Two Weeks After Surgery!

July 21, 2020

Yesterday marks the 2nd week post surgery and I am doing well!  My Physical Therapist needs to keep checking the date of my surgery as I am looking more like a person a month out of surgery.

My energy is odd; one minute I have lots of energy like I used to, the next I need to lay down to sleep.  

My sleep pattern is odd, 36 hours awake and then 12 solid hours of sleep.

I should be returning to teaching at the beginning of August.  I need to take a poll among my students to see what kinds of hours I should be teaching.  As school is unlikely to look anything like it has for a century I suspect that my teaching hours will be unusual.  I'm thinking that I may a "Supervised Practice Session" option to my teaching possibilities.

Re-starting the Blog

Saturday, July 4th, 2020

Re-starting the Blog

I have chosen to restart my blog.  I am in search of finding a genuine way to communicate with family and friends to replace my irregular posts on Facebook.  

I can no longer tolerate the way that both Facebook and Twitter have been hijacked to spread propaganda designed to destabilize this country.  Particularly as both those platforms have allowed dangerous-to-fatal misinformation to spread during a global pandemic I will no longer support these social media sites.

We come now to you, Gentle Reader; what would you like to see on this blog?  How can I best communicate with you about the things that you are interested in?

My current thoughts are to include:

• General news about my husband, Mark
• Updates on Stelle and Gene
• Funny cat stories/pictures
• Garden updates with pictures
• My current reading
• My current recording/video projects
• Current adventures establishing the Archetto library

Sunday, July 5th, 2020

General News

Today is the day before my shoulder arthroscopy, so I spent it getting the last of the household in order.  

Our cat, Lightning, now drinks from a beautifully clean fountain with a fresh filter!  Lightning has not deigned to notice my work.

My ballot for the August primaries has been mailed, the two surveys from the state about my relationship with the special needs services provided for my children is in.  The survey from the VASD regarding my thoughts about going forward during a pandemic is in.

Mark had a solid interview with yet another recruiting service and then the initial interview for a job.  While he is still technically on furlough, he is hoping to find something better.

Mark has also been enjoying spending more time with the children and has even managed to get all of us into a round of "Ticket to Ride."

  Lightning

Lightning is fascinated when the printer sucks the paper back in to print on two sides!

Children

Stelle is in quite the growth spurt!  Mark cooked two pounds of chicken yesterday, ate one thigh, and the rest seemed to magically disappear!  Then she slept for 14 hours. This morning(?) she ate two eggs and then continued to munch throughout the day.  Can we spell Growth Spurt?

Gene continues his explorations into the world of computer art and directing the evolution of imaginary species in Spore.  He has also conned his father into a 2 player game of Ticket to Ride.

Gardening Adventures

I have spent much more of this weekend than I expected to trying to finish the drip irrigation system for my deck garden.  Yesterday I must have spent 2 hours reworking some of the irrigation lines to work in four new plants and balance the pressure.  Then, as long as (oh, no! an ALA!) I had the equipment out, I decided to replace some of the sprinklers that were, sort of, watering 2-3 containers.  I set up a drip line to each individual planter, carefully setting up a perfectly sized circle that I could easily hide between the containers.

Alas, today when I ran a water check, I discovered that all my careful work had created this perfect circle that was. . . wait for it . . . NOT connected to the rest of the watering system.  In figuring this out, I pulled out the whole circle so it is no longer hidden.  I spliced a water feed in and now the all the lines won't fit back in. Oh, Laura, please notice that your ninja gift is now the center of the display and doing a fairly good job hiding some of the tubing.

Reading

I usually keep about three books going unless something really grabs my attention.  Currently, I am reading

• James A Corey; Leviathan Wakes
• Neil Stephenson; Some Remarks
• Christine Valters Paintner; Wisdom of the Body

Recording, Videos and Web-Page Construction

I have managed to create my first video (that I'm willing to share).

JS Bach; Suite #3 in C, Prelude

I am still not happy with the angle of the camera and it somehow started filming in landscape rather than the portrait mode that I thought it had been sent for.

I did, however, finally manage to set my fancy microphone so that it picks up my sound properly.  Through that I was able to run the sound track through a program called Audacity which allowed me to do things like 

• add a little reverb so it sounds like I'm playing in a bigger room
• add a limiter so that it doesn't overwhelm the speakers that it plays through.

Alas, the learning curve seems to be steep for the video effects that I was playing with, so there are none here.

And yes, I know I make funny faces while I play.  More things for me to work on. . . .

