The mailbox

The mailbox was a short church film that I remember watching as a child/youth.  The take away for me on this film was that we should do what we can to be mindful of others - where possible, don't neglect those who might benefit from our attention.

Well, Isaac, our youngest has just discovered the world of mail.  Forget about email, snail mail is where it's at, which makes sense if you're an autistic kiddoe who grabs on to tangible items and struggles more with abstract concepts like email.  It's all about communication.   We are always interested to see how he is growing in his communication and ability to interact with others in his own special way.  It may not be as rapid as we would hope, or as deep as we think he needs, but he is growing and developing, even as he battles with autism.

So, in Isaac discovering mail, he decided this might be something worth participating in.  Today, I come out to the mail box and what do I see?  Some half-sealed letters, thick with mystery contents.

It turns out Isaac has written me some mail (apparently we don't talk enough at home), and he definitely has something to say:

It turns out he needs me to understand that he isn't fed enough.

He also likes camp fires, but understands the need to be careful.

This is one of my favorites.  Tell me where it hurts.   We never discussed it in detail, but if you look at his right wrist and hand, he appears to have a burn (mis-spelled it as "burr").

Not 100% sure where he was going here, but I believe he was getting burned over the gas stove.  Ouch!

In the end, whether he really means it or not, I'm still accepting the gift.

I love these pictures.  They give us a window into Isaac's life.  They help me imagine how he sees things, how he thinks, and how he chooses to communicate outside of voice.  They are unsolicited, unscripted, pure Isaac.

We are by no means perfect parents, and our relationship is by no means perfect, but our love for this little guy is honest, abiding, and eternal.

Thanks for the letters Isaac.  Sooner or later, we need to talk about stamps. :)

 

 

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.

tracking progress

Isaac has been regressed in a few ways over the last 3 or 4 months. Unfortunately, his regression is all I focus on, where he's actually experienced a lot of personal growth over the same time period. I fear I've been guilty of ingratitude as I look back and forget about some of the great things that have happened to him. This block serves to outline some of those observations:

yesterday, while at church, we were given some chocolate cheerios by one of Nathan's former primary teachers. Isaac was the only kid with me at the time, and didn't act interested/grateful for them at all. When we got home, Nathan was extremely interested and asked to have some. I told him that if he could guess who game them to us, I would allow him to have some. He went through 3 or 4 names without hitting it and started to become discouraged. He ran out of names. I then asked Isaac......"Isie, can you tell Nate who gave us the cheerious" and Isaac said in his very cute, inflected voice (just as a normal kid/adult would have said it with a big smile as if to say "you should'a knew this") "Sister Matney". He has come a long way in social interaction.

The other day, I engaged Isaac with a game called Zingo. He really liked the game, but we hadn't played it in some time - not sure why not.

Anyway, I had to bribe him to play, because he was too busy stimming (stimming has been quite a distraction for him lately) to be bothered with a game that required interaction with another person. In the past, he would play, but he was never really "in it". He never cared who won the game or how close they were to winning. It just never crossed his mind. Well, this time he did care. He was very involved - being very excited as he got closer to getting bingo, counting down the number of tiles needed before beating me, as well as counting the number of tiles he had on the game. At the end, he got so into the game, I found myself hoping he would get the last piece just to avoid a melt-down (in addition to hoping for his success). He did get the last piece and beat me - he was so excited about beating me! He went and told his mother the great news which I was thrilled about. He really has made a lot of great progress and I fear that has been left out of the picture more often than not.

He did have a major struggle/meltdown at church and one of his teachers had "the look", the look I was fearful of for a long time. The look that says "I don't get your kids" and "I'm really sick of him, I don't care what his diagnosis is". Anyway, he told me "Isaac had an extremely bad day today" which I was already aware of having left EQ a few minutes early b/c I could hear him screaming in the halls - I'm not talking gentle screaming, but the kind of screaming that shouldn't be done ANYWHERE, especially not church. We need to work on helping him with transitions/change. He still struggles mightily with that.

Also, this week, Anne will be taking him to Colorado Children's for an EEG (he'll receive an MRI later). I will be absent from all of it which I feel terrible about. To help out somehow, I will be staying up with him this evening until midnight and getting up with him @ 4am. He then must stay awake until noon when the EEG will take place.

