Teen Autism

I’ll bet you have A-Files too. Read all about mine over at Hopeful Parents today.

Sometimes, when you’re the parent of a teen with autism, you have to write letters like this:

Dear [Regional Autism Consultant] and [Nigel's speech therapist],

I hope this finds you both well. Nigel continues to benefit from your social skills class, and I want to thank you both for doing it. I wanted to run something by you that I think would be an important addition to the regular social skills teaching. Today I had a meeting with [his case manager], and she mentioned that a student told her about a situation in which Nigel was being taken advantage of and laughed at. During lunch, a group of students were encouraging Nigel to tickle random people, and they would laugh when he did it. As you might remember, Nigel has been targeted in this manner before, and it always pains me to hear of it.

I would be so grateful if you would work something into the social skills curriculum to help him learn to recognize these sorts of situations when people have fun at his expense by telling him to do something inappropriate. He doesn’t realize that it’s inappropriate or that he could get in trouble for touching other people. He thinks he is making friends this way, but the “friends” are laughing at someone with a developmental disability. They know that Nigel lacks social awareness, and that’s why they target him. They are not innocent little kids anymore. And yes, Nigel has been told before that real friends will not get him to do things that he shouldn’t do and then laugh. But he needs constant reminders from people other than his mother. He needs to be taught how to recognize these sorts of situations. If a random student notices and takes the time to tell a staff member about it, then it’s pretty significant. And I’m sure it’s not the first time, even though it was the first time that was brought to our attention (that I know of).

So I think it would be helpful for Nigel to have some reminders about what’s inappropriate at school, and that if someone tries to get him to do something and they are laughing about it, they probably don’t have his best interests at heart, and they should be avoided. I tell him these things, of course, but I think if he hears it from other adults (or peers who care) and is taught how to recognize those situations (perhaps through roll-play), then he might start to understand.

Thank you so much for your time and the work you do with my son.

Best regards,

Tanya Savko

And it breaks your heart, again and again. You believed that things were going well socially at the high school, that the other kids had matured since middle school, that these things weren’t happening any more. You hoped that no one would be insincere with him at his first dance, and you wonder if they were and your son just doesn’t have the social awareness to realize it.

Sometimes, as the parent of a teen with autism, it hurts. You’ve been advocating for over twelve years since the diagnosis, and you still have to do it. You still have to manage your pain and quell your anger. You have to keep moving, keep doing, keep hoping. You have to keep being the parent of a teen with autism.

And no matter how much you love your son and the wonderful person that he is, no matter how far he’s come and how much he’s achieved and how high your hopes, it still hurts. For both of you.

It used to be, up until less than two years ago, that my favorite time of day was in the evening, when the boys went to bed, and I had an hour or two before my own bedtime. The day was over, and I had a sliver of time to myself to read, meditate, write (if I had the energy), or watch a movie. And it wasn’t just the time to myself that I loved, it was the security in knowing that my children were safe and (usually) well, and that we had made it through another day. All was right in my little corner of the world.

I still love the evenings and the sense of peace and comfort that they bring. But my favorite time of day has changed. It’s now 3:40 PM. That’s my new serenity time.

I get off work at 3:00 and head home, stopping to pick up the mail at our local post office, since I am among many in our small town who do not have mail delivery to our homes. I am usually home around 3:20, alone except for the cats, who rub against my leg to welcome me (or, as I’ve read, to mark territory, but affectionately so). I set my things down and go put on my slippers as part of my little transitional routine. Then I sort and read the mail until 3:30, when Aidan arrives. He comes through the front door, calls out “Hi, Mom,” and I go over to give him a hug and breathe in the scent at the top of his head. Home. One down, one to go.

Usually within ten minutes, by 3:40, Nigel comes through the back door, after he has put his bike away in the shed.  As soon as I hear that door open and shut, I breathe a sigh of relief. The route is less than two miles, but any number of things could go wrong. Once, a few months ago, he had been delayed due to bike problems and called me on his cell to ask me to come and get him. And so, when he wasn’t home by 3:50 one day last week, I thought at first that perhaps it was because of bike trouble again. I waited for the phone to ring, but it didn’t. When the clock struck four, I was out the door. I instructed Aidan to man the phone and to call me on my cell if Nigel called or came home.

