Palilalia

     I am hot and heavy into autism research this summer.  I am researching a newer theory that underlies how language is developed and utilized called Relational Frame Theory (RFT).  I wont go into it in this post but it is great and mind blowing stuff, at least for a theory and psychology geek like me.  It underpins all language, and techniques have been developed to remediate both mental health issues like anxiety and self-hatred, and also developmental disorders such as autism.  Not by the same teams, of course, but progress is being made on all fronts.  I got myself several expensive and up to date texts on RFT, the mental health ACT, and how RFT and other similar research is being applied to autism and other developmental disabilities. 
     The great thing is I am finding ways to apply all of this across my lives.  My work life, my personal life, and my mom-to-Alex life.  The most exciting for me is the Alex and autism progress.  I have identified some deficit areas that have been staring us in the face for years, but were not specifically identified or highlighted.  The thing about autism is that there are 1,000 deficits.  So many ways we are behind or different.  Intermixed are many strengths and areas we are gaining ground.  What to focus on?  This is the $64,000 question.  We have gone with many different answers and areas, but have tried to always keep the pivotal areas from PRT in mind.  Well, we may have found an new pivotal area.  Or and old one, depending on who you talk to and how they are trained.
     Tacts and mands.  Tacts and mands are staples of the ABA world.  Sorry about the jargon, but I just have to throw it out there.  Please hang in for a minute.  In my basic understanding, mands are the same as "demands" and Alex and other kiddos on the spectrum are usually good at these.  He has been able to demand things since we were blessed to have him start talking (after significant delays).  "Milk" was possibly his first mand.  Tacts have always been harder for him.  To tact is to describe something.  This is what 3 and 4 year olds do, all-day-long.  This is what Alex did not do then, and has been limited with even to this day.  This I knew.  I also knew that he had issues with both "receptive" and "expressive" language, what he takes in and what he puts out.  And I knew those two didn't match.  We have been told his receptive is better than his expressive, basically that he listens better than he speaks.  I didn't worry too much about it, figuring that he is therefor comprehending well and the rest will catch up.  What I didn't realize is that those two things, at least for Alex right now, are on totally different tracks, and are not necessarily catching up or tying together on their own.  What I didn't realize was that he had a serious resistance to tacting out loud, labeling the things he knows Out Loud.  And this had kept his speech at a remedial level.  He knows it, but that is not good enough if he does not/can not/will not express it.
    By some Alex has been labeled resistant.  Defiant.  He had a speech teacher that wrote him off as a discipline case because he would not conform to her activities and demands.  Most likely related to tacting.  She had no idea how to motivate him, and threw in the towel.  I am using some conjecture here, but suspect I am not far off.  That person was awhile ago, years back, but it still burns.  She did not look into his speech deficits far enough to see the tact and mand issue, or to separate out what he could do (listen) from what pathways had not been worn in yet (express).  And she probably started at too high a level, and demanded too much.  So he shut down.  I get that.  I have done that too, many times.  But I never gave up for long.
     So, I am learning.  We started tact training a few days ago and it is going beautifully.  Turns out he will work real hard for Cheetos.  And a simple, yet fun, labeling program at home is already paying dividends in his ability to tact, and therefore describe the world.  We will keep going with that, and expand on through the summer.  Today I discovered a new word I should have known.  A word that speech teacher should have picked up on and taught us.  A word no one has told us about but is a key feature of our boys language.  Palilalia.  Let me back up and say "echolalia".  We were taught echolalia years and years ago, and have taught many the term.  It means to echo what is heard, either immediately, or from the past.  It is a key feature of autism and ASD that can be very confusing, because kiddos will use whole phrases that make no sense in current context.  Either phrases heard from parents, or in Alex and many others case, phrases from movies, commercials, or radio.  He has this one bad.  Even though he has limited exposure, movies and shows, their words stick like glue, and he will pull them out at very odd times.  Saying things that are confusing or that appear to be nonsensical.   It is an indicator that he is not using enough original language, not making or using those connections.  And we understand it is hard for him, so we encourage novel language.  But palilalia is a new one on me.
     Palilalia means to repeat phrases, either out loud or under one's breath.   And not just repeat once, but at least twice, and sometimes up to five times.  Or more.  I am not sure, yet.  I have never been taught about it so never tracked it.  But I will now.  I am already looking up remediation strategies.  And understanding it as another indicator of being stuck.  Stuck in non-functional language, and therefore not moving forward with functional language.  A red flag.  But also a way to track progress as we move forward.
     I am glad I know about it now.  I will shortly let go of not having known about it before.  I will add it to the list of "things I wish I knew and may some day teach", and move forward.  Cuz that is what it is REALLY all about.
     So, I am looking forward to a great summer.  Tacting is not the only front we are making progress on.  We have continued to bike.  That is super fun.  Alex is determined and his skills are rising.  He learned to roller skate last week and really liked it, even as he was going 1/2 mile an hour and falling quite a bit.  He is looking forward to travel and visiting family.  We have more soccer on the ticket.  Camping is in the plan, boating too.  Plus many play dates and adventure.  Last school year was great, and I think if this language program pays off he will return with a much better relationship with the world.  It is an exciting and inspiring time.  As more discoveries are made I will try to get the word out.  Thanks for reading!

