It's easy to say that Curtis is inspiring and leave it at that but there are any number of specific examples which articulate the point. Yesterday, Curtis and I were walking down my parents driveway and started walking towards the "rivers" his cousing Jayden was creating with the hose. Curtis stopped in his tracks and asked me if we had any chalk. He then searched the box for a white piece of chalk, returned to the rivers, and started drawing white dashes in them to create a series of highways. He insisted on putting in at least 15 minutes on this project before we could attempt some wiffle ball.

Last week on the way to play basketball, Curtis insisted on holding the two cups of uncapped water we were bringing to the hoop "to stay hydrated", in Curtis' words. When we reached the street, he stepped on a horizontal soda can so he could loge it in his sneaker and create that crunching noise as he walked. So now he's holding two cups of water which he's trying not to spill and crunching this can underfoot and his mission is to see if he can make it to the hoop with all three items. I asked him why it was necessary to turn a 5 minute walk into a 20 minute walk but all he repeatedly said was "There's no rush, dad. Are you going to wait for me?" Naturally I did and he was proud of himself 20 minutes later when he accomplished his mission. I bit my lip and took the walk on the chin.

A couple weeks ago, Curtis was at a cupcake shop, heard Michael Jackson and immediately started dancing. The girl working then played more Michael Jackson and so he just kept dancing through 4 or 5 of his MJ favorites. The store clerk asked with permission to mention Curtis' visit on their facebook page.


East End Cupcakes Our Vanilla w/ Vanilla had seven-year-old Curtis dancing to Micheal Jackson for 20 minutes. It's been a great morning.


Curtis will seize any opportunity he is presented with and does not care what anyone thinks of him dancing in a cupcake store, or carrying a Smurfette doll around the Farmer's Market (as he did yesterday). He certainly didn't care what anyone thought of his attempts to dart behind every cash register or his attempts to get into employee only areas at every business he visited between ages 4-6. His curiosities often present challenges for his parents and caregivers to say the least, but he always finds a way to teach you a lesson in the work. Like Miyagi making Daniel paint the fence or wax his cars.

Greg, Dad

It's fair to say Napoleon Dynamite has been the most influential movie in Curtis' life. He was delayed in speech and caught a piece of Napoleon Dynamite one day on Comedy Central and was mesmerized. We told him we own the movie and he watched it repeatedly for weeks. Not every day but when he was in the mood for a movie, he wanted Napoleon. His speech blossomed over this time period and he incorporated a lot of Napoleon Dynamite into his dialogue. "Flippin sweet, gosh, heck yes i did," they are all still there. He can do scenes from the movie verbatim. He has also loved to dance ever since his Napoleon Dynamite phase.

Pictured is one of Curtis' patented dance moves. Shortly into any Curtis dance routine, he turns around and starts bouncing his butt up and down. He may or may not spank his butt while he dances and Lord knows where he learned this. It's pretty hard not to laugh. It's hilarious mostly because he tends to be serious while he does this and his break dancing. Curtis likes his Justin Bieber, Taylor Swift, Britney Spears and other chart toppers. He certainly did his fair share contributing towards the 170 million views of Rebecca Black's "Friday". However, I get his ear whenever he is in my car and have bounced many albums and songs off him since the time he was born. He has a solid knowledge base of indie rock, alt. rock, some clean rap and some good oldies and tends to like the stuff that is more pop with a catchy chorus. Curtis began making his own mix cd's when he was six. He sat at the computer and watched me do it one day and just began making his own from there forward. Curtis has always been a sponge for music since the days of Baby Einstein and is nearing his own drum set after showing minimal interest in a guitar. When he likes a song Curt smiles and asks you to play it again.....and again, and again, and again. Here are just a few of his favorite songs over the years, any of which sends him into a butt bouncing dance frenzy.

The Strokes- Under Cover of Darkness
The Fratelli's: Henrietta
Dr. Dog- The Old Days
Belle and Sebastian- Your Cover's Blown
Vampire Weekend- M79
LCD Soundsystem- Dance Yourself Clean
Cee-lo- Gettin Grown
Muscles- Ice Cream
Peter Bjorn & John- Young Folks
Michael Jackson- Billie Jean
Franz Ferdinand- Lucid Dreams
Weezer- If You're Wondering (If I want you to)
Dave Dee Dozy Beaky Mick and Tich- Hold Tight
Arctic Monkey's- Brainstorm
Sufjan Stevens- The Henney Buggy Band
Spoon- You Got Your Cherry Bomb
The Big Pink- Dominos

Greg, Dad

Curtis has discovered a new favorite song, "Born This Way" by Lady Gaga.  I have never been a fan, but one of the great things about Curtis' frequent interactions with other adults is that he is exposed to a variety of things that Greg and I may not expose him to.  So when Jamie let him hear this very appropriate song in her car, he started singing it everywhere, and he hasn't stopped yet.

