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.

Thoughts on Homeschooling

Two roads diverged in a wood, and I – I took the one less traveled by, and that has made all the difference.

I did some online research and found (per consensus) that, in the United States, approximately 3% of students (Kindergarten through 12th grade) are homeschooled. That is certainly a less-traveled road.

But it’s also certainly one that, as Robert Frost’s immortal poem deems, has made “all the difference.” I ran into a friend today while walking to the library with Nigel, and she asked how the homeschooling’s been going. I told her that it’s the best decision I ever made.

I often get asked what type of program I’m doing, so I thought I’d describe that a bit. When I was initially researching homeschooling techniques, I discovered that there are as many different ways to homeschool as there are families who do it. The programs vary from highly structured to something called unschooling and everything in between. I decided on a structured schedule with a flexible curriculum. On any given day, Nigel and I work with the following sources: his public school-assigned math book, workbooks from Clas E. Professor, articles on Wikipedia, Kids Discover Magazine, National Geographic books and magazines, CD-Rom programs, educational videos and books checked out from our local library as well as the middle school library, and books from our own collection. We have more than enough material to work with, and aside from what I’ve spent on the books and CD-Roms we already had that we’ve accumulated over the years, this year I spent $20 on a Kids Discover subscription and $40 on workbooks. That’s it! That’s our homeschool budget! Of course there’s the reduced income to consider when figuring the real cost of homeschooling, but it’s worth it. Definitely.

The other thing I did in preparing to homeschool was to go to our state’s department of education website and inform myself about our state’s requirements for homeschooling. I also thoroughly read and noted their detailed list of grade level standards, i.e. what each student is expected to know by the end of benchmark years (3rd, 5th, and 8th grades). My goal is to follow the list of grade level standards because Nigel has expressed a desire to transition back to public school in 9th or 10th grade so that he can attend our local high school. I would certainly love for him to be able to do that, so in designing his curriculum I try to keep up with whatever the state says his peers are supposed to be doing academically. That resource was extremely helpful in figuring out what to teach him. (For anyone interested, here is the webpage with Oregon’s grade level standards for every academic subject.)

It was a bit of work designing my own homeschool program, and some financial sacrifice, but every day I see the benefits. Every day I’m glad I took this road.

Breaking Traditions

We don’t use the word ‘pajamas’ in our house. When I was growing up, clothes that we slept in were called ‘nighties’ instead of ‘pajamas,’ and I didn’t like them much anyway. I would have rather worn a t-shirt and sweatpants to bed, which I started doing in college. I had my kids do the same; it just seemed more comfortable.

When Aidan could talk (which was delayed, possibly because of having an older autistic sibling), he asked, “Why are the pants called ‘sweatpants?'”

Me: Because some people wear them when they’re exercising and they sweat.

Aidan: But we don’t.

Hence, the phrase sleeping pants was conceived. And in the summer, they wear sleeping shorts. Everything has to be labeled very literally around here.

Bedtime is always a mad dash for the boys to get everything done that they wanted to do for the day, all of their little Lego projects, stuff they wanted to look up online, as well as the requisite teeth-brushing, homework-checking, and lunch-making for the next day. As a result, they are rarely in bed at the stated time, which is as late as I can stand it because they have never, even as babies, needed much sleep for some unlucky reason.

So it’s 10:30 PM and I’m really wanting to close up shop for the night and maybe read in bed for half an hour before going to sleep myself. Aidan’s already down (required since he’s younger), but Nigel is still in mad-dash mode. He’s running out to the game room to find one last Lego piece (a Ghengis Khan-style helmet), he’s printing out a chart of the International Date Line from Wikipedia, and he’s saying good night to the cat. I order him to brush his teeth and get in bed because I want to go to bed.

I shut off the lights, check the doors, turn down the heater, and go back to Nigel’s room to say good night to him, hoping he’s ready.

Nigel: I have to put on my sleeping pants.

Me: Let me say good night to you and then put on your sleeping pants.

Nigel: I have to put my sleeping pants on before you say good night to me. It breaks my traditions.

And in the second before I respond, I think, Wow, what a beautiful sentence. Two! He can now express his needs with words instead of screaming, as he would have just a few short years ago. And I say, “Okay,” and close the door until he says, “I’m finished.”

