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Denial, Anger, Bargaining, Depression, Acceptance

These five stages of loss and grief are typically experienced by someone who loses a loved one when they pass. But for Curtis, who thus far has handled deaths of family members much more matter-of-fact than typical kids his age, it was a different kind of loss that brought about these stages of grief.

Up until a couple months ago, Caron was the only ed-tech Curt had ever had at school. She was there nearly every day for kindergarten, 1st grade, and 2nd grade. The person he could depend on to help him get from point A to point B, to explain the teacher's directions when all the other kids seemed to understand, the person who would lead him out of the cafeteria when it was too loud, the person who fostered relationships with other students when he couldn't figure out how to do it on his own. She was the person who stopped him from bolting out of the school when he was five and had him walking with his class and making friends over the next few years. To him, she was a huge part of surviving the school day when confusion loomed around every corner.

Denial: When Curtis learned in early November that it was time for Caron to move on professionally and that she would no longer be his ed tech he refused to believe it. He wasn't defiant, he wasn't particularly upset, he just believed that when push came to shove, Caron would still be there when he showed up that Monday after Thanksgiving break. Not only could he not imagine her not being there, he wasn't even willing to accept it as a possibility. He needed to see it to believe it and his defense mechanisms were on full alert. He denied the possibility that he would be going to school without Caron right up until that Monday following the break. He met his new ed tech with a quiet hello and an expression of concern as to what school would be like without his trusted confidant.

Anger: It didn't take much time after school resumed for denial to give way to anger. He hated Caron, he hated his parents and family, he hated his friends...there was enough anger for everyone in his life at this point. This wasn't expressed at school, where he is more likely to clam up than lash out, but it was prevalent at home and quite hard to deal with. What he was expressing as anger was clearly hurt that things weren't the same anymore and he missed the teacher and friend that had always been there for him. We had prepped him for a long time that someday he would have a new ed tech. and hopefully one day, not require one at all. But like most kids he lives in the moment...and getting by without Caron wasn't something he anticipated dealing with until he had to. But she was gone and he was pissed...and most likely very scared.

Bargaining: This is the only stage of grief not applicable to this situation. He never really believed Caron was leaving until she was no longer in the school and to my knowledge, never attempted to bargain for her to stay. He had questions and all kinds of concerns but attempted no bargains. Once she was gone, he knew she wouldn't be back. At least not in this capacity.

Depression: Curtis has a new ed tech, Miss Mallory, and she's been terrific. But in the days and weeks that followed Caron's absence he clearly mourned their relationship and exhibited aspects of depression. He said things like "I don't like my life anymore. I want to start over." He was more quiet than usual, would sometimes break down and cry, appeared slightly withdrawn, showed a loss of confidence and even mentioned a desire to hurt himself.

We knew he was getting used to a new situation and that this "depression" would likely be short-lived but as a parent, it's a difficult thing to experience. You only hope it's short-lived and that some of the things you are saying and doing are helping.

Acceptance: As we begin 2013, Curtis is working his way towards acceptance. Part of the reason Caron felt comfortable moving on when she did was because Curtis has some great friends in his class and they have been instrumental in getting him back to his old self and able to feel comfortable at school even without his trusted guide. Part of his frustration was centered around the fact that Caron knew him so well. She knew when the lunchroom or music class was too loud or when he needed a break or that he needed help tying his shoes and now he had to start from scratch with someone much less familiar with what makes him tick. But he has slowly been accepting the fact that in life, things change, and they don't always stay the way you want them too. It's a tough lesson but one that we all learn and his parents could hardly be more proud of him for braving through what's been the hardest life change for him to date.


 
 
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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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While many autism spectrum behaviors are unique to the disorder, other issues are no different that what a neurotypical kid goes through, although they can be exacerbated. Case in point, it is the rare child who looks forward to going back to school after a week of freedom from the classroom. For Curtis, it can take some fairly strong coaxing to get him to school on a post-vacation Monday. Today, when trying to counter the opposition to a new school week,  I told Curtis he needed to go to school to learn more things so that he can teach me. He attempted to call my bluff, asking what he could teach me. I told him he has taught me and continues to teach me plenty. Some of these things we had already discussed and I've written about here previously.

