Finding Ourselves on the Autism Spectrum

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.

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Comments on: "Then and Now" (8)

  1. I KNOW I would have appreciated reading things by parents whose children were older than mine. It would have helped so very much. I remember feeling very lonely when my boys were small…I think it is wonderful of you to share your journal-thanks. 🙂

    I tagged you i a post…you have to come on over to see! 🙂

    • Thanks for the encouragement. It means a lot.

      I got so busy getting my book post in order that I’m just finally getting around to a reply. This is kind of a fun one. Thanks for thinking of me. 🙂

  2. I am so glad you wrote this out. I think that it is very beneficial for people, not only for us to be able to recognize certain behaviors but also to have the understanding that there are differences. Along with giving ideas that we may not have considered.Your sharing can help in many ways.

    I see a lot of similarities and differences between Daniel and Simon at that age. Daniel still loves water and I have always loved the water too.

    I tried signing with Daniel and he wouldn’t have anything to do with it. I think it was too hard for him. But I did use pictures and songs. Music was what helped him the most. Singing words and basically singing everything we were doing, helped his language. It’s a good thing he never had a problem with my voice! 🙂

    I actually still play with Fisher Price people like that! LOL! (I really did laugh out loud) The kids have learned to play better with them than myself. 🙂

    Personally, I would also like to know about your journey during the age that my kids are at. Between the 4-6 age or a little beyond (5-7) Any significant things during the transition to 8? I think you may have some good insight for me. If you feel up to sharing that would be great!

    • Thanks for the encouragement. I do feel like I want to keep going with this. The challenge may be wading through everything to find bits I want to share. There’s quite a lot of material built up over the years. I just put up another post that concludes with the idea of building on whatever works for your particular child. To me, generalizing doesn’t do the trick, because all of our kids are so unique.

      I’m trying to think back to the ages you mentioned. Around 4 to 5, Simon was having acute social anxiety issues to the point that we put him on medication just to get him to the point of being able to work on things. he came back off the medication about a year later, then went back on for a period again later. He’s been medication-free for over two years and is doing better than ever.

      Starting with first grade, the wheels pretty much fell off the wagon for us. We felt like we pretty much had him all “fixed” during kindergarten, then a whole set of new issues cropped up in reaction to the teacher, dealing with the full school day, etc., that left lasting effects. It was a huge change for all of us, and that was the point at which we got serious about accomodations. It’s taken time, but things have improved greatly since then, and I hope to find time to share a lot of that journey.

  3. I love that you kept this journal and that you are sharing it with others. I too am grateful there are now autism blogs. I felt so alone when we were trying to figure out what was going on with our daughter especially before the diagnosis.

  4. Aspergirl Maybe said:

    BTW, I like the new header very much. I think it also great that you have the journals from when the boys were younger and can look back in so much detail.

    I remember when my son was very small that he liked me to help build Lego towers. However, I was only allowed to put the same size/shape Legos on top of each other and they couldn’t be offset. No four-pins on eight-pins, and no making a staircase or any other than a straight tower.

    Also he wanted to do it in the living room and violently resisted me trying to move the towers to the kitchen floor so they would stand up better than on the carpet. Only a few feet away but may as well have been a different planet. 🙂

    • Thank you. The header picture didn’t really lend itself to being a header, but I cropped it enough that it gave me a way to include something meaningful to me.

      I’m noticing now as I look back that I made note of many more things when Simon was a toddler than I did later when he started into school. When he was little, I was mainly writing for myself and wanting to notice everything I could. Later on, things really started going downhill for a while. By that point, I was mainly writing things to share with family who lived a few hours away, and I think I was censoring myself more. I wish I’d had this kind of outlet for my experiences back then – I didn’t know anyone else who’s life looked even remotely like mine. I’m really glad that has changed.

      I like what you shared about building with Legos. Having playtime have to go a certain way sounds very familiar. Most people don’t relate to having to teach a child how to relax and have fun. To this day, when I read well-meaning descriptions in books of the simple joys of childhood and how children are always so carefree and open and enjoying every moment, I tend to roll my eyes. Our own experience has been very rewarding, but it certainly hasn’t ever been simple or easy.

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