Cotton Candy Clouds

There are only two times of day when the clouds can have the color and appearance of cotton candy. One is in the early morning as the dawn breaks. I prefer not to get up to see those. If I happen to be up, I do enjoy them, but I don't like to get up just to see them or for any other reason. I am not an early riser by nature. I am a confirmed night owl. I feel best in the late afternoon and on into the early hours of the next day. Due to my life's choices, I have to go to sleep before I am ready to let go so I can get up to do my job the next day. I do so, but reluctantly.

Tonight, my government gave me a present. You see, some people hate Daylight Saving Time. Those of my acquaintance are early risers who don't like to get up in the dark. They want to see the dawn. I'm sorry, but they get the latter half of the year and now I, and others like me, get the second half. Tonight was the first night it was light all the way home.

What was the present? The present was that soft glowing light just before sunset. The clouds tonight were large and puffy, called cumulus clouds. They began to be tinged just a little with an orangey pink as we left the gym. As I drove along the country road which takes us home, they deepened a little bit with every mile that passed. People were out walking. Children were playing organized sports in the park. And I didn't have to drive in the dark, hoping no deer or dog would dart out in front of me.

When I pulled into our driveway, I got another look at those clouds, now like spun cotton candy, lacking the paper cone to hold them. They were magnificent. I hold them in my mind's eye, thinking of their awesome size and color. I see them there now in the darkness that has fallen.

What is Stimming?

One of my responders asked me, "What is stimming?" Let me explain it how I understand it and then I will look it up in an official site and see how they compare.

Stimming to me is a stimulus which makes the child feel some pleasure or relief. Many children self-comfort themselves, even if they are typically developing. Some carry a blanket everywhere. Some adults twist their hair.

There are people with autism who have noticeable stims. One that everyone is familiar with is rocking the body back and forth rhythmically.

Another that you may have seen is commonly called flapping. The person with autism moves his or her hands in front of the eyes. To me, it looks similar to the moves that people in gospel choirs make when they are singing and gesturing with their hands. Forgive me, if this is incorrect, as I am only mildly aware of how a gospel choir singer moves while singing.

My son flaps his hands only occasionally, when he is really excited. He doesn't rock. When I talk about Alan's stims, I am talking about verbal stims. This is also called by other experts echolalia and still others call it scripting.

Whatever one calls it, the person with autism repeats something over and over and over. Many people are familiar with this kind of stuck verbal expression as something that elderly people may do, especially those who are fading into dementia.

In my son's case, he is comforting himself in some way or making himself feel on top of a situation, or just amusing himself, I think.

He will come out with something from a video or something from Jib Jab (if you have never seen this online, you may want to check it out. Some people find it hilarious commentary. Others will be appalled.

At any rate, when Alan is stimming, it is a verbal repetition.

As promised, I will give an expert definition of stimming. This one is from The Oasis Guide to Asperger's Syndrome, p. 25 under the heading Stereotypies:

"Stereotypies (sic) are repetitive motor movements. Often referred to as 'stims' (self-stimulating behavior), examples are hand flapping, finger flicking, walking on tiptoe, rocking, spinning, twirling, chewing, pulling and picking.. Most of us exhibit some type of repetitive behavior....

In children with AS (autistic syndrome), however, these behaviors are different. They tend to be less socially acceptable and more intense, in both their execution and duration. Sometimes, in the midst of stimming, a child seems to be totally out of reach. Parents of children with AS have noticed that their children's stims seem to increase when their child is under stress. Whether they should intervene to stop a child's stereotypies or stims through behavior modification is not clear. It has been suggested that the stereotypies release a child's stress and that if one is eliminated, another will appear in its place...

So, we try to get Alan to say something new. We try to get him to keep Jib Jab to his own room and not anywhere else. We talk with him about what things are inappropriate to talk about in public. It sure does work to get me to suppress swear words when I would love to let loose with them. I don't want to hear them said back to me in some public place.

TGIF

I am grateful that this weekend is not another where I have to rest to recuperate. Although I am not 100% back to normal yet, I am also not coughing much and don't have to have cough medicine and/or a cough drop all the time. I am just a little tired and am not yet exercising. I may try that tomorrow.

Don is on an airplane after a grueling trip and on his way back home. He should arrive late tonight. I will, as usual, be really glad to get him back. So will Alan.

This week, Alan has been stimming verbally to beat the band. It has really got on my nerves, and, sad to say, I have yelled at him for it and also fined him for the most egregious ones. I hope it is just because of the added stress we have all been feeling and with better health and better news, this may taper off again.