Anyway, we're looking forward to getting some answers about some of his regression (incontinence/loss of speech). It would be a blessing to learn more about his disease and how we could treat it or at least understand him a little more.

IEP for kindergarten (transition meeting)

"When you've met one child with autism, you've met one child with autism" - they are each so unique with their needs and how they manifest symptoms.

The KEY: Isaac can do anything if motivated and given time to process.

So, we must motivate him and slowly cut down on the time-to-process. He responds to time periods, if not always to timers.

attending:

preschool -

Lee Q - OT

Lee P - ST (South African)

Lee S -lead (not attending)

Peg - lead teacher

grade school (kindergarten)-

Karen Foreman (30 min/week) (ST)

Kathy (30 min/week for fine motor) (OT)

Sarah Cooksy (4 hours/week) (special ed coordinator)

Last Thursday Anne and I met with the redstone preschool group (the main teacher, his OT, ST, and educational leader as well as assistants). In addition there were folks from the grade school (ST, OT, and special education coordinator). The purpose of the meeting was to discuss Isaac's transition from preschool to kindergarten, what assistance he might need, what kind of resources we might expect, etc. Much of this discussion hinged on the progress Isaac has made throughout the entire school year. I.e., his progress would be reviewed and his needs would be determined based on his progress.

Now, this is a very strange meeting for a parent. The parent wants to get as much help for their child as possible. Ideally, they would love to have an OT/ST with their kid 4 or 8 hours every day. However, if the outcome of the IEP determined that depth of need, it is very likely this kiddoe was making very little progress. So, on one hand we want our kid to have services, but on the other hand, if there is legitimate progress being made, it could mean he needs less help than the next kid. Anyway, that is the tight rope I have felt we've walked on many occasions.

So, Redstone elementary has a resource learning center. When I was growing up they called this special ed. And from my memory, it was for kids that were mentally retarded. I don't remember anyone else going to these classes. Looking back, certainly mainstreamers were attending and I just didn't realize it. Anyway, this group the "resource learning center" will be following and working with Isaac for the next 6 years.

Review of the year:

Lee Q (the OT) went first.

She talked about how important it was that Isaac use questions for communication with both teachers and students. He has the communication down with teachers, but not so much with the students (perhaps because teachers are willing participants in the communication - peers are not always willing). Next year they will be working with him to increase peer interaction.

Another thing that they really look for is the ability to be spontaneous. Isaac is spontaneous, but only his own terms. I.e., he needs to work on 2-way spontaneous communication. He will have an EA (education assistant) to help him work on this.

As far as OT is concerned, the ultimate achievement is when a kiddoe can cut a diamond pattern with scissors. Curious, I asked why this is the case. Lee said that it has to do with how a child must position the paper, the spatial relationship with eyes, hands, and paper. This is much more difficult for kids with delays than, say, a square or circle. Anyway, she said he was able to cut the diamond without any problems toward the end of the year. She was extremely excited to report this progress.

She also said his interest and motivation in the last 2 weeks has increased greatly. She's not sure what to attribute it to, but definitely has noticed this.

She said they need to work on pre-literacy items and that this should be a focus during the summer and early part of next year.

She was concerned with his hand-strength as he will, at times, forget about the "alligator grip" (we call is pinching) when using a pencil or crayon.

Isaac was able to trace words, can write his own name as well as his dog's name, Max. Everyone was very excited about this milestone.

Some that stood out to her with Isaac is that he will be flat-lined on his progress, which is extremely concerning to an OT/ST who's evaluating him. In terms of scales, they will be waiting for him to move from a 1 to 2 in development (as the other kids do), but that just doesn't happen. He is far below achievement. Then all of the sudden, he will go from a 1 to a 5, seemingly overnight, and bypass the progress the other kids were making. That is how Isaac's brain works; that has been how progress occurs. She councilled next year's group to be aware of this and to not be too discouraged/concerned by this. This can be a risk to a teacher that is unaware of his learning/development style.

