It's not shocking when children on the spectrum refuse to participate in something out of the ordinary. Well, Curt finally won a persevering ticket at school. Each month its a different trait that teachers give tickets out for when we catch a student exemplify the trait. He has been against this whole thing (even though he could have won 50 tickets by now) but I have been able to see a difference little by little in him and his curiosity for getting one and accepting one. I finally found a time where I knew giving him a ticket for persevering would not freak him out - while he was drawing roads! He got so excited but really wanted to keep it a secret so no one would make it a big deal. He used it as fuel to focus on activities the rest of the day and would say, "Things are so good because I got a persevering ticket" :)

Caron, 1:1 School Support

Curtis often surprises me with his daily, weekly and monthly academic progress - and more often than not, it  takes on a life of its own leaving me in awe. I consider my job to "bite" the moment I notice a new academic skill emerging and then support him through that learning process.

It's important he senses he is in the driver's seat so he can feel the sense of pride that comes when he masters a new skill. So far this year his interest has driven new academic skills including perimeter measuring, area measuring, mapping and grid work, multiplication and division work games, autobiography writing, an independent project of the solar system lay out, weekly spelling tests, and most recently learning the art of cursive transcript.

I have found that cursive writing practice has also acted as a tool for calming his engine during the day. The motion of writing in cursive is therapeutic because of the focus it takes and the smooth motion of the arm and hand extension.

All of these skills are separate from what his class is doing - mostly because they are a good year or two ahead of his second grade classroom. He does these independent projects in addition to his actual 2nd grade classwork. I have to keep his day rather full and his brain engaged or things tend to fall apart during lag time or longer than needed transitional moments. Because of this, I have a stack each week of "Curtis' work" that we tap into as the week goes on. As I have mentioned in a prior post - Curtis has been noticed in this school by a few teachers as the "most hard working student" in the school. He may not be excited about that title or understand why he has been coined with it - but his support team understands:)

Caron, 1:1 School Support

In the morning....
1) Skipping around the school first thing in the morning (disguised as his morning "job")  wishing all of his buddies from different classes and different grades a Happy Valentines Day. If the class was in the middle of a lesson, he whispered the message in their ear and tippy-toed out like a respectful little cupid.
2) Walking around the classroom non stop sharing his Happy Valentines Day sing-a-long card that he got from his grandma - after 6 hours it started to get a bit repetitive but he loved it - as did his friends.
3) Shoving a cupcake in his face - deliberately trying to get the frosting all over his nose and then running out the side door for recess to get his "ya-ya"s out. He just ran laps around the playground for 30 minutes.
4) Having an all girls lunch date in the classroom - with six girls. He sat at the table with a huge smile andC-H-I busted out multiplication tables to impress them.

In the afternoon....
5) Ripping up a Valentine BINGO Activity board proclaiming that he is "never" going to play -  2 minutes later he was playing with a smile on his face and won BINGO, choosing a valentine pencil as his prize.
6) Around 2:00 he had his first (and only) sensory overload breakdown lasting about 10 minutes but he was sobbing curled up in my lap and clearly exhausted. I just let him cry and than he put that warrior face back on to muster threw the last hour of school.
7) The sensory breakdown was followed by his ripping open a fun dip candy pouch where sugar went flying all over us. He then reached for another candy to rip open and shoved another cupcake in his mouth - all within 30 seconds.  I had to force feed him peppers to balance all that out.
8) At 3:00, his parting words to me (once again) where "Things will be back to normal tomorrow! Lets not talk about this anymore."

Caron, 1:1 School Support

Birthday parties are often difficult for children with autism, ADHD, and Aspergers. There is a lot of pressure on these kids as to what is expected from them at these parties. The unexpected nature of the different party activites coupled with the inevitable stimulation overload can prove trying. Parents often struggle as well, sometimes from a staffing point as these kids typically have a hard time making and maintaining friendships at school, but also because the child's behavior is unpredictable at these parties and the experience isn't all that enjoyable for the parent either.