   Peace Out Friends
     -Beth

Biking

Bicycles.  They are the ultimate reflection of an American childhood.  The joy, the pain.  The struggle, the freedom.  When I was a kid we all had similar bikes.  We started with the banana seat bike with one gear, and rode that thing until it almost fell apart.  We would swap bikes, crash bikes, forget our bikes, and occasionally have them run over by the station wagon.  I grew up in a flat city, so the whole place was open to me from the beginning.  I am pretty sure I rode my bike to first grade, and beyond.  Summer was the ultimate bike time.  We would meet in gangs and ride around for hours.  To the park, to the pool, and to the store for nickle candy.  When I got big enough I got to ride my mom's three speed.  Wow!  My dad had a FIVE speed, but I was never tall enough with that darn top bar in the way.  As a teen I begged and begged, and finally got a new-fangled 10 speed.  Life was good. 

Unconsciously, when I had my own kid, I was expecting bicycles.  Sure, times had changed and banana seat bikes not longer ruled the driveways, but kids still ruled on bicycles.  I saw it with my friends kids, and around the neighborhood. I had my expectations, and then life happened.

Easy bike riding was not in the cards.  Alex got his tricycle at about the same time as other kids, except he would not go near it.  Flat refusal.  Other kids were laughing, riding, zooming.  This did not sway him.  For months and seasons we tried everything.  No go.  Or, shall I say, slow go.  Eventually  he came round.  Eventually he totally loved his tricycle.  He rode that thing long past the time other kids had graduated to bikes.  And he had a bike.  A cute one just his size with training wheels and all.  Plus he had rode since near birth behind his dad's bike in trailers of all kinds.  Yet he had no desire to bike on his own.  He rode his tricycle, or nothing.  His bike sat, and he outgrew it.  He got another one.  He ignored this too.  We got him a tag-along when he outgrew the trailers, and he could ride behind his dad.  Quite the strong legs too, and he loved the down hills.  But he refused to ride on his own.  We would bribe him.  Take him to a nice parking lot, with cones to aim at, and cookies to earn.  He would ride for a minute, or two.  Then be done.  He outgrew his tricycle.  But the bicycle with training wheels was just too much.  Too much balance.  Too much to add steering, and braking, and coordinating what to do when the speed ran out and you had to put your feet down.

You see, a bicycle is mindbogglingly complex.  A lot like life.  And he was not on the time-table of "all the other kids".  In my rational mind I knew that not ALL the other kids had mastered the bicycle years before.  But in my heart it felt like it.  When he was eight, and most of the other kids were old pros at the bike, it left me sad.  Isolated.  And defeated.  It was not fair.  How come all the other kids got it.  Or, more importantly, how come my kid didn't.  Of course it was me who was off track.  Asking the wrong question.  It wasn't about the other kids.  It wasn't about Alex.  It wasn't even about me.  It was about life.  One of the many ups and downs of life that take us along for the ride.  My husband and I took a new tack with the bicycle thing.  We got Alex a balance bike.

We decided the key issue in biking was balance that he could control.  On a tricycle, or a tag along, or even a bike with training wheels, you never really had to balance.  And balance was what Alex lacked.  If he was ever to ride a "real" bike, we had to help him develop that balance.  They make balance bikes for 18 month olds, as a first step towards super early biking.  Well, we had missed that window, but we followed the idea and used regular bicycles stripped of pedals and gearing.  And it worked.  He thought it was fun.  You keep the seat real low and move the bike by running it, then lift your feet when it's going good.  He got it.  He didn't exactly love it, or go and do it on his own, but he would be game any time we required him to do it.  Somewhere in there we bought a scooter too, but that was even less interesting for him.  So we used it as a choice, "We are heading to the bike path, you can use the scooter or your balance bike....".  I guess it had a use as the worse alternative.

And that is where we stood for the last two summers.  Balance biking around.  Even heading out to the trails from time to time.  Last fall Kevin hit on the perfect bike to move up to.  BMX.  One gear, to alleviate complication.  One hand brake, for the same reason.  And a solid construction that can go anywhere.  He searched around and found a used bike.  Then he worked on getting the right components.  By the time it was mostly perfected, the snow had come.

