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Autism and the Incredibly Difficult Task of Moving On

10/28/2012

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Now in 3rd grade, Curtis will soon be expected to move on from the only ed tech he has ever known to help guide him though the school day.

Curtis and I started our closure processes last Friday. His growth this year and his ability to tap into every tool that we (as a support team) have instilled in him over the past few years has been very evident. I have said since day one that my goal with Curtis was to, eventually, work myself out of a job. Over the past 3 and a half years I have acted as a mirror for him, so that in an environment where he doesn’t exactly feel comfortable or know “what to do” he can look at me, model, learn and eventually live the behavior that is desirable.

We are at the point in our working relationship where continued growth will happen by being set “free” and exploring every tool he has learned to confront his fears.   I told him last Friday in the afternoon.  We packed up his school bag and said goodbye to his class an hour early. I told him that we were going to go for an old school walk – on the train tracks behind the school like we use to when he was younger and needed more running time and space from the chaos of a school environment..

I did inform one of his best friends in the room of this news earlier in the day so that when we did leave the classroom, he could give Curtis a big hug to (unbeknown to Curtis) make him feel good – to feel connected before the big news dropped. The look in his friends eyes as he was saying goodbye to Curtis for the weekend (knowing the news that I was about to share) spoke of the love and loyalty he has for Curtis. His friends, more then anyone, have made me feel the best about my decision to move on. They are ready to pick up right where up where I will leave off.

We made a stop by my car to grab the half dozen eggs that I brought, thinking he might want to chuck a few at a tree after he hears the news that Ms Barber was going on to another job. We stopped at a bench once we got to the trail and I told him that I had something important to tell him. I started by sharing some “remember when you when you first got to Presumpscot” stories to paint the picture of what he looked and acted like when I first meet him at school - timid, mute, anxious, confused, isolated and unpredictable. I then began to share a reminder of what my job was and is now – and how even that looks different because of how much growth he has undergone.

I told him that it was job to make him feel safe, secure, and comfortable at school so that he can learn.

And learning he has done – he has advance skills in math, reading, and writing.

I also mentioned how my job was to help him make friends and find the good (or the humor) in all those around us; he also has surpassed what his support thought was possible in this area. He has a very diverse school filled with friends of all ages and backgrounds that give him high fives daily, and some special ones that get the hugs. I finally told him that it is now my job to let him go when he was ready – and he may not be able to see it, but I can and it makes those around him very proud and happy and excited about the future.   

His first reaction was backing away from me and saying over and over again, “You’re joking Ms Barber – right? Say you’re joking. Don’t kid with me. Are you lying? ” He then wanted to know if  I didn’t like him anymore and wondering why I was quitting on him and quitting on my job. And his final verbal reaction was telling me that I wont like my job and I will be back working with him by April.

His nonverbal reaction was shredding leaves on the ground and tearing his snack bag with fury in his rambling and in his body language. Before we started to process all these thoughts on our walk, I wanted him to start throwing eggs. I did the first one to model – I threw an egg at a tree while also letting out my verbal feeling, “I am so nervous about this change!”  He then stepped up to the tree, nailing it smack in the middle with an egg saying, “I’m so angry at you Ms Barber!”

It will be the most important job I face over the next three weeks to work through every feeling he has around this transition and to help him into a more clear space. I gave the school a month notice so that I had plenty of time to honor all of these first reactions and leave him in a place where his skin is a bit thicker, he feels brave as an individual and is ready for the new support to come in - or at least ready to fake it.  He will continue to have full support in the classroom.  But it is my belief that, b/c Curtis is an out of sight, out of mind sorta guy, he will step up to the plate when I'm gone.

I have a feeling that he will come into himself as a individual more through this change and lean more from his friends. This ultimately has been my job all along -  to show him the joy of true connection and through this transition he will find his true connection to himself and to his peers.

