Autism can make a simple 5 minute walk to school difficult. One of my favorite times of the day is walking Curtis to school. For him, it's just the start of a series of unpredictable events that serve no other purpose than to make life difficult. I sympathize with him, yet I also laugh, because he is funny in a constant dry wit/inquisitive sort of way, whether he wants to be or not. As we're leaving the house today:


Curtis: Dad, what is kidnapped?
Dad: Like, when you talk a stranger and they put you in their car and drive away and we don't know where you are.
Curtis: Oh. Can you get teenager-napped?

One day last week we were walking to school on a windy, rainy day and came up to his street cross for school. The crossing guard said " Really nice weather we're having" to which I said, "Yeah, it's beautiful". This is a part of autism that is funny to me and frustrating to Curtis. He just said, "It's not beautiful", and dismissed our comment. I attempted to explain sarcasm for the 100th time. Then he spotted the sign above and burst into the school to start asking people if they were going to the Fall Festival and asking if he had to go. The conversation with the crossing guard reminded me of this link Laura sent me. I don't watch The Big Bang Theory to know if this character has an Autism or Asperberers diagnosis but this seems close to how I would expect Curtis to react someday.

Greg, Dad

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

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

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

Caron, 1:1 School Support

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

Curt's cousin Jayden is A street smart kid with a high BS detector who enjoys experimenting with his cousin's autism and behavior. Jayden understands Curtis has a legitimate condition but he often can't resist the temptations that come along with Curt's adoration. Namely, how easy Curtis is to manipulate. Jayden knows he can suggest just about anything to Curtis and there's a good chance it's a go. A little whisper in the ear is sometimes all it takes and Jayden has an instrument to shake up any situation. The pair must be supervised continuously or bad things can happen in seconds. For instance, Curtis is willing to urinate anywhere outdoors, will launch a nearby coffee mug down the street, spray a hose into an open car or house window, sign up for anything on the internet, etc. all in the name of impressing his cousin. These things happen in seconds and this is only a partial list. Curtis doesn't fear or interpret the consequences in many situations like a typically developing kid does. He is living in the moment. Jayden knows he can get Curt to do things he would like to do but doesn't dare. Strict supervision is the only answer here.
Jayden also teaches Curtis a lot and weekly meet-ups give Curtis exposure to someone his age willing to tell it like it is. Curtis has a social anchor and it alleviates fears associated with Curtis potentially becoming reclusive or defiant as others with autism have. Curt takes a lot away from Jayden's experiences and pounds him relentlessly with questions that Jayden is willing to answer. It's not a perfect relationship but there is time for development. 
Curtis is gullible to be sure. How can he not be? He relies on certain people to explain to him what is going on around him, He has to take our work for it. If something sounds preposterous he will say, "Are you making a joke?", but most of the time he believes you. Here are 5 ways we've used Curtis' autism to our and his advantage as parents.


1.) Curtis will not drink soda- Curt associates any type of soda with something that will leave him teeth-less in no time. We got this idea into his head very early on and he can see dads cavities as proof. He will not touch soda and is uncompromising on this one. I hope it sticks long-term.
2.) Curt believes anything over a small amount of candy will make him sick- Yesterday he discovered a pile of Halloween candy at his grandparents house. He looked it over, shook his head and said "Look, I'm not looking to get sick." He only had one piece. What's the harm in him believing this one as long as possible?
3.) Curtis is a great weight loss coach- If you ask him to stay on top of you and not let you eat certain things, or you want someone to make you go o the gym at the same time everyday, Curtis is your man. He will commit to the cause and stay on to of you.
4.) Curtis still believes in Santa and the Tooth Fairy, etc. Again, why not extend this as log as possible. Hopefully no trust issues result from this one but eventually logic is going to take over I assume.
5.) Curtis has built a small fortune in change that we could use if the S ever really hit the fan- Just kidding, but I have learned from his ability to save, autism or not. Like, if a 6 year old is saving money, I shouldn't have that hard of a time cutting back impulsive purchases.