Now it is spring.  Yesterday was the day to see where we were at.  With nervous stomachs and hopeful hearts we took Alex down to a huge flat parking lot near Lake Superior.  He did not argue.  There were no tears.  He was resigned, and willing.  Kevin got him going, holding the back of the bike like millions upon millions of parent before him.  Running along, holding him up, until he was not holding up anymore, and then he was not even holding him.  Alex was off, faster than Kevin could run, going for the far side of the lot.  Turning on his own, controlling his speed, staying away from the few parked cars.  Balancing.  Balancing and pedaling.  Looking and planning, coming around to us, and going out again.  It was a beautiful thing. 

Keep your eye out for us.  We will be biking.  Getting that balance locked in.  Working on starts and stops.  Trying out different terrain.  Learning about falling, and hopefully getting up again.  Moving at our own speed, and doing our best to enjoy the ride along the way.

Biking, I think we finally gotcha. 

Peace out-  Beth

Hanging in the Typical World

I love nine year olds.  They are the bomb.  Tonight we took two other boys, Lucas and Beckett, with us to a baseball game with Alex.  It was a riot.  They were all hopped up on candy and the excitement of a playoff game in the farm leagues.  Lots of music, action, and errors.  Fans screaming and stomping the metal stands.  It didn't really matter if we won or lost.  The boys were happy to hang with us parents, but also kind of did their own thing.  They danced, played tag, tickled each other, and had staring contests.  Beckett was practicing hard to blow bubbles, and kept getting gum stuck all over his face.   The boys and Kevin were having so much fun they almost got klarned on the head by a foul ball.  It bounced away and some kids under the bleachers got the prize.  We stayed for the whole game, well after dark and our usual bed time, and only had to mange our son a few times when he got too wild and would not stop dancing and singing during tense game moments.  He also was a bit of a pill in the car on the way back, but the other boys did not care.  It was a lovely night.

 We have been amping up the social interactions this summer.  Well, we've been amping up everything, really.  Social stuff, sports, chores, and behavioral expectations.  In California we realized we need to rely on others to teach him many things, but we need to get him there and let him try.  Even if it is hard.  Even if he is the odd man out who does not "get" things like other kids.  He does not learn the same way, but learn he does.  We have taken on lesson from others in downhill skiing, jujitsu, and soccer.  Continued lessons in nordic skiing and swimming.  Further lessons have come in the form of acting camp and drum lessons.  He has not become a prodigy in anything, although he is a fine rock and jazz drummer for age nine.  Lots of musicality coming out.  But always in his own way.  With soccer we joined our first "herd"sport, as my husband says.  And it has been marvelous.  He joined the team without hesitation.  He is rather lost, but never down.  Not real aggressive, but fortunately he is not the only one in that zone on his team.  He still stands out, if you pay attention, but can sometimes blend in too.

This week Alex demanded a play date.  "I want a play date today!"  This from the kid who has always preferred to retreat to his room.  The one we needed a stunt double to open gifts at his early birthday parties because it was just too stressful. The kid who would hide when other kids showed up to play.  We have turned the corner, and it is because we have pushed it.  "Stretching" him, as Temple Grandin recommended.  Stretching ourselves too, because seeing your kid rejected is about the worst thing in the world.  Partly success has come because he has been ready.  In second grade he and Lucas became friends, and that was his first spontaneous and full friendship.   He was ready to make a close friend, and Lucas was new to school and had a desire to have a friend who was not tied up in school drama.  It has been a prefect match.  They were tight all through third grade, and even though we are changing schools we plan to keep Lucas.  We will make sure we see him on weekends and breaks.

But we have also started expanding further this summer.  More play dates, and more kids on the roster.  More sports, and more events.  We spent the whole day at the Carlton County fair, when in the past we would have kept it shorter to avoid serious melt down.  Real or imagined, it is sort of hard to say.   Alex would act anxious so we would help him to avoid things.  But that became a trap, because we were always on the lookout for the perfect situation, and got boxed in by our avoidance or leaving early from things.  Then he did not learn he could actually cope, and neither did we.

This is all common stuff for kids on the Spectrum, and common for some kids off the Spectrum too.  It would be a lot easier if we had had starter kids, oh well.  As it is, it feels like we are nipping in and out of the typical world.  This summer has been filled with typical kids.  Nine is a great age.  Independence struggles are starting, but snuggling is still possible too.  The kids are not totally on their own, but they demand some autonomy.  Every independent move by our guy is silently cheered, and even the mistakes are mostly cherished.  Lots of spills and mis-calculations, like when he made liquid pancake batter, the coffee disaster of June when he tanked a whole pot, and dropping that whole quart of pineapple juice and yelling at me to clean it up.  He poured water in my muselix, instead of almond milk, and made nasty oatmeal the next week for all of the house.  And he has been telling us off.  Some mistakes are remedied, like all the food, others earn time outs, like all the sass.  But still, we move forward.  Upward and onward, as they say.

