen literature that has helped me with difficult feelings in the past.

Cover of "Taming the Tiger Within"

Cover of Taming the Tiger Within

I think I may have to work on maintaining those qualities of peace and feeling secure within myself  in the presence of some stronger personalities before I can be calm enough to communicate effectively with them.   I think it’s at least worth some time and effort on my part trying to improve these relationships and the effect they have on me  and my family.   Honestly, I’d really like to get to the point that  all of this stuff can be in the background, and we can relax and enjoy what should be a very special day for two very special people.

Then and Now: Back to what works for us

Looking back through my journal again. Even as I delighted in the expansion of my toddler’s attempts to use his limited communication skills to include other people, I was also becoming more aware of the differences between him and other children his age. I tried to follow as much of the therapists’ advice as I could at home, but the advice wasn’t specific to our child, and it wasn’t always a good fit. Trying different things, making observations, and building on whatever seemed to be working was usually a good way to go. That’s still the approach I find myself using today.
August 30 – September 2

 Connecting with others:

Too much stuff to remember all of it. Highlights from our trip included the following: Simon really seemed to recognize and be happy to see each of the grandparents and to feel safe being left alone with them. He also seemed to genuinely recognize each of the houses, even K and S’s, and to go straight for the stuff he had enjoyed there on his previous visits. Despite developing a cold and spending lots of down time watching videos (especially the new Pooh one), he spent lots of time playing and paying attention to people, especially the kids. Simon played peekaboo with A for quite a while and seemed to be having a terrific time and trying to communicate with him like he would with me or his dad. He played with toys on the kitchen floor with E and did pretty well, even though he kept trying to be in charge of all the toys. The trip really showed how much progress Simon’s made lately compared to the last time everyone saw him. He recognizes people and places, he seems to have developed a real bond with his grandparents, and he waves spontaneously and frequently now and uses his hand signs and pictures to communicate with anyone he can.
September 3

 Noticing differences:

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


 September 5

 Back to what works for us:

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

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

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




Then and Now: Pictures, pointing, and a deliberate sound

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.

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.

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:


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.


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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