Author Archives: Tanya Savko

About Tanya Savko

My name is Tanya Savko. I am a writer, teacher, and mother of two sons. The "writer" and "mother" elements have been part of my life for quite some time, but the "teacher" title is new this year. My older son, Nigel, was diagnosed with autism at age three, in 1997. Between the ages of three and six he received intensive ABA-based therapy, which I believe was essential to how well he is able to function today. Unfortunately, negative peer interaction in middle school has made it necessary for me to take the leap to homeschooling him. We began this journey in February, 2008. The Teen Autism blog is a way to explore and understand whatever happens next. My younger son, Aidan, is eleven. He is an avid gamer and wants to design video games when he grows up. He is imaginative, sensitive, and compassionate. His Kindergarten teacher remarked how Aidan would always be the first to comfort his classmates if they were hurt or upset. He has mentioned to me several times that he feels like he is the older brother, always looking out for Nigel. I am truly blessed with both of them. I decided at the age of four that I wanted to write books. I have written ever since (although I didn't limit myself to books). My poetry and articles about autism have been featured in several publications, and my novel about raising a child with autism is scheduled to be published later this year. I decided to start the Teen Autism blog as a way to connect with other parents of autistic teens, to gain insight from those who have been through the teen years, as well as to offer encouragement to those just entering them. I welcome your comments, suggestions, and questions. It's good to know we're not alone on this journey.

The Talk

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Usually when parents think of “the talk,” we think of how to approach that first time that we tell our kids about sex – and all the other ensuing (hopefully much later) talks on the subject. Or the talk about drugs and alcohol. The talk about the importance of not stealing even if something “only” costs 25 cents. So many talks we parents have with our kids.

Add to that all the other difficult talks we have to have with our special needs kids. The talk about what autism is, and that he has it, or telling his brother about it. The talk about how sometimes kids are not really your friends if they try to get you to do something. Or if they say that you’re “entertaining.”  And then, when the child with whom I’d wondered if I’d ever have a conversation more involved than “Would you like a sandwich or eggs for dinner?” progresses to the point that he tells me when he’s turning 15 that he would like to get his driver’s permit, I realize that I have to have yet another difficult “talk.” Because as far as he’s come, as glad as I am that when he was six or seven he could actually respond that he wanted eggs for dinner, he’s not ready to drive. No way. And it’s not because I’m not ready to let him drive. It’s because he’s still far too distractible, impatient about traffic (in a scary way), and lacking judgment. Sure, many teens are that way. But with him it’s exponential. And letting him drive now would not be good judgment on my part. In fact, it would be insanely irresponsible.

But he really wants to drive and actually started talking about it when he was twelve. So this talk has been looming in the back of my mind for three years. And I’ve got to let him down gently. I’ve got to figure out a way to tell him that there’s yet another thing that his autism is going to affect, right when he’s gotten to a point where he’s started to accept it.

So I decide to do it during a time when he’s relaxed but somewhat engaged in an activity that he enjoys. And when it’s just the two of us carving pumpkins on a Saturday afternoon (since Adam can’t handle the smell and doesn’t participate), I take a deep breath and dive in. I dance around the subject by casually mentioning some of the positive ways in which autism affects him  (learning to read early, being good with maps and remembering facts), and then I mention some of the difficult aspects (delay with learning to talk, his sensitive hearing, regulating strong emotions, etc.). I forge ahead and say that some autistic people need to wait a few years before they’re ready to start driving (as well as some people who don’t have autism).

“But I don’t think I need to wait,” he says, his voice calm but purposeful as he carefully saws off the top of his pumpkin. “I think I’m ready for my permit.”

I gently remind him of how impatient he gets with traffic and that his response indicates that he needs to work on that before he can start learning to drive. I tell him that being good with machines and having the ability to operate the vehicle (his argument of readiness) is not the most important element of driving. That he needs responsibility, awareness, and judgment to safely drive a car.

He is still eerily calm. Is he actually understanding? I wonder, I hope. He quietly scoops out pumpkin seeds, seeming to take all of this in, although I can feel his disappointment. Then he stops briefly and asks, “When?”

