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.

Our Homeschool Story

Every family has different reasons why they choose to homeschool. Many do it for moral/ethical/religious reasons. Some do it simply because they love to spend as much time as possible with their children and want to be responsible for their education as well. Some do it out of necessity for the child. Our family’s homeschool story, of course, falls into that last category.

About seven years ago, I attended a special needs parenting workshop on IEP preparedness and advocacy guidelines. The moderator went around the room prompting all the participants to introduce themselves and mention their child’s educational status. I vividly remember a woman seated by herself who explained in a tired but accepting voice that due to mainstreaming problems, she would need to homeschool her twelve-year-old son who had Tourette Syndrome. At the time, I thought I could interpret the exhaustion on her face, the frustration, the resignation. I thought, because I was a single parent with an autistic six-year-old, that I knew how she felt. I remember at that moment being thankful because Nigel showed such great potential that I wouldn’t need to consider homeschooling in the future. On some level, I didn’t even want to consider it because I thought it was something I wouldn’t be able to do. But now when I remember that woman’s face and her voice, I comprehend on a deeper level what she conveyed at the meeting that night, seven years ago.

This is what I need to do for my son. I don’t know how yet, but I will do it. I will make it work.

I know this now because this is how I felt five months ago. Six months ago, as the school year was about to begin, Nigel asked me several times if I would homeschool him. At the time I had not even considered it an option, mostly because, as a single parent, I had to work. How could I homeschool him? I couldn’t be the stay-at-home parent: I was the only parent!

I will write in future posts about all the bullying and social problems Nigel experienced that made me decide to find a way to homeschool him. Within weeks of school starting, his already fragile status in a low-support mainstreaming situation had deteriorated to the point where I had begun to seriously think about homeschooling him. I started researching homeschooling websites in general and looked at our state’s requirements for specific information. But I had no idea how to swing it financially.

Opportunity knocks. I had been working at my job as account manager for an order fulfillment company for almost ten years. My boss walked up to my desk a few weeks after I decided I would need to homeschool my son, and she said that one of our clients, a music label, was looking for someone to handle the royalty calculations for their 45 artists. It was tedious accounting work, but it could be done from home, and did I know anyone who might be interested? My spine tingled; I hadn’t told her yet that I needed to find a way to homeschool Nigel.

I took the job. And after several weeks of hiring and training my replacement at the office, I begain homeschooling my son. I am so glad he asked me to do this. It is a dream come true for both of us. 

Day of the Salsa

I do my grocery shopping on Mondays, usually by myself, unless the boys have just received their allowance and want to go with me so they can buy something. Today I was alone, feeling like I was fighting the mild cold that Nigel has, so I got everything we needed for the week and looked forward to getting home and resting on the couch with a cup of hot herbal tea.

Nigel is fascinated with dates and has a knack for remembering them, as I have mentioned before. But I had no idea what he was talking about when, as I was unpacking the groceries, he walked to the calendar on the wall and said, in his stoic voice, “Today is April 7, the Day of the Salsa.”

Were we supposed to bring salsa to a Boy Scout meeting? Was my sister’s cat, named Salsa, born on this day? Did it have something to do with salsa dancing? Mexican culture or history?

Then I realized what he was talking about. “Do you mean the expiration date on the salsa container?” Yes, he did. It was the first time I remember him even noticing an expiration date, let alone commenting on it. Why the salsa? He doesn’t eat salsa, so why would he have cared? What’s even stranger is that the date on the milk carton is two days ago, but he didn’t notice that, and he had cereal and milk for breakfast this morning. I guess that’s good, though. Otherwise we might be dealing with a new obsession, a new ritual that could make mealtimes around here more difficult than they already are.

I better make baked potatoes tonight. Tomorrow is the Day of the Sour Cream.

Medication Check-in

Yesterday I forgot to give Nigel his Zoloft. All day long I was wondering why he was being so difficult: irritable, non-compliant with any little thing, lashing out, complaining, and then, sometime after dinner, it hit me. I had forgotten to give him his medication that morning.