Archetto

Archetto is still moving, but really slowly.  Finding the time to work on it has been really hard during this pandemic.  It is currently morphing into a library for my teaching materials.  Follow:

• Archetto
• Viola
• Solo
• Marcello
• Adagio or Allegro

to see what it currently looks like.

It was NOT a beautiful day!

I will try to always write these blog entries in pairs of difficult and upbeat.  This may mean that the upbeat ones are short and cutesy, but given the daily workload, I take whatever I can get for a laugh.

Gene is put through various programs by his therapy team to help him learn the skills that he will need in life.  Right now, those skills are mostly focused on being able to function in school and learn.  One of the regular programs that lately has been happening in every session has involved a therapist reading a very short story to Gene and then verbally quizzing him on the events and descriptions of that story.  This is the simple reading comprehension that is really at the root of most schoolwork.

The other week Gene was in no mood to cooperate with his therapists.  The official policy has been to wait out his moods until Gene moves into compliance.  The theory is that once Gene realizes that nothing fun will happen until he does what he is asked, the wait time will get less and less.  I have no idea if this is working yet, but the technique has a long history of success in other children.

So Gene is refusing to cooperate with his therapists and the next item on the schedule is one of the short stories.  The therapist has been waiting an hour with no luck and the end of her shift is coming.  The therapist is also trying to train a new therapist who will be joining the team shortly.  In frustration (something I rarely see in these marvelous therapists!) this professional reads the story to Gene over his vociferous objections.  In order to demonstrate how the program is supposed to work, she begins to ask the first of the questions, expecting no cooperation out of Gene.

Gene begins yelling, "It was NOT a beautiful day.  They did NOT go fishing on the boat and they did NOT catch a big red fish!"

Yes, Gene has figured out how the program works, has figured out how the pattern of questions work and is explaining that he will not cooperate.  The therapists somehow keep from laughing out loud (I certainly couldn't!) and finish their notes for the session.

Relaxing at a Party; the Big Mistake

My husband and I are part of a large network of friends who often have parties. These parties are wonderful for us as they assume the inclusion of our children.  These parties start in the afternoon with children running about, having a good time while the adults catch up and enjoy one another's company.  I have often seen people at these events taking a little siesta under a newspaper in a corner.  No one minds, we almost all have kids and we all know just how tiring life can be.

Two years ago, one of our friends had a housewarming party and Mark and I decided to risk it and bring both children even though we did not have the support of one of Gene's therapy team.  Our older son really wanted to see all his friends.  My husband and I had not seen too many of our friends for far too long and we had missed them.  We did agree beforehand that we were going to take turns watching Gene in 30 minute shifts.

The shifts worked well for the first two hours.  Then, at a shift change, some of our friends started talking about their latest Disney trip and my husband and I made the mistake of sitting down for "just a minute" to listen.  I could see Gene on the outdoor trampoline and he was having fun and he was safe.  So I talked for a "few more minutes," so happy to chat like a normal couple with our friends about normal things.

And then my older son was at my side with three of his friends.  They wanted to get on the trampoline, but there were only four allowed on it at one time and Gene was refusing to get off.

I looked at the time and realized that the crucial ten minutes had passed and that I was in trouble.  Every autistic child has a certain amount of crucial time that they can spend on one activity, then they must change focus or their minds can get completely locked into that activity,  Once that lock occurs, removing the autistic child becomes, well, I guess I'll use the word challenging.

Now the funny thing about this locked state of mind is that the autistic child, or adult, will live completely in the joy of that particular present.  It is a glorious place to be, completely in the Now, and people who meditate seriously deliberately search for this state of mind.  Autistic adults deliberately avoid it.  I remember listening to Temple Grandin explain in an interview that there were certain screen savers that she could not put on her computer because she could lose hours dreamily watching them.

So there is Gene, completely lost in the joy of bouncing on the trampoline on a glorious spring morning with the sun dappling down through the trees.  And here are four other boys who have been patiently, politely waiting for 20 minutes for their turn on the trampoline.

I go to Gene and start trying my new skills, recently learned from Gene's new therapy team, to try to foreshadow Gene leaving this joyous trampoline world and letting some other children have it.  Gene ignores me. Not on purpose, he is simply too lost in his world to really register the words that he is hearing from me.  I finally physically take hold of him to bring him back into our world, breaking the spell.

