When Curtis first started coming to my baseball games in 2008 it was pointless to bring him to a field that lacked space for endless dead sprints. As he's getting older, his patience has grown with practice and this weekend he was able to take in two baseball games. Friday night he watched the whole game as his cousin held his own against much larger competition and Sunday morning he watched dad complete with modified foam finger for about seven innings. It's not always easy for him to watch baseball, preferring to stay in motion, but a steady stream of healthy snacks and frequent walks with mom help keep him interested in the game. And for long periods of time he sits there watching the game and asking questions like any other kid. It's worth a post because we really didn't think he'd ever sit still for baseball even a year or two ago. And no doubt that the patience he learns watching baseball can only aid him in getting through other parts of life he might not necessarily want to sit around for and could be bored though. His family's baseball games are a life skill practice of sorts for him.

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

_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

As I've stated previously, Curtis is generally two years ahead of his peers academically but his autism puts him two years behind socially. This results in all kinds of autism spectrum issues throughout a school day.  He will be done his math work before his teacher concludes her directions but then has a hard time respectfully waiting for others to finish their work. This is time he may choose to be disruptive and distracting to the rest of the class. Much of his school time is spent sorting out these issues as they develop and helping him to understand how he is expected to act in school.
This isn't as simple as Curtis knowing how to act, following an autism script and then following suit. He is constantly testing the boundaries between mistakes and intentionally defying the rules. Because Curtis is a results oriented kid, he stays on track in school by working to earn blocks of free time as a reward. These are small blocks of the day where he can choose from activities he enjoys, such as computer games or dancing to music he likes, when tougher parts of the day have been completed successfully. Free time is secure unless he accrues too many tally marks for rascal behavior.   Examples of "rascal behavior" include:
1.) Intentionally throwing food on the floor
2.) Downloading "Angry Birds" onto his teachers Iphone
3.) Speaking very loudly when he knows he is expected to be quiet.
4.) Being mean to a friend on purpose
5.) Inappropriate language and behavior

Often, Curtis thinks he can get away with "rascal behaviors" by explaining them as mistakes. He needs to know that you know he can control these behaviors or he will push the limits. These are the definitions Curtis follows to understand how others can tell the difference between his rascal behavior, which is not okay, and his mistakes, which could happen to anyone.

What your body looks like when you are being a rascal:

      Your face is laughing or smiling and you are running away from your teacher and not following directions. You admit to lying and your body does not look under control.

What your body looks like when you are making a mistake or having an accident:

      Your face is sad and confused looking and you might have tears in your eyes. Your body looks withdrawn and pulled back.

Curtis reads these explanations and knows that you know what he's up too. This has always been very important in positively modifying Curt's behavior. You have to explain to him that you know he can control many of these behaviors before he will attempt to do so and that having autism does not mean behave as he'd like. He knows is expected to follow the same rules as all the other kids and utilize the help available to him whenever he needs it. But that temptation to act like a rascal never seems to be too far below the surface and Curt is constantly testing the boundaries .

Greg, Dad

I saw coupons for a local water park this past weekend and didn’t hesitate to scoop up a couple for Curtis and myself. I didn’t know if he had been to one before, but he had had a solid and adventurous summer thus far so I figured we may as well give it a try. Laura showed him pictures of the park before our trip so he would have an idea what to expect and when it came time to go, he declared himself “ready to party.”

Curtis’ excitement was high, singing “Poker Face” as we pulled into the parking lot. I could tell he was nervous once we exited the vehicle as he repeatedly told me the same joke as we stood in line. “How do you wake up Lady Gaga?...Poker her face.” “Hahaha. That’s funny right, Jamie?”

Once inside, we set up an area with our things just in front of the wave pool. Curtis skipped into the pool and began jumping the waves and laughing. The water in the pool was rather cold so it wasn’t long before we chose to move on to something else. We decided to head over to this large inflated bubble with a pool at the bottom. Children are supposed to use ropes hanging from the top to pull themselves up and then bounce down. I was not allowed to climb up because I am too tall but I was permitted to enter the pool with Curtis. I was nervous waiting in the line because I didn’t know how Curtis would react when we entered. It was tough to tell if he would be able to pull himself up, if he would understand how he was supposed to do this, and if he would come down once at the top. When we got into the pool, Curtis stood in a line by a rope waiting his turn and watching the other children climb to the top. All of the other children would grab the rope and walk up the bubble using the rope to balance. Curtis grabbed the rope and somehow crawled up the 10 foot high bubble with little assistance from the rope. Once he reached the top he turned around, bounced on his bottom, crashed into the water and did it all over again two more times. We each had chattering teeth as we finished with the bubble pool so we decided to warm up for a minute then do some mini golfing. I suspected I would be doing at least 2 rounds of mini golf but after only one Curtis was ready for lunch.