Yes, he has his rituals. Things often need to be done in a certain order (unfortunately cleaning his room does not fall into that category). But there are many things that Nigel’s flexible about, and I can give him a minute to finish up with the rituals that he feels a need to perpetuate. The traditions. They bring some semblance of order to his often harried brain. And who am I to break traditions? Except maybe pajamas.

Lack Thereof

Yesterday I wrote a post about Nigel showing empathy without being prompted, and today I thought I’d write one to illustrate his development in that area, and how far he’s come.

Nigel has been involved in Scouting since 2004, and it has been entirely positive. He’s been in Boy Scouts for two years and was in Cub Scouts for almost two years. Three years ago, when he was ten, we were attending a monthly Pack Meeting at the elementary school, and there was a stage set up in the gym for the school’s annual talent show, which was held that same week. The Pack Meetings were typically held in the gym, so all the kids had fun climbing on the stage and play-acting. One Scout’s younger sister (about age four) slipped and somehow became wedged in between the stage and the wall behind the stage. She was stuck tight, and it took at least five minutes of planning and carefully moving the stage to get her out. One of her thighs had taken the brunt of being stuck, so it had been scraped, but other than that, she did not appear to be seriously injured, and was mostly crying out of fear.

The whole episode peaked Nigel’s interest. If I had realized the reason behind his interest and taken into account his lack of empathy, I would have stopped him from going over to the worried parents as they comforted their daughter when she was removed from the stage. I would have stopped him anyway, if I had been close enough to him, since I didn’t want him getting in the way. But he was not near me when I saw him walk quickly over to the parents, and I dashed to catch up to him to distract him before he could reach them. I arrived just as he loudly asked, “Can I see the scar?” The mother scowled at him, turned, and walked away carrying her daughter.

I, mortified, apologized to the father and led Nigel away, explaining to him that what he asked was not appropriate when people are hurt. At the time I thought the concept was lost on him. “I didn’t want to touch it; just look at it,” he persisted. But something about my response must have stayed with him. He must have absorbed it, filed it away, as he does with every other piece of information that comes his way. And gradually, over the years, he is learning to apply it, along with every other time I’ve tried to teach him about empathy, what is appropriate to say or not, and what would be the best response in a situation. He is learning that what really matters are people and how they feel. And as evidenced by what happened on the recent backpacking trip, he’s starting to do this on his own.

Emerging Empathy

One of the most difficult things to teach an autistic person is empathy. It can require years of repetition, and even then reminders are needed; rarely is an empathetic act spontaneous, at least in my experience. It’s just due to the nature of autism – inherent in the “aut” (self) part of it. And so, we have to teach them to care, and we hope that one of these days they’ll do it on their own.

This past weekend Nigel went on a two-night backpacking trip with his Boy Scout troop, and I stayed home with Aidan. Nigel usually does very well with the troop, provided they’re not doing the type of gift exchange where everyone picks a number, and the higher number-holders get to “trade” gifts with the lower number-holders, whether they want to or not. No, Nigel didn’t do well with that. He lost a giant chocolate bar that way, and he’ll never forget it (I’m sure no one else from the troop who attended that gift exchange will forget it either). But other than that, most of his outings with the troop are problem-free. I asked the scoutmaster to remind Nigel to take his medication, and off they went on a 13-mile backpacking trip.

Upon their return, I asked the scoutmaster how things went, and he said that Nigel did really well. He only took issue with having to get into a wet tent after it had rained. But then the scoutmaster told me that one of the nights he woke up to what he thought was a coyote, then he realized it was one of the kids crying. He got up to investigate and realized it was coming from Nigel’s tent, which he shared with another boy. The scoutmaster stood and listened as he heard Nigel consoling the other boy whose stomach was hurting. When the other boy said he wanted to go home, Nigel calmly stated that there were no motorized vehicles to take them home and that he should try to relax. The next morning the scoutmaster thanked Nigel for helping the other boy.

It has taken many years, with many setbacks along the way, but Nigel has reached a very important milestone: showing empathy (in a leaky tent, no less). I’m certainly not deluding myself into thinking that it will always be like this from now on, but it’s an encouraging start. It’s more than encouraging; it’s truly wonderful. He’s applying life skills without reminders, and I am thrilled.

Anger Management

Man, what a day. Just when I think things are going pretty well, thinking I can breathe a little easier, the phone rings. As an introvert, I don’t get too excited when the phone rings anyway. But when Nigel’s not home and the phone rings, I get nervous.

