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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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Limitations, Talents, and Self-Expression

05/21/2012

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People who just meet Curtis often ask, "So what are his limitations?" "He seems like a normal kid." The answer is as complicated as explaining his talents. There are issues with communication of course, social cues, etc.  But for all Curt's communication problems, he typically finds a way to express his feelings.
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4th grade lattice multiplication
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A poem for mom
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Missing a friend
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Was January 15th on a Monday Last Year? Autistic Thinking and Characteristics of Autism

10/28/2011

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 Autism makes many things cut and dry. I can show Curtis why certain math problems have certain answers. I can count how many chapters are in a book that he is interested in reading. I can tell him the temperature outside at recess time. I can tell him where a certain teacher lives, the route I take to school and I can even link certain emotions to certain events but there are so many questions he asks that I do not have answers to - no one really does. In any given day I probably attempt to answer close to 100 questions ranging from very concrete to very loose ones. Curtis questions things that other kids his age do not usually consider. Will there be an Earthquake in California this year? Why doesn't friend "X" ever have any snack from home? What happens when you die? Why do people litter? What college will my BFF go to in ten years? Will you be with me for the next three years? and so on...) A question that has been repeatedly asked ever since his first day of school is the following..."Why do I have to put my hand on my heart and say the pledge of allegiance?"
I can recite him the rules of being a student and doing as others are doing in the school building, but that's not all he's looking for. He is often attempting to explore his limits. There are days he recites the pledge and there are days he chooses not too. One those days that he chooses to stand on his own, I tell him he's expected to stand, look at the flag and have his voice off and think of a "happy thought". The state of Maine is one of  seven states that do not, by law, push students to say the pledge. I do not think Curtis necessarily knows why he does not want to say the pledge or even why he questions it so much - but I think it's an outlet for him to have a voice, a say in some part of the day and I accept that. When the bell rings at 9am and all 290 students stand up and say the same five lines that have been the same lines since 1952 we stop what we are doing as well, stand up, look quietly in the flag direction and glance a smile at each other. If he starts in on the pledge, I join - but I don't make him.

Curtis questions things, people and events all the time. He catches you off guard, like when he recently asked if last year's January 15th was a Monday. He questions every "rule" at school that does not make sense to him. He questions the morning announcements and nearly every move his friends or I make. He feels emotions much larger than most seven year olds and does not have the developmental abilities to register the magnitude of where his brain goes on a given day. I think its important for anyone who supports, loves and lives with a child who has Autism to remember this. Aside from their behavior plans, their targets, their rewards and consequences - they have the exact same needs and temptations as anyone and they want nothing more than their own personality to shine brighter than any "plan" they are on.

I welcome his questions and curiosities every school day. Today he stood firm on the grounds of not eating a cupcake that one of his classmates offered him because he wanted to be "different". It did not make sense to him to eat the cupcake when snack time (every other day) meant the time of the day where he explores his lunch box that his moms packs chalk full, also telling me that he "wanted to be the odd boy out". However, I knew deep inside that he was drooling over that cupcake but was simply seeking a way to eat it that was a bit different than the other 18 kids around him - exploring his voice and limits. After I listened to all the reasons why he does not want to eat the cupcake I proposed that he eat it at 10:30 instead of at 10:15 when everyone else was and...Ah ha!  Curtis thought this was a clever idea jumping with joy as he was able to be different but still get his cupcake in. Social skill and autism sometimes involves some bargaining.

Caron, 1:1 School Support
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Autism and Not Giving A Damn About Reputation. Life With Autism Has Some Benefits.

10/13/2011

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A recent article on Fox News reveals a study on what I or I'd imagine most other parents of children on the autism spectrum already knew. People with autism tend not to be consumed with what other people think of them. The article explains that concerns about social reputation appear tied to a certain area of the brain, though more research needs to be done to figure out how this part of the brain is affected.
Curtis genuinely does not care what the school populous thinks of him and has no concept of a social reputation. This one in particular seems like more a gift than a curse. How many people wouldn't be better off if they didn't care so much what others thought of them?
He isn't embarrassed about needing more help than other kids at school and he wouldn't be embarrassed if you caught him with his finger buried up his nose with one hand and a Smurfette doll in the other. The entire idea that people would judge each other for things like this eludes Curtis entirely.
Though he is still very young, approaching 8, it's difficult to imagine a concern over social status ever kicking in for Curtis. He has his own way of assessing people, often through very specific questioning, and he makes friends because he is always genuine and very easy to like. As the article states, he can have difficulty picking up on people's intentions, especially if they are using innuendo, metaphors, sarcasm etc. While I want Curtis to have the life skill to read people properly, his misunderstands, at least at this age, are often just cute and funny. His lack of consideration for social standing as a result of his autism seems like a blessing to me. It's at least one area where he is spared a lot of potential headaches.