Curtis was quite excited to discuss my lunchbox because I don’t usually eat when I am with him. He is a visual kid and I would guess that as we prepared for lunch he wanted to have a mental picture of what my lunch would look like. He questioned me the whole way back to our stuff about what color my lunchbox was and Curtis wanted to know the entirety of the contents before we got back to our things. He quickly approved of my floral lunchbox and ham and cheese sandwich, surprising as he would probably never eat something like that himself and usually only approves food he understands and accepts. As we ate lunch, I told Curtis he should look around and remember what it was like at the water park in case he was invited to go to another one someday. This way he would have a mental picture of a water park and know what to expect next time. He didn't exactly follow what I was suggesting but he probably has a diagram of the park imprinted on his brain already anyway.

After lunch Curtis was ready to hit the waterslides. He was very concerned as we approached the slide area because he was not tall enough for all of them. We came to a slide he was able to go on and we grabbed a couple tubes and approached the line. Again my anxiety began to build as I knew I would not be going down with him and it was pretty clear he had never done a water slide before. Curtis and I watched a few people go before us and listened to the direction of the staff member to make sure the handles on the tube were in the front. At this point I decided it was best if we branched off into two lines so I could go down the slide immediately after him rather than have a stranger in between us. I stood 4 feet away as Curtis adjusted his tube and effortlessly plopped himself down the slide. Twenty seconds later I was on my way down hoping to find him happy at the bottom. As I splashed into the pool at the bottom I saw Curtis still on top of his float with a huge grin on his face.

The next set of slides required a mat rather than a tube. I told Curtis to hold his mat sideways a few different times as he dragged it on the ground and nearly tripped over it several times. Finally I stopped, held up my mat and showed him what to do to handle the mat appropriately. At the top of the slide I had to explain to Curtis how to “scoot his butt” to get himself going. I explained it was just like sledding in the winter and pushed the mat as much as I could to help him start. Curtis, like many other children with autism, is a visual learner. After watching a few other children get themselves started on the slides, he was better able to understand what he needed to do.

As we approached the top of the line, Curtis looked at me and asked if he was holding his mat in the right direction, which he was. At the top of the slide he put down his mat and sat down. This time, the girl running the slide asked him to “sit back on the mat.” A look of panic came over his face and he looked to me for guidance as the woman repeated he needed to sit back. I sat back o my mat and told him “Sit like this.” He sat back and off he went. We ended up staying at the water park for about 4 hours that day. Four hours that Curtis was just like every other kid there. With the exception of his need for visual input to understand what he needed to do in some situations, Curtis’ autism was undetectable. I’m quite certain Curtis enjoyed himself because he said to me several times, “I’m having a good time with you here, Jamie. Can we stay till they close at 6 pm?” Another great summer adventure for Curtis whose confidence continues to soar with each new and successful experience.


Jamie, 1:1 Home Support

      We returned from our first real family vacation this past weekend after 6 days away from home. We had a cabin in Vermont at a great family campground with a start to the trip that was delayed by an emergency surgical procedure for Laura. A late start meant a disruption to the vacation plans Curtis had already agreed too, slightly raising his anxiety level about the trip already containing mostly unknowns. The vacation was a huge success and Curtis now has an answer to the question he posed to his mom a few months ago, "Mom, what's a vacation?".
      In most ways, Curtis' autism did not manifest itself to the point where we made a point about discussing it with other people. We left interpretation of his obvious uniqueness open to many parents and discussed it rather thoroughly with others.  As far as friends, he mostly stuck with younger children and girls close to his age. Some of the boys his age kept asking how old he was and were largely stuck on the developmental differences of Curtis and the other 7 year old boys. This is often the case with boys his age however. Indeed, none of the 7 and a half year old boys carried a Smurfette doll around and gave it a voice narrating van rides to the lake. Curtis couldn't care less that there were boys who didn't think it was cool.
      Our first night at the camp we realized that before dinner, families staying at the camp meet on the dining hall steps where they are told of entertainment lined up for the evening and other events pertaining to the camp. Curtis wanted no part of this ritual and went out to the rock pictured above and ignored the meeting. Not completely ignoring it of course. He found the need to let out loud, nervous laughter to the group while the director spoke. This drew the glare of several "high brow" parents but we figured it was worth Curtis working through this process and not forcing him to sit with the group and make a scene. He never really integrated into this meeting over the course of the week but he did manage to keep quiet at a nearby table during the nightly address.
       Activiti es at the camp went according to a sign-up sheet and the second morning at the camp, I signed up me and Curtis to play wiffle ball. It was difficult to get him there but when it turned out the time for wiffle ball was later in the day and he was instead expected to change directions and get basic tennis instruction, it did prompt an immediate meltdown. He did not take this sudden change in schedule in stride and made it impossible for the instruction to continue for the other kids. I ended up removing him from the scene in favor of some wind down time with just his family. These are really the only two instances that jump out at me as particularly difficult to handle while on vacation, though Laura may have other stories from activities they did together.
       The weather cooperated, the lake was open all afternoon and it was in the water where Curtis was his happiest. He conducted several concerts out on the docks with parents, kids, and staffers looking on and one staffer told us that getting to know Curt was the highlight of his week. In addition to his uninhibited dance and song routines, Curtis had many people laughing with his deadpan literal interpretations of a magic show and other activities and events that confused him. By weeks conclusion, he became a very popular camper, constantly being queried for conversation by kids and adults and rattling off the names of his new friends every night before bed.