Lee P -

Lee P is highly involved in Isaac's development. She has been very good at engaging both Anne and me and is emotionally invested in Isaac.

Visual Input and auditory input are important dynamics for Isaac. When he is struggling to pay attention or participate, it is often because he needs a swing activity (the visual/auditory input). It is important that the KG leaders know he needs access to the swing. He will ask for it, and should be granted it, but will need to have boundaries enforced throughout the year. The goal is to have him control when this input occurs and how long it occurs.

She also said that Isaac will almost always respond to the leader, although he might take a long time to respond. With the unaware teacher, this might be interpreted that he is not paying attention or isn't participating or is in non-compliance. The teacher might think there is a behavior problem, where Isaac is just slower at processing the information. Sometimes, it takes Isaac up to 30 seconds to process directions. She said there are 2 reasons for non-compliance:

1-slow processing speed

2-doesn't want to follow

They will be working with him in both areas.

Miss Peg said that she purposely sits directly infront of Isaac so that he knows she is talking to him. This works very well when they are in a group setting. It works so well, that at times Isaac won't respond to Miss Peg unless he has that direct eye contact. So, an opportunity is to get Isaac understanding directions in a group setting where the teacher isn't focusing directly on him. Again, it requires Isaac to catch indirect communication and the nuances surrounding it. Isaac needs to turn from "Isaac do this" to "class, it's time to do this".

Isaac will need to work on following directions, even when it's not part of his own agenda. That is probably the most challenging thing for an autistic kiddoe.

They also talked about his ability to discuss multiple points of interest when reading a book. He started out being able to discuss 1 point of interest, but now can discuss up to 8 points. That is great progress! The goal is to get 8 point under 60 seconds.

One goal they had for the following year is for him to engage his peers with phrases:

"look what I've done" or

"you just colored blue"

They mentioned that he needs help articulating the vowel-part of "R".

They also said that he gets stuck on certain sounds, patterns and can't get past them without help. E.g., Miss Lee P said that Isaac "hears the fish lips" as they play with the floating plants or surface at the top of the tank. He can actually here that from across the room! It is amazing.

At one point, he heard a paper over the fan. Noone else could see/hear it, but Isaac could and he needed for someone to show it to him before he could settle down. "Yes, the paper over the fan is making that noise". As soon as they ack'd the paper over the fan, Isaac was just fine.

Sarah Cooksie -

She said that the KG classes have 3 EA in the AM and 3 EA in the PM (Isaac is in the PM).

"But Blakey has some sour cream"

Isaac is growing each day, but his stimming continues to be a worry and many times over-powers his ability to learn.

Today, Isaac was sitting at the table with the other kids as we enjoyed a family dinner. He LOVES sour cream and always asks for it (and often times will eat it by itself). He had the understanding that everyone had to have at least 3 bites of their enchalada, and THEN sour cream. For some reason, he thought Blake was getting sour cream without having to eat any of his enchilada. He cried out "But Blakey gets sour cream". It was so funny. Why is that important? I think it's something we haven't seen before: comparison to others. It is showing the ability to look at his surroundings and draw comparisons between himself and others.

Just as he's growing that way, he is also extremely distracted by flickering lights (that noone else would see), dish washers, clothes washers, showers running, etc. His therapist said today it's dishwashers, tomorrow it will be something else. Their approach is to redirect him from the distraction of the day.

Great progress, but still stimming

I haven't written in the journal in a long time. Isaac has been assigned ABA, ST, and OT for quite a long time now. ABA is only within the last 6 months, but the other two have been ongoing since we arrived in CO - for the last 2 1/2 years. He is making tremendous progress in eye contact, asking questions, etc. One area he is really struggling in, however, is stimming. He is able to learn very well, but when he is stimulated (by a sound, a texture or something else), all learning takes a back seat to his need for stimming.

He is learning many phrases and creating his own language around these phrases. The other day I was asking him to feed Max, our dog, a bone while on a walk. He kept telling me "Max is not hungry" and "He doesn't want a bone". Then, at some point, he said "OK, I know Max is hungry, but I don't want to give him this bone. It was cool to see him reasoning within himself and explaining the "why" behind his decision.

My goal for this week is helping him stim only when appropriate.