While Curt's birthday parties generally went well when he was younger, the past couple of years we have chosen to take him somewhere special for his birthday with just his mom and dad. This has been his preference and we've had a great time respecting his wishes not to have a party by visiting museums and aquariums to celebrate his birthday. But that doesn't mean Curtis can't throw a party. As long as everything is completely expected and as he planned it to be.

Curtis spent a little time each day last week planning a small surprise birthday celebration for his mom. It was out of character in that sense that he typically does not want to talk about birthdays and never parties. Things that occur just once a year are not things he enjoys. However, he continues to become a little more open to things as he ages and he took this party head on, planning every last detail of the party. He asked me to pick three things: East End Cupcakes (the best in Portland, ME), $38.91 in small bills and change and noisemakers from the party shoppe store.

With Caron's help he constructed hats for a party, cards, and a Wheel of Fortune game for his mother to solve. Cash per letter ranged from a low of a penny to a high of $8.00. Laura won the cash prize of $38.91 by successfully completing the "Happy Birthday Mom" puzzle, just as Curtis had planned. Curtis felt empowered planning all aspects of this party for his mom and has a positive birthday party experience to draw on for the future. Positive even if it did kick-off with Curtis unexpectedly vomiting down the front of his shirt and on his socks.

Greg, Dad

_ The week leading up to Laura's birthday was one of the most caring, thoughtful, and compassionate weeks I have ever experienced with Curtis. Having had gone through three years of his birthdays, his parent's birthdays, and his friend's birthdays, I have learned to be very careful in discussing these sorts of events and the expectations that tend to follow - but Curtis blew me away this year in his ability to communicate, plan and be excited about something that had nothing to do with himself, drawing roads, monkey quest, youtube or the goods in his lunch box. He turned a corner that was beautiful to watch and certainly worth sharing on this blog.

On the Monday before Laura's birthday, Curtis came to me and told me that his mom's birthday was the same day as his basketball game. I took this information and reacted with a "no big deal" tone as I simply suggested that we should eat some cupcakes at the game. Leading with that comment was easy for Curtis to digest - it had nothing to do with any expectation placed on Curtis and everything to do the joy of eating a cupcake in his mom's company -  a guarantee "in" for a kid that loves cupcakes and his mother. After he replied with an "Oh ya - that sounds good!" (but with a bit of hesitation in his voice wondering what other suggestions I had up my sleeve) we began to discuss some other things that we could do at the basketball game for his mom that would be fun.  We would work calmly together all week to put his party plan in motion but we didn't need to talk about it too much or with too many people, because after all, it was a surprise. Another sneaky move that lead to a success of a party thrown by a kid who has detested anything to do with birthday parties in past years. With cupcakes used as bait and the idea of it being a surprise as the foundation - we were set to create a fabulous 33rd birthday party for Laura. 

Shortly after these beginning conversations, we decided it would be best if we created a "How to Throw a Birthday Party" list - jotting down all the things we needed to get done before the big day. That Monday we created the party hats from a template online, Tuesday he created the birthday cards - complete with a birthday pencil from the school office, Wednesday we created his Wheel of Fortune game (in which he wanted his mom to win $39.81 to buy anything she has always wanted to buy), Thursday we created her birthday package and on Friday we wrapped it all up in a big blue (her favorite color) envelope. All of these activities were done during his earned free time - he sacrificed his favorite time of the day for his mom.

I was than given the strict direction to pick up the cupcakes at 5:30 and meet him and Greg in the school's OT room at 6:20. Greg was directed to bring noise makers and a tie to blindfold Laura. The birthday party was set to start at 6:25 sharp and go only until 6:45. We had games, music, food, presents and a small number of invited party goers (Greg, Laura, Jamie and myself). He wanted to invite the whole basketball team but to avoid it getting too out of hand and ending with complete over stimulating melt down - we agreed that these five attendees were enough because his mom would want it small. This was a fantastic way to exemplify what it takes to create a party, and done so in a predictable and scheduled manner. Curtis felt empowered because this all came from his heart and I felt lucky to see it unfold start to finish. 

