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Alex’s Visit

  • Posted on August 15, 2014 at 10:00 AM

Sunday was a work day. It wasn’t supposed to be, but I stayed up late into Sunday morning getting things done. Then, I slept until Sunday afternoon. When I woke up, I went right to my prayer journaling, then my independent studies, then to work. Alex only saw me on bathroom breaks. I’d give him a kiss on the forehead, untangle myself from his pinching fingers, and be on my way. I didn’t like it much better than he did, but at least I understood it. Alex was just plain frustrated with me.

Then, my mom came over. Willy ran down to tell me she was here. I was in the middle of something and didn’t want to have to start all over, so I kept going. Then, a while later, Alex peeked his head into my doorway. He saw me, smiled, and came into my den.

I guess he thought, If Will can go down and see Mama, then I can, too! “Hi, Alex,” I said. He took that as an invitation. He closed the door behind him and looked carefully around my den. I watched him while I kept working, and let him have his look. I’m just glad I took the cobwebs down first, because he looked everywhere. He’d made his way around my five bookcases and was coming back to take a better look at my desk & table workstation when Mark opened the door.

“I came to get Alex,” he said. He seemed a little surprised to see that I was fine with Alex being in my den. I didn’t bother telling him that, since Alex doesn’t talk, he wasn’t trying to engage me in conversation to distract me from my work.

Alex didn’t need much. He just wanted to be where I was and look at what I was doing. That was enough for him. Then, when I came upstairs and said “Hi” to my mom, I made sure I gave Alex lots of attention. Unfortunately, the rest of the day’s problems weren’t so easy to solve. Sunday was a painful day that forced me to stay up late…again.

Sibling Rivalry: The Legos Addition

  • Posted on February 26, 2014 at 10:00 AM

All the Legos have been in Alex’s room since we cleaned his room up and reorganized it. While the other boys will play with Legos now and then, Alex is rather compulsive about his Lego creations. He uses a lot of blocks, he’s made a lot of artworks, and he wants to keep them all—all the ones he’s finished and satisfied with—exactly how he wants them.

Ben entered stage left. Alex wasn’t there and Ben had a go at the Legos. That would have been fine, as long as he used blocks Alex hadn’t already used. But Ben was on an American flag kick late last week and Alex had a completed structure that included two American flags. Ben tore apart the structure to get the American flags and carried them downstairs without Mark or me realizing quite what he’d done. (We innocently assumed Ben had made his own.)

When Alex got home from his outing, he went upstairs and saw the destruction. He was rather upset. When he came downstairs and found Ben playing with the American flags he’d made, he went ballistic.

This is where effective communication skills would come in handy. We didn’t know those were Alex’s American flags. We didn’t even know, at first, that Alex was upset about the American flags. All we knew was that Alex and Ben were going at each other and since Alex “started it,” he wasn’t the one we most empathized with. He couldn’t tell us what was wrong and we didn’t know. But Alex’s behavior was strange—he refused to go in to his room and he couldn’t leave Ben alone if they were in the same room. Alex ended up hiding out in Willy’s room, sulking. But he couldn’t tell us what had upset him.

Eventually, I realized that Ben’s American flag Lego creations were a bit suspicious considering Alex’s behavior. So, I checked on Alex’s structures and saw the damage. I took the flags from Ben, gave them to Alex, and escorted Alex upstairs. Together, we fixed the damage and won’t be the last time.

Attention-Seeking?

  • Posted on October 21, 2013 at 10:00 AM

I’m testing a theory. The school psychologist who observed Alex speculated that Alex’s pinching is about predictability and attention-seeking. The team discussed how pinching may be avoided by withdrawing attention from Alex, which was sparked in part by something I talked about doing.

You see, Alex has a tendency to pinch me when I’m occupied doing something else. That happens a lot, by the way. When it happens, I tell him, “No pinching.” And I keep doing what I was doing. Then, I give him attention when I’m done.

So, I tried to make these efforts more immediate and purposeful. When Alex tries to pinch me (or anything else) I look away from him, say, “Stop,” and disengage. He stops. Then, I give him the attention he wants before I go back to whatever I’m doing.

