Thursday, September 6, 2012

Swimmin' in Lake Superior

Alex and I have gotten in a delightful routine of swimming at the beach on Lake Superior.  There is an access trail from the old fire hall, about half way down Park Point.  The sand is golden and endless, and the sand dunes to the beach are tufted with beach grass that may have been there for thousands of years.  The walk up and over the dunes is calm and beautiful.  And then the lake.

Lake Superior.  The name says it all.   The view from the beach looks North East, 240 miles to Canada, bounded by gentle hills on either side, opening up from 14 miles wide at the beach.  The beach at the fire hall access is very shallow, and warms up nicely.  Warm being an awesome 65 degrees yesterday.  That is quite the warmup when you realize the average Lake Superior temp is 42 degrees, year round.

We show up, we drop our gear on the barely populated beach, and we hit the water with boogie boards in tow.  Usually there are not waves, but sometimes we get lucky.  Alex is always the first one under water, I generally follow with a holler or two.  Once in, it is quite pleasant.  Alex is an underwater fish, I like to float about, often on both boards.  We cruise out to deeper water, it takes about 20 feet to get to chin deep for the little guy.  Then we are under, and up, across, and down.  He has started climbing on the boards so I can tow him while he balances.  He becomes a shark and chases me.  He says, "Under water, now!" and down we go to sit for a bit.  He is not a deep water swimmer yet, doesn't like being in over his head, but he can swim underwater and down beach for a long ways without touching.  He loves it, and it is a joy to be with him out there.  I have never been in the lake just swimming so much in my life, and it is good.

Swim season is likely ending.  The nights are getting awfully darn cool.  But when a North East wind blows that warmed up water from the 70-80 degree daytime temps, there is still a window of opportunity.  Every time we have swam in last week, I think it is the last.  And then the lake surprises me again.  Kevin has gotten in on quite a few swims as well, and we've all gone together a time or two.  The beach is our recent go-to activity, and is sure is a good one.  Especially last evening, when Alex insisted we go after supper because the web said the lake was 65 degrees.  Warmer than ever!  The air temp was a bit down, but the setting sun made it all worth it.  Especially watching Alex dive under with his little butt in the air, working it hard to get under that clear, clear water.  His technique is far from perfect, but it works, and is oh-so-cute.  The grins when he pops back up are priceless.  Yes, the season may be about over,  but it as been stellar while it lasted.

We are now truly addicted to the Fire Hall beach.  22nd street, to anyone living in the area.  Lake Superior, thank you for a lovely end to a great summer.  When the swim season is finally over and hypothermia water moves in, we will have no regrets for this year. 

Close enough to be considered a picture of "our" trail and beach.  Park Point sunrise, Lake Superior.

Tuesday, September 4, 2012

The First Day of School

Alex awoke for the first day of school in a chipper mood.  He did not make breakfast and deliver it to his parents, like yesterday, but he did pop out of bed and go about his business.  Today is the first day of big changes, and I had anticipated some resistance or anxiety.  He will be riding the bus again, after having a whole year off.  He will have a new routine at school, no more breakfast, or staff watching out for him getting to class.  He is on his own, independent with back up as needed, and a focus on staying with his class at almost all times.  I am nervous as hell, and he is taking it all in stride.

So, there we were on the sidewalk, Mom, Dad, and Alex, playing Simon Says and waiting for the bus.  Watching the birds eat berries off the Mountain Ash tree.  Taking pictures.  Running back in the house to grab this and that.  Normal.  Ridiculously normal.  Alex got the tiniest bit worried as the bus pulled up, and wanted me to get on too.  So I did, since I know the driver, used to drive bus myself, and used to get on every day when he was littler and needed me to guide him to his seat.  I stayed about half a second.  Long enough to say hi to all aboard, and watch him bounce into the seat up front.  Then he's yelling bye, I'm hopping off, and away they go.

I don't know how all the big changes will shake out, but I am cautiously optimistic.  Simon Says is a very good sign.  His copy cat skills may be close to fully functional.  We have been coaching him at home on who to copy at school this year.  He has a wonderful seat mate.  Her name is Maria, she is serious and kind, and has been friendly with Alex since Kindergarten.  She is the number one he is to copy.  Lucas is number two, his best friend from last year and this summer, as long as they aren't trying to play Star Wars in class.  He is also well coached on going to friends for questions, as typical kids do, then asking the teacher.  His last line of defense this year is to be the Paraprofessionals in the room.  Joe or Rebecca will be in the class, and hopefully will be doing guidance from far in the background.

