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  

My House

This is the house that Love built


It is messy
It is kind

There are swings
There are stacks of wood
We have a shop where man dwells
We do laundry
We laugh

Our boy has Garfield books
Light sabers
A bike with no pedals
A disability

We have fires
Inside
Outside
In our hearts

We quarrel
We snap
We get tired
We go jump in a river
We laugh and laugh

This house is small
We try to fill it with the important things
Knowledge
Giving
Love
Pasta

Our adventures are big
Whitewater
Camping
 New schools
Small business
Family, friends, California

Winter, Spring, Summer, Fall
We play
We sing
Badly
We run, jump, ski
We make mistakes

The house that Love built
It is our home
Our teacher
Our work
Our dream

Come see us some time

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.       

Bedtime Limited Offer

The time is now to write up our sweet bedtime routine, as it fades out.  I knew it would not last forever, but have enjoyed it ever so much.

My kiddo has always been a champ at going to bed.  He has loved his sleep, and always seemed to run off to bed in relief that the long day was finally over.  But for the longest time there were no stuffies.  No loved fuzzie ones that he had to have with him.  I would tuck him in with his Bunny, or Blue, or Piglet, and he never seemed to really care.  Until about a year ago.  Yes, at age 8 my kid finally became attached to stuffies, much to my great relief.  It was one of those childhood markers that I was afraid would never come, but it did.  And it evolved into a ritual that was very strict, and very fun.

First came Stitch.  Stitch had to bounce on his head and laugh maniacally, and then pop into his spot at the far side of the bed, tucked under the cover of course and against the wall.  Then came Blue.  She does not talk, but would hum the Blues Clues theme, lick his cheek, and snuggle in next to Stitch.  Next Magenta would kiss him, meow, and say Good-night Alex, because Magenta can speak even though Blue cannot.  No one has ever been able to explain that one to me.  Then it was Penguie's turn (the Kennywood Penguin), he would waddle up Alex's back and peck his cheek four times and settle in on his other side, away from the wall.  Then Zoom the Turtle was up, rolling up Alex's back (he's very round) and stopping to kiss him twice on the nose.  I would pause, and Alex would ask, "Where's Perry?", and Perry the Platypus would be procured from a hiding spot, chitter at him, and crawl under the covers.  And finally, Yoda.  He would say something like, "Night Good, young Padawan.  Kiss your Mother.  Sleep good you shall."  I would get my kiss, and out I would go, turning out the light as I went, leaving him chocked in with his little friends.

It has been fading for a few weeks now.  I don't know if it is soccer leaving him too tired for long routine, late summer nights, or just getting older, but our little routine has been fading.  Perhaps it will rev up again for a final hurrah, and I hope it does.  It is such a sweet part of having a child.  Day is done, routine completed, another step further down the road.  Sure, it was kind of a pain in the butt to find all the stuffies from wherever they had rolled or been tossed, digging under the bed or under the covers, but I finally got wise and dug them out before starting the routine.  Then it wasn't even a pain at all.

But it has been a time limited offer.  Only good for so many months and then gone.  This is what I have learned about being a parent.  It is always moving, always shifting.  Once you get used to something it is time to say good-bye.  Having a kid on the Spectrum many of the hellos have been later and the duration not as long as a typical kid, but maybe that makes me appreciate it all the much more.  I realize that some parents never get to hello.  And some have to say good-bye all too soon.  And some who wanted to be parents aren't.  It's all a time limited offer, this life thing.  Parenting is fleeting.  Life is fleeting.  No one knows where it all goes.    

So have fun.  Speak in funny voices when the time is right.  Roll turtles up a little boys back.  Kiss those sweet cheeks.  Play hard.  Sleep hard.  Think hard.  Dream hard.  Life is fleeting, but it sure can be divine.

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.