Gulp. I should have expected that question to be part of the equation. No stranger to being put on the spot, I quickly come up with a plan. I tell him that he needs to demonstrate three things to me whenever we’re in the car – patience with traffic, focus on (my) driving and not being distracted, and awareness of other vehicles, drivers, and pedestrians. I tell him that if he does all of those things in the next year, then when he’s sixteen we’ll discuss enrolling him in a driving class. I’m not convinced that he’ll be ready in a year. But I can’t dash his hopes.

“Does that sound good to you?” I ask. “Are you okay with that?”

“Yes. I’m okay with that,” he says in his usual flat voice. He won’t make eye contact, but he is calm, accepting. I praise him for his maturity, tell him that this is the first step in demonstrating patience and responsibility. For years now, he’s been aware of the limitations due to his autism, but he’s learned to accept it and work with it. He may not be ready to drive in a year, but someday, he will. Autism will often delay him, as it did with talking and so many other things, but it won’t stop him. This I know.

* Neil’s is the happy one on the left

Thoughts on My 15th B-Day

This is Neil. I am 15 today and I have big plans for my future. I want to be the first of my family to be in space and on the moon. I want to be the first human being to set foot on Mars.

But for my birthday party plans, I’m planning to invite all 3 of my bestest friends for a sleepover party. For Halloween I’m going to be Ash from The Evil Dead Trilogy, the Ash with the chainsaw hand and the boomstick.

The things I like and dislike about getting older are these two things: one positive effect of it is I’m getting closer to getting to drive a car. The negative effect of getting older is that I have to discontinue trick-or-treating on Halloween.

 

Well, I’m going to watch Edgar Rice Borrough’s At The Earth’s Core. Bye for now.

The Funk

When I was in college, my roommates and I hosted a P-Funk party that people still talk about. We dressed up and wore wigs. We played records (yes, records) and really got down. But that’s not the kind of funk I’m talking about now. A few months ago, my two teen boys invited some friends over (more teen boys) for a sleepover, and the next morning, as they slept and I walked into the game room to survey the damage (almost as wild as my P-Funk party), I was hit with a wall of funk. Teenage-boy funk. Sweat, dirty socks, and (um, how to put this delicately?) expelled-air kind of funk.

But there’s another kind of funk I’m in now. You know the kind, I’m sure – things are going mostly okay, you’re working, taking care of the kids and the household, but something doesn’t feel right. And in spite of all that’s good in your life, in spite of counting your blessings, it’s still hard. Right – nobody said life was supposed to be easy. But is it supposed to be hard?

No, I tell myself. I’m just in a funk. I’m at a crossroads with my finished-but-still-unpublished book, unfulfilled with my day job, feeling like I’m between treading water and sometimes barely keeping my head above it. So when Neil, who turns 15 next week, told me last night that his case manager at school said to ask me if he’s going to be getting his driver’s permit (what?!), I felt like I’d been hit by a wall of water.

I didn’t know this was coming, although really, I did. I just didn’t know it would be this week. But what shocks me more is that I was just talking about this with my good friend Carrie less than a week ago. (Got Carrie? If not, head on over there immediately. You’ll be glad you did.) I was telling her how I didn’t know how to tell my son that he’s not ready to drive yet, in spite of how much he wants to. I told her how I’ve been putting it off, not sure how to approach it, foolishly thinking I still had some time. And then, something amazing happened, as it usually does when we’re with someone who listens and understands. Out of my mouth tumbled, “Maybe he just needs to hear it from me” or something along those lines. And I knew that I had to have the talk with him soon. I just didn’t get it together quick enough. So, I copped out. Last night, as I had three different dinners cooking at once while he stood there expectantly, I said, “Maybe in a few months.” I just couldn’t do it right then.

Because last night my other son needed me more. Last night Adam was still recuperating from a vaccine reaction. Yes, I said it. I’m going there. He had his 13-year physical two days ago (a couple months late, but oh well), and the nurse spouted off at least four different vaccinations or boosters that he “needed.” We decided to go with one – the meningitis. It was the one that I felt strongest about, so we took it. Then I dropped him back off at school and I went back to work. In less than an hour, Adam told me later, his arm was numb, and he had a headache and abdominal pains. My poor sweet boy didn’t want to disturb me at work, so he suffered through it at school and told me when he got home. He slept badly that night, still experiencing the same problems. He stayed home from school the next day, and by that evening (last night), he was feeling better (although his arm still felt strange).