This weekend, we have such a full slate of things to do that we will have to work in filming more activities for our RDI consultant. Two I want to add to the CD Don has already been making are silently inviting Alan to light candles with me and using the ball poppers to pass ping pong sized balls back and forth.

Don and I will also continue surprising Alan with unexpected happenings. Dad is the master at this one. Also, I continue to monitor my use of imperative language. I am learning to wait and see if Alan catches on to experience sharing statements and gestures.

Today, we swung the heavily loaded library bag between us into the library for unloading. We came out with few books, though, so Alan slung the bag over his shoulder.

We did shop at Whole Foods almost silently and Alan and I loaded the groceries into the van together. He brought them inside and we put away the groceries together.

At gymnastics, one of the activities was for the two boys to take turns climbing over the balance beams (they are like hurdles). As one finished, he would high five the other and that boy would take his turn. Alan and Wade seemed to be enjoying this activity together a lot. The two of them were alone with the coach in the gym. It is quite different from Tuesday evening when the gym is full of gymnasts of all ages. I am glad for both experiences for Alan.

This weekend, Don will take Alan to Super Science Sunday on Sunday afternoon at the same building where we will have church and Sunday School in the morning. On Saturday afternoon, Don will drive us both to Alan's Actors for Autism Class. Don and I plan on going to Borders Bookstore while Alan is at class. Don plans to purchase some books such as the Choose Your Own Adventure series to read to Alan because Alan is not listening to the content of The Hardy Boys and Don is tired of reading them. Usually, Don reads to Alan when Alan has gone to bed as part of Alan's bedtime ritual. I am going to look for a book I could not get at the library today as the one copy was out. The title is Unstrange Minds.

In between the planned activities, I will rest and put things away that have accumulated on surfaces while I have been ill. It is such a big job because I rested three weekends and have been sick for five weeks now. I sure wish I could delegate this one, but I will offer myself some kind of reward and do the best I can in short bursts.

Now the dryer buzzer is calling me. Laundry is light duty but also needs to be caught up.

I am glad to be back to being somewhat productive.

My Own Methods of Comforting Myself

Circumstances have conspired recently to make it necessary for me to find ways to comfort myself. It occurred to me that some of my ways would be weird to others. It also occurred to me that some people might want to try some of the things that work for me.

Today, Alan and I were alone on a day when the sun did not shine all day. It began foggy and stayed dank and overcast, like I imagine Ireland to be much of the time. I also recognize that I need to move more. I had to break in on Alan's verbal stims, too. I asked him to put some music on the CD player. He found some 50s music beside the machine. He asked me if that was what I wanted. I told him sure. This was music familiar to me from ages 9 or 10 until 14 or 15. I taught Alan to jive. We danced to Elvis, the Everly Brothers and Little Richard. Most teens haven't a clue how to jive, I'll bet. Never mind. Mine can now. Blast some music with your kids. Dance. Find joy.

It isn't the best of times for Dana. I know that she enjoys humor, especially, perhaps as it might pertain to single moms of teenage boys. In better times, Dana belongs to a book club. I have also been in book clubs before. So, I decided that I am the family book club facilitator. I have heard Anne Lamott speak when Cate arranged that she and Dad would take Alan to the beach and I would be deposited at and picked up at an Anne Lamott lecture in Hollywood. Anne Lamott's new book was reviewed in today's Los Angeles Times newspaper. I still read newspapers, three of them on the weekend and two during the week. Also, the Wall Street Journal when Don brings it home from work to share with me. Reading is a quaint way to comfort oneself, but there you have it. I ordered a copy for me and one to be sent to Dana. Grace (Eventually) is the title of Lamott's new book and maybe this phase of my life.

Braces!

Alan had dental surgery in January to remove two secondary teeth that were deformed. The orthodontist felt that this was the best way to make room in his mouth for all his teeth in his upper jaw. We went with his expertise. We were apprehensive about the surgery because we had had a terrible time with it at UCLA for several reasons when he had had his first dental surgery. This time, though, we were treated well and Alan was, especially. His only problem was a little bit of nausea and he made it through the surgery fine. That left two huge gaps in his mouth. I was afraid that he would not tolerate closing up those gaps with braces and we may have made a bad choice.