He is used to having lots of special treatment, and we are betting on his increased skills with peers allowing for him to slot in happily to regular treatment.  His attention span has increased to near normal when activities are engaging.  His motor skills have improved to near typical level for gross motor and fun stuff, like games, balls, running, hopping, skipping, and rock climbing.  Fine motor is yet to be conquered, his writing still sucks, and his drawing is at a pre-school level, but I got him to play with playdough yesterday.  I take that as another good sign.  He was averse to many fine motor activities before, and now he is open but behind.  He even did some spontaneous gluing last week.  Next I will work those pesky scissors.  We will get there.  Perhaps with his increased copying skills and decreased learned helplessness he will get inspired to tackle some of those difficult activities in the regular school day.

Don't know.  I don't know.  School doesn't know.   Alex doesn't even know.  But I have great hope. Hope that we will continue to go beyond limits.  Hope that his strengths will get stronger, such as his enthusiasm, kindness, and courage, and that his deficits will continue to diminish.  Not to zero.  That will never happen.  But that doesn't happen for anyone.  A wise teacher once told me that no one gets ahead by focusing on their weaknesses, but rather by developing strengths.   Alex certainly has his limits, at this time, and I am sure they will come out as the new year progresses, but his new skills and strengths are so exciting that I know we will find a way.  What way, I don't know, but a way there will be.  With a kiddo this chipper, and excited, and switched on there has to be.  School is always a challenge, but so much potential to for joy too. If we are very fortunate, all the big changes will add up to another big step towards just being another regular, spectacular, kid.

Thursday, August 23, 2012


 The Miracle continues.  Alex had a fantastic time at camp.  His first overnight camp has been accomplished and it was marvelous.  It has all come together so neatly.  I was supposed to work while he was dropped off by his dad, but I was able to get out early and join them on the way to camp.  We got there early, because his dad was in charge, and he was the first kid from his cabin to arrive.  His best friend arrived shortly thereafter, and they were able to pick top bunks next to one another.  What joy!  Lucas had the bunk in the corner on the left, Alex was to his right.  I could imagine from the start these little boys chatting with each other from bunk to bunk, trying to get to sleep at night, waking up in the morning light.  Such adventure.  They could not wait for their families to leave. 

Notice Yoda in on the bunk too.  Lucas forgot any stuffed friends, but said, "I'll be all right."
Birch Cabin.  Bunks and a fireplace.  And boys, boys, boys.

So leave we did.  It was hard.  Kevin had to just about drag me away.  I wanted to stay, and spy, and be part of camp too.  But I left.  Took a deep breath, and left.  You are supposed to let them fly, right? 

And fly they did.  Alex must have, by the smile on his face when we returned three days later.  And dare I say, he stood a bit taller too.  I don't know how easy or hard it was for him.  But from the report from his counselor he did great, and Lucas did too.  I may have to scan Alex's letter from his counselor in some day, it had so much good stuff in it.  He participated in camp.  He did all the activities and loved them all.  He even rode a horse this time, and went on a trail ride through the woods.  At day camp that was the one thing he refused.  He finally did it, for 150 bravery points.  He got up early every day to play field games, cleaned up in the dining room, sang all the songs, and even ate a hot dog.  Somehow he kept track of all his stuff, never even lost his retainer, and got from place to place with out an aide.   He even bought a Camp Miller sweatshirt with his birthday money at the camp store, all on his own.  Let's not forget the swimming too, and kayaking as well.  And most of his time paling around with his best friend.  Activities all day, and big campfires at night with songs and s'mores.  There is so much I don't know, but am taking it on faith that the staff was not just blowing sunshine, and he really did great.  They both did.   Alex did not hit the archery target yet, unlike Lucas, but he did not seem disheartened.  The weather was beautiful.  The bugs were minimal.  He climbed the tower, and won a game of Ga-ga.  And then the "week" was over.  We came to pick him up, and have a closing picnic.  He was whole, and healthy, and not traumatized a bit.  Lucas was smiling, they remain fast friends.

 It was a mini-camp, three nights and days, so the numbers were small and the campers were all young.  The perfect size start.  Lots of counselors in blue, and their T-shirts read "Professional Role Model" across the back.  There was a camp fire to close with, of course, because that is what we do in Camp in America.  Time for skits, songs, and awards.

Preparing for the stage.
Birch Cabin got to do their skit "Pebbles".

Counselors singing a goofy song.
The crowd singing it back.

The Dynamic Duo with their First Year Camper ribbons.

Our happy Camper.

