Waterloo

This is a place marker for a post on our revelation on our family trip.

Family Vacation

This is a place marker for a post on our super awesome family trip taken in July.

Summer

What to say about this summer?  Well, first off, people may not believe it but Duluth has real summers.  Yes, we have real winters where it gets down to 25 below zero and many feet of snow lie upon the ground, but this is a summer of blue skies and 85 degrees.  Right now everything is green and the breezes are soft.  Sure, we had a bit of a flood at the Solstice, but other than that it has been summer as usual. 

For me, it is a true summer off.  I am switching from one job to another, and had two glorious months off.  There were a few points of boredom and unscheduled I-did-nothing-and-hate-it half days, but mostly the summer train has been rolling along.  Alex and I have had many adventures, and most of them with Kevin too.  We have been camping up the North Shore of Lake Superior, swam in the big lake, and the rivers that run into it.  Alex started the summer with a week of acting camp and a starring role as The Strongman.  We have been doing lots of PT at home, and hiking/biking/playing away from home.  Drumming is a constant companion.  And there have been play dates and birthday parties with many a friend. 

I have tried to keep us to routines, and also added in an academic focus.  I want to be able to hit the ground running for third grade, going forward instead of the usual summer backwards slide.  We don't have time to lose!  Not that it is a big grind, just enough to keep skills up.  So, if he wants things, like computer time, he has to work for it.  We keep his screen time to a minimum, but it sure is a good motivator for writing and arithmetic.  I have also been reading up on anxiety, which came up several times as a challenge at school.   Now he works for "Bravery Points" too, and we are implementing "planned ignoring" of overly anxious behavior.  It got a little worse at first, but things are starting to click now.  More on that another time.

What other summer fun?  Had a truly fantastic Fourth of July with friends, culminating in fireworks on the rocks of Lake Superior with lighting in the background and a red rising moon.  Wow.  There have been several whitewater trips, and Alex even got accidentally dumped in the river with his parent, twice.  The bravery strategy is working, because we got him to go out again the next week.  He is now swimming like a little fishy, after a two week intensive where he had swim class every day.  Good thing since it has been so hot. 

And then there was a day at the fair.  Alex completely rocked it.  He was engaged with his friends, and the farm animals too.  He ran with the crowd, and even went on his first bumper car ride.  If only I had had a camera, his delighted grin was priceless!  He tackled half a dozen fair rides with gusto, topping his previous record of two.  It was hot, and a little unfocused at times, but my boy who could never deal with either of those situations, held up great.  No total meltdowns, only a low spot or two.  He watched the kiddo horse competition with concentration, and was sad we couldn't stay to see his great friend compete in the afternoon. 

Oh yeah, and then there was the birthday party out at a lake cabin, where he swam with all the kids for hours.  His dad and I did not have to be next to him the whole time, and that is a new miracle.  He had great fun, and then caught 15 fish at the end of the party.  Yes, fifteen.  His dad had gotten a rod out, and the sunnies were so hungry they bit every hook that come by.  Ahhhhh, summer fun. 

So, here we are, and it is not quite the end of July.  Summer has been good to us so far. 

Once Upon a Time, on the Way to the Circus...

Once upon a time, I would have loved to go to the circus.  (That was when I was a child.)  Once upon a time, I would have scoffed at the idea of going to the circus.  (That was when I was too enlightened to go to a circus.)  Once upon a time, I was shut out from the circus.  (That was when I could not go if I wanted to because my son could NOT handle it.)  Once upon a time, I went to the circus.  (And here is what happened...)

My son looked up as we were driving down the freeway and said, "I want to go to the circus."  I looked back quickly and said, "What?!"  He repeated himself, and I believed my ears as I scanned the area and saw the billboard.  "Okay!",  I yelled.  Even if I had known the circus was coming to town, I doubt I would have asked Alex to go.  I had gotten so habituated to his turning down flat every offer of anything most kids would die for, that I had all but given up.  He is eight, and had never been to an arena event.  Had no interest when Barney came to town, or Thomas the Train.  No Walk With the Dinosaurs, or Wiggles concert.  Not even a concert of the Lollypop variety.  We did get through a few Movies in the Park, but that has been about it for kid events.  Not that I have been that sad.  All these things are usually too consumer oriented, too expensive, too crowded, too long of a wait, too loud, or all of the above.  I thought I was okay about missing all that.  I would hear about other families going to those events and figure I hadn't really missed much.  Not really.  Probably sucked anyways.  Would have been a nightmare if we had gone.  No worries.  I'm cool.