Greg, Dad

When Curtis was in preschool and receiving early intervention services, he hardly noticed his classmates. He had his favorite teachers who were more likely to elicit responses from him than others but when he was four and five he was feeling his way though the fact that he was expected to interact with non family members. However, he has had a close relationship with his cousin Jayden (pictured) since birth despite the very difficult time they have understanding each others actions.

Jayden is 8 months older than Curtis and has the street smarts of a kid much older. He has often been frustrated with Curt when he doesn't play like other kids and does "odd" things for entertainment. I spend a lot of time observing the relationship between the two in addition to acting as referee. Without knowing it, Jayden has given Curtis a consistent and often sobering education on how other kids play together. These two have sometimes exhausted me as a pair but Jayden's sense of adventure won Curtis over early on and Jayden is thoroughly entertained by Curt's sometimes bizarre antics. Lately, they are sharing favorite video game websites and showing each other new music on youtube. Each of those activities of course requiring extensive parental supervision or things get off track quickly.

Having just finished first grade Curtis has made tremendous strides in socialization. A lot of the credit goes to his one to one support person. She has taken the time in the past two years to foster communication with peers and stepping back when her interference is unwarranted. Believe me when I tell you it is important to find the right support person for your son.  Someone who is interested in knowing your child and doing the work to help him succeed. Curtis got to spend the last two years with the same class and developed real friendships with all types of kids. He has no concept of cliques and makes no judgments about anyone. He is attracted to the kids with big hearts and they are inevitably attracted to him.

Today when we are out an about and a kid approaches Curtis on the playground to play she often has no idea Curtis is autistic. He will suggest a game of tag or hopscotch and try to follow the rules if a kid brings up a game with which he is not familiar. He is still likely to look off to the side when he speaks and ignore hellos on occasion but we are a lot further along than we expected a year or two ago and he is making more social strides all the time. He is much more socially confident now and secure that he has some good friends who care about him

Greg, Dad

I went to the beach and played with some kids, it may not seem like a big deal...but it is!

Curtis and I spent at least 3 days a week at the beach last year (2010), and during that time he only wanted to play with one person:  Me.  I would constantly encourage him to play with other kids in the water, or play catch with a beach ball, or share his sandcastle toys when others approached, but he was so anxious and socially incapable, he would rather go home than be forced to play with a peer.  When a kid would accidentally knock over his sand castle or splash him with water, he took it very personally and needed a lot of encouragement and redirection to recover.  Although I love that he loves to play with me, it always concerned me that he had no interest at all in playing with other children in such a kid-packed setting.

We have referenced many times on this site how much Curtis grew socially in first grade.  Today, we went to the beach for the first time this summer, and he saw 2 of his schoolmates there.  He instantly ran up to them and said "hi" and when he began his sandcastle city, I prompted him once to invite the boys to join him and he went right for it!  Quite appropriately, he asked them if they'd like to join him.  One said no, the other said yes, and they began building castles and collecting shells to decorate them with.  They went for a swim and played ball together, and not once did I have to intervene in a social exchange.  For one hour of his life, Curtis independently performed social interactions that he was completely incapable of this time last year.  I got to sit back and watch him genuinely enjoying his time with his peers.  After they left he was so proud he could burst and he said, "I like playing with you Mom, but I sure like playing with my friends, too!"  And with that, he took my hand and led me to the water to go for a swim together.

Laura, Mom