The more I listen, the more I realize that this song has a lot to do with Curtis.  I often have people ask me what I think about vaccines and autism, and I always tell them Curtis was "born this way."  He was a very fussy baby, requiring constant motion and constant feeding.  He never went more than 2 hours without a feeding, and this included overnight.  Greg and I spent countless hours walking up and down the hallway with him in our arms to keep him from crying and I would watch TV on an exercise ball to keep him bouncing.  It was exhausting to say the least.  We didn't even feel comfortable leaving him with family for a couple hours when he was a newborn because he was so high maintenance and he would cry the whole time.  In hindsight, all of those hours of crying were related to a dis-regulated sensory system, something that is part of his autism and adhd.  So now when people ask if he got autism from vaccines, I can say with confidence that was not the case.

Aside from literally being "born this way" Curtis also embodies the chorus of the song:

"I'm beautiful in my way
'Cause God makes no mistakes
I'm on the right track baby
I was born this way."

He's literally beautiful on the outside, but what comes from inside of him is pure and brilliant and something I wish we all possessed.  And, although Greg and I are not church goers, we have always believed that God gave us Curtis for a reason.  He was created as this person and given to us as parents with a specific purpose in mind.  Now that we're through the really hard parts of autism (and trust me, I never thought we'd get through it), I don't think I'd want a "cure" even if there was one.  Autism is part of who Curtis is.  It makes him...well...Curtis, which means he is on the right track.  We are not trying to make Curtis "normal" because he IS normal.  He just needs to know how to be himself in a world that doesn't always know how to react to him.  He is so lucky to be surrounded by people who don't want to change him, but rather want to prepare him for what lies ahead.  That approach makes for a happy, successful kid!

Laura, Mom

When I take Curtis out to do chalk I generally pick a place that's non-crowded but where his work will eventually be seen. The back of a school, an open area inside a park early in the morning, but anywhere that doesn't involve moving traffic or a gazebo will work. Today Curtis did these roads at the entrance to a public playground presenting more foot traffic than he's used to while he works. I rigged the setting so I could watch a baseball game on an adjacent field. I've watched the scene unfold many times where people politely pass by as he starts, but end up fixated after he's been given some time to start fleshing out his drawing.
      When Curtis "does roads" he generally shuts out the outside world. The main reason it's easier to pick a non-crowded place is because Curtis typically won't respond to inquiries about what he's drawing while it's in progress. My favorite reaction today was a girl about 10 years old who just stood there with her mouth open for a minute as me and Curtis exchanged smiles. She never said anything. It's difficult at first for people to interpret what they are viewing at first, especially other kids.
      The first thing most adults do when they see the roads is ask me or Curtis if he had help. Then they look at it when we say no and it's fairly obvious only one person worked on it. Sometimes Curtis will explain it's the Maine Turnpike. Other times it's 1-95, to 495, to I-90, to I-84. Some kids tug at their parents to look at what Curt's doing and they either look or don't, but the kids almost always stare in amazement or curiosity. Another common reaction is "Oh, so  YOU'RE the one who does these!" Many others take in the drawing smiling for a while and just wish Curtis a good day. Once Curtis starts getting compliments on his art, he expects them from everyone. Should someone look at his work and not comment, he typically looks at me and says, "Well, I guess no compliments that time". He has to be reminded that he does not need a 100% public approval rate.
      Curtis is not especially aware of the passing time while he works, which is really the most impressive piece of it to me. These are "projects" that if you assigned them to a typically developing child, I imagine they would likely abandon the work in a matter of minutes. With Curtis, there is usually not enough chalk or time to complete the picture in his head. I am careful not to let it go on for too long, but I see nothing wrong with the temporary relaxing escape this sidewalk chalk affords to him. He breaks only to go to the bathroom or request water or Capri Sun. Then he always emerges refreshed, relaxed, and ready to eat, run, or move on to something else. It's therapeutic for him and visually impressive for the rest of us. He also gets asked a lot if he will be an engineer or architect to which he always replies, "No, I'm an artist."