All those "too's"  fell by the wayside when my fabulous boy spied that sign on his own, read it on his own, and made his own decision.  I was pumped.  But also cautious.  A rather loud voice in my head piped up with, "You are going to have to leave early.  He might not even make it through the door.  He has run from every clown he ever met.  You must be nuts."  I tried very hard to ignore that voice, but I was torn, so I dragged my feet.  Weeks went by.   By circus weekend Friday the tickets were still not bought.  Kevin had to go on an adventure to secure them, and bless him, he did.  We were both prepared that if we had to bail, we would just consider the $35 buck a donation to the Shriners.  Alex was a bit of a mess Circus morning.  He was trying to back out, and we were not letting him.  I thought of Temple Grandin's advice that you must stretch your kiddo with autism, and I thought about the PRT strategy of offering choices.  So, I told him he had to go, but he could choose if we stayed for half of it, or if we stayed for more.  There were tears.  There was fuss.  The refrain, "I told you so." rolled through my head.  We went to the circus anyways.

It was great.  Not too crowded.  Not too loud.  No long waits.  No sales pitches we couldn't dodge.  The tears hadn't even left the house with us.  Kevin and I were much more nervous than our boy.  He looked around.  He checked things out.  He even had some spontaneous questions.  He pointed things out and kept his eyes on the action.  Never once asked to leave, or showed any distress.  Except when a surprise firecracker went off when a balloon was shot with an arrow.  We whipped out his earmuffs, and he threw them on and didn't miss a beat.  We did also stack the deck a bit by sitting pretty far back from the action, but I don't think he suffered by that.

The performances were fun.  There were white tigers, prancing horses, mighty elephants, and pretty girls.  He really seemed to like the kid his age who was flipped around by his dad, jumped off a swinging platform into a net, and got to juggle fire.  He was spell bound by the motorcycles that drove upside down in a steel ball, and the  high flying gals on circle trapeze, silk ropes, and rings.  The pace was good, but not too crazy.  The sound was just right.

He didn't ask to go on the floor before the show to ride the elephants or ponies or go down the big slide.  He didn't want his picture at half time with the performers, the clowns, the tiger, or a snake.  He didn't ask for junk food (we got him some anyways) or beg for the plastic light up junk.  So I guess we are a bit off the pace for normal, but really not too bad.  I am hoping there will be discussion and questions ongoing.  We bought the program and coloring book to help that happen.  Maybe I will look up circus books at the library.  Yeah, I guess I will.   I have to admit, I already snuck in an "I told you so" or two.  I couldn't help myself, and he does seem rather proud of himself now.

The circus!  The circus?  The circus.  Once upon a time we went to the circus, and I never knew we would.  It feels like we are turning the corner.  Heading in a good direction.  Doing great.  The skeptic in me feels nervous, but the rest of me feels fine.  Maybe even more than fine.  Only time will tell, of course.  Tell if this is a blip, or this is the future.   Tell if this is a starting point, or just a high point.   I have felt fine before, and then gotten creamed, so I wont be taking any bets.  But I have a hopeful feeling, and I look forward to seeing what is around the next corner.  I guess I will just keep walking on towards the future, whatever it may hold.  Elephants, pretty girls, tigers, and all.

Interesting Developments

Overall, it would be really helpful to have a typical child first, and then have a child with autism.  If you got to choose, that would be the ticket.  As it is, I am never quite sure where we stand at my house as far as development goes.  I know we used to be way behind in many things, especially social and emotional development, but then over the last few years I have often felt like we are catching up. Once upon at time, we worried that our child would never speak.  Now we worry that he never shuts up.  Once upon a time, we worried that he would never engage in pretend play.  Now we have a hard time stopping him from pretending.  Once upon a time we bemoaned the fact that all toys were ignored in favor of light switches and sliding glass doors.  Now our house looks like a toy bomb went off in it.  And once upon a time we worried that he would never engage in play with peers.  Today, I am currently exhausted from two days of non-stop play between Alex and his great second grade friend Lily (which happens to be his current grade too.)  It must be noted that she is a very tolerant play mate, but the fact can't be ignored that they played for hours in a cabin out in the woods.  They played pirates on the bunk beds.  They talked back and forth on walkie-talkies.  They made a cave in a closet. They built things with the cushions and furniture.  They played hide-and-seek, and ghosts in the grave yard,  and let's push snow into a creek, and now we'll stir muck up with sticks in the pond.  They PLAYED, and I barely had to prompt or intervene.  I am happy, and tired, and loopy, and giddy.  But I still don't know exactly where we are.  Because then the other mom said, "I don't know how you do it, you are so good at working with him."