I drove his usual route, checking down side streets to see if he had stopped to talk to someone or pet a cat. Then, about a third of the way, I saw him riding toward me (thank God), and I pulled over. He came up to me, breathless, and launched into a monologue about how he’d stayed after school to talk to his new drama teacher about a play that he wanted to write and produce based on Honey, I Shrunk the Kids. He had that dazed, New Obsession look in his eye, and I groaned inwardly. In his present state, he could not fathom that I had been worried, that he should have called. Midway through his prop ideas, I gently cut him off, saying that we needed to get home and he could finish telling me there. “Okay,” he said, and started off. “But take your time! We’re not racing!” I yelled out quickly.

We got home, and as I climbed out of the car, he rode up and started in again about the play, right there in the driveway. “Put your bike away, and let’s go inside to talk about it,” I said gently, but business-like. And he did.

I got in the house, still feeling the uncomfortable effects of the adrenaline, and called out to Aidan that Nigel was back. I collapsed on the couch, and he came inside a moment later. I stood in front of him and put my arms around his unbending frame before he could start talking. “I’m glad you’re home safe,” I said. “I was worried because you were late, and you didn’t call to let me know.”

He got it. “I’m sorry,” he said sincerely. It was one of the rare times he’d said “I’m” in front of “sorry.” He said that he got so excited with talking to his teacher about his ideas for the play that he didn’t think to call. Of course, I’d figured that’s what had happened the moment I first saw his face, lost in a new obsession. I know that look.

He drank some water then, and sat on the couch to finish telling me his ideas. After a few minutes, he got up and announced that he was going to his room to start writing the script. I sat there on my couch that I love, listening to the sounds of my boys happily preoccupied in their rooms. Home. My favorite time of day might have come a little later that day, but there it was. I sat and breathed deeply, enjoying my moment of peace, security, and serenity.

Remember Silly Putty? You could pull it apart slowly, and it would keep stretching and stretching and stretching. But if you tried to pull it apart really fast, it wouldn’t stretch. It would snap.

Sometimes I feel a lot like Silly Putty, trying to stretch to accommodate all of the elements of my life. But I think that the hardest part for me, besides my sons’ father living far away, is being pulled in two directions trying to meet the needs of both of my boys. I feel like I’m just stretching and stretching. Most of the time, I can keep stretching, and I do. But sometimes, too many things that require my attention happen at once, and I reach a breaking point.

Take last weekend, for example. Nearly all day Saturday was spent doing Nigel’s Boy Scout event with recycling Christmas trees. We got home from that, I made dinner, cleaned up after dinner, and started doing some work that was due for a client. I figured I could finish it by Sunday afternoon before heading out to the animal shelter to do the weekly volunteer work that Nigel needs for a Scout requirement. Then we’d get home, I’d make dinner, fill out some paperwork that needed to be done, and that would be the end of the weekend. No down time. I felt really stretched.  

So I was sitting at my computer, working on some spreadsheets, and Aidan walked in to ask me to take him to the mall tomorrow so that he could trade in some old video games and get a new one. I sighed, trying to avoid snapping. I felt like I was being pulled apart too fast. I started to complain about how busy I was, being gone all day at the Scout thing and having work to do, and the animal shelter tomorrow, and more work, and . . . Aidan’s face fell. He started to walk away.

And then it hit me. Again. I do so much for Nigel. He requires so much of my focus and time. And Aidan asks for so little. How could I not do this for him? All I needed to do was stretch a little more, to make a little time for my second son, who so often feels like second fiddle.

“Wait, honey,” I said. “I’ll be able to fit it in. We’ll go right after Nigel and I get back from the animal shelter. And after the mall, we’ll go out to dinner, okay?”

“Okay. Thanks, Mom,” he said, his face brightening some.