**more pics from today on his autism artwork page

Greg, Dad

During first grade, Curtis would come running toward the school full force in anticipation of hugging his "girlfriends"  who would always be waiting for him. The remaining members of his class tended to get the shaft in terms of morning chatter from Curtis. His classmates would be comfortably buzzing around the cubby area showing off games from home, sharing playground stories or glowing with love over their new shoes. Curtis could be found sticking to his daily targets and completing his morning jobs as every student had to do (Making his lunch choice, answering the classroom question of the day and putting his folder in the classroom basket). Doing the jobs necessary to get his day started off right.
       Early in the school year I learned that I had to be sneaky and creative in my attempts to get Curtis to socialize. Essentially, I had to put it these jobs out there as"targets" or "jobs" in order for him to comply.  That's when the surveys Greg mentioned were implemented at school.  While they were very format based, they were unique each day depending on areas of his current interest (Do you like fluff? Do you like Taylor Switt? Have you ever been on Interstate 240? Do you like basketball? Do you like the color Red?) - and others were based on his emotional state and/or daily reflections (Do you have bad days? Do you cry sometimes? Is the classroom ever too loud for you? Do you like to be a rascal?) 
      Without Curtis even realizing it, he was bonding with his classmates. He was learning more about his new friends each day and expanding his age appropriate ego centric mind frame little by little.  By October, completing his three morning jobs, he would find a survey on his desk with a clip board and a sharp pencil. He would then hit the class running daily with straight forward questioners and it was a beautiful sight to see him re-enter the cubby area and be among the class chatter. His classmates loved these surveys. They enjoyed the randomness of the questions he would ask and they loved his individual attention without me hovering.
      Soon his class was asking me for these daily surveys so that they could do as Curtis was doing.  I noticed throughout his first grade year that what started out as a "job" and a premeditated social interaction turned into Curtis having the ability in himself to ask his friends simple social questions freely and without his handy clip board and pencil in front of him. He was interacting without the previous barriers and without the rules that were once so crucial. Curtis blossomed this year socially - trail and error, patience, acceptance and love helped him shed his armor. I am a huge advocate for social learning. I have always believed that Curtis will learn more from his peers than from what I have to teach. I may set the stage for these interactions to occur during his school day but than his friends take over quickly and willingly.  His friends also have more patience than myself on some of the tough days :)

Caron, 1:1 School Support

Curtis spent much of his first two years in school learning the other kids and their reactions to things. The school work has largely been easy. He was reading when others were learning the alphabet and adding coins when other kids were leaning 1-10. He has the states and state capitals down pretty cold. Many times he has helped friends with their reading and math and is largely eager to help those he trusts. An area where he needed a lot of help however was reacting appropriately to different news and events in the lives of his friends. As an example, he once burst out laughing while a classmate expressed dismay to the class about putting the family dog to sleep. In this instance, I suspect it was more likely his reaction to an unsettling situation he was uncomfortable with rather than not knowing how to appropriately react to the news. Curtis learned a lot about reading expressions through the use of PECS (which Laura will blog about soon) as well as by conducting surveys. He was already a big fan of "Sid the Science Kid" and very receptive to the use of surveys. Very good show for kids on the spectrum. The show is educational but also follows a very tight format where certain things happen at the same point in every episode and the same songs are sung. Curtis found this predictability very comforting.

Curtis writes surveys with simple questions and Yes or No responses answers in order to determine if a majority of people in his class feel the same way he does. For example, do they love ice cream and the Cat in the Hat as he does and they hate rainy days like him. It was re-assuring for Curt to know his friends had similar feelings to him and was an important bridge to building relationships.  Curtis also writes out surveys for family incorporating questions he has learned to ask, like how was your day, as well as squeezing in requests, like going for ice cream. Here is an example of a survey Curtis wrote in Word and printed for me a couple of months ago.

Dear Dad
I am having a good day!
How are you doing?

Are you having a good day?

Yes      No

Do you like weekends?

Yes      No

Do you like me?

Yes      No

Do you like hanging out with me?

Yes      No

Do you love me?

Yes      No

Do you play with me?