Caron, 1:1 School Support
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First Day of Third Grade - Curtis Maintains1:1 School Support

09/06/2012

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Curtis took on the first day of 3rd grade like a champ. So much happened, so many hugs were given and so much love was felt that needed to be shared before the first day back giddyiness passed - because inevitably, it will.
The honeymoon period will give way to rules and expectations to be followed against his will and the gas will run out and socializing will not seem as fun and interesting as it did today. But, this 3rd grader was on cloud 9 all day long and was beaming from ear to ear. He even gave the principle a double high five, which says a lot.

I saw Curtis walking up with Greg at 8:35 sharp.  My plan was to meet him in the gym like I also have but when I saw him walking up the school walkway I could not wait to get out there and give him a hug.  I could tell he was nervous.  He walked circles around me for the first 20 minutes speaking about fruit roll ups, summer reading books, pencils he found on the playground, play dates he had, what he did on my birthday that was in July, his dad's plane trip to New York, his new blueberry waffles and the list goes on.

I gave him about 20 minutes to just vent his nerves out but then I wanted to transition him into his class before the breaks came out and before he even knew what I was doing - timing is everything with this kid!!  At first he was glued to my side, holding my hand and giving me hug squeezes, but after a few reminders of my own personal space and his own personal space he was engaging with his friends and just eying me out from across the room with occasional stories or facts being tossed my way.  For the first time ever, Curtis spent the entire day with his class - he laughed and learned along side them and he felt like a 3rd grader and commented on that feeling many times throughout the day saying how "good it feels".

Granted, it is the first day and he is in the honeymoon stage -  but he did not need one break. If he needed to go get some water from the fountain by the office, I did not  need to accompany him as he has secure friends in this class to walk with him. He drew roads to sooth himself when he needed to, but only used up 1 sheet of paper - which also says a lot. His entire lunch box was empty by noon, but I had back up pretzels to keep him going. And at the end of the day, he said goodbye to his teacher and a female friend in another class, an improvement from the past as goodbyes have never been his thing.

Curtis is a creature of habit and it was my goal today to show him what a day like this could look like and feel like - to show him that this is also an option for a "habit".  At the end of the day we spoke about this accomplishment but we also spoke about how its okay if and when he needs those breaks.  However I will not be putting them into his daily schedule as I have in the past.  We will only use them when needed - he may be in a groove this year at 11:45 and not want to take a break and the last thing I want to do is pressure him to pull away if he isn't feeling it. The bar is being risen a bit this year but I can tell when I look at him that he both wants it and needs it and I am so happy to along side him again during this year of growth.

Caron 1:1 School Support
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Balancing Help and Independence in the Classroom: Two Before Me

06/01/2012

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Helping Curtis to build his internal independence and motivation is a goal that is pretty crucial at this point in his education and home life. With the transition into 3rd grade right around the corner and the numerous team meetings (IEP, triannuals, etc.) that we've have had recently, the plan is largely in place. My goal is to create a smooth 3rd grade year and to boost Curt's internal pride and motivation separate from his support.

In the large picture - Curtis has come a very long way from the scared, timid boy whom I met at Easter Seals three years ago and who was getting 2:1 support. He use to bolt during all transitions, he did very little socializing and if left to his own devices, he would connect snap cubes for hours or write endless numbers on top of numbers. His school work was unreadable and done with little care. Sometimes I forget about this and get very future focused but it's worth revisiting as it paints a large, powerful picture of what support and clear goals can do for a student like Curtis.

As mentioned above, a current goal is to boost his independence and internal motivation - i.e. get Curtis to do what's expected with few reminders. Tools used include a system I call "two before me" where he needs to ask at least two other people (peers or his teacher) questions about school related issues/academics before he is able to ask me. He also has cue cards for five certain blocks in the school day where I noticed I was repeating a lot of directions. Now he has a card in front of him with the expectations so my voice can be omitted and he can work to figure things out on his own.