Alex still has many quirks, and much to learn, but it seems we are making real progress.  We start with our remote sessions with the Koegel Center next week, and they will keep us honest and growing.  He starts a new school at the end of the month, and that will take him to the next level too.  New kids, new teachers, new expectations.  Keep the best of the old, move on to the new.  The grand adventure continues.  For now, it is late.  We are post ball game, our home team did not win, it's a shame.  But the three boys sleeping in the attic didn't really care.  They cared much more about pop corn, having fun, ice cream at home, playing a board game when they got back, and having a massive light saber battle up stairs.  Tomorrow it will be pancakes and water balloons.  We will stay typical as long as we can.       

Optimal Outcomes

     Optimal outcomes.  I have just hit on the key idea and goal of our journey with autism.  We have been working towards it for years, and now it has gelled.  "Optimal Outcomes" is an area of research in autism.  I just read a journal article on it for a research project in my masters graduate program.  It defines what we are, and have been doing.  It defines the outcome we want.  It is also defines the dream, the hope, and the blood, sweat, and tears of our family for the last six years.

     "...between 3 and 25% of most cohorts appear to lose the diagnosis [of autism]."  Lose.  Gone.  No longer applies.  We have long suspected the possibility, and seen hints here and there.  We knew it happened for other kids, but we sometimes barely dared to hope.  We rarely dared to voice it.  Especially not to average professionals.  But we still worked towards it every day.

     Optimal outcomes.  It is in the research.  It is in the journals.  It is in a few of the books when you look closely.  Never guaranteed, but often sought.  Are we crazy?  No!

     How does this happen?  "Optimal outcome parents were generally highly involved in the children's treatment programs and in their social lives.  Parents who advocate vigorously for the best interventions and who carry over treatments into other hours of the day do not guarantee the kind of Optimal Outcomes we describe here, but may maximize the chance of one."  Another cited study reported it's finding that, "....about 18% of the children diagnosed at age 2 and receiving mostly behavioral intervention had lost the diagnosis by age 4."  We have missed that early intervention window, but since we are still going on a great behavioral intervention program, and making excellent gains, we feel we are still in the running to lose the diagnosis by the end of high school.  If not before.

     What does this mean?  Well, it means both nothing and everything.  Nothing is confirmed, yet everything is possible.  Nothing is lost, and there is everything to gain.  When looking deeply into the research article I saw that Alex meets the standards for Optimal Outcome potential.  He is verbal.  He has enough IQ.  He has enough desire for social interaction.  We will keep going with the behavioral interventions.  We will keep on being deeply involved with his social life.  We will take this for the marathon that it is.   We will not stop.  And in the end, we will find an optimal outcome of one kind, or another. 

California Workshop Days

It's not magic, and it's not rocket science, but PRT is definitely a new way of thinking.  Our final two days in Santa Barbara, California last month were where the rubber hit the road.  Alex had been tested and assessed, and they found the areas that we needed to work on.  These areas were:

• What it means to be On-topic
• On-topic commenting
• On-topic questions
• Conversation
• Following Directions
• Being Flexible
• Academic success

Specifically addressed items beyond or within the initial areas were:

• Reading
• Handwriting
• Resistance to outings
• Limited food selections
• Eye contact
• Screen time
• Conversation with kids
• What parents should do when acting out
• Stimming
• How to apply PRT at home
• Maintenance vs. Acquisition Tasks
• Priming

We have been working ad-hoc on these areas since we got home, while we await the final report.  The report will also go over all the testing and findings.  They told us that in general his IQ scores have been rising in many areas.  There are still serious deficits, but once we have them pinpointed we can work to use his strengths to fill in the gaps.  "Alex has plenty of intelligence."  This is a direct quote from the clinicians.  That is what we have always suspected, and the mode we have operated in, but bringing that intelligence out is the trick.  I find it very interesting that the very first thing presented in his school testing was the IQ test.  In kindergarten he tested very low in IQ, and I wonder how many of the professionals who have worked with Alex looked at that result and made a whole cascade of decisions based on an assumption that the score meant low intelligence in general.  Maybe none.  Maybe only a few.  Maybe some.  I will never know.  But it chaps my hide to think that any decisions have been made on that basis, and that I have fallen into that trap too.  I do not know what the solution is.  I do not think we should throw out all testing.  But I also think we need better measures, especially where communication dysfunction is concerned.  Alex is not a native speaker of English, and he is not a native speaker of Non-Verbal.  He has learned, and learned pretty well, but it is still a foreign tongue that overlays every aspect of his interactions with people.  And perhaps causes people to question his intelligence.

