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

Update

Time for a little update in blog-land. 

It has been a long, long time since my last blog. I had just started my over the top semesters for graduate school, and was not truly sure I would survive.  But survive I did.  I worked, went to school full time, interned, and attempted to help at home.  I succeeded at all but the last.  My amazing husband and wonderous son took care of home, and themselves, and kept me going.  While I was at grad school, Alex moved to a new school too.  He started at Edison Northstar Academy and took on Fourth grade.  He had play dates with friends, and did well in Jujitsu.  He kept up with drumming lessons, and got out skiing with his dad.  Kevin worked on his business, and kept us all a float.  And then I graduated.  Last May I earned my MSW in Clinical Social Work, and my license too.  We enjoyed a fine summer, and then rolled on into Fifth grade.  The last year of elementary school, yikes!  We started Alex at a fine learning center, to help boost academics, and he has been working hard and developing many great skills.  On a sad note, we lost our cat of 19 years.  Beeswax passed peacefully in the winter.  In June, a new furry friend joined our family.  Xander is a guinea pig with more personality and sweetness than can be believed.

Outside our little family there have been many losses, and our hearts have gone out time and again to friends and extended family.  It has been tough, and we try to cherish all our people and good times as they arrive.

I still work at the hospital, but am growing restless to put my MSW to use.  Kevin is very busy with business, but also got out into the Boundary Water to camp during the coldest week of the year.  Yes, he loved it and did it on purpose.

I am feeling the desire to blog now.  A new start, and time to tell more tales.  So, keep an eye out.  Thank you  for reading my ramblings, and have a great day.

Peace Out - Beth