It was good to note that the Zoloft really does make a difference for him. I had already forgotten (or probably blocked the memories of) how he had been the months prior to medicating him. His anxiety level was so high that he was constantly irritated and often lashed out. I remember one afternoon going into his room and noticing that his desk chair (the kind with the adjustable, pedestal-supported seat on rollers, with a curved metal bar covered in ribbed plastic connecting the seat and the chair back) had been broken. He had ripped off the chair back, wrenching it off of the bolts that connected it to the curved bar. I tried to fix it, but the damage was beyond repair. I ended up removing the curved bar so that the chair is now just a rolling seat with no back.

I asked Nigel what had happened to the chair. He said in a low voice, “It was because of my anger. I feel different from everyone. I have a defective brain because of the a-word.”

He has referred to autism as “the a-word” for a few years now, ever since he asked “What’s wrong with me?” and I told him about autism. That day with the vandalized chair in front of us, I assured him, as I have on so many occasions, that his brain is not defective, it’s just wired differently. I reminded him that he has a very good brain that taught him to read at age three and a half. He seemed to feel a little better.

But since going on Zoloft almost two months ago, he has not destroyed anything because of self-esteem issues. He is more relaxed, more comfortable in his skin. He sleeps better. He no longer eats his hair. He doesn’t talk about his brain being defective. He is happier, I think. It pained me to think of him breaking his belongings because he feels angry about being different, that his self-esteem should suffer because of autism. If Zoloft can alleviate any of that, then I’m sticking with it. Nigel never balks at taking it. It makes me wonder if he notices the difference in how he feels. I think he does. He just isn’t able to put it into words.

Nigel the Historian

Nigel has maintained for quite some time now that he wants to be an inventor when he grows up. Yet he has this fascination for history and a photographic memory when it comes to names, dates, and events that makes me think this passion needs to be encouraged. 

Today after homeschool we went to the library, where Nigel picked up some videos on horses, the human body, Secrets of the Mummy, and Thomas Edison. Then we went to our local grocery store where I picked up a few items while he went to the video section to try to find Disney’s Donald in Mathemagic Land. They didn’t have it, but they did have the old live-action Treasure Island, so he got that instead, saying, “I haven’t seen this in a while.”

We got home and got ourselves some lunch (he did his usual grazing approach: two pieces of bread, a pear, an apple, a cup of yogurt, and I put some tortilla chips in a pan and melted some cheese on top). Nigel took his lunch to eat in the living room while he started Treasure Island, and I sat at the kitchen counter reading WordPress for Dummies while I ate.

After about ten minutes, out of nowhere, Nigel called out from the living room, “Mom, you were born in a period of economic inflation.”

Me: Yes, I suppose I was.

That was all.  He often leaves me hanging like that. I suppose I could have asked him why he mentioned that at that moment, but I was too caught up in marveling at his sentence structure and didn’t want to stop his train of thought, wherever it was going. Sometimes I wonder if all of his musings might come out on paper some day, along with his analysis and theories about humanity. He strikes this amazing balance between attachment (to those he loves) and detachment (from social mores and historical events) that I really think he might possess an innate ability to look objectively at a situation (historical or otherwise) and see what’s really going on. I know, I’m making some assumptions here, maybe asserting my own biased observation, projecting that my son could be some amazing social analyst because of his autism.

But I was born in 1971, and I can’t remember when I had last mentioned that around him. He filed it away, along with whatever he had previously read about inflation, and somehow the two topics combined in his head while he was watching Treasure Island. His mind fascinates me.

Brain Wave Therapy

Brain wave therapy is truly amazing. It can heal illness, stop problem behavior, increase productivity and creativity, induce sleep, optimize learning and memory, aid in relaxation and stress release, and creates a meditative environment. Kelly Howell at Brainsync.com, a leader in brain wave technology, offers this description of brain wave therapy:

First discovered by biophysicist Gerald Oster at Mount Sinai Hospital in New York City, brain wave audio technology sends pure, precisely tuned sound waves of different frequencies to your brain via stereo headphones. In his EEG research, Oster discovered that when different vibrations, or sound frequencies, are delivered to the brain separately through each ear (as with stereo headphones), the two hemispheres of the brain function together to “hear” not the external sound signals, but a third phantom signal. This signal is called a binaural beat, and it pulses at the exact mathematical difference between the two actual tones.

