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.

Questions

The Scene:  Interior of suburban family home. A mother, exhausted from just another regular day, collapses on the couch in her living room. She has just completed her responsibilities for the evening, taken a shower, and dried her hair. Alone, looking forward to some time to herself, she takes a deep breath and picks up a book that she hadn’t been able to get back to for several days. A minute later, one of her teenage sons opens the door of his room and walks down the hallway. He stands at the entrance of the living room, waiting for his mother’s attention. She turns her head to look at him, thinking that he’s going to announce some historical or scientific fact that he has just discovered. Or that he’s going to remind her once again about the Goonies 25th Anniversary Event that he wants to attend the following month, in a city four hundred miles away. Or that he’s going to announce that he has to go to the bathroom.  His tone is serious as he begins talking.

Teen son:  My path is not out here [gestures to indicate the area in front of him], but in here [lays his fist over his chest and pauses before continuing.] Even if I find answers at that school in L.A., I will still have questions.

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

Announcing: Slip

Do you remember the first thing you thought you wanted to be when you grew up? When I was four years old I decided that I wanted to be a writer. I could not yet read independently, but I so loved the books that were read to me that I wanted to write my own. I wanted to contribute to the universe of stories that enveloped me, entertained me, influenced me, and later, sustained me. I wanted to create worlds with words. And although I could not verbalize this at age four, I wanted to tap in. I wanted to be a part of the magic.

And so, at age five, I wrote my first book, illustrated it, and “published” it. I took a piece of cardboard from one of my father’s shirt packages and designed and bound my book with a cover. I even gave it a spine (although I didn’t know that’s what it was called). My accomplishment spurred me on, and I wrote more stories, “published” more books. I started a series about a mouse with a puffy hat and her animal friends. In sixth grade I wrote a novella about a mystery in my classroom. One of my friends illustrated it, my mother typed it, and my father took it to his work and had several copies printed and spiral bound. I just loved creating books. I continued to write more stories throughout high school and college, and then I had children and set my fiction writing aside. And although my boys are wonderful beings who completely enhanced my life, there was a hole where my writing had been.

So, five years ago I decided to follow the old adage “write what you know” and wrote a novel about a single parent raising two children, one with autism. It went through many drafts, was edited by a complete stranger who knew nothing about autism, or me, or being a single parent, and went through several more drafts. At no point had I attempted to solicit an agent. It’s not that I have anything against agents or the publishing industry! Definitely not. It’s just that that avenue was not this book’s destiny. This book was to be the culmination of what I dearly loved to do in childhood – write and publish my own books.

I still love to create worlds with words. And now, I’m thrilled to announce that my first novel, Slip, has been published! It’s available to order on Amazon, although they seem to be having trouble keeping it in stock (!) It’s also available directly from my publishing company: http://kovapublishing.com/books/

There’s a quote by James Allen that I read on the back of a Celestial Seasonings tea box years ago: You will always gravitate towards that which you secretly most love. And I’m happy to say that I’m still gravitating, still loving, still writing. I’m still tapping in.

A Shirt of His Own

Last April I had a bunch of Autism Awareness Month announcements that I posted periodically throughout the month. I had been contacted by several agencies and individuals requesting that I share their information with my readers, and I was glad to oblige. This year, for whatever reason, I only received a couple of requests. So without further ado, and before the month is over, I’d like to highlight a company that I’m sure you’re all familiar with.

When I last wrote about the autism T-shirts at CafePress, I mentioned the “Autistic and Proud” shirt that I saw there, hoping that someday Neil would want to wear it, because I want him to be proud of who he is. At the time, he was pretty down on the subject of autism – “the A-word,” he called it – and certainly would not have donned a shirt advertising it. But in recent months he has been feeling better about his autism, his “difference,” he calls it, and so last week I showed him the shirts and asked him if there were any he liked. He immediately chose this one:

It says “Wish you could see the world through my eyes.” And I thought, Yes. That’s the one. It’s perfect for him.

Taking the Evening Off

You know how it is. When you have a child with special needs and you dare to venture out in public, you often get stared at, sometimes judged. You know what people are thinking because occasionally they say it out loud. “Somebody needs a spanking!” “Can’t you control your child?” “You shouldn’t have him out in public, disturbing others.” I’ve heard it all. And believe me, it got to a point where I just stayed home, other than the mad dash to the grocery store, when I needed something and there was no one to watch my boys, so I took them with me. And why bother with restaurants? My older son’s sensory issues were so extreme that he would writhe on the floor in agony, wailing “go” every few minutes. It was one of the only words he could say at age five.