As Greg has mentioned in his post, the party was a success and the five of us had a blast. I laughed, cried a bit, smiled and saw a young boy take on something so large with his larger heart for his mom. The party lasted 15 minutes longer than he had planned and that was also great to experience with him. I see Curtis every day live down to the minute on activities - he knows whats going on, when, for how long and most importantly - what follows. It was nice to see time pass him by without staring at the clock wondering what comes next. The party for Laura was all he cared about in that moment - that was all he wanted to "come next". And to wrap it all up in true Curtis style, as I was leaving he goes to me - "Well, now things can go back to normal!" That final thought was like icing on the cupcake - he gave, planned, loved, organized and worked so hard that (like all of us) he felt rather exhausted when it was all over but had the foresight to know that everything will be back to normal - his normal - by tomorrow.

Caron, 1:1 School Support

_"This is my back scratcher! Ms Barber got it for me because she has been scratching my back for three years and wanted a break!"

That pretty much sums it up. I have been planning on getting him a back scratcher for awhile now. Every time he is sitting at circle or sitting at his desk he requests that I scratch his back - a sensory feeling he seeks when he needs to be soothed during stressful time. And who doesn't love their back scratched? I could get away with being his personal back scratcher in kindergarten and even in first grade - but now that he is in 2nd grade I thought it was (finally) time to implement an independent and a self-soothing skill that he can take control over during the day.

He has taken to this in a way I knew he would. I painted it red for him, and he was quick to put 7 smiley face stickers on it first thing this morning, representing the 7 people in his life who help him out - his idea. The back scratcher has accompanied him to morning meeting, it has provided a break during a math test, it has walked with him down the hall (scratching the whole way), it sat next to him during lunch and it has provided quite a bit of conversation among his class and friends. The way he describes the feeling of it ('OMG - this feels SO good!") and the way he describes the reason he has it are priceless to hear.

Caron, 1:1 School Support

_Walking through the door in the morning is often the hardest part of the entire school day for Curtis. I see him walk up to the building with a look of fear on his face that he often masks with a smirk as he relives a funny story or rethinks a funny joke. This is how Curtis registers and/or prepares for the transition into another "world" -  he dips into a coping skill that many of us use all the time; covering up fear with confidence and humor. This balance - or his attempt to balance - between the two extreme emotions can be a lot to handle first thing in the morning. It usually takes us 10 - 20 minutes to ease out of his transitional survival mode and into a calm and happy school day.

However, within those 10 - 20 minutes I get the most "road blocks" thrown my way, the most questions asked, the most attitude on his sleeve, and the most anxiety centered behaviors demonstrated. The transition out of school and into his home life is pretty similar.  I prepare for this transition on my end the same way as I prepare for the morning, keeping everything predictable and timely.

Every now and then, based on his mood, we will exit out of a different door to alter any negative "exit" habits he may have formed and allow some spontaneity if it eases the transition. For the most part, he likes these two transitions to be predictable and down to the minute. I very rarely get a "goodbye" once I open the school and the two worlds (school and home) come smashing together. If I want a goodbye and/or an exit debrief - I have to do that in a very sneaky way without him even knowing we just said "goodbye". He has never been a fan of saying goodbye to his friends or any of his other teachers since he started coming to school three years ago. I think he musters through the school day with all sorts of social etiquette strength (that does not come natural for him) and survival energy (that takes a lot out of him) so once 3:05 hits - he is tapped and he needs to exit in his own way.

I dont take any of his transitional moods personally. He is a kid that does not like pressure and/or emotions and more often than not those attributes are present in any transition. When people are transitioning into a new event they often say hello, goodbye, how are you - questions are asked, energy is shifting and different expectations are present. Curtis has a lot he is trying to register in a short time and the best thing I can offer is my patience and thick skin. I do believe though that it is as important to pay close attention to these transitional moments and to acknowledge what a child needs during the transitions as much as during the activities or events that tend to follow a transition. The transitions only last a few minutes, but for Curtis, I am quite certain they are the longest few minutes in any day.