Respect.  Honesty.  Responsibility.  Caring.  Those are the four core values at Camp, and he did well with all of them.  He was sad one night, his first I think. Sad and homesick.  Sad enough to bring in his day camp counselor from another cabin.  I can imagine it.  She was called in for rescue.  She took him outside, and they walked, talked, sat down.  He must have been exhausted, ready to run for home.  But he didn't.  She calmed him, and sent him to bed.  And that was it.  Our one bump in the road, and then back to camp as usual with his best friend.  No special staffing.  No extra support.  One great friend, to whom I will be eternally grateful, and one great program.  Half a week away from home.  Under the big pines.  On the water.  Learning how to adventure, and learn, and laugh on his own.  Having a good friend, being a good friend, and learning to slot in with a whole group of awesome people.  If he can do this, what else might the future hold?

Thursday, August 2, 2012

The Great Camp Experiment

This is it.  The miracle is happening.  I don't know what kind of conditions and work it will take to make the miracle permanent, but for now I am just riding the miracle wave.

Let me back up.  Nine months ago I was inspired to send Alex to camp this summer.  And not just camp, but Camp.  An ultimate Camp.  Out in the woods, with counselors, kids, and all the traditional activities.  At the time we were attending the Winter Camping Symposium at Camp Miller.  The Symposium is something my husband has been attending and now coordinating for many years.  It has been a venue for die-hard winter campers to get together in the late fall and get pumped for the coming winter season.  It has been held in many locations over the years, and had landed at Camp Miller, a traditional YMCA overnight camp.  The kind with woods, fields, cabins, a dining hall, and a waterfront on a beautiful lake.  It also has canoes, kayaks, a swim platform, and a sailboat or two.  And fire rings for many campfires, big and small.  Plus fun extras like a climbing tower, horses, barn animals, arts and crafts, high and low ropes, archery, and riflery.  And equipment for games, games, games.  It is A Camp.  We were there in the off season,  as a family, and for an alternate purpose, but I got tingly just by walking around the grounds and seeing it all.  I am an old Camp person myself, and Camp to me is the lifeblood of summer and childhood.  I started dreaming about Alex having a real Camp experience.

But I was fully aware of the challenges.  Camp is about adventure, and independence, and friendships.  All of those are very hard for Alex.  How could he ever go to camp if he does not know how to play, and playing with new friends seems impossible?  How can we get him to Camp, if leaving home and routine I painful for him?  How can he go to Camp, if he has always had a parent, or Para, a Buddy, or trained professional to look after him?  Challenging indeed, but once I met the dynamo Camp Director, Bridgit Marushka, I began to think it could be done.

First we brainstormed.  Camp Miller is a traditional overnight Camp, where kids go for a week and stay in cabins with their age group and gender.   Camp is open to kiddos going into second grade all the way through high school.  There is a progression, and by high school they are either Counselors-In-Training or off on wilderness trips.  Since Alex is going into third I figured we would be in the perfect starting age group.  But I knew just dropping him at Camp cold would never work.  That is hard for most kids, and would have lead to paralysis or meltdown for Alex, or both.  Whether or not he could have recovered from the shock and gone on to love camp was not a toss up I was willing to risk.  No, there had to be a way to ease him into it.  Bridgit provided many options.  She promoted the ASD Family Camp, where the whole family gets to participate in activities at their own pace.  It seemed like a great start, but did not end up working with our schedule.  Bridgit said I could come as a parent volunteer for overnight Camp, or even stay in a cabin with Alex at night and he could participate in the daytime.  These seemed like good fallbacks if he was losing it, but the full program at once still seemed like a bit much.  Then I learned about the Mini-Camps and also Day Camp.  The Mini-Camps are Sunday to Wednesday and geared to the younger beginner at Camp.  And the Day Camp sounded like a dream.  Day camp, with all the benefits of the full Camp grounds and activities, but the security of going home at night.  It even turned out to be quite a bit cheaper than the day camp in Duluth.  The only hitch was having to transport him.  An hour.  Each way.  But to me, that seemed like a price to pay that I could manage.  And I began to consider that I might be able to find a friend to go to camp with him, since it is such a beautiful camp and the Day Camp program is actually much less crowded and chaotic that the one in town.  And did I mention it is cheaper?  Like by half.

So a plan began to form.  Find a week for Day Camp, and then follow it up with a Mini-Camp.  Have the option for me to slot into the camp activities if it was just too overwhelming for Alex.  And start working on finding a friend to attend with him, especially for the Day Camp portion which would be an easy sell.  Easy, right?  Well, maybe not, but worth a try.  I knew the friend part might be rough.  Not because Alex has no friends.  He has plenty that would be interested in the experience.  But to find one that would have the same week open, and could get to our house every day at 7am for the one hour ride to camp, well that was a stretch.  And in the back of my mind I wondered if that same friend would want to attend the Mini-Camp too, but that was a bit too much to even hope for.  Especially since we were quite limited on which weeks would work, due to Acting Camp, a two week Swim Intensive, our two week trip out East, and not wanting Day Camp and Mini-Camp to be right on top of each other.  We're busy, and limited, and so is everybody else.  Would there be a chance? This is where part of the miracle resides. 