It’s working, for the most part. Now, he sometimes goes to pinch or something and stops himself. When he does that, I give him the attention he wants right away. Other times he pinches anyway, especially when I just get home. It’s an on-going experiment. So, we’ll see how we both do at it and whether or not it’s time to get other family members in on the action.

A Step Towards Communication

  • Posted on May 13, 2013 at 10:00 AM

I was recently required to fill out a multi-page questionnaire about Alex’s communication skills. I took a quick look at this document, put it back, and made arrangements to fill it out with the help of school staff. That’s been done.

I arrived during the lunch hour (which lasts significantly less than an hour, but we still took an hour, so I got to say “Hi!” to Alex) to sit down with Alex’s teacher and go over the questionnaire page by page. The issue, which I found difficult to explain, was that the words they used to elicit information left significant room for interpretation.

So, our process consisted of:

  1. Reading the question aloud.
  2. Agreeing on what the question probably means.
  3. Applying the question to our observations of Alex.
  4. Agreeing on an appropriate answer.

This process stimulated some interesting insights about Alex’s means of communication. Without having been asked the questions and forced to articulate a response, I probably wouldn’t have volunteered some of the answers they were looking for.

Some of the things that we could readily agree on were:

  1. Alex’s expressive communication skills are limited to readily tangible wants and needs.
  2. Alex’s receptive communication skills are unknown: We don’t know how much Alex understands or how sophisticated his comprehension is.
  3. Alex tries to communicate in ways we don’t understand and seeks ways to make himself understood, yet he also gives in to frustration or gives up and we don’t always recognize his attempts to communicate.
  4. Successful communication is limited to a select group of people who know Alex well enough to “listen” in the ways that he can communicate, but even then much of the time there is a failure to communicate and “listen” successfully.

We also agreed that the ideal situation is to provide Alex with a means to communicate that can be expanded to communicate more complex thoughts and feelings. This means a system that is limited to expressing wants and needs would be inadequate, even if it were able to help Alex communicate wants and needs more clearly and more universally.

Furthermore, we agreed that the ideal situation would use Alex’s strengths to his advantage. The primary implication here is that Alex excels, in a seemingly intuitive sort of way, in the use of touch technologies. He uses iPads and SmartBoards at school and a Kindle Fire at home, and he’s able to figure out their capabilities more quickly and in more depth than most of the adults around him.

Not only did this process take us a step closer to getting Alex the professional help he needs to be paired with the right technological assistive communication device/program, it also helped his teacher and I better understand what Alex is doing now to communicate with us. Hopefully, this insight will help us to reduce the frustrations and failures and increase the success and depth of communication with the skills Alex already has.

Ironically, it started with a questionnaire that, due to its seeming ambiguity, could be described as an example of poor communication (based on my standards as a professional writer).

A Voiceless Mystery

  • Posted on November 30, 2011 at 8:00 AM

At a time like this, I can’t help but think about the autistic adults who write about how they’re silenced by the community at large, and by the community of parents of children with autism. I think about how they type their complaints and post them online. I think about how they host protests and shout at the marching parents who demand a cure. I think about these autistic adults, and I have to remind myself they’re not wrong. Their needs and their complaints are real. They’re very real and they are very important.

But at a time like this, it’s hard to empathize. Here I am typing away my own complaints and posting them online. It seems, at the moment, that we’re on equal ground. Whereas, the child I shelter is at an extreme disadvantage.

Monday morning I noticed that Alex was limping. It was only a slight limp, so I assumed he wasn’t wearing his shoes properly. He’s a toe-walker—walking as if he’s wearing high-heels even when he’s barefoot or wearing tennis shoes—so he frequently scrunches his toes as deeply into the shoes as they’ll go, with the heel flapping awkwardly behind his foot. I didn’t think much of it.

That afternoon, I got a call from the school nurse. Alex was limping at school. She examined his feet and ankles for swelling, but didn’t find anything wrong. He was calm—a bit out of sorts due to a cold. He came home and continued to limp. I didn’t know what to think, but it didn’t seem to bother him much and it didn’t seem to be getting any worse. I examined his feet, his knees, and his legs for an explanation. I saw nothing worth noting.