I went in Adam’s room to talk to him before he went to sleep, as I do every night. I’d had an epiphany, and I wanted to share it with him. My younger son has sensory processing disorder – gustatory, olfactory, tactile, proprioceptive, and vestibular (worse than Neil in all of these areas). And when Adam was a baby, he cried almost constantly – but it didn’t start until he was two months old. That was when he received his first round of what turned out to be no less than 16 vaccinations by the age of 18 months. (By comparison, I’d received 6 vaccinations by the time I was 18 months.)  Adam knows that he was a crier. He’s heard the war stories. But, as I told him last night, now we know why. I think that it took months for his little body to assimilate the vaccines, and by the time he got through one round, it was time for another, and then another. His body was flooded, overwhelmed. And I believe that experience contributed to his sensory processing disorder.

Maybe I’m reaching. Maybe it’s my funk. I don’t think vaccines are bad. But once I made that connection with Adam’s babyhood, I felt like I’d solved a 13-year mystery. And Adam agreed with me; both of us achieved some closure. As I left his room, I blew him kisses from the doorway, as I do every night. Often he blows them back to me. Last night, I shut the door and stood in the hallway a moment. I heard him continue to blow kisses to me even after the door was shut.

I can only hope that when I approach Neil about the driving issue that I can word it in such a way that he can understand.  I don’t want him to see it as a punishment, as a wall of water crashing down on him. I hope that what I discussed with Carrie turns out to be right – that he just needs me to tell him. Maybe once I talk with him and get it all out on the table, I’ll feel better. Free, even. Free of the funk.

Image credit: Oskar Mellemsether

A Drop in the Bucket

Remember that post I wrote shortly before school started – the one about the three girls I had talked to one afternoon? No? That’s okay. Go ahead and read it here. We have time. And then read this…

Over the past twelve years, I’ve talked to a great number of people about autism. I’ve talked to relatives, friends, neighbors, teachers, and complete strangers. I’ve talked to parents at playgrounds, ice cream store employees, grocery checkers, and kids at bus stops. I’ve even gone to a different country to talk about autism. And regardless of where or how or to whom, I always wonder if I’ve said too much, if I haven’t said enough, or if what I’ve said made any difference.

Sometimes it does when I least expect it.

About six weeks ago, my son started high school with a self-imposed vow to ride his bike to and from school every day. He had been practicing around the neighborhood for a few years, and I believed he was ready to do it, even though the idea made my heart race. The day before school started, we did a dry run with him riding his bike to school and me following in my car, about a hundred yards behind. In a previous post, I described how I saw him ride past three teenage girls, and how I saw the girls mimic him with exaggerated gestures, laughing. I quelled my anger and made a split-second decision to pull up to them, roll down the window, and politely, diplomatically let them know that my son has autism. The girls seemed receptive, albeit embarrassed. I didn’t really say much, and I wasn’t sure what good it would do. In fact, I just thought, Three people – a drop in the bucket. But I also realized that getting those three people on our side might make even a slight difference.

Weeks pass. Things are mostly okay at school and the bike-riding is going well, to my ultimate relief. I come home from work on a hectic Wednesday and rush around to get a few things done before my two boys get home from school. Minutes later, my younger son waltzes through the front door, his bus on time. He hurries to remove his confining shoes and greets me. He goes to the kitchen to get a snack. I look at the shed in the backyard to see if my firstborn is putting his bike away yet, since the boys usually get home within minutes of each other. Not yet. I sit on the couch and pretend to nonchalantly read a magazine. Fifteen minutes pass, and my anxiety continues to rise. I get up and decide to go look for him. I jump as the phone rings, pounce on it. Thank God, thank God, it is my son. He has remembered to use the new pre-paid cell phone that is in his backpack. He tells me in his flat voice that there is a problem with his bike. “Did a car hit you?” I gasp.