Time passed, and we dared to venture out a little more. After years of intensive therapy, my son’s sensory issues had become more manageable. But only for a limited time, of course. After ten or fifteen minutes in a restaurant, he needed to crawl under the table for relief. This does not look good at any age, but it’s really frowned upon by age twelve. And although my son had eventually learned to talk, he still didn’t understand the social expectation of thanking the wait staff when they bring you something in a restaurant. I would always model the appropriate response, and at some point, my son started parroting “thank you” when prompted. Almost every day, in various situations, I would need to prompt him. After a while, after the thousandth time, I thought it would always be that way.

Then one day not too long ago, at the age of fifteen, my son said his first unprompted thank you when someone had waited on him. I was happy, of course, but I figured it was an isolated incident. I figured that we’d go right back to the prompting routine that had been in place for so many years, that it was a crutch for him. You see, even when my parenting is not being openly criticized by others, I criticize it myself. You know how it is.

Soon after that day, we went to a restaurant. I sat in awe as my sons tried to converse. There was no wailing, no writhing on the floor. No crawling under the table. No going up to other tables and repeating a line from whatever movie had been watched earlier in the day. And when a plate of food was placed in front of my older son, he said Thank you. Completely unprompted. And I allowed myself to entertain the notion that maybe all the years of prompting had not been a crutch. It had been what he needed in order to learn what was socially acceptable, what was expected of him. It just took him a really long time to get it down.

And now, he’s got it down. Last week, we went out to dinner at a restaurant that we’d gone to periodically over the years, once my son had gotten to a point where he no longer wailed and writhed on the floor. In the past, he’d crawled under the table many times, he’d gotten up and walked all around, he’d had to go outside for sensory breaks. He’d never acknowledged the waiters. But this time was different. This time it was like autism took the evening off.  

I know that’s not how it is for my son. Even on the infrequent occasions when things seem effortless, when things flow seamlessly, he is hard at work – processing, filtering, anticipating, regulating. Autism is always with him. But that evening, at dinner, he was flawless. He placed his order like a pro, he conversed, he joked with the waiter, he thanked him – unprompted – three separate times (!), he politely and discreetly asked where the restroom was and returned to the table afterward without wandering. It was nothing short of amazing, and perfect for the occasion – celebrating the publication of my book. For the first time ever in a restaurant, we were able to stay for dessert, and I savored every moment.

But the real treat, the best moment of all, was when the waiter brought us the check at the end. “I just wanted to tell you how well-mannered your sons are,” he said to me. Of course, all parents love to hear that. They smile and say thank you; they’ve probably heard it before. But I never had. And my face probably looked strange to him as I said, “Thank you very much,” while trying not to cry. All those years and years of stares and judgment, writhing and wailing and crawling under tables are finally behind us. Not to mention the years of incessant prompting, wondering why I bothered. Now I have my answer.

And I don’t think that waiter will ever know how much his words meant to me.

 

Image credit:  Aeyvi Poe

Nothing I Wouldn’t Do

When Neil was diagnosed with autism in 1997, his father and I immediately enrolled him in an ABA-based program that we were fortunate enough to have access to all those years ago. We hadn’t even heard of ABA. But we were steered in that direction by the therapists, teachers, and autism consultants who had identified him, and we went with it. We were surprised to learn of the intensive nature of the program – thirty hours a week with two weekly home visits. At that time we were living at poverty level, so the state paid the staggering costs of the therapy our nonverbal son so desperately needed, and we were grateful.

But had we been faced with footing the bill ourselves, we would have moved heaven and earth to do so. As it was, I went back to work shortly after the diagnosis. My then-husband worked evenings and weekends while I worked weekdays. Even with our nearly opposite work schedules, we still had some crossover time when we both needed to be at work. Neil could not be put in daycare due to the severity of his autism at the time. We tried a few places and were turned down. There was also Adam, who was eighteen months old then. My father had recently retired and offered to babysit a few afternoons a week to fill in the gaps, and I am forever grateful for that. My boss allowed me to leave work early when needed, and I am equally grateful to her. We made a lot of sacrifices and relied on the assistance and understanding of those close to us to get through those early years.

At some point, we noticed with dread that Adam had strong sensory issues and a delay in language development and enrolled him in a therapy program similar to Neil’s, minus the ABA component. Having two special-needs children with all of their therapies, doctor appointments, teacher and specialist meetings, and juggling work and, ultimately, single parenting was painful, especially when their father moved 700 miles away. But I did what I had to.  And I would do it all again. There is nothing I wouldn’t do for my boys.

And I still do. When Neil was terribly bullied at his middle school two years ago and the administration would not, as I requested, talk to the student body about developmental disabilities, I pulled him out and made sacrifices to be able to homeschool him. When Adam developed an unknown health issue last year, I racked up innumerable hours scheduling and attending all of the various medical tests he endured and then the surgery, once his condition was identified. But that’s what you do. You do whatever your kids need. And it has become painfully obvious that my boys, now teens, need two things: more time with their father and specialized instruction for Neil.

Nothing I wouldn’t do.