I saw this first hand with another kiddo this week.  I worked very closely with an ASD child at work.  I found this child to be quite intelligent, and versed in getting needs met.  I felt very at home working with this child, and teaching the parents about some of the seemingly mysterious aspects of ASD.  It is all about communication.  Unusual communication, paired with a-typical language useage, but communication all the same.  This child learned and progressed quite a bit in just a short time on the unit, at least as far as what I saw.  Then I read an official report.  Another person of standing on the unit started and ended with "Low Intelligence".  It was heart breaking, and I hope the parents never see that particular in house report.  It could prompt them to give up, when this kiddo has a lot of potential for learning.  One thing I am learning is that intelligence and language are not the same thing, but many people make that assumption.

So, we have our work cut out for us.  The trip to California was not an end point, but another beginning.  Each question answered leads to many more questions and loads of work to be done, but that is okay.  That is what life is all about, right?  Problems, problems solving, celebration, and starting all over at the next level.  The final report will be in soon, and then we can begin our monthly consultations with the Keogel Autism Center, and continue on our way.  Problems, celebrations, and all.

California Dreamin'

We are back!  From Minnesota, to California, and back again.  We have been assessed, examined, tested, and taught.  We have just returned from the world renowned Koegel Autism Center at UCSB, and life is good.  It is not easy.  It is not straight forward.  It is not complete.  But it is good.  Very, very good.  

We went for four days of assessment and training.  For Alex, and for Kevin and I too.  The Koegel Center believes in teaching the parents along with the kiddos, so that treatment can be delivered round the clock at home, and everyone is on the same page.  A novel idea in a world of specialization where your kid with challenges is usually whisked away to private therapy, and parents are often seen as a bother.   PRT is the title of their method, Pivotal Response Treatment.  Developed by the Koegels, this treatment is both research based and highly effective.  In September I attended their international PRT conference as both a parent and potential practitioner, and found the Koegel's to be the real deal.  Myself, Alex's para-professional, and 300 others from the US and abroad learned in depth about the modality, and the latest research findings.  In November our families number was finally up, and after waiting for two years to get into the Center we were able to plan a week long treatment visit.  On the eve of February Winter Break we left on our journey.

What was it like?  Well, the preparation process and the first day of testing and examination were like being ground up into hamburger.  We went over every deficit our son has.  He was a wreck, and so were his mom and dad.  But we all got through it.  The Center itself was calming.  On the edge of the University of California, Santa Barbara campus, a sun washed quiet building surrounded by giant Eucalyptus trees.  The staff were kind and prepared, expert and confident. The lead clinician and assessment director, Dr Ty Vernon, was adept at getting the best out of Alex.  The panel of tests they chose covered every area of intellect, development, and cognition.  Alex was given ample breaks, and quality cheer-leading.  Kevin was in for every moment of the tests.  I was in another room, reviewing every step of Alex's history, as well as all of his current functioning.  While perfectly handled, the process was still exhausting, and we left the first day in a numb state.  USCB is on it's own peninsula, completely self contained about 5 miles from Santa Barbara proper.  We drove into town, and had a lovely meal at the original Sambo's restaurant.  Then we went for a walk along the beach.  Alex was already recovering and got his toes right in the ocean.  He smiled and smiled, and we knew it would all be worth while.  Our beach adventure finally ended when a small wave got our boy, he sat in the surf wet to the chest, and we all laughed and laughed.

The next morning Alex did not want to go back.  He told me he did not like the tests because they were too hard.  It had also been very hard on Kevin, watching Alex flounder in conceptual and spatial areas.  Seeing exactly where deficits lie.  It seems our boy is good at skating by what he cannot do, and redirecting into other areas.  We may have been assuming too much, and not seeing the forest for the tree in front of us.  Just what we needed to know, but hard to see so blatantly.  Hard, but good.  Day 2 actually went better than the previous day, less exhaustion as the testing wrapped up and excitement as we looked forward to getting to the training part.  I had some break time to go out into campus, which was fun, and then came a big thrill for me.  In the halls of the Center I ran into Dr. Lynn Koegel.  The co-founder and clinical director of the Center.  Dr of Educational Psychology and Speech Language Pathologist.  Autism researcher for 20 years.  Author of countless articles, manuals, and books.  Also seen on Super Nanny.  National and International expert in autism.  I met her, and she is amazing.  Kind, focused, intense, and interesting.  We had a wide ranging conversation that covered Alex, autism, our family, education, PRT, and my own masters pursuits.  During this time she met Alex as he went by with Kevin, and she conversed with him as well.  You could see her awareness and focus hone in on him like a laser.  An intelligent, experienced, and curious laser that relayed information to a highly specialized brain.  Her eyes lit up, and as he traveled on with Kevin she commented to me that we had done very well with him.