“No. The rear tube and tire are falling off. Could you come and pick me up?”

Oh, wonderful words. Beautiful sentence structure. Impressive problem-solving. Blessed safety!

“Yes, yes, of course. Where are you?”

“In front of the elementary school.”

“Okay, I’m getting in the car right now. I’ll be there in just a few minutes.”

A block from the elementary school, I see him, walking his bike while holding the handle bars. And then I realize that there is a girl walking beside him. I do not know her name, but I instantly recognize her. She is one of the three girls. Yes. I almost don’t believe it. Awareness in action.

I turn up the block before them and park the car. I get out, wanting to thank her for walking with my son, but as soon as she sees my car, she immediately gets on her cell phone and crosses the street. I get the awkward vibe – she wants to help, but she is still a little embarrassed by her previous behavior. I don’t want to make her feel uncomfortable, so I let it go. I thank her in my mind, send her the appreciation vibe.

I open up the back of my small SUV, and my son walks over with his bike. I praise him for remembering to call me, and together we remove one of the bike’s wheels so that we can fit it in the car. Afterward, we get in and I ask him if the girl had been walking with him long. “Not too long,” he says. “But she was nice.”

Oh, yes. When you least expect it. Even drops in the bucket make a difference.

Time for a Change

Remember when the autism ribbon magnets came out? I do. I don’t recall how many years ago that was, but I got some right away, gave a few to relatives, kept a couple. We didn’t really think about the puzzle message back then, the “I am not a puzzle” outlook. And I totally get that; I do. But to me, it’s not the person that’s puzzling. I’m sure most parents feel that way. And definitely some kids.

Anyway, even though I always thought that the design was too busy and actually detracted from the message, I still sported one on the back of my car for several years, along with an “I love a person with autism” bumper sticker. As time went on, the bumper sticker peeled and faded considerably, but the magnet held strong. Years of car washes, storms, uncovered parking, and road trips (we take a lot of those) did not affect it. That thing was literally baked on.

And then, two months ago, I went through the car wash, the same car wash I’ve been going through for years, and the magnet came off. I went to a store after the car wash, and when I came back to the car in the parking lot, I noticed that the magnet was gone. Just a little black piece of it was left behind, still baked on.  I stood there for a moment, dejected. I always like to look for those whenever I’m driving and get a feeling of pride and a little excitement when I see one. And now mine is gone. Sure, I can easily get another one, but it won’t be my magnet, the one that has gone with us everywhere for the past seven years or something like that. I didn’t want to replace it with another one.

So I decided it was time for something new. Finally motivated, I got going on something that I’ve been thinking about doing for a while. I did some looking, tried out a few designs, and TA-DAH! I proudly present to you the all-new, puzzle-free Teen Autism bumper sticker!

Seeing my car without the iconic ribbon magnet took some getting used to. But I must admit that I like my cool new sticker even better!

After the Fixing

Long-time readers of this blog know that Neil unfortunately has a history of being bullied (click here and scroll down). So far, at his new school, he has not encountered any bullying or harassment, which is a welcome relief for both of us. But I am not one to sit back and take things for granted. No, not I. I am a planner, a preparer. A what-if-it-happens-againer.

And so, last week I attended a seminar on bullying intervention strategies hosted by ORPTI. They are a fantastic organization that presents parent training workshops throughout the state of Oregon. Last year, I attended their incredibly helpful and informative Autism & Puberty seminar. Other workshop topics include IEPs, early intervention, transitions, behavior, and many more. I highly encourage any Oregon residents to sign up for ORPTI’s email mailing list, and you will receive notifications of upcoming workshops in your area, which is exactly how I found out about the one on bullying.

Being the seasoned parent of a child who’s experienced every type of bullying known to bullydom, the information in the first half of the seminar was not new to me. But parents of younger special needs kids would definitely benefit from the topics that had been presented, including how to recognize the different types of bullying, the difference between teasing and bullying and when teasing is not teasing, the myths surrounding bullying, the causes, how to help your child to not be a target, how to talk to your child about bullying, school policies on bullying, dealing with parent reactions to bullying, how to decide appropriate strategies to address bullying, and being involved at school. These are all things that I have years of experience in doing, unfortunately.

