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

Curtis turned eight just last month but you wouldn't know it by some of his recent accomplishments. He has started writing in cursive and works at it on a daily basis, mastering the tricky r's and z's and writing full sentences in cursive. He took an interest in multiplication recently and has since memorized his multiplication tables through the number 12. The swimming lessons he has reluctantly taken on Monday evenings for the past few years have paid off. This week he started swimming from one end of the pool to the other with more confidence and determination than ever . He didn't do it once or twice, but 14 times. Not saying all this to brag, well maybe a little, but more out of pride with what the little guy is able to accomplish. He is starting to understand that many of his limitations aren't so limiting after all. With a little help from his friends and his own increasing desire to succeed, learn, and challenge himself, his confidence in his own ability is rising every day.


Greg, Dad

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

Oh the Weather Outside

  “Everybody try to help me get Alex wear his winter coat!”    

On this last Saturday before Christmas Eve, the temp has dropped about 15 degrees from mid-week. There’s a brisk northeast wind, and all day the mercury never topped 40. The clouds look like flurries, and as darkness settles Alex prepares to head out for a few hours with his res-hab worker Marla.   

“Alex, when you go out tonight you have to wear your new winter coat.”    
“Winter coat,” he says.    

“Your new winter coat. Okay?”   

“Okay?” I can tell that he means the word as the question.    

I try the trick of putting his hand to the open window to feel the cold. “See, Alex? Just slip it on.” It’s a trim down parka from Lands’ End. There are little holes for thumb and fingers to make sure the sleeves stay down in those white powder downhill sledding runs that Alex – who, ironically, hates cold – will never choose to take. Jill got one cost in blue and one in grey.    

We’re trying the blue one on Alex. “Just slip it on, Alex. Look in the mirror and see how you look!” He even zips it up, looks in the mirror and giggles and giggles, then slides out of it again and reaches for his autumn hoody. I think of all the street people through the years wander in down greatcoats in late April.    

Alex will shift coats eventually. He’s worn T’s in summers, hoodies in fall and spring, and puffy down coats in winter (looking like a brown grenade). But Alex is a slippery customer when it comes to outerwear in those first days of change.   

“I’m been having trouble getting him to wear his winter coat,” I tell Jill. “Where is he?” she says. “Alex, let’s go!” She wrangles him into the coat and then in front of the mirror.    

“Stylin’!” she says. I’ve never heard her say that before. “Good job, Alex!” she says. “Zip it up!”    

“I’m been having trouble getting him to wear his winter coat,” I tell Marla.   

“It’s cold out, Alex,” Marla says. “It’s windy and cold out. Why are you giving daddy a hard time with this?” Alex starts coughing. He sometimes coughs when asked to do something he doesn’t want to do. “You get outside you’ll be glad you have it on,” Marla says. I tell Alex to go into his bedroom and get the red backpack he wears on outings with Marla. She blocks him.   

“I’m not sending him in that room again,” she says to me, “or he’ll change that coat.”    

I find him with the coat on and his familiar orange hoodie on underneath. His version of compromise. Alex waddles toward our front door, looking left and right. This isn’t right, he seems to say. This definitely isn’t right.


Jeff Stimpson
jeffslife.tripod.com/alextheboy
Twitter: @Jeffslife
Books: Alex: The Fathering of a Preemie and Alex the Boy: Episodes From A Family's Life With Autism

Curtis' transition to public school was not exactly easy.  There was a lot of resistance to his entering a regular ed classroom with 1:1 support.  First of all, post-early intervention high functioning autism appeared to be uncharted territory in his school, so they were a little hesitant about putting a kid like him in a room full of typical students. 
Secondly, its expensive for a school to hire a support person, and even though a fair wage for Caron would hover somewhere around 500k a year, her much more modest income was still a hefty price tag for a district with a tight budget.  Throughout it all, I fought the best fight I could to make sure Curtis was among his neurotypical peers as much as possible. It wasn't until I stood outside waiting for him to bolt at full speed from the building each day that I realized I was surrounded by parents of neurotypical children who had not even a hint of understanding as to what my life was like.

Just days before, I got to spend 10 minutes in the morning and 10 minutes in the afternoon dropping off and picking up my autistic son alongside parents who were picking up their autistic sons and daughters.  We didn't have to speak, although we often did, but there was a comfort in being around others who "got it" during those brief exchanges.  In the "real world," our kids were all different, but within the walls of an Early Intervention Preschool, they were all "normal."  Nobody was judging the 4 year old with a pacifier in his mouth or the 5 year old throwing a full blown tantrum, and when Curtis would predictably bolt toward the back door, there were lots of people along the way who would help me stop him and not even think twice.  I was safe and understood and it felt really, really good. 

