Tag Archives: eye contact

Freestyle

About a year and a half ago, a fairly new friend of the family came over for a visit on a day that Neil had forgotten to take his medication. Behaviorally, he was difficult – highly agitated and unfocused.  At one point, when he was prevented from doing something that he wasn’t supposed to do, he went into full meltdown mode, growling and writhing on the floor, grabbing my legs and biting them.

Our friend tried to put a humorous spin on things. “Oh, he’s freestylin’!”

“Yeah,” I said, yanking a leg out of my son’s grip. At the time, it was painfully obvious that Neil very much needed his two types of medication to manage his behavior, both at home and at school. And it made a huge difference for him, enabling him to be mainstreamed with assistance and – unless a dose was forgotten – eliminating or subduing his meltdowns. I think both of us were relieved by it.

But, like most medications, his has its drawbacks. In addition to Neil’s excessively itchy scalp, it also caused noticeable joint stiffness for which he needed to see an orthopedist. And then there was something noticeable only to me – his eyes. I didn’t get to see much of them anyway, but I saw them enough to know them. Now when I looked in his eyes, there was a listlessness – a vacancy – caused by the medication. I wanted his behavior to change, not his countenance. Of course I welcomed the behavioral management, but his eyes were different. He didn’t look like himself, even when he smiled. I looked forward to the day when I could look into his eyes and see him again.

That day came last week.

This past November, we discontinued the antidepressant, and he did fine with that. Every week afterward, Neil kept asking me when he could stop taking the other medication, and as much as I also wanted him to stop taking it, I wanted to be sure that he was ready. If not, we could have him go back on it, but that would have been difficult after the six-week weaning process (cessation can cause withdrawal symptoms if not done gradually). In March, I felt that he was ready, and we began the process. There were a few times when I wondered if it was too soon, but we pulled through. In fact, Neil’s overall adjustment has been phenomenal. During that six-week period, we had two weeks of considerable upheaval while all of the flooring in our home was being replaced. Every room of the house, including Neil’s, had to be completely emptied and furniture had to be relocated, including pieces of our sectional couch being kept in the kitchen for three days. Neil was a bit on-edge during that time, and his medication was down to half-dose, but I am thrilled to report that he did not have a single meltdown. Not even close.

He became a little agitated at school during the weaning process, but he worked through it. This is huge progress for him! In the past, his agitation would lead to outbursts because he could not regulate his emotions or behavior. And now he can. The real test came last week when he was completely unmedicated and we attended his Court of Honor to receive a Scout rank advancement that he’d worked toward for two years. He had a new merit badge sash that he spent quite a bit of time applying his merit badges to, and he looked forward to wearing it. That night, we ate dinner and then got ready to go to the Court of Honor. After he dressed in his uniform, Neil built some Lego while I washed the dishes. When it was time to go, I grabbed my camera and my dessert contribution, and then we left. The meeting room, before the presentation started, was unstructured and loud with parents chatting and kids playing, and I looked to see how Neil was handling it. I could tell he was getting a little amped up, and then I noticed that he had forgotten to wear his new merit badge sash. I had to tell him before he discovered it during the presentation, which could have been disastrous.

I approached him quietly and broke the news. Angrily, he sucked in his breath and clenched his fists by his side. “It’s okay,” I told him. “Look – several of the other Scouts forgot their sashes too.” I could see him processing, regulating. Within ten seconds he had unclenched his jaw and fists and merely sighed in disappointment. “I was distracted by the Lego,” he muttered.

Sighing and muttering. This is freestyle now, and it’s a far cry from growling and writhing on the floor. In addition to that, he reported last week when he got home from school that for the first time ever he did not feel drowsy during second period, and he feels like he’s able to focus better. His scalp no longer itches. To top it all off, the next night at dinner he looked at me as he described a new movie idea, and he held eye contact for the longest I’ve ever experienced. It was incredible. And this time, the vacant look was completely gone. It was Neil again. I gazed into his beautiful eyes, absorbing his essence.

I’ve got my son back. And he’s better than ever.

 

Image credit:  Dalibor Ogrizovic

Dinner at Our House

The following uncensored conversation took place in our dining room tonight:

Nigel (seated at table): I don’t want hot dogs tonight. I want to choose what I want for dinner.

Aidan (seated at table): What’s with the whole wheat buns? You know I hate these.

Me (a few feet away in the kitchen): I have work to do tonight, so I made something quick for dinner. [I start grating cheese on the nachos I am throwing together making for myself. The boys are silent for a few minutes as they eat.]