But what I don’t know enough about – and the main reason why I attended this seminar – is what to do when you’ve tried every single strategy and your child is still being bullied and the school is doing nothing about it. I can tell you this – it does not feel good. That much I know. I’ve been there. Like a cornered cat, I hissed for a while and then summoned all my strength and jumped the wall behind me to get out of that situation, and I took my son with me. That was when we started homeschooling, which was almost two years ago. I knew that it would be temporary (thank God – as a single parent, my bank account couldn’t take it for very long), but it was what we both needed. My son begged for help, I could no longer fight the school, and I didn’t know what else to do. Now, after attending the bullying seminar, I do.

In my opinion, schools focus far too much on “fixing” the ASD kid and not enough, if any, on the bullies. They put the ASD kids in social skills class, role-play with them, and teach them how to respond when bullied. But do they teach disability awareness to their peers? They teach Internet safety, birth control, recycling, and other non-academic subjects. So why not awareness? I kept asking and pleading for the school to teach my son’s peers about autism, the Regional Autism Consultant was more than willing to do it, and the school never scheduled it. At the seminar I attended last week, I learned how to make that happen: you write it into the IEP. “Where?” I asked, wondering why I hadn’t thought of that before. In the “related services” section. Just like that.

Of course, it’s rarely that simple. So I was very glad when the workshop presented some helpful forms on taking things to the next level – notifying school administrators and then the district offices, higher if you need to. I found the online versions of information that all special needs parents should have. Click here for 10 Steps to Notifying School Administrators of Harassment Concerns, scroll down to the Handouts section, and click “Notifying School Administrators” to get the PDF. For another helpful PDF on disabilities and harassment, click here and scroll down to the Special Education section. Click “What Can You Do If Your Child with a Disability Is Being Harassed by Other Students?” for the PDF.

The bottom line is that when bullying is targeted at someone with a disability, it’s not only mean, it’s discrimination. And the more we know about what we can do, the better we will be able to advocate for our kids.

My Undiagnosed PTSD

I have read and heard it said that we all have sensory issues to some degree. Whether you cut the tags out of your clothing, get a headache from fluorescent lights, cringe at the sound of a drill, or even still get carsick, you’re exhibiting a mild symptom of Sensory Processing Disorder.

But sometimes it’s not so mild. Sometimes your senses of taste, smell, and tactile processing are so affected that you can only eat a few foods. Sometimes your hearing is so sensitive that it’s difficult for you to be in a classroom and filter everyone else’s sounds – chairs scraping, pencils writing, kids talking, teachers raising their voices, bells ringing. And forget trying to function if the fire alarm goes off. Forget being able to filter a blender, drill, leaf blower, or air hand drier in a restroom. It’s enough to make you scream. And quite often, because you can’t talk and even if you knew how to cover your ears, it wouldn’t be enough, you scream. You scream and you run. And if you can’t run, you writhe on the floor, screaming in agony.

And if you’re a parent of a child who does that, you become ultra-aware of your child’s triggers, or possible triggers. This is just one of the many reasons why recent studies (sorry -can’t seem to find the link right now) have indicated that some parents of children with autism have PTSD, from years of being hyper-vigilant, stressed, and exhausted, among other reasons. You try to second-guess every situation. You instantly notice the echo-effect or noise level of every environment and hope that your child is okay with it. You cringe when you hear a loud mechanical noise. You still check for air hand dryers every time you enter a restroom, even if your child is not with you.

In many cases, as the child gets older, they learn how to filter the sounds that used to be so agonizing to them. Sometimes, they get to a point where they only have to briefly plug their ears if a sound bothers them, instead of screaming and bolting in a panic. There is a huge reprieve as the parents feel safe to go out in public again.