Next thing I knew, all I had fought for had come to fruition and I stood among perplexed faces as my kid ran full speed right past me and toward the street every single day.  I could feel them staring and judging day in and day out and their reactions ranged anywhere from pity to hatred.  I longed to go back to the days where people silently understood and no one ever glared at my son's atypical behavior.  Three years later, we have made tremendous progress and Curtis presents himself just like every other 2nd grader (most of the time) as he leaves school.  This doesn't mean he IS like them (I think he's better,) but the stares have subsided and he has made some genuine friends whose parents I chat with just like everyone else.  It's not quite as lonely, but I still miss the days when I got a daily dose of support from those who travel the same path as us.

Laura, Mom

Sensory issues and stimulation overloads are all too common for children on the spectrum and Curtis had a doozy of a time today. His class was planning a field trip to the Planetarium and he reluctantly agreed to attend. Sometimes, it's the trip on a loud bus that is the biggest challenge of a field trip. Other times it's the timing of the trip that hinders his enjoyment. This time it was the event itself, a show at the Planetarium, that had Curt looking for an escape.

According to Caron, his school support

"the room was dark, really loud, hot with 3D asteroids, comets, planets, and stars coming out in all directions. Curtis was able to verbalize to me that it was too loud so i covered his ears for the entire show. About 15 minutes in he asked if he could sit on my lap - i pulled him up, still covering his ears during the loud voices that every now and than would offer some information or facts about what we were seeing and held him. He seemed like he was enjoying some of it and was asking a million questions about the solar system - the majority of them were unanswerable by anyone (Will Earth live longer than Mars? Was Earth every bigger than it is now? How long ago did people live on Mars? What is beyond Pluto?) Etc.. About 45 minutes in he told me that he didn't feel good - that was also the point where they stated to be a laser show - We quickly scooted out. We took a walk around the building, in the building and kept our voices and energy pretty calm. He seemed fine after we got out - he was turning it into a social thing actually later on while everyone was waiting for the bus - going up to kids and asking them if they felt sick. most said yes and he would respond with how he felt. I think the environment, the bus ride and the overwhelming nature of what we saw and where his mind went during all of that was hard for him to handle and leading to a (what sounds) huge sensory overload."

Then mom had him after school

"We're definitely seeing some after-effects of the sensory overload.  He just spent an hour flailing and crying because it hurt to put shoes on his feet and he was curled up in a fetal position in the back seat on the way home from school.  i've seen him like this before after he got pushed to far in OT sessions, and you can't always tell right away what the over-stimuation will do to him.  thanks for getting him out of there as quickly as you did.  i didn't really think much of it, assuming it would not be a 3D experience.  he'll be fine in a couple hours, but its interesting to see how fragile his sensory system can be.

And Jamie who had him for some 1:1 Home Support

"I definitely think the planetarium was a system shock for him.  I can totally understand how that would mess him up.  He was quite upset about his shoes and obviously was having some weird sensory issues with it.  He tried on every pair and exclaimed that each one felt "weird" and would cry uncontrollably and kick them off.  He asked for hugs and squeezes over and over, wanted to be rolled up like a burrito and covered his eyes with his coat/a blanket a few times.  He repeated over and over that he wanted to go to starbucks but just couldn't stand his shoes.  He couldn't describe what the problem with them was though.  Laura let him try slippers and he thought those felt okay and I had no problem taking him out in those.  The second we left the house he announced "I'm so glad we are finally outside. I don't feel dizzy anymore."  He pulled a little rascal behavior in the car but I told him I'd turn the car around if he didn't cut it out.  We got to Starbucks and obviously they didn't have any multigrain bagels.  I told him his other options and he decided to try a mini donut, loved it, we got one more for the road.  We walked about the door and exclaimed "We just had the best moments of our lives!"  We got home and he ran right upstairs to show Laura the donut and was totally fine for the rest of the evening.  I definitely feel like the pressure from squeezing and covering of his face to eliminate sensory input was helpful as always, but the dizzy thing and the "I'm so glad we are outside now" was new.  I was absolutely shocked that he was willing to change his order at starbucks cause he will usually request to go someplace else if they don't have what he wants.

Live and learn I suppose. Maybe the Planetarium isn't the place for Curtis and now we know. We'll make arrangements for him to skip that one next time and save his feet and mind some aggravation. More importantly I hope it doesn't hinder his desire for field trips in general, an area where significant progress has been made in the last year or so.

Greg, Dad

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