Greg, Dad
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"Oh My God. You're So Fat, Dad!" Blunt Honesty and Autism, Social Skill and Autism

08/27/2011

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Curt's blunt honesty, a trait of the autism spectrum disorder, has been addressed on here several times but it's a subject that never really gets old. Since most of our social norms and behaviors are foreign to him and not at all instinctual, he lets a lot of things slip out of his mouth that other people wouldn't. In other words, he doesn't have much of a filter. Plus, he's also almost uncontrollably drawn to excess body fat. That's a bad combination.
The few times I'm shirtless around the house, Curtis will spot me and get a look of determination in his eye. He yells "belly!" or "dad, you're so FAT" and does his best to slap my belly fat before I stop him. I tend to carry an extra 10-15 pounds above my ideal weight at different times and Curtis is relentless and unforgiving in his quest to make this known whenever he can. To Curtis, there is simple math involved to how much you sure weigh and anything above that is fodder for discussion...or maybe it's ridicule, regardless, it's never malicious, but born more out of curiosity as to why I weigh more than I should. We've noted that you have to have a thick skin to be around Curtis and he proved it in spades during our recent Vermont trip.
While Laura recovered from gallbladder surgery, it was on me to jump in the water with Curtis and have a good time. But not before I took off my shirt to get in the water. With parents, kids, lifeguards, and sea life looking on, Curtis points to my stomach and screams "Belly! Belly!" and runs up to me. A thick skin sure comes in handy here. Naturally, we tell Curtis not to do this and explain how socially inappropriate it is, but at this stage it's still a difficult impulse for him to control. Another time as we ate dinner, a shirtless camper walked by the cabin and Curtis said, almost within earshot,  "Oh my God, he's so fat, he's much fatter than you, dad". Sometimes we wonder what we're supposed to do with a kid like this.
But I have to admit, Curt's relentless heckling makes me want to do something about it. There is often a method behind his madness. And when I ask him to lay off the belly comments he says, "but I just want you to live for a real long time, dad". I told Curt a couple years ago to reprimand if I order a cheeseburger and he never forgets. He stays on top of my bad habits and inspires me to change them like no one else. So, inspired by his humiliating scene at the camp, I came home and started making fruit and  veggie type shakes and am back down about 5 pounds. We'll see if it sticks but if it doesn't, I know exactly what's coming.


Greg, Dad
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Best to Avoid Idioms When Speaking to Someone With Autism, Born on a Blue Day and a Characteristic of Autism

08/20/2011

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      I'm going back to the Daniel Tammet well for one more entry. On page 163, Daniel says, "Another common saying that puzzled me was when my parents might excuse one of my brothers' grumpy behavior by saying: "He must have got out of the wrong side of bed this morning. " "Why didn't he get out of the right side of the bed?" I asked. That's exactly what Curtis would say. That, or he would start with "Are you making a joke?" His catch-all for phrases foreign to Curt.
      Other phrases that would elicit this response from Curtis include: Go jump in a lake, go fly a kite, don't have a cow, a little bird told me, the refrigerator is running, spill the beans, i'm getting eaten alive, the ball went through his legs (to him that means in one side of the leg and out the other), the sun was in his eyes, etc. Curtis eventually hears some of these things often enough to commit them to memory but most of the time he is going to ask if you're making a joke. And doubt your sanity. I should count the number of "Are you making a jokes'" questions in a day sometime. I believe this inherent misunderstanding of the english language is part of the reason Curtis gets along so well with most of his ESL classmates.
      In addition to idioms, there are many terms and social emotions Curtis struggles to understand. He has a hard time understanding jealousy and asks for many examples to make sense of it when the word comes up. He's also not too great at social cues but it's all a work in progress. In Vermont, he ran up and hugged a new friend and didn't come close to letting go, despite her wide eyed paralyzed stance, until I told him to let go. Curtis just assumes everyone wants him to hug them and a large percentage do. Somehow this all just works out in his favor anyway and makes him more charming. At least to his inner circle it does.
      Incidentally, Daniel Tammet has become somewhat of a hero of mine. There are other successful autistic personalities, like Temple Grandin and Kim Peek, but Tammet is who I hope Curtis can most closely emulate. If for no other reason than he learned to live independently and travel and as much as we love Curtis, it would be awesome if he moved out some day. As much for him as for us. Daniel Tammet figured out the rules the rest of us play by and Curtis seems capable of the same.


Greg, Dad
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