And that is what we did. Sunday afternoon, Nigel and I got back from the animal shelter, and Aidan had his bag of old games all ready to go. I changed my clothes for dinner, then we drove to the mall and exchanged Aidan’s games for the new game that he wanted, and he was happy. We went to the restaurant, and Nigel, without prompting, actually thanked the waiter when his plate was set in front of him. That’s twice in one weekend, for anyone keeping track!

And I’m so glad that I stretched myself a little more. It’s often a huge challenge doing this on my own, but it’s worth it to keep stretching. It’s worth it to make sure Aidan knows that he’s also my priority. Fortunately, I’m a lot like Silly Putty. When it snaps, you can easily connect the two ends together again.

“sig·nif·i·cant, adj. : of a noticeably or measurably large amount”

- Merriam-Webster’s Dictionary

Please join me at Hopeful Parents today to see what else that word means to me.

Ed. note: Apologies for the cryptic nature of this post. And thanks for reading it anyway.

There are times when I think it would have been advantageous to have made this an anonymous blog. Times when I wish I could tap into the cathartic quality of blogging, write about what happens, what I struggle with as a parent. But sometimes I can’t. And this is one of those times.

It was discovered this morning that one of my sons committed an infraction against my other son, sight unseen. It was the type of thing to which some people would just say, “Oh, that’s what siblings do,” but that’s not what I say. It was the type of thing where the guilty party could blame it on certain organizational deficits instead of admitting fault. It was the type of thing that, if not stopped now, could easily grow into a problem that would later involve others besides his sibling. And it’s the type of thing that I will not specify because I don’t want to violate his privacy.

Of course, the morning rush is not the time to handle such infractions. Not only that, I needed a plan. What I wish I had was someone to bounce strategies off of, someone to whom I could say, “How do you think we should handle this?” That would entail there being a “we” involved, and since there is not, I somehow got though a busy day at work while bouncing ideas off of myself.  I allowed myself a quick moment of self-pity while checking my e-mail. And then I got my answer - at least part of it. It was the day’s post from Daily OM, and it was exactly what I needed. It was a way for me to start off by telling my son that even if something he does seems insignificant, it’s not. “Everything You Do Matters,” the title said, and the post described how our actions, both positive and negative, cause a ripple effect that spreads to many more people than we can ever realize. I printed it out to read to my son when we got home, and I spent the rest of the day coming up with ways to expand on it.

At home, the plan, which I had gone over in my head all day long, backfired. My son was defensive and vehemently denied doing what he’d been accused of, even in the face of overwhelming evidence, even though I’d approached the subject in a calm, diplomatic manner. I was not pleased. It was bad enough that he had done it, but then to deny it? Not cool. However, in a moment of what could only have been divine inspiration, I told him that we would be spending the next few days doing a certain thing that would either disprove his alibi or vindicate him. (I did not use those words while speaking to him, of course; I reserve all the fancy wording for the blog.) But what I said next was - I think - what made all the difference. I told him, sincerely, that if it turned out that he did not do what he’d been accused of, I would be the first to apologize for not trusting him. And then I left the room.

I sat at my computer, logging back in to do more work. I tried not to fume. I tried to let it go. The confrontation was over; I had done my parental best. But what if this was the beginning of a terrible habit? What if, in not wanting to be a Gestapo parent, I hadn’t done enough to stop it? Parental guilt gets me either way. I sat there in its grip, unable to reason, unable to see past the moment.

Fifteen minutes later, my son walked into my office. He sat on the floor for a few minutes, petting the cats and sighing audibly. “Are you all right?” I asked, still going for diplomacy. And then, I heard the magic words. “I have something to tell you. I’m just afraid you’ll be mad at me.”

Relief washed over me as I realized that maybe, just maybe, I’m getting through to him. We talked, and it was good. We talked about what it means to have integrity. We talked about doing the right thing. We both shed a few tears. Later, he apologized to his brother, and although I didn’t hear the exchange, I was told separately by both parties that it was positive. You know that saying about parenting being the toughest job you’ll ever love? Every day is a testament to how true that is. And if your wording is vague enough, you can blog about it anyway.