But some parents – and I am one of them – are still affected by the experience of having a child who screamed and bolted and writhed on the floor. Even though my son is almost fifteen and it’s been several years since he reacted violently to a sensory issue, and even though I consciously know that he is fine now and would probably not have those reactions again, I still have these subconscious fears. Or maybe they’re psychosomatic sensory issues. When we are in public and a mechanical device or appliance goes off, it’s a trigger for me. Every sound is magnified. I almost break into a cold sweat. My adrenaline starts pumping and my pulse quickens. I become hyper-alert; I instantly look at my son. Often times, the sound doesn’t appear to have fazed him. Or, if he noticed it, he merely covered his ears. Sometimes he might make a comment like “That was pretty loud.” But that’s it. He no longer screams or bolts, and he hasn’t for a long time.

On some level, it’s like when I was in college and waited tables for my job. For years afterward, whenever I went out to eat at a restaurant, I couldn’t relax. I was constantly aware of the wait staff, how many tables they had, how they hurried. I would feel nervous when I would see food sitting in the pass-through window, waiting to be brought out to the tables, like I should get up and do it. If someone dropped or broke something, my adrenaline would race through me. For years, even after I no longer waited tables, I didn’t go out to eat much because I just couldn’t enjoy myself.

It’s been about sixteen years since I waited tables. And about a year ago, I was out a restaurant, and I noticed that I was relaxed. I wasn’t watching the wait staff. I wasn’t aware of the food coming out. I didn’t think about timing. I didn’t flinch when somebody dropped something. I realized that I was enjoying myself. So. Fifteen years. Fifteen years to get over the “trauma” of waiting tables for four years.

I don’t remember the last time that my son reacted violently to a sensory issue. I remember many of the individual instances, but not all. I’m sure that the times I’ve forgotten are those that I’ve mentally blocked, as a defense mechanism. But I can guess that it’s been about five or six years since we’ve dealt with a sensory meltdown. Since then, we’ve had meltdowns for other reasons, of course, but not sensory-related. So if my track record holds, I’ll need another nine or ten years to get over the experience of having a screaming/bolting/writhing child.

And while I know that this is nothing compared to the PTSD inflicted on many of those who serve our country, it is difficult for me. Time does heal. I just wish there was something I could do in the meantime.

Image credit:  Andrew Peat

As Political As We Get

The Scene: Medium-sized kitchen in a usually non-political suburban family home. A mother and her two teenage sons are cleaning up after dinner. The sons clear the table as the mother loads the dishwasher.  The mother has noticed that this is often the time when out-of-the-blue questions are asked or odd comments are made. Why? she wonders. Are their full stomachs causing their neurons to fire and their synapses to connect? Is it their minimal effort to humor their mother and engage in a family conversation before retiring to their rooms for the night? Or are they just trying to distract themselves from the fact that they are doing a household chore?

Younger son: Who’s that guy nobody likes who made a bunch of money off the Iraq war?

Mother (stalling, not sure where her son is going with this):  Umm . . .

Older son: George Bush?

Mother (turns head away, stifles a laugh):  Well, I –

Younger son: No, that other guy – Shaney?

Mother: Cheney.

Both sons in unison: Yeah, that guy.

Mother (toning down her amusement):  What about him?

Younger son: I saw this thing on one of those comedy shows and this guy who was being him had this horrible, evil laugh.

Mother: Hmm. I never heard that before.

Older son: Well, I think they’re both war profiteers.

Mother: Where did you learn about war profiteering?

Older son: Wikipedia.

 

Image credit: Andrea Kratzenberg

Project Linus

When I was a child, I had a security blanket. It was hand-crocheted by my aunt when I was a baby, and I had it (or remnants of it) up until I was 19. It was bamboo green with large, loopy stitches that I could squeeze my fingers into. I happily scrunched it and clutched it every night of my life until there were literally just a few twisted threads left of it.

I figured that my own children would also have their own security blankets, but they, doing their own thing from the beginning, preferred stuffed animals as their security items. I can certainly understand the allure of stuffed animals, having had many myself while growing up. I’m sure many others have as well – teddy bears or favorite dolls. Tigger, in Neil’s case.

But there’s something so universally comforting about a blanket. Project Linus began in 1995 after Karen Loucks was inspired to make blankets for her local children’s cancer center. It has since expanded greatly, with 405 chapters nationwide. Volunteers give handmade blankets to various facilities and organizations for children who are seriously ill, traumatized, or otherwise in need.