This afternoon, Nigel wanted to ride his bike to a neighborhood kid’s house a couple of blocks away, so I said sure, just be careful and be home by five. Less than 45 minutes later, the phone rang and it was the elementary school about half a mile away. Apparently the kid he went to visit wanted to hang out at the school, so Nigel went with him, and then he proceeded to get into an argument with the kids in the after-school club there. One of the girls said something that upset Nigel, and things escalated to the point where Nigel was so agitated that he threatened her by saying he would tear her arms and legs off, after she had called him a second-grader. I told the school I’d be there in five minutes.

If I had a dollar for every time all the schools over the years called me about Nigel’s disruptive behavior, I could certainly pay for a much-needed massage for myself. You would think after all these years that I would be used to it, that it wouldn’t rattle me the way that it does. But every time it happens I feel like I have a brick in my gut and a sense of hopelessness floods my veins. I’m so tired of it. I’m so tired of having to apologize and explain my son’s behavior to someone and wondering if it will ever change.

But this time was different. This time Nigel apologized, and without prompting. To the adult moderator of the club he said, “I’m sorry, I have autism and sometimes I can’t control my anger.” And then, on his own, he went and apologized to the girl, told her that what she said had upset him, and she apologized to him. It was like something out of a movie. Something I wouldn’t have dared to dream of.

And the brick was gone and I thought, Wow, he’s actually starting to get it. Then we went home and I talked with him about what had happened, and how proud I was of him that he had apologized. He still needs to do a lot of work in the area of letting go of an argument and the feeling that he has to “get back at someone” when they upset him, and remembering that it’s never okay to threaten people. And I know I have to prepare myself for many more confrontations and ensuing phone calls. But we made progress today. Development is always slow, but it’s there. And so is my faith in him.

Having Autism Vs. Being Autistic

For many years I could not say that Nigel was autistic. I could not say, “My son is autistic.” I would readily tell people “My son has autism,” because to me that was different than calling him autistic. The autism, I accepted. To me, saying someone “has autism” puts the focus on the person rather than the disability. Saying my son “is autistic” makes it sound like the autism is his identity.

But it is. It’s part of his identity.

It took me so long to realize that and accept it. I used to tell friends and family, “We say that Nigel HAS autism rather than he IS autistic, just like you say that someone HAS Down syndrome rather than someone is ‘Down syndromic.'” I’m sure I sounded like I was stuck in some level of denial. I was willing to admit that my son had a disability, but not acknowledge that it was actually part of his personality. 

I’m not sure what changed. Maybe it was a subconscious need to fully process the way autism affected our family. About two years ago, I started saying, “My son is autistic” when mentioning him to strangers or acquaintances. And I was surprised to find that I actually felt comfortable saying it. Sometimes I would say it by myself, quietly, in my room. I would hear the words coming out of my mouth, and with them came a sense of something that resembled peace. Autism didn’t feel as much like this formidable disability when I used that different terminology, the one I had resisted for many years. The word I had told other people not to use: autistic. It was almost a relief that now I could actually say it: My son is autistic! I realized that I had finally truly accepted the autism present in our lives because I embraced it as part of my son’s identity, not just something that he “has.”

My realization was further supported by an interview I recently came across at Natural Learning Concepts, featuring Daniel Hawthorne, a high-functioning autistic adult who was non-verbal until the age of seven. Here is his response to the issue of having autism vs. being autistic:

Do you get upset if you’re called “autistic” rather than “a person with autism?”
“Actually, I prefer to think of myself as being autistic rather than having autism. Autism is pervasive; it affects every facet of my life.  It is not just something I have in the sense that one may have diabetes or epilepsy.  Autism affects the way I think, my personality, my abilities and much more, and I accept it.”

I have come to feel the same way about Nigel. I never thought of autism as a disease (like diabetes or epilepsy mentioned above), but I seemed to think I could refer to it as such, in saying it was something Nigel “had.” I have finally come to terms with the fact that it’s part of who he is. And whether he is able to achieve the high level of functioning that Daniel Hawthorne has, or if he stays the same, or even if he regresses, Nigel will always be the amazing person that he is – my autistic son.

More Vaccines

Just when you thought it was safe to go back in the water . . .