Aidan: Stop staring at me!

Nigel (matter-of-factly): I’m going to say something to you. I’m making eye contact.

Aidan: Well you don’t have to look at me!

Nigel: I’m going to build a time machine and go back in time to stop JFK from being assassinated.

Aidan: Time machines don’t exist.

Nigel: I’m going to invent one.

Aidan: It won’t work.

Nigel: I’ll go back to November 22, 1963 . . .

Aidan: I don’t even care, Nigel.

Nigel:  . . . and I will save him.

Aidan: Stop staring at me!

Nigel: I’m making eye contact because I’m talking to you. It’s a social skill.

Me: Aidan, if he’s talking to you, it’s okay for him to look at you.

Aidan: Well, it’s rude! [He stands up and walks over to the kitchen counter where he deposits his dinner plate with the untouched wheat buns still on it and goes to his room. Nigel, meanwhile, continues laying out his plans for thwarting the JFK assassination.]

I take my nachos out of the oven and sit down next to Nigel, who has eaten his whole wheat buns. He tells me his ideas, like suggesting to JFK that he use a “decoy” in the car. I suggest having him re-route the motorcade. “That would make the assassins suspicious, Mom.” I suggest that an inflatable President in the car would as well. “It could be mechanized so it would wave.” All this time he is making perfectly appropriate eye contact with me. He is conversing. And I’m trying not to dwell on the fact that my other son stormed out of the room (thanks, puberty) yelling about the very thing that Nigel has so diligently been trying to accomplish.

Someday, we will all sit around this table at the same time, all with the same food, and we will converse, and we will not have accusations of staring and rudeness flying around. It will probably happen right around the time that Nigel invents his time machine.

Words Best Left Unspoken

Language acquisition is, of course, not just about learning to talk. Non-verbal communication is another confusing realm that autistic people must enter if they wish to interact appropriately.

Initially, Nigel’s non-verbal communication skills were limited to how he could make his needs known non-verbally, since he was not functionally verbal until about age 7. He could talk prior to that age, but most of the words that he spoke were echolalic. If he wanted me to get him something out of the refrigerator, he would take hold of my hand and lead me to the refrigerator and put my hand on the door handle. I would have to guess what he wanted, and a wrong guess would be met with a scream. This was the extent of his non-verbal communication at the time.

He progressed to using PECS, both for his expressive and receptive communication, which was a blessing for both of us, reducing the screaming at least while at home (in public, with his extreme sensory issues, the screaming continued). Once he started uttering one-word need-based requests, his use of PECS at home decreased, and then he moved on to two- and three-word combinations. At that point, the concept of non-verbal communication changed from expressive to receptive.

He started making eye contact. It was fleeting, of course, at first, and only reserved for family members and the most familiar of therapists, but it was there. He started to notice and interpret facial expressions, mostly limited to smiles, but gradually he could interpret the more obvious manifestations of sadness and anger. His favorite one to interpret, still to this day, is tiredness with its unmistakable yawn. “Go sleep?” he would say at age 6. Now, at 13, we hear the beautifully correct and appropriate, “Are you tired?” and even “Why are you putting your head on the desk?”

Nigel’s greatest accomplishment with interpreting non-verbal communication still astounds me, and always will. It happened about six months ago, when his NT friend Riley was at our house for a sleepover. Earlier that week, Nigel had seen me taking my daily birth control pill and asked what it was. I told him in simple terms that it prevented babies from forming in my uterus. Riley’s mother had had a baby a year and a half ago, and now Riley was telling us that his mother was going to have another baby. My sixth sense kicked in, or mother’s intuition, and I knew that the wheels were quickly turning in Nigel’s head. I was seated at the other end of the dinner table from him, and I looked at him fiercely, willing him to look at my wide eyes telling him Don’t say it! Don’t say what you’re going to say! And he started to say, “She should’ve –” and abruptly stopped as soon as he saw my face. It was the first time he caught himself before making an inappropriate comment because he had successfully interpreted non-verbal communication! I was so relieved, and equally amazed. Later I talked with him about the fact that I was glad he stopped himself from saying, “She should’ve taken birth control pills!” I told him that would not have been a polite thing to say. “But I don’t like ‘polite,'” he said, which is what he says when he doesn’t understand something’s purpose. At least if he can continue to interpret non-verbal communication (and not just his mother’s), he stands a chance of learning what’s not polite, and avoiding it.