However,  even with all these tools and goals in place - bits of Curtis's struggles still surface daily. This morning for instance he had his cue card in place, he had a friend working beside him and I gave him a reminder of what was expected (completing three math boxes as his morning job - done every morning). I had to run out of the room for a minute to grab a photo copy and when I got back nothing was completed that wasn't completed before I left. When I noticed this and checked in with him as to why he had not done what was expected his response was, "I got stuck and didn't know what to do, so I drew you a maze - see?" Comments like this do remind me of how much work is still ahead both 1:1, among the class and internally for himself but the tools and goals still will guide the way and he will make large jumps, as he always does.

Caron, 1:1 School Support
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Curt's Brain is Always at Home; Even During Constant Cluster Bingo

05/24/2012

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Caron, 1:1 School Support
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Autism and Rewards: Rewarding to get things done and rewarding a job well done

05/22/2012

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The end of the second grade school year is here - 20 days to be exact. Curtis has been up against some large challenges, big obstacles and some heavy emotions over the last nine months. He has taken on the work load of a 3rd/4th grader in all areas, he has blossomed socially in the classroom and in small groups and he has navigated a different hallway, a different mainstream classroom and a different teacher like a champ. To honor all of these accomplishments I have created a chain of "rewards" that Curtis gets to tap into every morning once he hangs up his bag. Each chain link has a "Congratulations - you have worked hard this year, you get to  ____________!" 

The rewards are mostly centered around struggles he has gone through (and successfully made it out on the other side) all school year. For example, he usually puts up a fight in doing his morning work on Monday morning after the weekend. So, one of the rewards allows him to skip it and "take a chill pill in my chair", on another day he might get to "skip" music class - another year long struggle for Curtis. Finishing some "useless" (according to Curtis) classwork has also caused a lot of stress for him. One of the rewards coming his way this week is to go through his math journal and rip out one page and putting it in the trash - something he has been itching to do all year long. I lined up the chain links with certain rewards on certain days knowing where he is usually struggling and making the last chunk of the school year smooth and filled with joy and pride - as it should be. We all deserve to be rewarded for making big leaps in life. Curtis has the next 19 school days filled with rewards for navigating second grade like a warrior and coming out stronger on the other side.

Caron, 1:1 School Support
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The Calm Crown, Settling the Body Down at School to Stay on Task

04/24/2012

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Curtis has recently started wearing a "calm crown" on his head (he made it, i suggested the idea), a tangible tool to help maintain focus. He puts it on when he needs his body to be in control and to get work done. Because the crown is generally off balance on top of his head - it really does work to keep him feeling balanced and focused so it becomes a challenge to balance the crown and do his school work.  He takes it off during recess and gym, snack and lunch but the crown stays on his head during all work time. This has helped him not "collapse" as much as he had been doing the last few weeks - when he is feeling overwhelmed and essentially quits with a collapse to the ground and insistence that he "can't do it". He loves the crown idea and, while there is no telling how long this particular method will be effective, it has made the past two days go very smoothly.

Caron, 1:1 School Support
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Dealing With Overstimulation in School

04/18/2012

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It is now becoming easier to tell when Curtis is overstimulated by an event or an activity in school. During his kindergarten year, overstimulation looked much different - mostly due to his lack of verbal communication. He would often silently muster through a school activity only to later have a very emotional and sensory induced break down that would throw the rest of the school day off. It reached a point where I had to use the hallway and/or the back field as his classroom to keep his mind and body in a working place. He had not yet learned the link between an event, feeling overstimulated and how to register it all together inside the classroom. This a skill most kindergartners struggle with but for Curtis, his lack of ability to communicate was of particular concern and the area I focused on the most.