Oh, how I hate statements like that.  Not because they are not genuine, or even because they are not true.  More because they are true.  My son takes a lot of work, and he takes more work than other kids his age, but I tend to forget that fact.  In our day to day world of hard work and accomplishments I celebrate the forward movement, and file the rest in the circular file.  And I truly forget, at times, that we are on a very different path.  But reality always comes back, and actually it is not that bad.  It is just that right now, my son talks incessantly, more like a four year old than an eight year old.  He is constantly asking questions, which is wearing and thrilling at the same time.  Because he didn't do that back when he was four.  We had other things going on then, so now we get that barrage while other parents are enjoying the quiet of constant readers or game players or i-pod listeners.  And really, it is all good.  Every real question he initiates moves him towards a bright future, keeps me smiling, and makes all the work worthy.  And although part of me hates reminders that we are not typical, there is another part that does not care, and even has a growing pride in our accomplishments and his hard battled development.  Every new stage is a victory to be celebrated, and I need to remember that most of all.
   
Which leads me to my current amusements, and the reason I started writing in my near exhaustion state.  Alex has started initiating more and more novel things over the last year, trying things rather than staying in his safety zone.  Branching out in new and interesting ways, often when I least expect it.  So, what now?  Well, after getting home from our long days of adventure I figured he would mostly be ready for bed once he was back to his routine.  Imagine my surprise, when after his bath he says, "I'm going to do secret things.  Stay here.".  Outside he goes, in boots and pajamas.  I see him scouting around the yard.  A few minutes later Kevin comes in and says, "He's digging."  "Really, where?"  "In your garden."  So, I go to peek out the window, and there he is, digging in the empty garden.  Then he stops, goes and picks up a tin pot, chucks the contents on the ground, and takes it to the hole.  He then turns it upside down and covers the hole.  That, for me was amusing and amazing enough.  Far from his typical safety zone, and well into territory I had always hoped and dreamed he would gravitate to.  He was building a secret entrance to a spy lair, and in spy fashion, he said nothing about it when he came back in.  But the best was yet to come.   When I took the garbage out later, there was a potted plant on top of the pot.  He had gone into the kitchen at some point, and picked out a plant that would make the entrance look less conspicuous.  I am just worried that he and his dad might really build a secret room down there, and half hoping they will.

So, life on the autism spectrum is anything but dull.  I never know what to expect, but as long as I can see good progress and get good laughs along the way, I know we are doing fine.

Temple Grandin Part 2

Stretch.  Stretch your kiddo with autism.  Make sure they are stretched.  Dr. Grandin came back to this point several times.   She said to push them, but not too hard.  She also used widen and broaden.  She told the anecdote that when she was a teen her mother told her she was going to her Aunt's cattle ranch that summer.  Temple said, "No way.".  Her mom said she could go for a week, or for a month, but she was going.  She went, she loved it, and it inspired the rest of her life.  And she put that all down to being stretched by her mom.

She talked very fast, and although I took six pages of notes I did not get it all.  I plan to buy more of her books, especially one on The Unwritten Rules of Social Relationships.  She noted a new book called Asperger's and Self Esteem that she wrote the forward for, which profiles famous folks on the Spectrum.  Einstein, of course, is on the cover.  While she was very pro-autistic folks, and differing ways of being, she was also a strong advocate for training kiddos in manners and social norms.  She made the case for the utility of her Fifties upbringing, and said she was saved from expulsion from school for fighting and aggression issues by finally having horseback riding taken away for two weeks.  She said she switched from aggression to crying at that point in her life as an outlet for her emotions.  Further on the emotion end she discussed fear.  She characterized fear (and anxiety) as the primary emotion of autism, and backed that up by saying her Amygdylla is three times larger than normal.  She noted that for kids, caisen free, gluten free, and/or sugar free diets, and fish oil supplements, can greatly reduce anxiety.  For adults she is not opposed to low dose anti-depressants for anxiety, and wrote in detail on that in her book The Way I See It, second edition.  She has a web site, grandin.com , that I plan to look up soon.  Also fhautism.com, but I didn't catch if that is also her web site, or just a strongly recommended one. 

