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: 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:

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.