With Brain Sync programs, the binaural beat is then embedded in soothing music, helping the listener to easily attain the alternate brain wave pattern. The result is 30 or 60 minutes of peaceful meditation while your body and mind benefit from the healing frequencies.

I love Brain Sync’s programs, particularly Positive Thinking, Create Success, Deep Meditation, Deep Insight, Brain Massage, Ecstasy, Relieve Jet Lag, and Awakening Kundalini. I recently gave Mind Body Healing to my father, who is undergoing chemotherapy for colon cancer. Last year, a friend of mine who worked nights benefitted from Healing Sleep. The programs are highly effective.

And so I am wanting to have Nigel try brain wave therapy. Regarding using brain wave therapy with children, Brain Sync maintains “Brain wave centered programs are intended for adults only and are strongly not recommended for babies or children under the age of 15, as their brains are still developing.  If brainwave therapy is used for a child, it should be under the care, advisement and supervision of a healthcare professional.”

With that in mind, I decided to do some online research in the area of brain wave therapy, also called neurofeedback, and autism treatment, and found some positive articles. Bio-and neurofeedback programs involve equipment that monitors and measures the brain’s electrical activity instead of using the audio recordings of binaural beats embedded in music (like Brain Sync’s programs), but the goal is the same: to retrain, strengthen, and calm the brain through brain wave patterns.

Here is what I found at Autism-home.com about using neurofeedback to treat autism:

A consultant to EEG Spectrum International, Inc., which developed the software and hardware interfaces for Neurotherapy and developed training courses for appropriate clinicians, Dr. Jarusiewicz also runs a non-profit organization, Atlantic Research Institute, Inc. A.R.I. develops and manages research projects using Neurotherapy, particularly in the area of autism, learning disabilities, disordered brain issues as well as addiction. Her study on the use of Neurotherapy has been published by the peer-reviewed journal, Journal of Neurotherapy, Volume 6(4), 2002. The results were impressive. She showed with statistical significance a change (lessening) of autism behaviors by 26% in an average of 36 sessions over 4.5 months. This was compared with a control group that used conventional methods of changing behaviors that achieved 3% change. All major issues improved for all children trained: speech, schoolwork, tantrums, socialization, anxiety and depression.
Dr. Betty is now working on a pilot project to enable parents of autistic children to conduct neurofeedback from home, with the help of a licensed clinician. She is also conducting a clinical trial for FDA approval for use of neurofeedback specifically for use in the autistic spectrum, which is in the planning and development stages.

This particular article was written in reference to an 8-year-old boy, so it sounds like age was not a factor for them. I have decided to have Nigel start with a Brain Sync program soon, and I will certainly post his progress here as we go. I’m optimistic!
 

The Bikeriding on a Busy Street Debate

It’s a gorgeous spring day here in southern Oregon, and, after we finished with homeschool, Nigel wanted to ride his bike, alone, to a store a mile and a half away on a busy street. I blanched at the thought.

As I have mentioned before, I feel semi-comfortable with him riding alone around the suburban neighborhood in which we live. I know, I know. He’s thirteen years old, for God’s sake. Let the kid ride his bike. But this particular thirteen-year-old kid, even though he can talk now, still has sensory issues which can compromise his safety (and possibly the safety of others). What happens if a commercial truck drives right next to him and the rumbling (roaring, to him) of it jars him enough to make him wobble, hit the curb, and fall into the path of the truck? Or, if he appears to not be paying attention, the driver of the truck, or any vehicle, could sound their loud horn to alert him, and it would startle him enough to make him lose control of his bike and veer into traffic.

Then there are the flying insects. At any time while walking, if any flying insect, from a tiny gnat to a huge moth, happens to come near Nigel, he immediately begins violently shaking his head, flinging his arms around, and running away. This cannot happen on a bike on a busy street.

So I talked to Nigel about my truck concerns, about holding his line so that he does not wobble too close to traffic (“I hold my line,” he said in his deadpan voice), and about insects flying in his face. That sobered him for a moment, and I could see the wheels turning. Then he said, “We just need to extinguish bees with stingers. Or make flightless bees.” Flightless bees. Time to do a homeschool unit on pollination.

In the end I realized that, safety concerns aside, I have to get him a bike lock before he can ride his bike to the store anyway. So I’ve successfully put off the bikeriding-on-a-busy-street milestone for another day.

