Monthly Archives: April 2008

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.

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.