We went to the beach at the end of Day 2.  A beach near the university.  We all breathed a huge sigh of relief.  The testing was over, and we had survived.  Two more days were to come, all tailored training for our whole family.  Ty told us many things at the end of the day, but I had to file them away for that moment.  I was too stunned at the conversation, comments, and assessment of Dr Koegel.  "We had done very well with him."  Like an arrow to my heart, it was what I had hoped to hear, and feared I would not.  All the work and study, time and effort were paying off.  My perceptions were not off.  Our hopes had good basis.  This from one of the leading lights in the field.

As we played on the beach I mulled it all over while Alex chased sea gulls and waves, and Kevin took pictures.  The message I distilled from that day was that our sweet boy was doing fine, and we would find a way.  A way to follow our dreams.  Our parental dreams that our son will be able to have, make, and follow dreams of his own.  The assessment was over, and the bright future lay ahead.

Big Things on the Horizon

Big things.  Huge.  Gigantic.  In the wake of continuing shake ups in Alex's SpEd department we are stepping out of the fray.  Exit stage left.  Hop on plane.  Step off in sunny California.  Going to one of the best autism centers in the world.

Have I mentioned lately that no one actually knows what autism is?  No one.  Not even the folks at this center, which is known world wide.  They are the first to admit that no one knows what it really is.  But they will tell you about how their methodology creates visible brain changes that trend towards normal.  And they will show you case studies about kiddos that moved into the typical range.  But they wont tell you what autism is, because no one knows.  Which drives me nuts when I start to sense that people think they know, and think they know what it means for my son.  Because that usually means no good. 

I was once told by an expert to never, ever tickle my son.  Experts put my son in preschool in a level 3 autism classroom, where he did not see a typical child all year and picked up terrible behaviors.  I was told by another expert that I should have my son in an autism only kindergarten room, and I would want him in that room with the big swing and low expectations for his entire elementary school education.  Another expert spent much of his teaching time letting him watch Cat in the Hat videos, presumably because she didn't think him capable of more.  I believe that these "experts" all thought that they knew what autism was, and what it meant for my son.  I know they were wrong.

We are going to California for some answers.  We are putting out a huge amount of money, and asked our family for great help, because we believe that having up to date information is the best possible course of action.  It takes current research 25 years to make it into mainstream practice.  We are not willing to wait.

So we are heading to the University of California, Santa Barbara, and will be getting a full work up at the Koegel Center.  Robert and Lynn Koegel have been working with kids on the autism spectrum for over 30 years.  Robert studied and researched with Lovaas.  They have published works for decades and built a dynamic program at UCSB.  They work with kids from infancy all the way into adulthood.  They have opened multiple clinics, and teach nationally and internationally.  They are a powerhouse, and we are so fortunate to be heading to their ground zero.

Tomorrow (Sunday) we fly.  Tuesday, Wednesday, Thursday, and Friday we will be assessed, examined, tested, and taught at their clinic.  And Monday, we get to go to Disney.   I wish Disney could be at the end of the trip, but maybe it will get all our ya-yas out before the serious stuff.  We already sent in every test and assessment Alex has ever had, plus a 16 page current intake.  When we leave we will have a 22 page report, possibly a different diagnosis from basic autism, and hopefully a very specific plan of action.  In that report we hope to see a clear picture of where our son stands on the autism spectrum, and what his capabilities are likely  to be.  Are we crazy to be aiming towards college?  Do we have a prayer for an independent life?  What, exactly, is it going to take to hit his highest potential?  I know that life is actually a crap shoot.  I know that nothing is guaranteed.  I know that plans are not to be depended upon.  But I have to try.  We have to go for it.  Alex is too charming, and funny, and unique, and wonderful not to give him the gift of our complete and total devotion.  We will not let him sink just because some "experts" in our home town have assumed that an autism label is also a "you will never succeed at being independent" label.  "We shoot for adequate" is not the educational philosophy in our home, as it is in many special education departments.  We shoot for the moon, instead. 