Gene hits me.  Instant time out.  I grab him close to me, off the trampoline and turn into an empty corner of the yard.  I am informing him that hitting is not acceptable and that he is in time out as I set him on the ground.  The wailing begins.  My husband and I recognize this kind of fit, it is one of the long ones and there is no shortening it, not for love or money.

We alternate saying good-bye to our friends and packing up our poor older son who is now regretting ever wanting to get on that trampoline with his friends.  I am kicking myself for having gotten distracted from Gene.  Since his time out is over, I go to him to take him to the car.  Gene is not cooperating.  He wants back on the trampoline.  I have to pick him up and carry him, screaming and struggling, to the car.  I have to hold him down and fight to get the seat belt around him.  My husband has to threaten dire consequences if Gene keeps trying to take the seat belt off.

Then the reality of suddenly grabbing 50 lbs of struggling child, then hoisting it to the car sets in.  My back has gone out, badly.  Very badly.

By the time we have arrived home, 40 minutes later, Gene is still screaming about wanting to get back on the trampoline and my back has hit a 6 on the pain scale.  I dive for the serious pain killers.  Jacob, who has been covering his ears from having had to listen to his brother scream next to him for the entire ride home, finally gets to escape and buries himself in a computer game.  I abandon my poor husband to deal with the screaming Gene.

This story spins itself out over the next three weeks.  As my violin and viola students are just about to play their youth orchestra auditions followed by the Studio Recital, I re-discover one of the great disadvantages of being self-employed; there is no one to take over for me.  I spend the next three weeks teaching through an injured back.  I run out of prescription pain killer in the first week.  We have no health insurance, so I cannot see a doctor (who would just tell me to rest while prescribing more prescription pain killer) so I do the best I can with Ibuprofen.  I then learned an important life lesson; you can get headaches from taking Ibuprofen for too long.

But the truly important lesson that I learned was that unless I brought support people with me, I could not take my attention away from Gene.  Not even for a few minutes, not even once.

Horseback Riding Therapy; the trial session

There are so many kinds of therapy available for autistic children!  So many claims of "cures" with so little in the way of supportive data that I often want to scream in frustration.  When I first heard of horse-back riding therapy, or Hippotherapy, I was originally quite cynical.  But the first stage of Gene's Medicaid Waiver had gone through and this was one of the few therapies that was fully covered.  So, I began my research.

To my pleasant surprise, Hippotherapy has a history going back into the 1950's for many kinds of physical and neurological conditions.  A good history with a proven track record of repeated successes.  So I found a local stable that specialized in Hippotherapy and made an appointment for a trial session.

I prepared Gene as best I could.  I explained riding and showed him video clips on YouTube of children riding horses.  Gene seemed a little withdrawn and disinterested during all the explanations and walked away from the computer during the videos.  I could only hope that it wasn't too overwhelming.  Gene was 5 and weighed in at well over 40 lbs, mostly muscle, and was difficult to physically handle if he was having a fit.  He was also practically non-verbal and so it was pretty much impossible to negotiate with him. He could understand a good sized number of words, particularly for his age, but his speech was, at best, monosyllabic.

The day we went to the stable was a warm day in early Fall.  I came in with Gene who immediately began to cry.  He would not go near the horse.  He would not go near the mounting block.  The only thing that he would tolerate, oddly, was the riding helmet. After 15 minutes of crying, I finally started making "I'm sorry to be wasting your time" noises at the therapist and prepared to start taking Gene home. The therapist kept talking to me, encouraging me to make another appointment to see if familiarity with the stable would help at another trip.

I was about to try to make my excuses to leave when I noticed that the noise level was down.  I looked over at Gene and saw what I can only name "The Reset" look on his face.  He got up off the ground, deliberately wiped the tears off his face as though he was trying to wipe away his entire upset, and walked to the gate.  The therapist opened the gate and Gene marched up to the mounting block and before the therapist knew what was happening, clambered onto the patiently waiting horse, just as he had seen in the videos that I had shown him!

The stable volunteers, stunned by this sudden change, awkwardly got in place surrounding Gene on the horse to keep him balanced and from falling off.  The therapist began to put the horse, named Beau, through some simple exercises.  The therapist was even getting Gene to say "Walk On!" and "Ho!" to get that incredibly well-trained horse to walk and to stop.  Gene was so comfortable on Beau that they even walked outside and past another paddock of horses.
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After this amazing success, I immediately got Gene onto the waiting list for the stable and then took him home.  At this point in his life, Gene's memory was only good for about 10 minutes.  So imagine my surprise an hour later, when Gene correctly told me the name of the horse that he had ridden.

