February 9 - First full week of therapy coming up

It has been almost a year since moving to Utah.  Between a demanding work schedule, day to day family demands, and not being organized, I haven't given therapy the priority it deserves.  Regardless, this week, the week of Feb 10, will be Isaac's first week back into therapy.  We've hired Pryor Consulting (Scott Pryor) to work with an under-study / line therapist.   Scott will train Hannah Peterson to learn all of the ins and outs of this approach.  Instead of ABA, which we used in Colorado, he uses RDI (Relationship Development Intervention).  The goal of RDI is a little different.  Where ABA felt more repetitive in nature and getting Isaac ready for specific skills at school, RDI is encouraging Isaac to develop the ability to think and process independent of direction; it is encouraging him to use more of his brain and use different areas in conjunction with another.  The premise is that Isaac has all of the working parts in his brain; the challenge, then, is to create activities where those pieces form pathways and better connect closer to what nuero-typical kiddoes experience naturally.  He threw out a few terms such as limit setting, thought shifting, etc, that encompass this line of thinking.  I'll provide a better example of that in a bit.

Hannah was trained by Scott over the past few days.  She is a first-year college student studying special education.  She's young, but she seems to be committed and comes highly recommended from the singles ward bishop in our stake.  Scott will check in with her every few weeks, review progress, etc, but Hannah will be running the day to day activities with Isaac.  She'll be starting with 8-10 hours a week and we'll gauge from there what levers to turn (up or down) to balance out his schedule.

Just a quick example of one of the concepts mentioned above: thought shifting.  In the past, when Isaac demonstrates an unwillingness to follow directions, we have tried to modify behavior which eventually lands him in the garage or timeout.  We had no idea how to help him, and our default consequence, sometimes sooner than later, always seems to end in the garage.  Typically, he demonstrates behavior in situations where we are time-dependent.  We need to catch the bus or take the other kids to school; we don't have time for Isaac to perform his rituals or do things his way.  Because of the time constraint, it seems there is almost always a resulting fight.  Scott differentiates between "therapeutic moments" and "non-therapeutic moments".   Life is full of  the latter.  We need to hold space for more of the former, but there is also reality to be faced.  So, this last week, we were able to witness a therapeutic moment between Scott and Isaac, and it was truly fascinating.

Again, the topic of thought shifting.  The idea is to allow the child to "shift" their thoughts upon encountering an adult demand that stands in their way of freedom and their desires.  Instead of getting stuck on something and being unwilling to move off it, they can learn the capacity to "shift" into something else.  Isaac was sitting with Scott before a table and determined that sitting on a chair wasn't good enough, that he wanted to play on the table.  Scott told him that he wasn't allowed to be on the table.  He provided some simple rules (1 closed door), called "limit setting" that still gave Isaac many options (open doors).  Isaac kept trying to get on the table, again and again.  He would run around the table and wait for Scott to lose track of him and then run for it, trying to jump on the table.  This went on for 45 minutes.  He never got in trouble or went to time-out; Scott simply prevented him from getting on the table.  The only consequence for trying to break the rules was a larger delay in time; Scott's goal was to "hide the object in open space".   Said another way, the item in question (the table) would eventually become hidden from Isaac, his desire for the object was shifted elsewhere.  I remember after 45 minutes that something clicked into Isaac.  He got it!  He realized that he wasn't going to get on the table.  It was pointless.  You could see in his mind that it was time to focus on something else.  He had made the decision by himself, not because he was threatened with a consequence (the garage) or motivated by a reward (token or candy or sticker).  He made used his brain to choose between many doors (one closed door and many open).  It was an awesome learning for me.

RDI also uses some techniques such as "name 3 things".   I couldn't believe how involved Isaac was, how responsive he was.  He would be asked "name 3 things that make noise" and he replied with "wind, fans, air-conditioner" to which Scott asked "can you think of another?".  Just then the dog barked outside and Isaac had this HUGE grin on his face, as if to say "now isn't that good timing".  The grin turned into "the dog outside".  It was very funny.
Scott then asked to name 3 slow things.  Isaac replied with "cars".  Before Scott had a chance to challenge that unusual response, Isaac jumped in to qualify the answer.  He said, "sometimes cars are stopped ahead of us and are very slow".  He had defended his answer as he noticed Scott's facial expressions.  Having been with Isaac in the car many times, even during rush-school-hour, his statement wasn't surprising at all.  He simply drawed upon his own experiences to answer the question.  It was very cool.

Among the other exercises that day, another was called "instruction programming".  It's a fancy word for guided play with legos.  You have 6 or 7 pieces of legos for each person (2 persons) that are exactly the same.  One person instructs the other person on how to build the legos.  For example, "place the blue lego to the right of the red lego.  Next, put the white lego on top of the blue and red lego."   At the end, you compare legos to see how well the leader was followed.  A goal here is to get Isaac thinking outside of just audible communication.  Stretch him to read body language, gestures, etc.  As he was receiving directions, he was also looking at facial expressions along with asking "do I have it?" or "is that right?".  It was astonishing to see his thought process and to demonstrate some of the skills I had no idea he possessed.  