I remember he use to get very angry at me when we would sit down to do academics or when he was asked to work beyond his desired preference activity. Pulling him away from writing numbers in a row (his fall back choice when he was 5) and transitioning him into academics was very difficult to say the least. His body would be tightly wound up, his engine would be very fast and he would thrown things off my desk or zoom around the classroom trying to get away. I had to introduce a tool to Curtis that gave him both an outlet to release that energy and also have something in place where that release  could be matched with expressive words. The long term desire for this tool was to provide Curtis with the words that went with a feeling so while in school and communicating with teachers - his words could replace what his body was wanting to do (throw anything across the room and run as fast as he could out of the school).

An example of a learning tool that we did together to work on this goal during his kindergarten year was to go outside and toss a weighted ball back and forth to each other with certain dialogue in place. Each time we tossed it - we would shout out something that was making us angry. I would always start this "shouting" conversation so he had something to mirror and use as a role play to keep things appropriate.

"I'm so frustrated that it is Monday!"

I'm so angry that I can not see my family this weekend!

I am so frustrated that it might rain tomorrow!" -

all said with emphasis on the word frustrated.

And he would shout back with, "I'm so frustrated I have to be at school!

I am so frustrated that we do not have Art today!"  - and he would mirror back to me the emphasis on the word frustrated as well.

We would go back and forth for at least ten minutes with whatever was bothering us as we threw a weighted ball. I have written in past posts how the use of Relational Therapy goes hand in hand in my work with Curtis (and with this concept) - exposing ones own feelings, the client (student) naturally exposes their feelings and learns from both the support person and also from themselves through this relational concept. 

This relatively quick activity would help to release some energy, get his body tired, and also pave the road for being able to then (once inside without the weighted ball) have some words to go along with a transition or a moment that is upsetting him. Once his body was tired enough we would go back inside and  try the transition again but this time with certain words (being frustrated or being angry) in the forefront of him mind.

I have an image of Curtis that I will never forget from when he was in kindergarten, shortly after we came back inside from this activity. We were about to transition into a math lesson and he stops in the hallway, crosses his arms and says to me, "I am so frustrated with you Ms Barber! I don't want to do math!" . I praised him  for suppressing the desire to thrown anything on the floor or run out the door, but he did have to finish his math work. However, this time he at least had the sense of pride that comes along with effective communication.

For the remainder of his kindergarten year we did a lot of stomping our feet, tossing balls against the outside wall, ripping up paper and journaling - all while discussing whatever event was overstimulating to him. By the end of his first grade year he was able to put an action with a feeling much more verbally and also without all of the ripping, running, throwing, tossing or moving that went along with it in kindergarten.

Now in second grade, Curtis' vocab has progressed significantly. He uses sentences like, "I feel trapped in this room - I need a break"  or, "The room is always quiet for the first minute of an activity and than things get crazy. Can we get out of here?" or, "I learn better when things are quite - can we go to a different room." When Curtis shares these feelings I honor and listen to them. As much as it was my job to help form those words over the past few years, it is also now my job to listen to him and provide the support he needs now as a second grader whose voice is becoming louder and clearer with each day. As much I like to think that I lead the school day for him - he has started the process of leading the school day for himself. He is beginning to recognize when he is overstimulated and the ways he can cope with it.

Caron, 1:1 School Support
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Autism Pride and Spreading Awareness

04/03/2012

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Curtis shined yesterday at school like I have NEVER seen before. I always start the day (mostly holidays and special occasions) with a bit of hesitation and apprehension - never really knowing where the day could lead. However, on his special day, Autism Awareness Day, things unfolded beautifully guided mostly by his pride.

Curtis gave a "service announcement" to his class explaining the importance of April 2nd first thing in the morning.  Then he did a classroom survey wondering who was wearing blue. He sported a T-Shirt that read "Autistic Genius" and he did a four room "Read a Loud Tour" (as he called it) to different grade levels among our school. The read a loud tour took practice, rehearsal and a whole lot of guts for Curtis.