And I’m very excited to say that the “otherwise in need” part now includes weighted blankets for children with Sensory Processing Disorder, including those on the autism spectrum.  Many local chapters are now featuring special handmade blankets with Velcro pockets, which have folded remnants of fabric placed inside to provide the weight. The fabric remnants are removable so that you can easily wash the blanket. You can also add more fabric remnants into the Velcro pockets if your child needs more weight in the blanket. These handmade weighted blankets are amazing works of love. My local chapter generously offered to donate weighted blankets to AutismCare Nepal, where I helped with the awareness workshop this past July. Thank you, Project Linus!

Click here to find a Project Linus chapter near you.

Image credit: Bethany Carlson 

One Good Thing

“How old was I when I started to talk?” Neil asked me one day last week as we drove to the grocery store.

“You were five when you started,” I told him. “But it took several years of learning before you could talk as well as you can now.” I waited for more questions, but that was all he seemed to want to know at the moment. I asked him if he could remember how it was for him before he could talk, if he remembered what it was like when his hearing was so sensitive that many sounds were painful to him, and he said no. “I don’t remember those days.”

But the fact that he talks now, and that he goes online to watch YouTube videos, makes me worry that someday he might stumble across the “I Am Autism” video. And since he is aware of the fact that his parents separated within a year of his autism diagnosis, and then divorced, how will he feel when he hears the ominous voice saying, ” . . . I will make sure that your marriage fails“? His self-esteem is fragile enough, and his own acceptance of his autism has been difficult at best. This video would destroy any gains he might have made. I couldn’t stand for that. Nor do I ever want him to feel responsible for his parents’ divorce.

So tonight, while relaxing on the couch, I gently broach the subject by asking him if he’d ever seen any videos about autism. He tells me that he hasn’t looked, and I say that’s fine. Then I describe the “I Am Autism” video. I tell him that it takes the challenging and difficult aspects of autism and talks about them in a threatening tone. That it blames divorce on autism.

Neil says, “Probably the people who think that are just insecure.”

“Yes, Neil,” I say, stunned.  “I think you’re absolutely right.” Where did that come from? How could he instinctively know that? His keen, sensible awareness shocks me. But I have to continue. “I just want to make sure that you would never think that your autism was the cause of your dad’s and my divorce.”

“I don’t,” he states.

“That’s good,” I say. “Because your autism had nothing to do with the divorce.” And then, because we seem to be on a roll, I go on. “I don’t want your self-esteem to suffer because of videos like that. Autism is challenging and difficult sometimes, as you know, but it’s part of your personality and what makes you so unique. But I know sometimes it’s hard for you to accept it. I remember a year or two ago, you would get upset sometimes and say that you hated the autism and wanted to rip it out of your head – ”

“Well, that was just a phase,” Neil interjects.

“You mean you don’t feel that way anymore?”

“No. I feel fine about it now.”

I reach over to hug him, and he stiffly accepts. “I’m so glad to hear that,” I tell him, my voice catching. For years, autism had caused self-loathing for my son. Maybe something like that should have been mentioned in the video. Maybe it should have been mentioned that autism is not just a struggle for the family members. It’s an even bigger struggle for the ones who experience it. Yet they continue to find ways to work with their autism, not against it.

I know that we still have a long way to go. I know that the social issues are going to be a continuing source of strife for my son, just as the sensory issues and language deficit used to be. But there’s one huge thing in place that’s going to help with that – his self-esteem. And that’s one good thing about the “I Am Autism” video – it was the catalyst for an amazing conversation with my son. Not only do I feel better knowing that he doesn’t blame himself for his parents’ divorce,  but he revealed to me that he has accepted his autism. He no longer feels that it makes him defective. He knows that it makes him different, and he’s okay with that. I feel fine about it now, he says.

The air in our home is not the same tonight. A threshold has been crossed, a truce declared. There is a calmness I don’t recall feeling before. A new ease. Contentment.

I smile, remembering. “Just a phase” he said.  – Oh, how I love him.