Caron, 1:1 School Support

Getting Curtis to school in the morning isn't my easiest part of the day. Typically, it involves ending an activity he likes, such as playing "Monkeyquest" online or watching a cartoon, then getting him to participate in putting on his clothes, gathering everything he needs for school, and getting out the door. He doesn't do much of this willingly and usually wants to argue about why he can't bring his batcave or some other toy or electronic to school. Curtis always pushes the clock and we get out the door three or four minutes after our planned exit time. He always asks if I'm mad if we're late, if it's okay if we're late, what will happen if we're late. I reassure him each time that everything is fine.

I think I've written on this before but I always keep the walk to school as light as possible. I won't bring up a topic that will get him thinking too much or make him nervous. I understand how hard the transition into school is for him, or at least my perception of how hard it is, and do what I can to get him to the door happy and ready to take on the day. There is something that happens as he approaches the door however. Generally, there are kids running by us screaming, yelling, laughing, and Curtis gets that "oh shit" look like he doesn't want to or can't deal with it. But he gets in there and takes on the day despite the uncertainty and complications that come with integrating with neurotypicals. I always walk away from the school worried about him, but more inspired than worried, because nothing I have to do during the day is as difficult as what he weathers every time he goes to school.

Greg, Dad

_Finding moments to encourage independence has proven to be very crucial in the creation of a good day for Curtis. This fall Curtis began to regress a bit in his independence. He would voice that he did not feel safe in his environment without me there either while I was taking a lunch break, using the bathroom or running down the hall to get some water. He was disinterested in solo bathroom trips, water breaks and walks in the hall.
This slip in his independence did not worry me too much. I knew that a similar story was playing out at home and I have two years of independent moments I could use to remind him of his progress. Considering he had a new room, a new teacher, new friends around him, a new hallway, a new schedule and a new set of expectations - he was taking on quite a bit and if a little regression in his independence was the result, I was going to be patient with that.
However, by mid fall his lack of independence started to affect his everyday mood. By nature, Curtis likes to do many things solo so this new need for someone to always be right by his side was starting to internally upset him - I could tell. Curtis, like most of us, wants to be independent. He is at his best at school day when he is feeling proud and self-sufficient - with a plan in place, but room for spontaneity.
I felt I needed to push him back toward self directed behavior - the days were getting too clingy and too emotional for this poor kid. I started the process with little steps (having him walk four tiles ahead of me in the hall, taking a short cut to the bathroom and myself taking the longer way, sitting across the circle from him at morning meeting instead of right next to him, etc). For all of these beginner steps I was there with him, but with some distance. Once he adapted well to those steps, I re- introduced (much like I did for him in kindergarten) the idea of taking a peer to the bathroom with him, instead of myself. Always a "safe peer", but that way it was social and it was without me present.
He was hesitant to do this - as I was no longer in the actual picture but he is (currently) slowly warming up to this idea. My lunch breaks are front-loaded every day on a sticky note on his desk (what's expected, when, the times I will be gone, who he can look towards for help etc). He fights my lunch breaks every day but, again, this is even a small step in increasing his desired behavioral goal of independence. In any given day, Curtis has a lot of support from people who would do anything for him, with him and because of him - however I am finding that little injection of solo "adventures" and independent tasks are equally as beneficial for him in getting to a place of producivity (socially or academically). When Curtis feels independent - he glows with pride and happiness. That is a sight that those who work with him are constantly seeking.

Caron, 1:1 School Support

_When Curtis started out in public school, the socials workers " extra clothes closet" made no sense to him. Why on earth would he ever wear someone else clothes? Why would anyone for that matter? This thinking is very typical for autistic individuals; what's theirs is theirs and what is not - well, is not. To wear these clothes would have been a big deal.  He had a back up outfit of his own at school for mud slips or accidents and that was all we really could ask for and needed when he was in kindergarten. This week, Curtis had a major fall during recess time in a mud puddle without back-up clothing.