We convinced Alan that actors and politicians need to have healthy mouths and nice smiles. Also, we pointed out two boys he know who have braces and commented positively on people with braces. Last week, he had some elastic bands installed in preparation for the actual braces. This morning, both Dad and I went with him to the appointment to have the braces put on. It all went smoothly. He accepted everything. We all had to watch a twenty minute video on taking care of his teeth while he has braces on. This will be the main challenge.

Last fall, he got a terrible dental hygiene report and they have never been very good since we stopped brushing Alan's teeth for him when he was seven or eight. I started to brush and floss each evening with Alan in his bathroom, modeling for him.

Last night, he demanded that I come and brush with him. I finally did to keep the peace, although I am still ill and need rest. I needed to clean my own teeth anyway. However, I was not up for the next complicated steps and Don went in and did them with Alan. First, he brushes with his regular electric brush, which we did together. Next, Dad helped as he has a special tool to get in under the braces. After that, each individual tooth has to have floss threaded under the braces to reach the side of each tooth and under the gums. And, we will also be having him rinse with the disclosing rinse he hates every few days.

We need to get Alan to do his evening routine of dental hygiene earlier in the evening, not just before bed when everyone is tired and wanting to cut corners and get to bed. If that doesn't work, we can move the flossing to after breakfast.

Since there are so many teens and adults with braces now, there are many products on the market in the drug store the hygienist told us. I used to have a water irrigator, but gave it away. We may need to get another for Alan's use.

We did get some Motrin for pain as we were told he would have some. We asked him a couple of times if he had pain but he said he did not.

Also, he has wax to mold over any part of the braces that is rubbing on his gum.

I see many kids who are tolerating braces all the time. None of them, though, that I know, is autistic. One thing about Alan's autism that may work in his favor is his need for routine. Once he has learned all the routine of keeping his mouth clean while wearing braces, I am hopeful that he will not only do it, he will insist on doing it, no matter if it is inconvenient or impossible, such as not being able to use the electric tooth brush if the power is out. We will have to convince him that the manual brush still works. This is one static system, for those of you who know we are doing RDI, that we need to maintain.

We also need to figure out how to turn the timer on the electric brush on, as he doesn't know how and I don't know where the manual is for that tooth brush. Fortunately, Cate and Jim are coming to visit at the end of the month and each of them has the same model. Alan is also more likely to comply if Jim or Cate show him. Right now, he is using the little egg timer that came in his kit, but it does not time 3 minutes. I have to admit I am bored and feel that my teeth are clean enough after one minute, not three. I wonder if music would help us both tolerate the three minutes of brushing?

Tonight, Alan was already asking several times when he could get braces on his lower teeth. To think that we worried that he would never tolerate having braces on his upper jaw, never mind his lower jaw at the same time! Bravo, Alan!

Productive Uncertainty

One of the things that we parents are supposed to do in RDI is to provide productive uncertainty. So, yesterday, Dad and I worked out some tactics. First, when Dad left for work, he put his jacket on backwards with the closure in the back. However, Alan didn't even look up from cuddling his dog, Pepper, because Dad had done this before and Alan was onto him.

When Don came home from work, I suggested that we set the table. This is usually Alan's job, but he was on the treadmill still, which he has been doing later and later in the afternoon. Don set the table, with my place in Alan's place. Then Don proceeded to make a newspaper hat and put it on his head.

When Alan came down, he asked Don to take off that silly hat. Dad replied that he liked his hat. Alan tried again and this time, swiped at the hat. Dad successfully dodged and repeated that he wanted to wear his hat. Alan told his Dad that his hat wasn't suitable. Alan managed to grab it after more verbal protest and tore it up!

When he had his corn ready, he came over and tried to get me to go to my usual place at the table. I refused and told him I wanted to sit there today. Alan objected and said we had to go by his rules or he was going to become a demogogue dictator, which he has threatened before. Then he took up a rubber band and shot it in our direction. Dad told him to cut that out and come to the table and sit where his placemat was. Alan refused. Eventually, after much haranguing us, Don told Alan that he could be registered in school if he didn't behave. Or maybe Alan didn't want Pepper to live with us anymore. Finally, Alan stopped shooting rubber bands and came

to sit at the table. I realized he would move back into his usual spot when I was done, so I gave Don the job of sitting in that spot to finish eating. He did that, and then took up the newspaper to occupy himself with until Alan finished eating. We talked with Alan calmly about how he needs to stop with his demogogue dictator response to not getting his way and how it makes us feel when he tells us he is going to do something bad if we don't comply with his ideas of what should be taking place. We are aware that other teens give their parents verbal abuse. In fact, on another list I am on with parents of typically developing teens, parents are complaining about drama and nastiness every bit as bad as what Alan was doing. It is just over other "unfair" changes in their plans parents are making such as requiring them to go to visit grandma or having the child go to church with the family. The moms on this list are commiserating with each other and those of us who have raised reasonable adults and lived through the teen years are telling the moms to stand firm with their requests.