Take this picture, which breaks down a half hour block into seven small goals and segments. While my day is nowhere near this structured, I've taken to carrying a planner where I write down everything I want to accomplish in the day. Listing items from working out, to projects at work, reminders to write blog posts, reminders to send important e-mails, or a reminder to do the dishes. Increasing the structure by which I go about my day has invariably led to better results.  It feels good to write these sorts of tasks down and cross them off, even if I don't get to all of them all the time, and I told Curtis I started doing this more after I saw how well it was working for him.

In addition, I reiterated to him that there are many ways he carries himself that I respect and continually learn from, despite his being a newly turned  8 year old. He never judges people and he doesn't trash talk behind anyone's back. Admirable qualities many of us neurotypicals struggle with, myself included, and it doesn't even occur to him to think or talk about people in this way. Any insults he has ever slung at anyone are examples of him testing language and trying to figure things out as opposed to actually trying to hurt someone's feelings. These "insults" are rarely accurate and typically nonsensical.Curtis has no malice and never intentionally harms anyone or anything. Again, I tell Curtis that I notice and respect these traits and want to be more like him in this regard and I mean it.

Finally, I let him know that I understand why going back to school is tough after a break. While on break, he is surrounded by people who know, love and accept him for exactly who he is. At school, he gets this same level of understanding from many but there are plenty of times he struggles to be understood by those who don't necessarily understand the limitations and difficulties of autism. And it's his willingness to take that on that I continuously learn from and take tremendous pride in. As I've said before, his obstacles result in me diminishing the difficulty of my own tasks. Whether that's fair or not, it helps me to cross more things off my to do list throughout the day.

After a short pep talk Curtis got dressed on his own this morning. Amazingly, not a single article of clothing went on backwards or inside out. He walked through the school door with predictable shell-shocked silence but that quickly gave way to making a plan for a successful day. Someday, he may understand the remarkable traits he encompasses that others can learn from and if he never does, it won't diminish the lessons he has to teach.

Greg, Dad

 
 
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Happy New Year.

Curtis is turning eight this weekend and very much looking forward to it. As his birthday approaches, we have a new behavior to deal with, or rather, the current manifestation of a behavior that has been around for years in one form or another.

We have long suspected there was some OCD associated with Curt's autism but as his mom said, do we really need to throw another acronym on top of the others he already has? When he was younger, he exhibited a lot of OCD type behaviors commonly associated with autistic children. He would line up cars and toys and get disgruntled if you messed with the order. The trains on his track had to be in the exact right order too, and he would pick up on it and stare you down if you switched them up. His current kick however is enough to drive any parent or caretaker up a wall.

Remember on Halloween when I posted Curtis' reaction to our checking his candy for tampering? It started a rash of "Is this poison" questions before he would eat anything. It hasn't stopped since. In fact, it's morphed into questions like these, which come continuously throughout the day seemingly without a break:

"Is it okay if I touched the table and then my nose?"

"Is it okay if I eat this after I touched my jacket?"

"Is it okay if I got drops of water on your shirt?"

"What will happen if I dropped some crumbs on the floor"

"What will happen if I sit on this pillow?"

"Is it okay if my arm touched the back of your leg?"

"Is this black dot on my food poison, this chip isn't poison is it, is anything here poison?"

This doesn't begin to scratch the surface of the questions me, his mom or caretakers are getting on a minute by minute basis. Most of the questions are nonsensical and can be answered with either "yes" or "nothing" but for the four of us who spend the most time with him, the questions have been non-stop for the past couple months and received with a mix of humor and frustration. It appears there is a soothing quality in it for him to ask these questions and get the answer he's expecting. The questions he's asking aren't educational or inquisitive, more along the lines of foolish and unnecessary. Though he still asks great questions as well. Most of the time I laugh because even though it happens all the time, the ridiculousness of the question he asks still catches me off guard.  As we explore solutions to him asking all these questions, which may or may not be the result of anxiety, I can't help but think there isn't much we can do about it. And that soon these questions will give way to another behavior that accomplishes the same goal for him.


Greg, Dad

 
 
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There is a phrase that myself, Laura, Jamie, and Caron have heard repeatedly from Curtis since Halloween night.

"Does this food have poison?"