Now, how do we know how big Temple's Amygdylla is?  Well, she noted she has had many brain scans for scientific purposes.  One large set for a US government study, and another set for the NFL!  Apparently they have a large brain injury program.  She showed several of her brain scans, and they were very cool.  She is very lively, in a completely deadpan way.  She did reveal she was not feeling well, so maybe she smiles more when not in gastric pain.  She had a lot of empathy for non-verbal autistic folks, and went into detail about ways to read their non verbal cues.  She also talked a fair amount about Sensory Processing issues, and that the science behind this is getting clarified and solidified.  Her charts went by very fast, but she had a big one showing sensory issues as a stand alone issue, as well as an adjunct to about ten other diagnosis, including autism and ADHD.  She recommended getting familiar with Google Scholar to get to the good stuff on the internet.  She also made several jokes about the autism percentages in Silicon Valley.

Great ideas that popped up.  Fluorescent lights often drive folks on the Spectrum batty because they flicker and an incredibly high rate.  You can block them with a brimmed hat.  You can also cancel them out by putting an incandescent light on a desk that has fluorescents overhead.  Also tan, grey, or pastel paper to work on can make a huge difference (gonna buy a ream).  The only electronic devices that do not flicker like fluorescents are lap tops and tablets (go I-pad).  Colored glasses (called Irilean) or even cheap colored sun glasses can also knock out the flicker.  Balancing games, and sitting on a bouncy ball can be very helpful.  Do not get hung up on labels, work on the specific problems.  Sounds are better tolerated when the child initiates them.  NO SUDDEN SURPRISES, these cause extreme fright and tantrums.  Weighted vests should be used 20 minute on and 20 minutes off. Oppositional Defiant disorder is caused by stupid math drills.  Always work bottom up, teach specific examples before trying to teach concepts.  Use associative links back to the persons areas of interest to promote learning.  Teach how to do work other people want.  There will always be uneven skill development, bold up the strength areas.  Hands on activities teach practical problem solving skills.  Get kiddos involved with practical skills.  Clubs, hobbies, scouts, classes that really interest the student.  Start building a work history and ability early on, once you find things the person likes and is good at.  Show kids interesting things and places.  Teach with real objects as much as possible.  Use flash cards with pictures and words on the same side.  Kids should be doing project and playing games with other kids where the rules and duties are negotiated by the kids, adults back off. 

Yes, I know I just dumped a bunch of stuff with not much of a frame work to hang it on.  Sorry about that, write or ask if you have any questions.  I wanted to get most of it down while the lecture is fresh in my mind.  I wish I could have hung out with Temple (if she had been feeling better), but her personality did a good job of shining through in the talk.  She may be completely dead pan, almost no facial expressions, little voice inflection, and few gestures, but she made up for that lack with intelligence, wit, and heart.  I will definitely be buying more of her books, and tracking down the HBO movie too.   At the end of her lecture she opened up for questions abruptly, and the hall was silent.  The first person to venture forth was a middle schooler on the Spectrum.  He was clearly uncomfortable walking up there in front of everyone, and his bravery was heart squeezing.  He saw Temple as a hero, and she treated him with great respect and attention.  I don't even remember what he asked, but the whole thing gave me great hope for the future.  It was quite a night, go see her if you ever get the chance.  

Temple Part 1

So, I got in to see the sold out Temple Grandin lecture.  It was sooo cool.  I thought it might not be, since I have read several of her books and seen many interviews, and figured it might be old hat.  No way.  She was engaging and interesting, and had a ton to say.  Her focus in the lecture was on Autism, but she threw in a little animal science as well.  A friend asked if she is the possibility, or the exception, and I say possibility.  If this sounds like Greek, let me explain.  Temple Grandin is an adult with autism.  She is also a Ph D, is very respected in her field, and has written almost a dozen books.  She is internationally known for both Animal Science, and as an Autism advocate.  Her story is fascinating, with a different family she may have ended up in an institution back in the Fifties.  She did not speak until she was three, and had serious behavioral problems.  As an adult she presents as extremely unique, but also down to earth and very funny with a dry sense of humor.  I say she is the "possibility", because she proves that unique individuals, who do not swim in the main stream, can make it in the real world as adults. 

Two of her key points for autistic individuals were: develop your strengths, and sell your work, not yourself.  She also made many minor points, including being held to real world standards, developing an experience and work history, and persisting in a challenging society.  My   favorite line was when she was asked about options for schooling for kids on she spectrum she quipped, "Socializing with teen-agers is not a life skill I needed."  She referred several times to raising kids with autism, and said that you need to "stretch" them so they experience much of the world. 

There is much more to say, but my son needs his earned computer time, so I will post Part 1 now.