He sat in a big chair in front of four different classrooms and read a book explaining what Autism is, what it looks like in the classroom, what some kids might struggle with, what some kids might succeed on and how a student with Autism might feel in a classroom. Curtis' voice started off shaky during the first Read A Loud but by the fourth, he was a professional. We ended our time in each room where his peers could ask him questions, make connections or give him compliments - every one was quite impressed with his reading skills and his bravery. At the end of the day, as Curtis was leaving the school we had this powerful (but simple) conversation:

"Ms Barber, will I always have Autism?"
"Of course you will - just like you will always have brown hair. Sometimes it might look different and you might get it cut, but its still your hair - its part of you."
"Oh - just like you will always eat too many cookies and have red hair, right?"
"Exactly! No big deal at all!"

Caron, 1:1 School Support
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Head Phones? Check. Snack? Check. Red Car to Hold? Check: He is Now Ready for the School Wide Meeting

03/29/2012

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Each month Curtis's elementary school has a community, school wide meeting in which everyone - all teachers, staff, students and even some parents - come together in the gym and listen to music, sing songs, play drums and recognize which students have demonstrated certain character traits that has been highlighted each month (and received the positive reinforcing "ticket"). This is a new concept and monthly activity for school this year, so of course it has taken some time to get Curtis comfortable with the whole ordeal.

He hasn't jumped on board as much as other kids but he has been able to move from 100% refusing the first community meeting to attending yesterday's meetings in their entirety. I did have to alter both the conversation about the "character trait tickets" as well as the expectations I have for him in order to calmly get through these school wide assemblies and get him on board with demonstrating the traits daily. Curtis is expected to stay for the whole meeting, but I have sound blocking head phones to omit the loud noises that come from the cheering or the sing along. He is expected to show respect to those that are getting the monthly awards by giving them a thumps up (instead of clapping) and those that choose to participate in the singing, but he does not need to actually sing the songs himself.

He is expected to demonstrate the highlighted character trait of the month, but I do not expected him to "make a big deal" about it - nor does he expect that out of me. Instead, we have a private "deal" going where if he demonstrates the trait 5 times in a month ( he tends to demonstrate the trait numerous times a day but to avoid overkill I wanted to narrow it down to 5 really good examples of the trait) he receives a $5 gift card for ice cream. These tweaks to the original school wide idea have made it possible for Curtis to feel what the others are feeling and experience what the others are experiencing but fine tuned to his needs. This is a goal that I am trying to constantly reach with him - finding the balance between being one among his school but tapping into his individual needs as a student with Autism.

Caron, 1:1 School Support
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Expanding the Coping Skills Toolbox at School

03/18/2012

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I introduced yet another "tool" to Curtis for him to put into his Coping Skills toolbox.  Any way I can eliminate my voice and my direction and still meet Curtis's needs is a good tool. This most recent addition is a menu of sorts that Curtis can chose from when he needs a break. The flip book is clearly called "What to do when I need a break". He wears it around the school like a bracelet and anytime his body, brain or emotions are feeling as if he needs a break - he is learning to flip threw his options rather than ask me first. The options in the book include:

1) Taking a walk around the school with Ms Barber.

2) Grabbing a snack and sitting in the quiet space while he eats it.

3) Taking a walk to the schools water fountain with a friend and getting some water.

4) Journaling in his self-time journal at his desk for 2 minutes.

This form of self-directed soothing is vital to his long-term goal of reduced 1:1 support. I can read his body language, his facial expressions and his energy like the back of hand at this point in our working relationship but there will be day when I am not working so closely with him. It is crucial that he knows what to do when he needs a break and how to get through stressful situations calmly and in a way that will benefit himself and his environment.

The work with Curtis is filled with focused baby steps - he is slowly getting to a place where his voice is getting more and more defined and his needs are getting better met by either himself or from his peers. My work with him is still vital in his growth but as a fellow teacher put it yesterday (at its best) while she passed by him in the hall she said, "Curtis - I have noticed such growth in you over the past three years. Your hard work has really paid off! Good Job!"

Caron, 1:1 School Support
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