Finding Ourselves on the Autism Spectrum

Posts tagged ‘journal’

Letting in the light

"Kirche Gröben" (big church), Brande...

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So I’m just realizing something. I tend to think of myself as not being particularly creative. I can frequently see new ways to apply other people’s ideas – which I suppose is creative at some level – but I rarely come up with anything original on my own. I’m OK with that. I have other skills. But as I’m looking back through some of my old journals, I’m realizing I was actually making something up – I was trying to put down “nice” things and to paint a pleasant, “normal” picture of our lives fit for public consumption. Not so much in Simon’s toddler journal, because that was really written just for myself. But later on, I started taking some journal entries and emailing them to family living hours away. Somewhere along the line, I started writing with my little readership in mind, and I censored myself accordingly. I wrote what I thought would be amusing or cute to make aunts and uncles and grandparents feel good and feel positively about my own little family. There’s nothing inherently wrong with that. The grandparents, in particular, seemed to enjoy it quite a lot and look forward to my next installment.  But I had stopped writing for myself.

Then there was the wall my Simon hit in first grade. After we had pretty much convinced ourselves that we had this “recovered” autistic child and were happily patting ourselves on the back, we discovered whole new issues and a whole new level of discomfort. I still remember the first phone call I got two weeks into the school year informing me that Simon “wasn’t adjusting well” to first grade. That started us into a downward spiral from which it’s taken years to climb back up to a place where the future looks promising again, if very different from what we had previously envisioned.

When Simon was little, the things with which he needed help seemed more straightforward to me – talking, turn-taking, sensory issues, motor skills. I seemed to have an aptitude for approaching these things, and more than one therapist suggested I might make a decent therapist myself. And while Simon had enough social anxiety at four years old to warrant putting him on medication, he’d made great progress and had been off the medication and doing fine for months by the time he finished kindergarten.

Then first grade came with a full day of structured activities, more challenging social interactions, and a well-meaning teacher with terrible instincts and no time to listen to me. Simon began to hate school and to see many of the people around him as enemies. We were dealing with school staff who didn’t know much of anything about autism and seemed to need to see their own methods fail before considering any of our ideas – not that we had much clue what we were doing, either. We were in uncharted territory, and we had little in the way of guidance. But we were definitely having more success at home, and we knew there had to be a way to expand that into our son’s school experience.

While all of this was going on, we were still living in the same neighborhood and seeing all the same people we had before things went downhill. We didn’t know how to explain to them that the child who seemed fine when they saw him in other situations was really struggling now just to get through a regular day. For better or worse, Simon eventually started having problems in other areas, too, as he lagged behind his peers socially. My husband took the lead on talking to some of our friends. I mostly did what I do, which is to shut down. I was never very comfortable socially myself, and having a child so different from everyone else’s made that much worse. I stopped talking or writing to people except when I could come up with something to say that was both pleasant and true, and that happened less and less frequently. I was too overwhelmed with the challenges we were facing to care much about that at the time.

I became more and more isolated not knowing how to “fix” everything that seemed to be broken. I didn’t know how to process having a child who was not only struggling but was doing so in such a way as to make people believe he was purposely being difficult. He didn’t cry or withdraw every time he got overwhelmed anymore – now he was becoming angry and confrontational. I’m going to go ahead and give the first grade teacher a big slice of the credit for that development. I eventually started calling her the “High Priestess of Love and Logic” behind her back. It worked with her own kid, so it must be the answer for everyone. My son’s reaction to being continually asked to solve his own problems when he had no tools for doing that was to finally get fed up. And while he made improvements all along the way, I’m not sure he’s ever really stopped being fed up. However, he has started to see the positives in some things and to actually want to do well in school and get along with other kids, and that’s huge.

So the original point of all this when I started writing today – besides distracting myself from dwelling on Simon’s upcoming optometrist appointment – was that the reason many people don’t know much about our lives is because I haven’t actually told them much of anything. I’ve continued to write occasional emails and to make infrequent visits to see family and friends who don’t live near us, all the while trying to look like everybody else. And while I find myself mentioning autism fairly early in meeting folks in our neighborhood these days, they mostly don’t actually see much of Simon – except those who have know him for years and have kids whom he sees at different activities or even, on rare occasions, just to hang out and play games.

It wasn’t a conscious effort to exclude people. It was just that for so long we were the only people I knew dealing with any of this. I only ever talked about things with teachers, doctors and therapists, and my husband. Gradually we’ve let some others in, and we’ve even met a few other families in similar situations. People have been overwhelmingly supportive and understanding – or at least not openly judgmental. No one besides the occasional playground bully or passing stranger has ever been deliberately unkind. Most people want to be kind, and if they don’t, then I don’t want them in my life.

So why do I find it uncomfortable outside this wonderful blogging community to share when we’re having a “moment” or a struggle and it happens to be related to my child having autism? I have no problem mentioning injuries, attitude problems, or things I just find frustrating. I’m sure people I’m friends with on Facebook know more than they care to about the vehicle I currently drive. They all know I “share” items related to autism from time to time, and a few have either asked about our situation or asked for some general information on the subject. I suppose I just have it in my mind that most people aren’t going to “get it” when I share something spectrummy, because that’s not part of their experience. It is, however, part of mine – every day. And maybe people who care about other things going on in my life would like a chance to show that they care about these things, too.

So I posted something spectrummy on my facebook profile today about Simon’s anxiety over going to the eye doctor, and  I’ve gotten several supportive responses already.

“Begin challenging your own assumptions. Your assumptions are your windows on the world. Scrub them off every once in awhile, or the light won’t come in.” ~Alan Alda

(I love Alan Alda.)

As I let little streaks of light into this closed-off room of mine, I can see myself and my life a bit better, and I’m finding myself wanting to let in just a little more.  Sharing through this blogging community has become part of a larger process for me, and I’m grateful to be having this experience.

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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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