And then my non-verbal child did something completely new; he babbled!  Oh how he babbled!  He babbled about. "Beau walked when I yelled 'Walk On!' and stopped when I yelled 'Ho!' and Beau walked around the barn and Beau walked outside and Beau ate some grass and Beau saw some other horses and said 'Neigh' and . . . ."  Just like any other 5-year-old who had just had an exciting experience!

My heart sang!

An Introduction

I am the mother of two young sons, one falls on the autism spectrum, one is considered nuero-typical.  I have recently become aware that while there is starting to be a great deal more information available about autistic children, there does not seem to be much realistic information available about the parents.  Since I also have periods of insomnia as I try to process my daily life experiences in trying to raise these wonderful children of mine, I thought that I might write a blog to help myself out.  Many of my experiences are negative, but the victories are incandescent!  I find myself wanting to share both.  Mostly so that I can remember them, but also so that the other parents of autistic children out there can find some camaraderie.

For my fellow parents of those special autistic children, my hope is that you will know that you are not alone.  That the day-to-day difficulties that are invisible to the people around you are, in fact shared and appreciated.

I have no religious or political flags to wave here, this is a place about my children and about my attempts to raise them.

The Supermarket

One of the less than wonderful joys of raising a child with autism is the supermarket run.  Think for a moment about a supermarket; many, many bright colored packages developed by marketing experts to grab the eye from among shelves of other bright colored packages.  Fluorescent lighting, generally disturbing to the average person (the buzzing sound gives me a head-ache) and lots of impatient people trying to get through the store as quickly as possible. A supermarket is overwhelming on so many levels! Still, I have to buy food, I have to go shopping, and there are only so many hours in a day, so sometimes I have to bring my children to the supermarket.  Yes, even the autistic one.

This particular day I had managed to get my sons into the store and even into a cart.  This was a major deal at the time.  My elder son, Jacob was 5 and my younger, autistic son, Gene was almost 3.  I had not yet gotten onto the Medicaid Waiver, so I had no help and no training, yet, on how to cope with Gene.  

Gene found the world so confusing and overwhelming.  All he wanted to do was to be at home in an environment where he was comfortable.   And home was not that comfortable either, my husband's company had just been sold and his commission structure had been "adjusted" to the point where we had to downsize our home.  Gene was still not comfortable with the new house and he did not, in any way, want to go to the grocery store.

I had gotten my children into the cart when Gene decided that he was not going to have anything to do with this grocery run.  He began to throw a fit, a very loud fit.  Arching his back in the cart and screaming at the top of his lungs, oh boy, did he have a fit!  People began to stare at me.

I began to try to soothe my poor Gene.  I sang lullaby's, I tried to stroke him and my elder son tried to explain that there was no milk in the house and that we had to go shopping.  The cashier nearest me got on her phone.

I tried to pick Gene up out of the cart to hold him and rock him, but he was fully into his fit and I could not pry his legs out of the metal seat. All my attempts to soothe only increased the rate of his screaming.  The store manager came to me and with stiff politeness asked if he could help.  He clearly wanted me and my family out of his store.

I explained that my son was autistic and that if we could all be patient, Gene would eventually get past his discomfort and I could get my shopping done.  The manager attempted to explain to Gene - really to me - that the noise level was making the other customers uncomfortable.  Gene looked at the manager with huge, tear-filled brown eyes and screamed into his face.  After a few more moments of fruitless explaining, the manager walked away.

A grandmotherly type trundled up to me.  She looked over my situation with an experienced eye and said to me frigidly, "You should be ashamed of yourself!"  Then she walked away.

The tears began to slide down my face.  Jacob, 5-year-old Jacob with his cherubic blond curls and huge blue eyes, Jacob who had never known any adult to be deliberately unkind, asked me, "Why was that lady so mean to you, Mommy?"

My voice breaking, I answered, "I don't know, honey.  Some people would rather be mean than offer kindness or help.  I wish it were different."

I gave up and wheeled my cart out to the parking lot.  Gene, seeing the familiar car, unclenched from the shopping cart and allowed me to move his screaming self into his car seat and buckle him in.  Jacob, independent from far too early an age, buckled himself in and asked me over his brother's crying, what we were going to do next.

I got my tears under some kind of control and tried to think.  I told him that we were going to take a long drive out of the city onto farm roads until Gene fell asleep.  Then I was going to drive to the gas station near our house that had a little market, leave the two boys in the car, and quickly slip into the convenience store to least get some milk.  

And so we did.