Greg, Dad

Second grade is going pretty well so far for Curtis and familiarity with the school has helped negate some of the setbacks his autism first caused in school. He has more confidence walking the halls, recognizes more faces, and is less intimidated overall than last year. He has more swagger in his step. Last week Curtis had a reunion with his first grade class and it was a highlight of the young school year. He informed me that only four students were missing from last year, including his BFF, and where they are now. The get together appears to have made him nostalgic. Here are some points he made after the reunion about second grade and older days.

"The things that are different about second grade is
A.) I have a different teacher
B.) I have new converse sneakers
C.) I have different specials on different days
D.) I have lots of new friends

 When I was two I was stung by a bee. When I was 5 I didn't want to go in Chuck E Cheese. Then I tried it again and it was a great moment. Mrs. Bxxx and Mrs. Kxxx have each yelled at me at my school. I met my first teacher and Ms. Barber at the back to school BBQ on August 24 2009. Now I know so many people at school and it seems like I'm famous because everyone says Hi Curtis. When I'm older I'll be an artist and marry XXXX.  Then I guess I retire and hang out all the time. That's the story of myself".

Curtis
Greg, Dad

On our walk to school in the morning, as I've mentioned before, I try to get Curtis is a good frame of mind to take on the day by limiting autistic triggers. We talk about something he finds interesting, funny, or we discuss something upcoming that he's looking forward too. My goal is to get him to walk through the door smiling so that I can go to work knowing I left him in the best possible condition before he takes on the K-5 storm. When I dropped him off on Tuesday, I knew Caron was in for some intense questioning.  Curtis had noticed this sign on the way into school and there was an instant change in his demeanor. What followed went something like this:

"I don't have to celebrate bus driver appreciated do I?
"Do I have to go on a bus?"

"Do I have to go on a field trip on the 21st?"
"I'm not celebrating bus drivers, okay?"
"Do I have to get on a bus where kids are screaming?"
" We aren't having a party for bus drivers are we?"

Curtis isn't terrified of school buses in general but he'd rather not be on one if possible. The real problem here was a celebratory day that he was not aware of and didn't understand and he accepts that is autism causes him to feel different about these days than other kids. He also didn't like that I hadn't heard of the day before. Or that I was laughing at all his questions in addition to trying to help him understand that the day didn't necessitate him doing anything out of the ordinary. To him, this was a very serious discussion that required a lot of explaining. He eventually settled into his morning when his questions were answered but he still isn't looking forward to it. Typically, he has to experience a day like this to fully believe nothing out of the ordinary will happen. But this is just another reason he is an inspiring kid. Something like bus driver appreciation day can send him toward dread but he works though it, asks his questions, braces for it, and moves on to the next challenge. However,  any bus drivers looking for a pat on the back from Curtis on the 21st are likely to be S.O.L.


Greg, Dad

I found another cool article on autism, a success story, in the New York Times recently. There is an 11 minute video and a long article on an autistic adult whose simple goals include independent living, preferably in an apartment close to his parents, and earning his own money. He is an artist and aspiring cookie maker who is mid-level functioning on the autism scale. His parents say his artwork goes for $1,200 and up. I'd probably put down the cookies and just keep painting pictures in that case but Justin's goal of improving his social interactions is admirable. It's a key goal for most on the autism spectrum.
It's sobering to see in the piece that only about 10% of adults with autism are employed. I guess I knew it was somewhere around there. We aren't blind to the fact that many of Curtis' cute hang-ups would prove serious detriments in a work place. Then again he's only turning eight. There is a lot of time for development as long as there are people willing to put in the time and programs that support adult transitions and our plan is to stay on top of things. 
I think Curtis will have many of the same goals as Justin and I hope that he does. He's already mentioned independent living, marriage, etc. When Justin's mom leaves and he repeats "I'm brave of being alone", that's something I could see Curtis doing. Justin belts out pop tunes like Curtis and he seems fun to be around, much like Curtis. The dry observations are always funny.
My high hopes for Curtis are self-employment as an artist or expert on a subject he will develop an unhealthy obsession over. Reasons being I believe he can do it and because who wouldn't like a job like that, autism or no autism? Lucrative self employment with your own schedule and no bosses? Maybe I will be living vicariously through him some day. Those are the high hopes so far  living with autism.

Greg, Dad

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

Greg, Dad