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.

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.

The Summer Alex Plan

I may just be deluding myself, but here is the plan for the summer for Alex.  Learning to initiate socialization.  Alex has learned so much over the last few years, and this is one of the final keys to a bright future.  So far we have taken on: emotional ties to safe adults, emotional regulation, communication with adults, friendships with a few select peers, activities of daily living- dressing, bathing, eating, brushing teeth, zipping zippers, etc., navigating around and responding to same age peers, typical classroom participation, regular school work, and empathy and understanding emotions.  Taken them on, and still working on most of them, with general great success.  So much success that it is time.  It is time for him to blossom into initiations.

Initiations?  Sounds so clinical, but it is key to opening the whole world.  Without initiation he is dependent forever on assistance.  Without initiation he cannot be truly creative.  We may be jumping the gun a bit, as he is not a really great copier, and copying comes first on the developmental ladder, but he's his own man so why not.  He so wants to be around his friends that I can't help thinking it is time.  But how to do it?  He can initiate with his closest and safest friends, so how to broaden that out?  Make more kids safe?  With the help of Congdon Creek Summer Camps.

The camps are perfect.  Geared to 3-9 year olds and based out of the preschool he attended when he was 5, they play all day long.  They play, and hike, do projects, and play some more.   It is a gold mine of communication opportunities.  The staff is top notch, and they handle everything that comes along with style and grace.  His particular teacher also has a special education degree, and was his teacher at 5, and also did her internship in his 4 year old ASD classroom.  Can't get much more perfect than that.  When I met with the staff before summer to talk about encouraging initiations, and also good motivation strategies and using multiple cues with him, they didn't even blink.  They do all that and more, on a daily basis.  Including promoting positive social skills with all the kids. Heaven. 

Alex has been at camp for two weeks now.  He has met up with old friends at camp, and made new friends too.  The staff keeps me updated on his progress, and he is making gains every day.  They are prompting and he is responding...and initiating.  He does not just do his own thing anymore, and it is not a royal fight to get him to interact with the kids.  He is participating fully, and developing his own style.  He is king of the monkey bars, and loves to read with and to other kids.  Yesterday he spent much of the morning playing "puppies" with one of the girls, barking and snuffing noses.  And the other part of the morning he was discussing Kung Fu Panda 2 with one of the boys.  Ahhhh, Bliss. 

What you have to understand is that when Alex was 5 he could hardly be in the same room with the other kids.  He maybe talked to two kids on his own all year.  He had a paraprofessional with him much of the time, yet could not connect.  He was very handsy with the kids, it was his only way to communicate.  He would roll on one girl that he particularly liked.  He always looked like a deer in headlights.  The staff put in major work just for him to participate and partially work on projects.  His desire to be with kids blossomed that year, but there was very little appropriate interaction.  He was in his own orbit, getting closer and closer to the others, but still miles away.   It is a joy and a delight to see how much he has changed, and to watch him fully participate.  Yesterday he asked his dad if they can make a chocolate cake for the staff... he happily agreed.

So, there is the meat of the Alex summer.  Four days a week he is at Congdon Creek Summer Camps.  The rest of the time is dedicated to playing outside, camping trips, acting class, kayaking trips, play dates, reading, math, writing, stories, baking, eating good food, biking, building a rocket with his dad, and putting the coffee on in the morning.  Santa Barbara may not be in the cards for this summer, but with the help of their ideas (initiations being a big one) and books, I think we will do alright.

The Autism Superhighway

I wrote a post awhile back about being stuck.  Being stuck with the Autism aspects of our son, feeling like there was no progress in key areas.  Well, at the time I posted I was getting un-stuck, and we have now been driving down back roads at a good pace.  I have had a feeling of making progress, and life with Alex has continued in it's amazing and sweet way.  Things may be getting a lot faster soon.

There is a book that I call my autism bible.  It is titled Overcoming Autism: Finding the Answers, Strategies, and Hope That Can Transform a Child's Life.  It is miraculous, but it is not a miracle cure.  It is research based and driven, and it contains a whole host of concepts and ways of dealing with the behaviors and deficits of autism that results in massive developmental gains.  Basically how to catch up with his peers, and how to stay with them, rather than living in a separate and isolated world.  I have read and implemented strategies from this line of research for years, and feel it is a very grounded and sound.  The results have been excellent for us.  Helping us address problematic behaviors of the past, such as biting, hitting, and refusals of most things, as well as helping Alex to learn key communications abilities.  But reading the research and implementing it all in isolation has been daunting, and Alex keeps changing so there are always new challenges.  Alex's development has been steady yet uneven and seems rather slow.

We may soon have an opportunity to jump on a superhighway.  The Autism Superhighway.  The Overcoming Autism book was written by a researcher.  That researcher, and her research husband, Lynn and Robert Keogel, have an Autism Center in California.    That Center offers intensive clinics for entire families, to learn how to implement their program and hit the key areas of motivation, initiations, and self-regulation.  It is a form of Applied Behavioral Analysis, with lots of twists and lots of fun.  It is not drill therapy.   The Remote Family Program would consist of a thorough assessment of where Alex is at, as well as super charging our ability as parents to implement fun strategies to move his development along.  Five days on the campus of University of California- Santa Barbara, with five hours of therapy, training, and education a day.  It is for Alex, and my husband Kevin, and myself, and we could also take any interested professionals with us.   It would be intense, expensive, and worth every penny.  There is also long term follow up, and support.  Plus we would likely go through the program with other families with kids at the same level as Alex.  Wow.

My head is spinning over the whole thing, and my brain throws up a whole host of road block and fears, but in my heart it just feels right.  Kevin is all for it, and we are in contact with the Center as they formulate their summer schedule.  I don't know how this is all going to work out, but am super excited to do what I can to make it happen.  More updates will come along as we hear back from the Center. 

It is funny how things come along when you least expect it.  I have been focusing in other areas and then this arrives, as if on the wings of an angel.  We will follow where it leads, and try to keep up the good work in all other areas as well.  Wish us luck!