I had a dilemma a couple nights ago. My baseball team was scheduled to play a single elimination playoff game, Laura was working, and I had no coverage for Curtis. Game day arrived and the situation was unchanged. With only 11 players playoff eligible I felt like I had to be at the game, so his mom packed him a bag with snacks, materials for drawing, his Leapster, and a trusted stuffed animal friend. There was no way to tell how it would go. Curtis and I picked up the teams shortstop and were on our way.

It was a night game, 7pm start so I was going to be pushing it with bedtime but that was just the start. I'd be spending half the game in Centerfield and Curtis would be beside the dugout, about 15 feet from a road with heavy traffic. A couple of years ago this scenario would have been impossible. Even now it made me very nervous. There was no one designated to watch him while I was in the field. The situation felt like a bit of a roll of the dice though I was confident he'd stay relatively still while I played defense.

I then spent 70% of my time in the field watching Curtis and 30% watching the game. I thought about how quickly I could make the run if he decided to walk toward the street or if I would yell at the shortstop or 3rd baseman to head him off. Good thing I'm in the outfield. I had more time to think about these things. The only defensive repercussion was when I caught a line drive in left center and completely spaced that there was a runner at third base. He scored easily.

For his part, Curtis was great. He sat on a patch of grass with a batting helmet on and did his thing. He didn't watch me at the plate when I hit because he doesn't give the first sh*t about baseball. Even later in the game when excitement was up and people told him his dad was hitting, he'd throw a quick glance my way and go back to what he was doing. I knew this, and there's a certain comfort level in how he "watches" me play. I'm not his hero if I get a big hit, he's not disappointed if I strike out. He doesn't care and I'm cool with that. He finds baseball insanely boring and he's hardly alone but his dad loves it so he's gotta deal.

A saving grace came in the 4th inning when the team's elder statesman (who has been battling a back problem) showed up sans uniform with his ten year old daughter. Curtis knew the girl, Bridgete, and she laid out a blanket for them to sit on. She agreed to play tag, still his favorite game, and they colored. She cheered for me when I batted and Curtis occasionally pretended to care.

In the end it all worked out great. The team had an improbable win and I had a decent game ( 2 for 5, 2 runs, SB) but it's not a scenario I'm eager to repeat. Curtis is aware of traffic now that he's about 8 and a half but he's still not fearful of it. He still doesn't always look when he approaches the road without some prompting. But I got to play and contribute and he got some good social time in. He even started to feed on the small crowd that cheered us to a victory. We seriously had about a 10% chance of winning the game and we puled it off.  Definitely a win-win. Now the team has advanced and my next game is scheduled when Laura works. Anyone want to babysit?

Greg, Dad

Also, I came across this video on youtube of a kid with autism pitching. Check it out. The kid is stinking cute and his timed delivery and facial expressions are adorable. He also racks up three strikeouts!

Curtis had his first swim lesson last night, thanks to the great people at Aquaholics and their Special Surfer Night.

"Hi Everyone! We're taking registrations for this summer's (YES! SUMMER is HERE!) Special Surfer Night. You don't have to fit any guidelines, we love kids with Autism, Aspergers, Downs (UPs) Dubowicz, Blind (YES!) Deaf, Wheelchair, well, you get the idea. If your surfer is special- we want to share the stoke!"

The little man took the challenge head on, declaring he loved surfing and scoffing at his wipeouts. His instructor declared him "very brave", a trait we are well aware of but that's always nice to hear. Curt repeatedly went back for more and seems eager to continue to learn surfing and we're more than happy to foster the activity. So again, a big thank you to the people at Aquaholics for putting on the Special Surfer Night and introducing a great activity to kids who otherwise may never have been exposed to surfing.

Greg, Dad

When Curtis first started in school he was oblivious to the need for friendships. Now 8, he has developed many friendships at school and is much more interested in seeing friends out of school.
Through trial and error we have learned a few things about autism and playdates. The high energy parts of the get together usually go smoothly. Jumping on a trampoline, utilizing a playground, or playing tag in the field are all activities that are comfortable for Curtis and his neurotypical play partner. The tough part was always when the action slowed down. How to help Curtis be his interesting, inquisitive, and funny self with his friend without the need for constant motion.