So I take a deep breath as I write this, as I commit the concept to print: We are moving to Los Angeles. Not next week or next month, but soon. In mid-June, for the past eight years, the boys have gone to visit their father for several weeks. This June, they’ll move. I’m putting my house on the market in about three weeks, and I will join them in L.A. as soon as it sells.

It’s a huge change for all of us, but one that I believe will yield many positive results. Neil will attend a specialized school for autistic students that will target his lack of executive function. And with his recent announcement of wanting to go to film school for college, we’ll be in the right area for that to happen down the road. Adam, who has had the hardest time living far from his father, will be near him year-round. And I plan to finally find a job that fits a little better with my English degree, as well as spend time with other family members whom I have missed for many years (I was born in L.A. and moved to Oregon for college).

But I can’t begin to describe how much I’ll miss beautiful Oregon and our family members and friends who live here. I have no doubts that this move is the right thing to do, and that this is the right time, but I have spent half of my life in Oregon, and there is much to be missed. It’s not called “God’s Country” for nothing! Then again, the other half of my life has been spent in the “City of Angels,” and, truth be told, my feelings aren’t too mixed about returning to it. But for now, I’ve got a yard to spruce up and lots of paperwork to fill out.

It’s time.

 

Image credit:  Adrian , Canada

Aware

Are you ready for the irony of Autism Awareness Month ironies?

As many of you know, I am the southern Oregon chapter rep for the Autism Society of Oregon, and I facilitate the monthly support group meetings. Since, as all of you know, this is Autism Awareness Month, I planned to show an informative DVD of a presentation given by an adult with Asperger’s, loan out many of the books I’ve reviewed here, share some Easter candy, and give out various autism-related “goodies” – magnets, bumper stickers, symptom cards, etc. I got there a few minutes early, set up the TV/DVD player, put out all the books and paraphernalia, and thought about what I wanted to say during the meeting.

But no one came.

Now I know that many of the support group members also read this blog, and I want to assure you that I am not writing this to complain or to indicate any sort of disapproval. It’s totally okay! Some of you e-mailed to let me know that you would be out of town or otherwise engaged or might not have childcare. And while kids are always welcome to attend the meetings, I completely understand if you, the parent, would rather not have your child there, for whatever reason. Believe me, as a long-time single parent, I understand! I know how it is when you just want to get out of the house by yourself, but can’t. And I definitely know Busy. Busy and I have been hanging out too much together lately, I’m afraid. I know how it is when you just can’t add one more thing. When you’re so busy that it wouldn’t be a break to attend the meeting, and a break is the thing you need most.

And I know how it is to need a break from autism. Not necessarily from your child who has it (although that is often the case!), but from the barrage of all things autism – books, DVDs, news stories, events, meetings. I’ll be the first to raise my hand and say that I’ve often felt this way! Coming up on thirteen years post diagnosis, I sometimes feel over-aware. Saturated. Not to mention tired. All of us feel this way more often than not; it comes with the territory. And so, we need a break from autism. And it’s understandable to feel a bit “over” the idea of Autism Awareness Month.

Tonight, I waited in the meeting room for twenty minutes, metaphorically shrugged my shoulders, packed up all of the autism stuff, and ate some Easter candy as I drove home. And I thought about the fact that the people who most need a break from autism don’t get one. Every day our kids must contend with painful sensory issues, communication difficulties, social misunderstandings, vulnerability, and many other issues described so well by my friend, Jess, who wrote this post that I highly recommend you read. And I highly recommend that you pass it along to your friends and relatives. Because so often we talk about what autism is, but we don’t always talk in specific terms about how it really is for our children. And once people can grasp that, wrap their minds around the reality of it, I think it will make a tremendous difference in how they view our kids and this thing called autism. That’s what I think Autism Awareness Month is for. I’m aware. You’re aware. But there’s a world of people out there who aren’t.

Taking It in Stride

I tend to notice a lot of things in early spring. By the middle of spring, I am usually plagued by spring fever and am unable to focus on much of anything. But in early spring, I’m alert, I’m happy that winter has come to an end, and I’m much more observant. I notice, of course, that the grass and weeds in my yard grew while my back was turned and that the tree in the front has lost all of its pre-leaf blossoms overnight. I notice that my cats are shedding like we’re in the middle of a heat wave. And I notice that my sons seem much taller than when I dropped them off at the airport nine days ago.

This time, at least, driving to the terminal to pick them up, I don’t cry. I take it in stride now, their new ability to take a direct flight on their own. I will never take it for granted, but it is the new norm, the status quo. Of course, it is still a novelty, and I wait with excitement on the receiving side of the revolving security doors, watching. I see Adam first, notice the sun across his nose, his hair, the color of milk chocolate, casually falling across his eyes. He wears cargo pants and flip-flops and sports a new shirt. Neil towers behind him, also in a new shirt, and jeans, carrying a tote bag. I smile and wave as I approach them. I embrace Adam, inhaling the scent at the top of his head, realizing that I won’t be able to do that much longer. Neil stiffly accepts a hug. Usually I don’t think about it; this is how he hugs. But sometimes I wonder if it will always be this way. No matter. It is what is, and I love him for it.