Yes      No

Do you like rides?

Yes      No

Do you like rules?

Yes      No


Greg, Dad
Curtis

I have been a baseball fan and player since about the age of eight. Even now at 33 I still play in a wooden bat baseball league for players 25 and older. Naturally, I had an expectation that any son of mine would play little league, school baseball, summer leagues, as well as plenty of baseball with his friends. Suffice it to say, sports is just one of any number of areas where Curtis is happy to take my expectations and flip them on their head. Curtis playing defense on a baseball field, which often involves standing in one small zone for a lengthy period of time, seems pretty unlikely to happen, though I've learned never to say impossible when it comes to Curtis.

The sport pictured in the background....mini golf? Curtis has his own take on that one. For Curtis,  his goal in miniature golf is to take his ball and get it in the cup as fast as possible. He has been doing this for about the last three years with no sign of let up. Curtis lines up the ball to start his first putt, hits it, and immediately sprints to the ball to hit it again before it even stops rolling. His turn goes by in a flurry and then he sprints to the next hole and waits for the remaining players to catch up. You are trying to line up your shot? He isn't too concerned about that. He has a hard time understanding why you choose to play the game slowly. Curtis has almost no reaction when he gets a hole in one. He just grabs his ball out of the cup and sprints on to the next hole.

Basketball, soccer, street hockey, swimming, running, these are sports more his speed and where he gets the most enjoyment. His interest in baseball is relegated to the fact that he knows his dad loves it, so we have our occasional practices of hitting, throwing, and catching when he is up for it. We've barely scratched the surface of the rules of the game and his favorite thing to do on a baseball field is run the bases, in reverse order. He maintains a level of interest but the sport is far from his favorite and I'm fine with that. For my part, expectations evolved and I'm happy to play sports with him that he is comfortable with and that he enjoys. He comes with me to the batting cage and I run around with him on the grass with a soccer ball (despite consistent soccer bashing by me in the past). Who knows, he might well play baseball someday but I'll hardly be holding my breathe. Instead, I'm happy to toss previous athletic expectations aside and just let him do his thing, guiding him on the sports he enjoys. It's also a hell of a lot easier than trying to teach him to be relatively still on a baseball field.

Greg, Dad

I’m not going to claim to have coined the phrase, “I’m having a weird thought about that,” nor am I going to claim it’s the best way I could have said Curtis was doing something that by any social norms is unusual, but it works for Curtis.  Anyone who knows or meets Curtis immediately falls in love with him.  He is charming and hilarious to say the least.  Because I care about Curtis, I have the responsibility of telling him if he is doing something that other people are going to think are weird to spare him possible embarrassment in school or other social settings in the future.  Curtis gets just as embarrassed as the next kid if something embarrassing happens to him.  He has come to a point where he no longer resists interacting with other kids to participate in solo activities.  Curtis wants to be liked just like everyone else so to help him with this myself and others around him let him know when he is doing something that others may not like or may find strange.  It all started when Curtis was going through an obsession with collecting coins.  He would stop at almost nothing to get coins.  I let a lot of these behaviors go because like many other activities he once was “obsessed” with I assumed this would pass.  One day we were in a convenience store when suddenly he was on the floor, completely flat trying to get coins from under a chip display island.  Needless to say the floor was less that spotless and I was horrified that he had his entire body pressed into it trying to get some pennies.  I had heard the term “I’m having a weird thought,” from another educator and it rolled out of my mouth at that moment.  Curtis was so caught off guard that he jumped up and immediately questioned what I meant.  While the idea of someone having a “weird thought” was challenging for me to explain and for Curtis to understand, it has been worth it.  Curtis has insisted from the get go that certain people in his life will never have weird thoughts about him and I have agreed with him on this point.  He also insisted that he doesn’t have weird thoughts about others.  After a few months of using the phrase we were on a playground where he saw one of his friends from school.  After several attempts to say hello to this child with no response Curtis looked at me and said, “Jamie I’m trying to say hi to him but he’s not answering.”  Seeing that the child was clearly not interested in the interaction today I responded with, “Well yes now isn’t that interesting?” “That’s not interesting, it’s weird,” he exclaimed!  I quickly took this opportunity to pull him aside and explain he just had a weird thought.  Since that day he has not questioned what one is or how it makes you feel.  We also have developed hand signals to use in public so that I could reinforce him when he was playing nicely with others or reassure him other children are behaving in unusual ways when they stray from the social norms he understands.  Finding a simple way to explain the complex thoughts we take for granted about social norms has been really important for Curtis.