This past weekend, Curtis was feeling a little nervous about having a first playdate with a friend. He knew what playdates with his cousin and other friend were like from previous experience. Lots of fun, running, maybe some opportunistic mischief resulting from Curtis being easily coaxed into something he shouldn't be doing. This time however he was meeting up with his favorite math partner who doesn't have the same excitable energy of his usual playdates. Curtis was feeling some additional pressure this time around.
In anticipation of the playdate, Curtis was given a clear time parameter. The playdate would start at 9am and end at 11am. Rather than structure increments of time, Curt's mom Laura put an activity list on his desk that he could refer too:

Activities-Indoor
Legos
Trouble
Trash
Sorry
Uno
Hot Wheels
Whack a Mole
Bop It
Connect Four
Alphabet Game
Boat Building Set
Jenga
Operation
Paint/Draw

Have a Snack

Activities-Outdoor
Sidewalk Chalk
Playground
Razor Scooter Riding
Soccer

Curtis chose several activities from the indoor list before bouncing off the walls and letting us know he wanted to burn off some energy outside. We suggested he let his friend ride his scooter over and wear his helmet as a gesture he was willing to share and Curtis complied. It was clear this boy knew Curtis well. He complimented Curtis when he bragged of recent accomplishments like making his own PB&J and putting on his bike helmet by himself (without gagging on the strap). He also had no issue calling Curtis out when he made up a bogus safety during tag or attempted to gain an edge at other games. With a little direction, the boys hardly needed any guidance, except when Curtis stopped playing long enough to ask if a bee could fit inside his ear. We also occasionally reminded him to return questions like "what have you done this weekend" by asking his friend the same question in return.

As is typically the case with Curtis, a lot of preparation goes a long way.

Greg, Dad

The fifth annual World Autism Awareness Day is April 2, 2012. Every year, autism organizations around the world celebrate the day with unique fundraising and awareness-raising events. How will you celebrate? To share your events, please "Like" the World Autism Awareness Day page on Facebook and submit your events by posting the information on the wall.

http://www.autismspeaks.org/what-autism/waad


Thanks to Laura, Drawing roads is now on facebook so be sure to like us. https://www.facebook.com/drawingroads

Drawing roads also passed 40,000 site views last week so thank you for reading. Our goal is simply to spread awareness as well as to show that while autism isn't ideal, it isn't the end of the line. We also know we are very lucky and that there are thousands of other parents who do everything we've done and may never get the sort of results we have gotten and hope to get in the future.


Today, I'm just going to list a couple of my favorite 'autistic' behaviors we see from Curtis.

1.) Planned Intros- Something funny or interesting happens on a Tuesday and Curtis will tell me that he is going to tell his cousin about it on Saturday. The first few times I put it out of my mind but come Saturday it's always "Hey Jayden, " and what comes out is exactly what he said he would tell him. It's as fresh in his mind as if we just talked about it on the way over. It's pretty amazing.

2.) Time Stamps- The ability to time stamp things in his brain is cool. The things he chooses to time stamp are a riot. He can't tell you every day he did anything, but if you ask him what day he learned to play the online game Sushi Cat, he will tell you "June 4, 2011".

I'll throw in a least favorite. He is pretty much always booing while others are cheering. Literally.  And he has a general lack of empathy in a number of situations. Say a kid falls off his bike, Curt is more likely to laugh than express concern. He is still processing how to deal with these types of situations and I see it as a work in progress.



Greg, Dad

By definition, A developmental delay is any serious lag in a child's physical, cognitive, behavioral, emotional, or social development in comparison norms for specific ages. The most common delays are children not crawling, walking, talking, etc. by a certain age. Global delays indicate a lag in all developmental areas.

Curtis' delays have taken a number of shapes and forms. His speech was very delayed, rarely speaking until about 3 years old, and he is still learning some of the basics when it comes to interacting with people and understanding feelings. There have also been a number of other cognitive and sensory delays. However, there are also a number of delays that no one would ever notice except those closest to him and they are often the most interesting.