So, off we go.  Alex, and Mom, and Dad.  We are leaving behind the snow.  The five degree temperatures.  The wind and ice.  Also the skiing, and the woods, and the wood stove.  It would have been a lovely winter break at home, with temps heading up to the 20's soon, and many play dates to be had.  But it's okay.  Santa Barbara will be nice.  We will sweat it out at 40 to 65 degrees, and get some sun block for our pasty selves.  We will see palm trees, cool flowers, beaches, and ocean.   Smell the salt, and peel off about 12 layers.  There is a pool to swim in and a beach to walk to from the hotel.   And Disney should be a riot, especially with my best friend from growing up who lives in LA.   I am a little afraid that the place might make a lasting impression on Alex, and some day he might want to go to college there.  But really, that is the least of my worries.  We are off tomorrow, and hopefully we will continue to find the world. 

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.

Camp

 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?

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,
Beth

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.

Copy Cat

     "Copy Cat!"  I remember the taunt well from grade school.  It was used with highest disdain.  But really, we all start out as copy cats.  It is what children do as they learn and grow, from infancy on.  Think about Peek-A-Boo and Simon Says, both eternally popular children's games.  For the typical kid, that is.  Atypical kids, kids on the autism spectrum, kids like mine, often they can't do it.  Alex would never play Peek-a-boo.  Believe me, I tried.  Every time he freaked out, and tried to hide or get away.  This is one of those red flags.  He never copied either.  I would show him something to try and get him to look, to copy a simple eye gaze, and he would turn aside.  If I went so far to move his head so he could see something cool, he would look down.  If I tried to get him to copy a movement, it would be time for battle.  It is nearly impossible to make someone copy you, this I know from experience.
     Typical kids love to copy.  They will copy and copy all day long.  That is how kindergarten and first grade work.  Of course it is not perfect for every child, or every day, but the majority of time little kids are happy and excited to try something new.  Not my kid.  No wonder he needed a 1:1 person to guide him.  It is not that he was mean about it, it just made no sense to him and did not feel good to do.  He had no "automatic copy" in his programming, and while the other kids were copying he was coming up with something else to do.  Something super easy and comfie, like rocking back and forth, or spinning in circles, or flapping his hands.
      Babies start copying their family very early.  From eye gaze, to noises, to grabbing things, to "Soooo big".  My son did none of that.  He also did not show any interest in things just because someone else was interested.  Interest was more of a repellent.  Conditions had to be perfect for him to show interest.  He needed something familiar, presented by someone super safe, in a very mellow manner.  Newness was a repellent too.  He did not open up a new present on his own until he was about five, maybe even six.  We used to have stand-ins open presents for him on his birthday.  Overall he was a real trooper through many of the rites of childhood.  Things most kids grooved on he just endured.  Birthday parties, organized games, pre-school, carnivals, play dates, kids activity day at the Nature Center.  He did those things simply because we wanted him to, not because they were fun for him.  Zero to eight is a lot of years of not copying anyone.  And it makes it almost impossible to navigate the social world.
     The social world when one is small is all about copying.  Moving from doing your own thing next to another kid (aka Parallel Play),  to actually interacting with other kids and directly copying them is a huge play milestone.  That is where the social world really takes off, and it usually happens in preschool, from age 3-5.  The little kids start to copy each other, and then the bigger kids, who copied the bigger kids ahead of them.  This is how certain things live in the preschools and grade schools, independent of anything else.  The same jokes you heard in preschool are still there, and it is not because the teachers or parents promote them, they are alive and well on their own.  In grade school games live on the playground, no one is teaching the kids to act like a dog and play puppy school.   They get it from older kids, or they get it from each other in a shared consciousness second grade developmental leap.  And it evolves.  I have watched the games the second graders are playing this year on their own get more and more complex.  They copy intricate movements and rules, and then they initiate changes and modifications, present them to the group, and see if they take.  If they take, then the group recopies the new trend.  It is a mini-version of the fashion industry, or the gaming industry, or even scientific research.  In a way we spend our whole lives in society copying what has gone before, choosing to keep what we like, and change what we don't.  Copy and initiate, and copy and initiate some more.  Someone who can't copy is destined to be out of the loop, and it is doubtful that they could be savvy enough to create their own loop.   They just end up alone.
     So, copying is big stuff.  Huge.  And we have been out of the loop.  We, being my son and his fan base.  We make the best of being alone much of the time, and he really does not seem to mind, but we have also been working the last few years to make in roads to the ability to copy, and initiations as well.  I have forced him to play "copy me" games.  We sent him to school to be with typical peers, and have encouraged interaction on all levels.  He has been constantly prompted to use his words and express himself with the adults that guide him in life. This last summer we sent him to camp with the main purpose of helping him to learn to initiate conversation and games with young peers.  He has been through four sessions of Stage Play Theater to learn the lingo of professional copying and how to be a beginning actor/ copier.  And he has been getting it, a tiny bit at a time.  A bright spot here, an initiated conversation there.  A request for something he wants, but has a hard time asking for.  An expression of an emotion without prompting.  Games played with kids at school on the playground without intervention.  He is the tag master.  He is trying hard.  He still can't ask a kid to play a game in class that involves language, or hold a kid conversation, but he is trying and learning.
     And tonight, something that prompted this entire ramble about copying.  As he was getting last snuggles before bed I tapped a four beat on his little butt.  He laughed and copied it on the bed.  I made another beat, and he copied that too.  Four more and he copied them all.  Then I said, "Your turn" and he initiated beats for me to copy.  And more, and more.  We went on for several minutes.  Or maybe only two, but it felt like ten.  Such a small thing, but really so huge.  After years of trying, and giving up, trying again and learning how to prompt.  Being aware of the deficits and trying new ways to approach them.  Prompting again and prompting some more.  Finally a truly spontaneous copycat session, hopefully a marker of a door that is opening without my noticing it before.  Perhaps it was a Christmas Miracle.