So, we need to find more opportunities to break up static situations. The thing is, we have had years of trying to make Alan comfortable by setting up routines. Now, though, we have to teach him to be flexible and to be part of the family. That means we, the parents, are in charge, and his "schedule" has to include our requirements as well as many changes in routines and plans.

Keeping On Keeping On

I have been really ill since February 18 and this is March 13. Last week, I was diagnosed with pneumonia and pleurisy at Urgen Care. I had a virus but eventually a bacterial infection set in. When I went in to see the doctor, I sat under a scolding poster which said, "You have a virus. Please visit our pharmacy for OTC help for your symptoms." However, the doctor listened to my chest and the crackles, and without an x-ray the first visit, just his experience, he said, "You have pneumonia. I am prescribing an antibiotic." I began taking it that night. The cough medicine with codeine was a blessing, too, as for the first time in two weeks, I got a full night's sleep and was not awakened several times with coughing spasms. I still had to sleep elevated some, and I could still hear crackles when I breathed in.

People said I needed to rest. I had two different weekends where I rested the entire weekend. However, during the week, I have to go to many of Alan's activities. I did not go to several of them. Some we missed.

At the follow-up visit on Friday, March 9, I did have an x-ray which confirmed the pneumonia with pleurisy in the right lung. That was the second weekend to rest. On Monday, I taught Alan "short lessons" in the morning, did some minimal housework and we went out to take him to Teen Center in the afternoon. We had to return, with both of us disappointed. Apparently, Teen Center has a two week hiatus. Probably they would say no budget for continuous Monday sessions. On Mondays, the special needs kids can go, most Mondays. Of course, typical teens can go any day of the week. I'm not bitter, am I? So, while Alan went on the treadmill, I sat at the computer doing e-mail and surfing, looking at new vehicles to replace my van instead of lying down and resting fully. In the evening, I watched MythBusters with Don after he made dinner and cleaned up.

Today, Alan's speech class was on using AV and I took him. Nobody used a spectacular AV item except the first boy. He brought his bearded dragon lizard. Wonderful visual aid. We left early. I needed Alan to get his lunch without getting agitated. We had a 1:30 appointment at the Regional Center in Simi Valley where we finally asked for some help. Two doctors met with us to interview Alan and ask me a few questions. I could not miss this meeting because it has been set up for a month. Also, it will take another six to eight weeks to get a service provider, read social worker, assigned to us with more questions. Will we ever get any actual help, I hope? The meeting with the service provider will be about four months from the first meeting which itself took three weeks to get.

Don is on his way home now to assume the role of Dad after doffing his breadwinner hat. He will drive Alan and me to Alan's Tuesday gymnastics session. Alan gets so much out of these that I am sorry to say we have missed a couple during my illness and his two. Yes, he had the influenza virus I had at the beginning, got well, and now has a cold.

Last week, we didn't make it to Spanish class for the second time. We will do his Spanish homework instead of math in the morning if he can be flexible enough. Then he won't be at sea during the class. In the afternoon, I will sit in the car and read while he has his music lesson. Then we will go back to the Kaiser office to see if they have a lost and found. The last place I remember having my brief case is in the pharmacy while waiting for my refill of cough medicine with codeine. Then I can come home and rest.

Getting rest inbetween all that I have to do is my goal so that I can get rid of the last of the pneumonia symptoms and gain strength.

Does my doctor want to see me for a follow-up? No, of course not. See me in a month unless your temperature goes above 101.5 degrees F. she insisted. She is a numbers gal. I would like to replace her but I think she is a lot better in manner than the male doctor I saw at urgent care. He remarked that my husband shouldn't have to listen to that cough anymore. The x-ray tech was more understanding. She said when I left, "Feel better." She should have been a doctor.

My daughter, the M. D., is a comforting person to talk to. A big part of the practice of medicine ought to be empathy, don't you think? She exemplifies empathy. She checks on me, answers my questions and if she can't answer them, tells me so. She encourages me in my quest for better health through nutrition and exercise.

My other daughter, too, has a lot of empathy. She can make me feel important to her and she listens to the details of my life. We need more like these two in our lives.