Jamie, In-Home Support

Curtis is not a big fan of cigarette smoking. The only things he knows about cigarettes are that they are addictive and that they kill people. Naturally we've told Curtis this because we want him to have no interest in smoking at any time ever. Plus, well, it's true. He gets "obsessed" with certain games, activities, etc. for a short period of time and we are already worried about what could happen down the road should he ever sample drugs or alcohol so we're just jumping on the whole lot earlier than might be expected. Knowing what Curtis knows about smoking, he has taken a no nonsense approach to the subject. He's willing to give strangers a pass but if you are a family member or loved one with a cigarette then watch out. You'll barely flick the lighter before you hear a scream of "STOP SMOKING!!!".

A week ago on July 3rd Curtis caught a few family members sneaking in a butt and was determined to curb the activity. Knowing there was a family gathering the following day, he started early in the morning by having his Aunt Susie help him with a No Smoking sign. A classic red circle and a cigarette with a line through it which was hung on the porch. Feeling this was not enough, he wrote out and cut about 10 individual citations with a $2.00 fine for anyone he caught smoking. Almost immediately he began keeping an eye on the "smoking area" and started handing out citations to anyone he caught smoking and expected immediate payment. He made a few dollars but his main concern is keeping the circle of people he loves on the planet as long as possible. He isn't interested in your reasons for smoking, he just wants you to stop. And his parents are happy to stand back and let him give you grief for doing it :)

Greg, Dad

When Curtis was first diagnosed, I felt like I was thrown into a tornado.  Everywhere we turned there was some magical cure or a stranger offering unsolicited advice about how to help our son.  Add to that the mental strain of accepting a life that is completely different from what we had planned and the challenge of trying to keep Curtis alive (see the many posts about how he spent countless hours trying to get hit by a car) and I became very irritable when everyone I encountered told me about the gluten free diet.  Here's the thing:  every family will take their own path in treating (not curing...there is NO CURE, despite what Jenny McCarthy says) autism.  Some find great success with gluten free diets, vitamin b12 injections, chelation therapy, and a variety of other methods that are not research-based.  Guess what?  I don't love my kid any less than those who try alternative therapies.  I didn't keep gluten in his diet because it was too hard or too expensive and I didn't skip the therapeutic listening that one occupational therapist suggested to us because I didn't want him to improve.  We, as a family, were seeing outstanding results from the therapies he was receiving and opted to stick with the research-based interventions.

(There was one time we took him to a "speech therapist" who was doing this alternative therapy that helped calm children and increase attention.  The therapy required Curtis to sit in a chair and click a computer mouse to a rhythm.  He repeatedly tried to bolt out of the room and then threw the mouse at the computer.  We were politely asked not to come back.  What we realized later is that the therapy itself required Curtis to possess the very skill we were bringing him there to learn, so it really made no sense at all.  But we had a good laugh thinking about that poor woman trying to keep our kid still for an hour:)

I am completely in favor of every family doing what works for them, but I have to say after a couple of months of listening to every idiot on the street tell me Jenny McCarthy cured her son with a gluten free diet, I was ready to punch the next person who said it to me.  Anyone who has lived with autism, whether they choose a gluten free diet or not, knows that you can treat the symptoms, but you can not cure autism.  Greg and I have met many families who swear by alternative therapies just as much as we swear by early intervention, and that is awesome.  We had a child who wouldn't eat anything other than goldfish, chicken nuggets, and applesauce until he was about 4 years old, and cutting him off of goldfish and chicken nuggets would mean a slow and painful death.  By the time he expanded his food repertoire, he had shown such outstanding progress without dietary interventions, we chose to stay on that path.

So the moral of this little post is:  We all love our kids and we all choose different interventions for different reasons.  Don't pass judgement, because the road we travel is one we draw for ourselves.  There is no map for families living with autism and we are just trying to do what's best for our kids.  So when you see the gluten-free kiddo at a party, don't think its no big deal to give him a piece of cake, because it IS a big deal, and when you hear we let Curtis eat all the crackers he can handle, don't tell us we shouldn't, because you might be the unlucky one who drives me over the edge.  (Just kidding....or am I?)

Laura, Mom