Ketchup, and Mustard

I have a new little friend.  He is pokey in the halls at my new job, and always lagging in the line.  I often find myself saying, Catch up, catch up!  And I now know why his teacher from Kindergarten dressed for Halloween as "Ketchup... and Mustard!". 

So, there have been quite a few changes in my life, and Alex's too.  I jumped ship at the Hospital, swam away from my pirate compatriots, and landed on the calm island of North Shore Community School.  This is my son's school, that I have been in love with since 2009.  I came up with the crazy idea last spring at Alex's IEP meeting, where we hammered out the plan for his education for the next year.  It was such a great meeting, with over a dozen excellent professional folk, that I walked away saying, "I gotta work here some day.".  Then it hit me.  There would be a special education position opening up in my son's grade.  Would it work?  Could I work at the same school, in the same grade?  I knew they were planning to split up my little friend and my son, so there was no danger of being in the same classroom.  I started a quite interview process with everyone I knew at the school to see if they thought I would be a good fit.  All went well.  It was a long spring and summer, wondering if I could pull it off, if I would get hired, and if I could really leave the hospital.  It seems the answer all around was yes.

It was surprisingly hard to leave the hospital.  Even though it was a super high stress position, with weird risks and crazy situations popping up all the time, I still had made a home there.  True, the family was very dysfunctional.  VERY.  But I had my peeps.  My survival network.  And the worst thing was knowing I'd be abandoning them.  The second worst was not knowing if I'd be abandoning them or not, since it took forever for the interview/ hiring process to happen.  I did not know the final answer until I was on vacation, on the 15th of August.  I went from nervous wreak, to elated abandoneer.  And then the bubble burst.

At exactly the time I was getting hired, my husband was experiencing sudden hearing loss.  He woke up right before the 15th of August with vastly reduced hearing in his left ear, with replacement ringing, buzzing, and pinging that just about drove him nuts.  By the time my hiring was sinking in, we were off and running to Doctors, Audiologists, ENTs, and MRI nurses.  When he wasn't having invasive procedures done, he was coping with the loss of half his hearing and the addition of all that replacement noise.   Apparently the ear does not like a vacuum, and replaces lost hearing with random noise called tinnitus.  Random, bizarre, maddening noise, that you eventually just get used to.  The Ear, Nose, and Throat guy we trusted most said Kevin had a 20% chance of getting enough hearing back in that ear that he could possibly get a hearing aid.  It was a random virus that was attacking his nerves, and this happens about 4,000 times a year in the US.  The amazing end of the story is that he got back almost all of his hearing.  After searching out a best practice solution, Kevin got a steroid shot into his eardrum within ten days of onset.  This did the trick, and he now has loss in a 15% range.  We will know in the next few months if he should go for a hearing aid for that range.  For now we are simply grateful.

By the time that started to resolve I was into my last stretch at the hospital, that morphed right into my first days at North Shore Community School.  I was a bit shell shocked, but happy.  I was hired as a Paraprofessional, and I actually look after two kiddos on the Autism Spectrum in my boy's same grade.  I made the transition pretty well.  Now, six weeks later, I am finally getting a good handle on my new job.  There have been some challenges, but no kids with Hep B have spit in my mouth, and I have not had to tie any children down with leather restraints.  It is almost heaven. 

At home we are settling in to the new routines as well.  I have much less free time than before, but I don't really need recovery time from my new job, so it is all good.  We have a ton more family time, and have had quite a few adventures already.  This weekend is a long weekend off, and next weekend we are going "winter" camping in our wood stove tent while attending the annual Winter Camping Symposium.  My next post will likely be about Alex, and what I am learning about school and Autism.  I will just say that it is all good, and I am on a positive learning track.  Plus his classmates are adore-able, and I am also in love with second grade in general.  That is all for now, I hope everyone is having a good Fall.  All the Best- Beth