Slowly over the past two years, Curtis has become more accustom to the idea of wearing someone elses clothes, either because of mud stains, some accident, or it being cold outside and needing to wear an extra layer of clothes during recess. This past week he took a fall in a mud puddle and came running up to me, drenched down to his underwear and socks. He had this look on his face that could have either gone one way or another and I quickly gave him a high five and said, "Well, I can tell you were having fun - its no big deal!" He took that comment and agreed with me; averting two potential "big deal" disasters, the fall itself and wearing clothing that didn't belong to him. I told him his mom would put the jeans in the wash that night, and we just need to get you quickly changed so you can finish you game of tag.

Once he was changed clothes he came flying outside ready to talk to his friends about what just happened and was wondering if they could spot the "difference" in his appearance - turning this mishap into a game helped him connect to a concept that once freaked him out. He ran up to his one of his good girl friends and kept inching his leg closer and closer to her trying to show her his new pants in a very sly manner. The clothing change was a huge deal in his mind, I mean, these were someone else's clothes. He was turning something that used to make no sense to him into social talk and it was a small, but huge success and moment of growth for Curtis.

I think its important to share stories like this because coming from someone that works all day long with a child who has autism it is easy to get frustrated with their "quirks" or constant resistance - I sure do. However, these kids are constantly moving in the right direction and sometimes it takes years to notice such leaps, but sometimes it takes just a few days. They come around - they always do with patience, time, love and some "no big deal" attitude."

Caron, 1:1 School Support

_Field trips are often high on the list of events kids with autism dread about school. In general, field trips are unpredictable, loud, crazy and exhausting. That's not including the distractions that come with a 20 minute bus ride to and from the field trip destination.
In preparation for these field trips, in past years I have had to plan out his days weeks in advance. Tactics such as
-creating a contract with Curtis about the trip
-role playing certain moments of the trip
-finding out who he is going to sit next to on the bus
-who will be his "field trip peer"

These have all proven to be beneficial forms of front loading at different times. This past week, Curtis and his entire second grade class went to see the Nutcracker.

Curtis is growing up and his needs look much different this year than in the past. Socially, he has much more of an urge to connect to his peers. Because of this, I decided not to put too much surface planning into this field trip and try to make it a "no big deal" event, meaning, I have plenty of back up tools in my head ready to grab at but on the surface, and to Curtis, it looks like we are just going with the flow. Like I mentioned to his lead teacher that morning, it was our plan to do as the class was doing. I was available to keep things in check for him and to keep him safe in a very crazy environment. However, the plan on this field trip was for him to have the same agenda as the rest of the class. Naturally, he was apprehensive about this entire trip.
He had created a code language for the event - "TSN" (The Stupid Nutcracker) and was "boo-ing" every little comment anyone made about the filed trip before we even left. Typical Curtis when something out of the ordinary is getting ready to occur. Again, I gave this attitude he had little surface attention and was careful with who he spent time with during certain conversations about the upcoming field trip. I reviewed many social stories with him about class trips and worrying in general - but I showed him with my body language and with my words that this was a "no big deal" situation - hoping he would jump on board. Of course all of his fear was driven out of the unknown and being a little nervous for a day that looked nothing like typical days.
Once we saw the buses pull up, we simply got in line with our class. I front loaded the seating arrangement, carefully placing him among "safe" friends that made him feel confident and sitting behind them. He was glowing with happiness and felt such joy for being able to work through an internal fear. He laughed, ran around some and needed little "adventure breaks" to explore the stairwells. He also asked appropriate questions and he seemed more interested in the Nutcracker than I would have ever expected. At the end of the show, as we were getting back on the bus he says to me, "I think I didn't want to come to the Nutcracker because I was nervous. Was I nervous?" I just gave him a smile and a nod and followed behind him on the bus.


Caron, 1:1 School Support