I’m not against vaccines. But today at Nigel’s 13-year physical, the nurse informed me that he should have three more vaccinations: tetanus (with diphtheria and pertussis), hepatitis A, and meningitis. And they offered to give all three at once, as a convenience to me. I blanched at the thought.

Deep breath. As I have mentioned before, I don’t think thimerosol-laden vaccines are the sole cause of autism. I do, however, believe that they are (were – if we trust the labeling of thimerosol-free vaccines) a contributing factor to the presence of autism. A notable contributing factor, in some cases.

Nigel’s last “booster” vaccinations were seven years ago. In 2001, I don’t think I had heard of thimerosol. I think at that point, thimerosol had not been isolated as a possible culprit. There were groups of so-called fanatical parents who supposedly believed that the vaccines themselves caused autism. And I didn’t think that the vaccines themselves were to blame. So I agreed to the three boosters (did I have a choice, school district?) and unwittingly injected my son with more mercury.

And now that the thimerosol-laced vaccines are no longer being produced, I should feel fine about continuing to inoculate my son, right? On paper, I do feel okay. But something nags at me. Something makes me feel like I should avoid the vaccines. It’s just a little feeling. I wish I didn’t feel it, because I think at this point it’s irrational. It’s this “here we go again” feeling, a deja vu feeling, an I-know-better-now feeling. And I will shelve it, because I believe it when they tell me that thimerosol is no longer being used in children’s vaccines. Maybe I just want to believe it. But I sure as hell hope it’s the truth. It’s the least we deserve.

Vaccinations are never a pleasant experience but are essential when dealing with certain diseases, especially if traveling abroad. For UK readers, there are a range of vaccination services for fighting diseases at your local private clinic in London.

Resourcefulness

Yesterday Nigel accidentally spilled water on the keyboard of the computer that he and Aidan share. It did not go over well, and Nigel’s self-beratement matched Aidan’s exasperation. Fortunately, I had a spare keyboard in the closet, leftover from when I got my new computer last year and had opted to use my cordless ergonomic keyboard. But the spare keyboard needed the newer USB port, which the kids’ six-year-old computer did not have, so it wouldn’t work. 

Voila! I found an adapter! I plugged the USB cable into the adapter and put the adapter into the old, round keyboard plug on the back of their computer. Still nothing! The adapter turned out to be for the mouse port!! Then I thought to look at my old corded ergonomic keyboard, and it had the right plug – the old round kind! I plugged it in, feeling premature triumph, and then . . . nothing! I’m guessing that their brand of computer, Microtel, is not compatible with Microsoft accessories. Who could have guessed that the two spare keyboards I bothered to save would not work at all when needed? What a wasted effort!

Meanwhile, Nigel had taken apart the old keyboard that he had spilled the water on (he asked me first if he could), and it was in about 95 pieces spread out all over the living room floor. I took a deep breath and went online to see if I could find any Microtel keyboards. I found one, but of course it was new, so it had a USB plug instead of the old round kind. So then I started looking for a whole new freaking computer, since we need a computer for homeschool work. Gah!!

In the midst of that, the boys’ father called, so I told him what happened, and he said that he had some high school buddy who refurbished old computers and that he’d give him a call. I decided to start making dinner, and once again yelled out to anyone within earshot that they are to never have food or drinks around the computer. Ever!

After dinner, Nigel matter-of-factly stated that the keyboard was completely dry and he had put it back together. I had thought that he was going to take it apart to play with the parts, but he had taken it apart to dry it out. Aidan matter-of-factly suggested that they try plugging it back in to see if it would work now that it was dry. I said, “Go ahead and try, but it probably won’t work.”

It worked. The damn thing actually worked.

Nigel said, matter-of-factly but with an unmistakable surge of self-esteem, “I used my resourcefulness.” He never ceases to amaze me. Here I thought I was being resourceful by saving the spare keyboards and trying the adapter and researching to find a replacement. I had just assumed that the keyboard would no longer work.  Sometimes I just need to be reminded to fix what is broken. That should be the first step in being resourceful. That and not making any assumptions – about things or people, and what they’re capable of accomplishing.

Everybody Is Different: A Review

 

Everybody Is Different , by Fiona Bleach, is a fantastic little book. At around 75 pages, it’s perfectly accessible for kids, as the subtitle indicates: A book for young people who have brothers or sisters with autism.  It’s written mostly in a question/answer format, divided into six parts: general information about autism, main characteristics of autism, odd behaviour (the author is English, hence the alternate spelling), sibling feelings, therapy and help, and a glossary at the end. It also features cute little illustrations by the author.