The goal of these sessions is to increase Isaac's thinking, not necessarily to finish a task or get it all right.  After one exercise (20 minutes of writing at the table), we talked about our observations.  We agreed that the non-verbal communication before the exercise (motioning for Isaac to come to the table) was perhaps the most valuable insight.  He was able to look at Scott, understand a gesture (wave of a hand) and eventually follow directions.  He did so after double touching 5 or 6 things (the carpet, the fireplace, the table, etc), but he eventually moved his chair over, sat on it, and was ready to engage.  In a past life, I would've jumped in after 2 or 3 times and declare "you have 3 seconds and then you're going to the garage", which would've set him off and threatened him.

Finally, something that was emphasized on Saturday was to disassociate uncertainty with anxiety.  The goal is to allow Isaac to remain calm and collected, give him options, etc., even in the face of uncertainty. This concept needs to be slowly introduced and embedded in everyday life.  An example of this might be letting Isaac feel the uncertainty of class (will it be computers or fun paints or reading).  Regardless of what happens, Isaac can feel comfortable to participate and feel safe. He has nothing to fear and doesn't need to emotionally shut down.  In talking with the therapist, Scott, we both observed that it seems some folks learn at different times of their lives that uncertainty is heavily associated with anxiety.  I've seen this in Isaac, but I think many people experience this as they're put in situations without the proper perspective or tooling.  Being on a mission, in my mind, has caused a few people I know to be overburdened with uncertainty, and eventually they are unable to cope.  I've seen folks on my mission personally, and I've seen relatives experience this.  It might be true that we all have a little autism in us.  I know I do.

Anyway, we feel blessed to be starting up again.  I'm hoping we'll find that not only does this benefit Isaac directly, but it also reduces the stress Anne must feel in caring for Isaac all day.

new therapist, same challenges

We have now moved to Utah.  Actually, we've been here a year almost!  Wow, time flies.  With a little guy who likes consistency and structure, the move to Utah has been challenging.  To say the least.  It has been hard on Isaac, hard on Anne and the kids, and hard on me.  I, especially, feel stressed because I really pushed the move to be closer to my work, our family, etc.  I felt it was the right thing for our family at the time.  But, things were so much easier and nicer for Isaac in Colorado.  He has declined in almost every aspect since the move.  I'm not sure if it's a lack of support and therapy, or if this is the normal ride for a kid with autism.  Regardless, it's cause me to be depressed and to really question whether the move was good for our family.  I guess when things don't go perfectly according to plan, it's easy to question.  My family has been troopers about the move, but I think everyone misses the clean air of Colorado, the friendly people, our beautiful home, the great ward, and just being outside of Utah.   Work is good.  But I'm the only one who benefits from that.  Anne and I were reminiscing yesterday about how close she was, in particular, to certain friends, and she hasn't got that yet.  Noone has.  I suppose that's why friends, true friends, are worth their weight in gold.  They don't come every day, or every year, or even every decade.  They're hard to find, and even harder to keep with how busy life can get.

I digress.  Now, on to Isaac.  We are having a therapist come in 4 or 5 days/week.  She will be coming in to help Isie after school for a few hours each day, with a total of 10 hours/week.  This gal's name is Hannah Peterson.  She's a recent high school graduate, and is starting school at the U with an interest in special ed.  She will be mentored by Scott Pryor.  He was used by a friend at Intermountain (Kurt Peterson) who also had a son with autism.

Isaac is a complex little guy.  He seems to be doing well with his behavior at school.  He follows directions, doesn't hit/kick people very often, and is fairly amiable.  He struggles to socialize with the other kids, and his learning gap in all subjects seems to be widening.  I don't enjoy parent teacher conferences because the gaps seem to be getting wider and wider.  It's easy to lose hope for him in what his future might be.  At school, they have a great process set up where his behavior can "earn" certain levels.  For example, if he's very good, attentive, etc, he can earn a "blue" level.  A step down from that would be a green.  And so on and so fourth until he's finally at a red.  We've built in a reward system where 5 blues in a week (the whole week) and he gets ice cream with dad.   Whether it's the ice cream or the blue itself, he does really seem to be motivated.  This is encouraging.

But, with that great behavior at school, he is stimming and acting out at home more than I can remember.  It's been a struggle.  Perhaps he's using home as a relief valve after being so darn bottled up at school.  I don't know.  The other day I asked him why he struggles so much at home, constantly getting in mom's face, being sent to the garage, hitting/kicking/biting his brothers, etc.   He thought about it for a second and paused (he always pauses), and finally said "I don't get level drops at home".   We need to build our own reward system at home that can help reinforce and encourage good behavior.

Today, Lane Hill, one of his 3 Sunday teachers (who has a separate reward program for Isaac involving coins and OREO cookies) acknowledged that Isaac is extremely sensitive to peripheral noises, light, touching, etc.  But, he said he felt this hyper-sensitivity could be used for the gifts he believes Isaac can develop and share with the world.  So, instead of removing the sensitivity, we need to regulate it, but also redirect it to become a strength and allow him to focus in areas.  Who knows, he could be the next Einstein or Mozart.  So far, he seems to be very average (I love him no less though), but it's not up to me how God develops him.