I notice a wide ring of chapped, irritated skin surrounding Neil’s mouth, and then I notice that he has shaved. Shaved! The last time he had gone to L.A. to visit his father (at Christmas), I had mentioned to him that Neil might need to start shaving soon, but we hadn’t discussed it since, and now, it’s done. My little boy! Shaving!

“Wow! You shaved!” I exclaim.

“Yeah,” he replies in his deep, steady voice.

We step out of the way of the other passengers filing through the security doors and start making our way to the luggage carousel. “It looks like the shaving caused some irritation to your skin,” I say, which he denies. He claims that it had been windy and dry on a day that they were outside all day long, and that had caused it. But Neil has always had extremely sensitive skin, so I am not convinced. He seems to believe that I might tell him not to shave any more if he admits that it irritated his skin, and no way would he give up a rite of passage that he’d long awaited.

“Well, I think your skin just needs a little time to heal before you shave again,” I suggest. “It needs to get used to the sensation of shaving, and then it won’t get irritated when you do it. We’ll put some lotion on it, and it should be fine in a few days.”

“Okay,” he says.

Later, at home, I bring him some facial lotion. The lower half of his face is red and dry, the skin tight. He has been opening his mouth in an exaggerated manner, trying to “stretch the skin so that it won’t crack.” I suggest that doing so might make it worse, but he is adamant, even though he complains that it hurts. I cut to the chase.

“So how do you feel about shaving? Do you feel like you’re growing up?”

“I’m fine with it,” he states. “It’s just another step to adulthood.”

Apparently the rite of passage wasn’t as big of a deal as I had thought. He takes it in stride, my not-so-little boy. I think I’d do well to follow his lead. But for the moment, I can’t get over the fact that my firstborn is shaving! Even though I knew it was coming, it snuck up on me faster than the grass and the weeds, faster than any sign of spring. Yes, spring is here, and my boys are growing up. All at once.

The Autism Mom’s Survival Guide: A Review

You’re probably going to see this often when reading reviews of The Autism Mom’s Survival Guide: Susan Senator has done it again. Her second book is excellent on its own, or as a companion to her first, Making Peace with Autism, which I loved and reviewed.

And I love this one, too. Reading it was like Senator holding my hand, leading me through the process, coaching me. The first chapter is an essential look at perspective and how it shapes our views and emotions. It refers not only to our own perspective, but that of our relatives, friends, and neighbors, and society in general. Senator deftly and graciously addresses the issues of depression and coping with judgment and criticism, and she lists helpful strategies for parents to free themselves of “autism baggage.” What follows is a chapter on the various types of therapy and autism treatment, as well as a discussion about the variance of the spectrum and how the autism community is divided over the cause and cure issues. Senator offers concrete advice for gaining perspective on these issues and choosing therapies for our children.

The bulk of this exceptional book is filled with many personal anecdotes from various autism parents interviewed by Senator while she researched and wrote the book. These parents candidly offered their experiences in different areas, including having fun with their children on the autism spectrum, planning successful trips, taking care of their own needs, focusing on their marriages, and getting help from others. Senator herself contributes many personal examples and advice in these sections, including a lovely description of a trip her family had taken to Colorado, which involved much planning and preparation. Her son, Nat, attended an extreme-sports camp specifically designed for kids with autism while she, her husband, and their two other children explored Colorado. One of my favorite parts of the book was Senator’s beautiful description of coming back to the camp to pick up Nat. “I was ravenous to see Nat again. We all were, but Nat was nowhere in sight. ‘Keep watching the trees,’ a counselor told us. The trees? A few moments later, a rustling sound, and then, suspended on a rope from a zipline, Nat came sailing through the trees with a hardhat on his head and a smile on his face.”

The final chapters of the book cover our children’s growing up years, including the subject of residential placement, and becoming adults, with sections on independence and advocacy. Since my own son is rapidly approaching this point, I found all of the information especially helpful and comforting, coming from someone like Senator, who eloquently describes both the beauty and the difficulty of her experience. She ends The Autism Mom’s Survival Guide with an absolutely brilliant epilogue that I’m not going to give away in this review. You’ll just have to read it for yourself!

Terrific*

An e-mail I received today:

Hi mom,

This is my pipe cleaner sculpture of Charlotte and her web. I made it
today. What do you think of it? We are  having so much fun with dad. I love you and I’ll see you soon.

Love
Neil

 

* one of the words Charlotte wrote in her web (and also what I think of the sculpture)!