The Responsibility Club

Nigel talks a lot now. Occasionally his syntax is a little off, but he rarely mixes up pronouns as he used to do regularly, and his sentences are now long and complex (often too complex for his peers, and some adults, too!). I love hearing what’s going on in that brain of his, even when he’s complaining about doing his chores, which happens on a daily basis. You have to imagine Nigel’s characteristic deadpan voice as you read this dialogue.

Me: Nigel, it’s your day to do the cat litter.

Nigel: Why can’t they learn to do it themselves?

Me: Why do you ask me that every time? You know that’s not possible.

Nigel: Well, cats should be genetically engineered to clean their own litter boxes.

Me: Well, until then, we all have responsibilities in this family, and today it’s your responsibility to do the cat litter. It’s on your responsibility chart that you look at every day. I shouldn’t have to ask you when it’s your turn to do it. It’s your responsibility.

Nigel: I didn’t join The Responsibility Club. Who invented responsibility? Was it Charlemagne or Aristotle?

Me (unable to respond momentarily due to stifled guffaw): Nigel, just do the cat litter now, please.

Nigel (exasperated, no longer deadpan): Aaaaahhhhh!!!! 

But, he finally did it. We go through this ritual of feet-dragging and complaining with every request for him to complete a simple household chore. I guess that’s normal for any thirteen-year-old. As for mentioning Charlemagne, Nigel read somewhere that education was Charlemagne’s idea, so he figured that the emperor must have also promoted the idea of children doing household chores. Unless it was that idea-spouting Aristotle . . .    

The Autism Club

When I was in high school I had a good friend I’ll call Eddy. Eddy and I were in several of the same classes since freshman year, and by junior year, we had become pretty close. We never dated, but we talked a lot, and one day during class he ran out, visibly upset, and the teacher suggested I go check on him. I found him sitting on the steps of the side entrance of the building, and I sat next to him and gave him a hug. He told me that he was coming to terms with the fact that he was gay. He didn’t know how to tell anyone; he felt confused and a little scared. I assured him I would be there for him.

Months later, Eddy felt better and more sure of himself. His family had responded positively to the news and his friends supported him. He said that he couldn’t believe that it was happening to him. He had read and heard about people being gay, but until he acknowledged that he was, he never realized what it would be like, how it would affect him. He said that he felt like now he belonged to The Gay Club. And that it would determine the rest of his life.

I certainly didn’t feel it at first, but over the years I have come to realize that with my son’s diagnosis I was granted lifetime membership in The Autism Club. I had read and heard about autism, but I had no idea what it was like until, through him, it became present in my life. I never realized how that would affect our whole family.

I’m sure it’s the same for any parent of a child with a disability. You start going to all the IEP meetings, the team meetings with therapists, the therapy appointments, dealing with trying to take your child out in public, finding a good fit with a program or school and changing frequently when it doesn’t fit. You come to terms with how the disability affects all the family members, now and in the future. You realize that your lives are going to be different than those of your neighbors, and even your friends. You wonder how it will affect your other child, having a special needs sibling.

So you go to the meetings, you do what you need to do, you give attention and show empathy to your other child, and somehow, as the years go by you realize that you are functioning, you are doing this. Life goes on. It’s different, it’s not how you thought it would be, not what you would have wished for yourself and your children, but it’s okay.

Some might think I’m trivializing the experience by calling it The Autism Club. It is in no way trivial, and I know that only too well. It affects me deeply. I realize that I’m not the one who lives with it, but I am connected for life to the one who does. There are millions of parents of autistic kids, all going through what I go through. And that makes me feel like we’re all part of some special club or association. We didn’t ask to join. But we’re making the best of it. And it’s good to know that we’re not alone.

Making Peace with Autism: A Review

Even when I had only heard the title of this book, I knew I would love it. I knew it would be the perfect book for me to read.

The approach of accepting autism would have been enough on its own for me to like the book, but Susan Senator’s writing is exceptional, and that is why I love this book. I laughed, I cried, I truly felt she’s been through the same trenches I have. She understands. And she exudes a level of empathy through her words that brought me more comfort than any other book about autism I have read.