The book tackles some difficult questions, such as “Why do some people have autism?”, answering them in a way that kids can understand, without being too simplistic. One of the book’s strengths is that it not only answers questions, it also makes a point of discussing how the NT sibling feels and what they can do about it. This includes dealing with such emotions as anger, resentment, frustration, sadness, and embarrassment.

My younger son, Aidan, and I have consulted the book many times regarding various subjects and found it to be helpful and encouraging. Aidan benefitted from reading about why his brother makes strange noises, why he says and does the same things over and over again, why he throws or breaks things, and why he hurts himself. The book also listed some good tips for maintaining privacy and how to respond to an autistic sibling who doesn’t know what that means.

Of the many attributes of Everybody Is Different, one that really stands out is the encouragement of NT siblings to talk with their parents and friends about how they feel. I also appreciated the positive suggestions for interacting with autistic siblings and explaining their behavior to friends or others who are unfamiliar with them. I highly recommend this excellent book for any family with autism.

Haircuts

Either I picked the wrong day to cut Nigel’s hair, or he picked the wrong day to want to print out 29 pages of pi. That’s right – he found a website with a link to print out 29 pages’ worth of 3.14. As I was setting up the hair-cutting station in the kitchen (having prepared him verbally for two weeks), he came running into the room and in an uncharacteristic, excited tone said, “I’m printing out all of pi!”

In retrospect, I should have let him do it. It’s just that, on my reduced income with homeschooling him, I can’t afford to be buying ink cartridges every week. I ran into his room, shut off the printer, and canceled the print job while he screeched at me. Then I tried to explain to him about using up ink in the printer, and that he should check with me before printing out anything over five pages. He began smacking his forehead with the back of his hand and making angry growling noises.

I always talk about how I “pick my battles” with my kids, and how I weigh if something is worth an uproar or not. I’m thinking that perhaps 29 pages of ink was not worth it. I should have let him print out pi. However, I didn’t want to “change my mind” midstream, mid-uproar, and have Nigel think that if he screeched and growled and hit himself that he could get what he wanted in the future. So finally I got him to calm down by pointing out to him that if he printed out pi, there would be no more ink to print out his zoopraxiscope templates (Obsession of the Week).

Then I faced the formidable task of getting him to let me cut his hair. I really wish he could just let it grow long, but, out of boredom during Spring Break, he began pulling it out again (although not eating it, much to my relief), so I told him it had to be cut. Since his first haircut at the age of three, he has hated haircuts. He has an unrelenting fear that his ears will be cut, coupled with sensory issues that made him unable to bear the vibrating clippers. For many years we did not use clippers at all, only scissors. But that was before he started pulling out his hair, and at that point we needed to cut it as close as possible. Especially since we wanted to put off having to do it again for as long as we could. So now I use the clippers, after having him slowly get used to it, and he always puts earplugs in. I keep a set in the same box as the clippers so they’re always there.

Nigel used to shriek when I’d cut his hair, and for years I feared that Child Protective Services would come banging on my door. In fact, I’m surprised they never did. It’s one of those things about the early years that I am so glad to have behind us. Now when I cut Nigel’s hair, he certainly lets me know he doesn’t like it, but he doesn’t scream and thrash around. He lets me do it, although he lectures me each time not to cut his ears (I never have, so he’s not drawing on any past experience), and he constantly shrinks away from the clippers, making the job very difficult.

And this time, he was angry because I hadn’t let him print out his 29 pages of pi. He kept making sounds like a snorting horse as he sat in the seat while I cut his hair, forcefully saying, “Hey! Watch it!” every minute or so.  But he let me do it. I wasn’t sure at first if he would. He was resisting me as I tried to guide him to the chair in the kitchen and tie the plastic cape around his neck and sit him down. I could tell he was still mad at me.

But maybe Nigel has his own take on picking battles. Maybe somehow he sensed that a) this was something he knew was coming, b) I’d cut his hair many times before and it really wasn’t that big of a deal anymore, and c) making threats about not doing the cat litter if I don’t let him do what he wants to do never works, and he better just sit down and get this over with. He’s learned to save his big stands for the things that really matter to him. Like printing out two pages of instructions to make a neat invention instead of 29 pages of numbers. And not eating broccoli.