For instance, Curtis could not process his sense of smell until he was about 7 and a half years old. He seemed to have no frame of reference for what something smelled like and it's rather difficult to explain the interpretation of a sense to a child. Out of the blue, about 8months ago he started to relate smells. It began with him recognizing the smell of pizza as pizza and realizing he knew the smell. He immediately began to relate other smells and realizing he knew what watermelon, popcorn, and pickles smelled like. It was a big deal for him and us. I often wondered if he was going to go through life never knowing what anything smelled like.

Last week on our way to Connecticut to see family, Curtis winked at me. This was something he had previously practiced to no avail. He was very proud of himself as he had been trying to figure out how to get his face to wink for months. All he had been able to do prior was shut both eyes and open them and would get frustrated that I could wink at him easily.

Today, he took a piece of scotch tape and rolled it up with his fingers like you would to hang a picture from its back. It doesn't sound like a big deal, but it was a huge deal for Curtis who previously deferred to an adult to roll him tape for him. All prior attempts had ended in frustration. There are other delays that continue. There are bigger ones like butt wiping and teeth brushing that he needs help with. Others like tying shoes and riding a bike, where he isn't too far being his peers but he isn't that close to getting them right either. But with every conquered delay his confidence increases. As parents and caretakers, every time he is frustrated by a delay we remind him of the large number of delays he has already overcome. And how we'll be there with him every step of the way to conquer the rest of them.

Greg, Dad

This is how Curtis coped with an unexpected schedule interruption last week. By throwing his baggie of pretzels on the ground, "hiding" himself with a turned over table and retreating to the comfort of a multiplication poster he has already memorized. He didn't flip the table in a rage or anything, rather this table closing him in the corner is his way of being alone.  Curtis  tends to take surprises personally, generally feeling betrayed by his caretaker at the time, and it takes some work to get him back on track. But generally he needs some solo processing time first.

In this case, he was surprised one morning to learn he would be doing some testing  with the special ed. director and that his trusted 1:1 would not be accompanying him. Ideally, we would prep him a day in advance with this type of news, letting him ask as many questions as he wanted,  but this time it didn't work out that way. You see how he took the news.

This is also one of those instances where I can see those who don't understand autism rolling their eyes. He's spoiled, coddled, etc. It's easy to say if you don't know or understand him and children like him. But those of us who know him know what's running through his head. What will this be like? What about what I was supposed to be doing at 10am? Is that pushed back or cancelled? When will I be done this exam? How does this effect the rest of my day? He is noticeably overwhelmed by such a situation and no one's judgement of his reaction changes his process one bit. To him, at that moment, the sky is falling.


Before his exam he was clingy, nervous, and angry. Once he got through the testing, Caron walked him around the school to discuss the testing, why it came as a surprise this time, and how the rest of the day would still go as planned. There would be no more surprises though a surprise can still happen at any time. He still had X, Y, and Z to look forward to on the day and everything would be fine. As his parents, we are just thankful he has someone he can trust to get him through these tough times so he can stay in school for the 90% of the time when he is engaged, productive, social, and happy.

Greg, Dad

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

Curtis is still finding comfort in asking a lot of questions. He's been doing it pretty much since Halloween. The flow of questions is constant, whether he's relaxed, stressed, eating, or working. It's mostly funny but occasionally infuriating. Seems like at some point this behavior will be gone and replaced by another. For now, here is a short representation of the questions he has been throwing at me, Laura, Jamie, and Caron lately.





"Is it okay if I left some hair out there?"
"Is it ok if I did anything with my fingers?"
"Is it ok if I touch the table and then my glass?"
"I didn't sniff my water did I?"
"What would happen if there were no guns and MLK Jr. was still alive?"
"Is it okay if I got some lemonade on your bag?"
"What would happen if the Earth was split into two circles?"
"is it ok if i did anything?"
"Is it okay if I dropped a fingernail in the fire?"
"What would happen if i got an eye booger in the heater?"
"Is it okay if I got a little pizza grease inside my ear?"
"Is it okay if anything ever gets on my jacket?"
"What would happen if the world was heart shaped?"
"Is it okay if something comes out of the Earth?"
"Is it okay to let go?"
"Is it okay if salt got on the wood?"
"Is it okay if I touched your knee?"