Fast forward to this week.  Summer itself has been  ticking along just fine.  Many wonderful experiences have been had.  All previous activities counted as successes.  A few ups and downs here and there but an overall great summer with many more ups than down.  I have been feeling calm, and confident.  Relaxed, and excited.  And now, downright ecstatic.  The whole Camp Plan is working out even better than I had dreamed.  Alex's new friend Lucas (and his mom, Jenny) joined the camp plan with smiles and excitement all around.  Jenny is an old camp counselor herself, so she knows all about the magic.  All I had to do was tell her about the opportunity and bam, Lucas was signed up for Day Camp.  Lucas is a wonderful kid, and he and Alex struck up a friendship at school this last year.  Not just an ordinary friendship, but dare I say a best friend?  I don't want to downgrade Alex's other friends, but this is his first solid friendship that they developed themselves.  We did not know his folks, and these boys were not forced in any way to hang out together.  They figured it out themselves, and they are a joy to watch pal around.  Lucas does not care that Alex has limited language usage, flaps his hands when he is excited or nervous, or that he can get worked up over seemingly minor issues.  They play, and laugh, and play some more.  Alex does not bring a lot of social drama with him, he is mostly friendly and kind, and Lucas appreciates this.  And the same can be said of Lucas.  He just wants to play, he not into dominating others, putting anyone down, or friending and un-friending others to see who is king of the hill.  Easy going, smart, verbal, and fun, what a guy.  Super excited about camp, too.  And nervous at times, so he and Alex balance each other out nicely.

With Lucas on board the only other challenge was camp itself.  How would they react?  Would they like it?  What about the other 15 kids at day camp this week?  So many things that could go wrong, and haven't.  The staff is top notch.  The program is perfectly planned.  And the weather has even been cooperative.  I was ready to stay.  I was ready to play background smoother and helper.  I was ready, and I wasn't needed.  Day one, we pulled in, signed in, and met the staff and kids.  Alex looked around, stood next to Lucas, and said, "Pick me up at 4."  I had a quiet meeting aside with the staff and they promised to call if there was any trouble.  I took Jenny on a tour of the camp while the boys trooped off, cell phone in my pocket.  Life under the big pines was beautiful.  After an hour I went home. My phone never rang.

The miracle had begun.  Alex and Lucas had a marvelous first day.  Both were excited and exhausted at the end of the day, driven home by their mom's and wanting to drive together the next day.  I got to drive them in day two, laughing, goofing off, and being a general riot in the back of the car.  Being typical boys.  Typical.  Miracle.  At the end of day two I cornered the day camp director for a specific report on Alex.  How was his behavior?  Did he have trouble spots?  What could I coach him on?  "Nothing" she said.  Nothing to report.  No problems.  "He's just like a typical kid.", "He's totally into all the activities.", "He's chatty with everyone.", "He's one of the best kids we have."   My heart almost stopped.  I think I am still digesting it all.  Rainbow, rainbow, rainbow.  The camp magic is working.

And so, the miracle continues.  Lucas pestered, begged, and gave his folks the big sad eyes, and he is going to overnight camp too.  Both boys have done archery, rock climbing, and tons of swimming.  The bugs and sun have not been too much for the two red headed boys.  They come home exhausted.  Both are earning "bravery points" today for horseback riding.  I am calling them "The Dynamic Duo".  The camp even splits them up from time to time, because they are such close friends.  They are getting to know all the other day campers, and Alex has been leading the playground free time, deciding where the "space ship" or "boat" is going.  I heard a little girl say, "Alex, what are we doing today?"  At the end of the day, I have come close to driving off the road at their antics in the back seat.  I have even gotten them to tell me a few stories about camp.  When the car is empty, it has been very peaceful driving down to camp and back.   I stayed at camp yesterday, all day, to meet with Bridgit about the kids program for this falls Winter Camping Symposium and kick around on my own for a bit.  Today Jenny drove the boys, so I am catching up on the important things.  Like clarifying how this miracle came about, and getting the word out. Rainbow, rainbow, rainbow.

It all came together.  There must be divine providence at work.  I am pleased, and proud.  Pumped, and grateful.  Inspired.  I know that the atmosphere is about perfect.  I know conditions are just right.  But I can't help hoping that the word "typical" is not just a passing phase.

Peace out,


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.

Monday, July 30, 2012


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. 

Sunday, April 22, 2012

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.

Saturday, March 31, 2012

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.

Tuesday, February 7, 2012

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, , that I plan to look up soon.  Also, 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.