You never know exactly what will set a child with autism off or what will permeate in that interesting and immense brain. For Curtis, delaying the gratification of indulging in his Halloween candy while his parents quickly looked it over for tampering ending up being a little more than he could immediately move on from. Since then, he has been asking us if everything he is about to eat is poison. Everything. If he starts eating, but then touches a chair and returns to his food he asks, "Is it poison now"? This has been happening all day, everyday, and it doesn't matter how many times we explain that checking for poison is just something parents do on Halloween night to make themselves feel better about accepting candy from strangers. That it isn't really anything to worry about. But Curtis isn't buying it. His guard is up. He asks if the little burnt looking edges of potato chips are poison, any little speck on food that shouldn't be there? poison. Not sure how long this will last but it seems to have some legs.

This isn't our first foray into irrational autistic fears. At times, Curtis has been so afraid of bugs, literally anything that flew near his head, that it often made it difficult for him to play outdoors. He would sprint back inside and asked to be sprayed with bug spray numerous times if he were playing outside. We shopped for the safest spray possible and in the summer, he would invariably walk around smelling like "Off". He would flail at the bugs and ask me to destroy them all, to which I would always tell him I only kill bugs inside because outside we are in their home. He didn't like that explanation much. If he were on medication, this seemed to exacerbate the problem, which has been relatively controlled in the last year.

Curtis also had an almost paralyzing fear of elevators until he was about 6 years old. He hated the feeling of being inside an elevator and couldn't process what was going on at all. He hated that slight jump when it started and the weird settling when it stopped. If we HAD to take an elevator, he would burrow himself into one of his parents and tremble with fear until the experience was over. Indeed, there were many times we got extra exercise in the stairwell over an elevator ride in order to make Curt more comfortable.

In order to combat this particular fear, we practiced riding in non-crowded elevators in places he felt safe. I would bring him to work on a Saturday where there was an elevator in our two floor office. I would ride the elevator with him and eventually built up to him riding the elevator himself. At The Children's Museum, where he felt very safe, his mom and I would let him spend entire visits figuring out the elevator in hopes of eventually alleviating the fear. He also practiced at the mall in Danbury, Connecticut, which houses a glass elevator, allowing Curtis to visually experience exactly what happens in an elevator ride.

Eventually, he got over this fear of elevators. He also feels a little better about sharing open spaces with bugs, though he isn't crazy about it. I'm imagining this poison thing will be short-lived, but who knows. Logical explanations don't always take with an autistic child. It's more about going through a process.

Greg, Dad

 
 
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We were recently contacted through this site by Magnificent Minds, an  Applied Behavior Analysis (ABA) center in Toronto with a holistic approach to education. The parent testimonial complementing the teacher who targets her son's needs and implements techniques that address these needs hits home for us. We feel lucky to have had excellent teachers and aides like this for Curtis for the last few years.
One of the common questions we get from friends is wanting to know what Curtis' aids do when they work with him. Below are examples of the work Curt's aids do and why it is so valuable in aiding his development.

It's very easy for Curtis to get off track at school. He is a couple of years ahead in math and reading but a couple of years behind his peers socially. This makes for all kinds of awkward situations that can leave him confused and sometimes defensive. He has a hard time at school without a very defined schedule. Recently when Caron knew she would be out, she broke the day down into 10 clearly defined periods of time for the substitute, including where to lead Curtis at recess so that he would feel comfortable and built in time for reflective journaling he likes to do at 1pm. Knowing that Curtis would be a little nervous with a sub he didn't know, the schedule was constructed to keep him busy but comfortable. The best case scenario for Curtis. He likes doing the same things at the same time whenever possible and this type of front loading prevents Curtis from having an otherwise lost day at school.
After school, the work Jamie does with Curtis helps him to overcome different challenges presented by his autism. She helps him to initiate conversations and stay involved once it has started whether at the playground or a grocery store. Goals include getting Curtis to make eye contact with people he does not know well when he speaks with them. Currently, there are still many times that he won't even bother to make eye contact with people he trusts. When I come home from work Curtis will ask me how my day was and sometimes offer to tell me about his day. These are not questions that are instinctual for Curtis to ask, but working with Jamie has helped him to understand the rules the rest of us play by. That these are the types of questions you ask and this is why you should be interested. Caron and Jamie help with the things that Laura is now trained to do but I am not and Curtis has benefited in his development tremendously with their help.

During these very important developmental years it's great to have people like this in Curtis' corner.

Greg, Dad