Senator opens with a situation that is all too familiar to many ASD families: something occurs that necessitates making a transition before the autistic family member is ready, and an outburst ensues. Senator drew me in with her description of what happened and how each family member was affected by it, and I certainly identified with all of it.

The book then continues in a chronological format, discussing her son’s early years, how he lined up his toys and stared at them while he sucked his thumb, which was exactly what my son did (although he sucked his index and middle finger instead of his thumb). She discussed her reaction to the diagnosis, going into depth about her emotions and listing all the questions that those of us who have been through it also asked. All the whys, hows, and what-do-we-do-nows. Senator includes a sidebar in this chapter called “Suggestions for Getting Through the Early Days, After Diagnosis,” which lists some helpful tips, along with other topics such as “Beginning the Healing Process as a Couple” and “Making Crisis Storybooks for Your Child,” known as ‘social stories’ in some areas.

The following chapter describes the various early school programs in which her son was enrolled, and includes tips on preparing for IEP meetings, and what to look for with school placements. This information is invaluable for parents whose child has been recently diagnosed. I found myself wishing this book had been published in the ’90s!

The next chapter addresses sibling interactions and traveling, including tips for successful family vacations. Following that is a chapter on sleep problems and the use of medication, with a thoughtful debate on whether to medicate or not. I found this chapter particularly helpful to me because I happened to be making a decision about putting my son on medication right at the time that I first read the book. Basically, Senator urges parents to trust their instincts, which is something I must constantly remind myself, and educate themselves. The chapter also listed strategies for dealing with problem behavior.

The remaining chapters deal with more family issues, such as preparing for a new baby in the house and nurturing your marriage (which I read in a wistful way, mine having ended many years ago). The chapter also mentions important information about leaving your child with others and making sure to carve out time to rest.

At one point, Senator writes: “. . .we moved from grieving over his disability to over grieving what lay ahead for him.” This resonated with me as I made the decision to homeschool my son and deal with all the changes it encompassed. I found Making Peace with Autism to be empowering in the face of my own struggle.

My favorite part of the book is when Senator discovers that her son is trying to connect with her by laughing. I, too, made this discovery with my own son years ago.  My son’s “fake laugh” is really the way he reaches out, wanting to have fun like everyone he sees around him. He is not completely closed off, in his own world. He has autism, but he is still there with us, interacting. Just on his own terms. It was so affirming to read that other families delight in this discovery as well.

I just leafed through the book again and realized that I had another “favorite part,” near the end. It was when Senator’s autistic son had his bar mitzvah: all the preparations they made, everything it meant to them, the happiness that flooded them with their extended family in attendance. So beautiful and inspiring.

I can’t say enough good things about this book. I think every family trying to come to terms with autism should read it. I also highly recommend reading Senator’s blog at www.susansenator.com. On it, she mentions that she just finished writing a novel. I can’t wait.

Friends

Neil has a friend over today, whom I’ll call Riley. Riley has been Neil’s friend for about five years, and while Riley has several other good friends he would probably rather hang with on a Saturday, he always makes time for Neil and accepts him, autism notwithstanding.

Neil has always been a social person, which I think is what propelled him to step outside of himself and learn to talk. When he was about five and not functionally verbal, he would approach typical kids at the playground and try to engage them the only way he knew how: laughter. The problem was that the kids would think that he was laughing AT them, of course, which caused a slew of problems necessitating me to intervene. I think it was because of these unsuccessful experiments in the social realm that Neil decided if he wanted to have friends, he needed to learn to talk.

One of my favorite sites for autism information is Natural Learning Concepts, which recently posted an in-depth interview with Stephen Shore that I really enjoyed reading. Here is what he says about friendship:

It is my sense that ‘people with autism don’t want to have friends’ is a myth. What seems more accurate is that those of us on the autism spectrum have a different way of making friends.

Making a friend was a huge milestone for Neil. And learning how to keep that friend has also been a milestone. It hasn’t always been easy: over the years, Neil has had outbursts at school, including some resulting in injury to Riley, that I’m sure have caused Riley to reevaluate if it would be advantageous to continue being Neil’s friend. But Riley does and he is. His presence and his loyalty encourage Neil’s self-esteem more than anything else, I think.

God bless the Rileys of the world, and bless their parents for raising them to be such patient, understanding kids. We need a few more Rileys around.