Tuesday morning he was still limping. I checked his feet, his legs and his knees again. Nothing. I sent him to school, and he was still limping. They also noticed some mysterious signs—lack of focus, apparent lack of recognition—and worried something else might be wrong. (I still think he’s just feeling a bit off from his cold, because his mood seems fine at home. He’s a bit cranky, but we’ve seen no signs of mysterious blinking or unfocused eyes. But his limping was definitely worse.) So, I took him home, took off his shoes and socks, and examined his feet. One side seemed just a slight bit swollen, but only in comparison to the other foot. His feet are so thin, so bony, and so muscular that a little bit of swelling fleshed out his one foot so it almost looked normal. It was only in comparison that the swelling seems unnatural.

Then, I looked all over the foot that was swollen. On the bottom inner sole of his foot, in a place that’s difficult to see because of the way the shape of his foot has been distorted by his toe-walking, there is a rather large, purplish bruise. I can’t help but feel guilty, since it seems unlikely that the bruise just appeared. We must have missed it.

The place was tender, of course, and is almost certainly the cause of the limping. Still, despite the limp, it’s not slowing Alex down much. He still jumps, walks and plays around. He still resists icing it or any other form of treatment available to us.

I can’t help but think about the ways Willy or even Ben ensures they communicate their discomforts, pains and injuries. I can’t help but think of all those who are “silenced” and yet are able to articulate their hurts. I can’t help but sympathize with the parents who, when confronted with minor mysteries regarding their nonverbal children, gravitate towards the terrible “what ifs,” because I do, too. What if Alex was troubled by something serious, even deadly? How would Alex communicate it? Would we notice the signs in time?

I don’t support the ways that these parents lash out. From angry words to ridiculous claims, they devalue and dehumanize others. I can’t support that. But I can understand the fear that drives them. I share in their frustration, their fear, and their desire to “unlock” their child.

Autism didn’t steal Alex. He’s not trapped behind a wall of autism. I will never support metaphors like this to describe Alex’s experience of the world. I cherish the ways he communicates who he is to those who are willing to listen. I grieve that so many aren’t willing to listen. But how I wish, oh how I wish, that Alex could say, “Mommy, my foot hurts. No, it’s this one, down here. See!”

Giving room for adult autists to speak and to write is worth fighting for. But those words, those revealing words that Alex just can’t say…they’re worth fighting for, too.

A Little Reminder

  • Posted on March 23, 2010 at 9:02 PM

First, Alex came down with “it.”  The observable symptoms included coughing, sinus congestions and drainage, intermittent fever, lethargy, and vomiting.  Then, Ben caught “it.”  He had the same symptoms.  Now, Willy has it.  And now we know a bit more about what “it” is from the perspective of the one experiencing the malady.

Willy described his initial symptoms as a head-ache.  Then, the vomiting started.  Now, his throat hurts, but his head and stomach seem okay.  He’s also experiencing intermittent fever, like his brothers did.  But he doesn’t have the cough or the runny nose.  So, either Willy has something different, or his brothers had both the cough/cold along with “it.”  The latter seems most likely.

While this is a relatively simple example, one of the most difficult things involved with parenting a child who experiences a communication barrier is this inability to really communicate when something is going wrong with them.  There are certainly much worse examples.  A child who is being bullied can generally talk about it (whether or not they will is another issue), but a child who experiences communication barrier cannot do so or cannot always do so.  This creates a chronic worry.  The same is true for other forms of abuse.  Unless there are identifiable physical markers we just don’t know what to suspect and so that nagging worry remains a constant in the backs of our minds while we do everything we know how to do to keep our children safe.

I often hear parents mourn their child’s inability to tell them that he or she loves them.  While I appreciate the significance of the words, children can communicate this in many ways.  Hugs and kisses, the recognition in their face, and other forms of connection are proof that my two primarily non-verbal children feel and express love.  For me, the possibilities of illness, injury or abuse are much more profound.  Sometimes they can find ways to communicate these things; but often the means of communication are inadequate.  “Acting out” is a warning sign, for example; but it’s a warning sign for so many things.  Unless you can find facts, sometimes you just don’t know and there is no way for them to tell you.  And that’s what I consider the scariest thing of all.

These minor illnesses are just a reminder.  As if I could ever forget.