Greg, Dad

There has been a lot of press coverage on the redefinition of autism since the story broke last Thursday. Experts are attempting to reduce the number of children diagnosed, not through therapies, but by changing the criteria of what qualifies as autism. The bottom line would mean no services for high functioning classic autism, Asperger's and those diagnosed PDD-NOS. The reality is that preventing these kids from getting early intervention services is short cited and will only end up costing a lot more in the long run.

The Autism Society, using the Government Accounting Office Report on Autism 2007, estimates that "Cost of lifelong care can be reduced by 2/3 with early diagnosis and intervention". Personally, I have no doubt that the services Curtis has received since his diagnosis are preparing him to survive, work, and live in the real world, and that lifelong costs associated with his care, which some estimates have at over $3 million, will be greatly reduced by the therapies and help in school that he has received in his formative years.

I've read several articles on the topic in that last few days and identify with this mom completely. Her son exhibits more classic autism visual signs than Curtis, but there are lots of similarities with our kids. They need help in school, but there is intellect and talent to unlock that could be turned into productive, wage earning ability. She says of her son:

"He scored 98% and 100% on his two most recent French tests, exactly the same tests the typically developing students in his 7th grade class took. Sam can tell you the day of the week your birthday falls on, going forward or backward about 50 years, and also remembers most of what he did on any particular date for the past several years."

The article points out a cost of about $30,000 a year for a full-time aide to get her son through his day. I believe it is this cost and any associated cost driving this redefinition as a quick fix on school. Sounds like a lot of money and it is. However, it pales in comparison to providing full-time care to adults with autism in group home settings, with estimates between $75,000-$200,000 a year. Save today, pay a lot more tomorrow because without early-intervention services, these people with autism are going to have no where to go when their parents pass on.  I have no doubt Curtis would need full-time care for the rest of his life if he hadn't been receiving the services he's been getting since he was three years old just as I have no doubt there is now hope for him to work and live independently after the. We would love nothing more than to ween him off these services, as soon as he's ready, but Curtis and kids like him require these services in order to figure out the rules the rest of us are playing by and figure out a pretty confusing world, then adapt.

With appropriate supports, autistic individuals like Sam are able to learn and to grow into productive, taxpaying members of our society. If a far narrower definition of autism is adopted — allowing insurance companies and financially-strapped school systems to deny beneficial services – society will pay far more in the long-run, more families will be financially devastated by this condition, and people with a significant disability will be relegated to a lower quality of life.

There is a rather annoying article from The New York Times today which talks about new definitions of autism that will reduce the number of children diagnosed. A sort of bell curve of autistic symptoms where high functioning autistics and those with Aspergers or PDD-NOS may not get the early intervention services they need because they aren't autistic enough. As Dr. Fred R. Volkmar says in the piece of the surge in autism diagnoses:

“We would nip it in the bud.”

Wow, that sounds like a guy who doesn't get it. We would nip it in the bud? Great choice of words doctor! This reads like he believes autism is like welfare abuse or some sort of insurance scam. I'm still not sure what people think parents of autistic children are getting from the diagnosis. If they are handing out money to parents of children on the spectrum, I'm still waiting for a check. Do they think we long for our kids to have their own personal babysitter at school in the form of an ed tech? Yeah! Isn't that every parents dream??? I think it's more likely there are budget cutting agendas in mind and not so much what's best for these kids who need some help. Color me shocked.

I was watching a little Spongebob with Curt the other day and just before the end of the episode, he asked me why Mr. Krabs had set up a hotel. As so often happens, Curtis had missed the entire point of the episode which unfolded in the the first few minutes. That Mr. Krabs set up a hotel and you had to rent a room in order to get a Krabby Patty so he could make more money. It took a long time to explain that, because in the world of autism, this plot makes no sense and doesn't even register. Curtis has seen entire movies like Shrek or Madagascar several times before finally asking us the most basic plot line questions. So many things are going over his head all the time.

Now translate this into the school setting. When the teacher is speaking to the class, Curtis likely gets lost quickly without some help. Any number of words or phrases confuse him and then you've lost him. And if he can't follow the trail, he isn't going to pick up the path. Without the support he has now, he would need to be home schooled. Curtis is only now beginning to ask enough questions and eliminating those times where he doesn't understand something as just lets it go.  He looks like a normal kid and even manages to sound like one sometimes, but right now he can't do it on his own. He's making progress towards that, mostly because he's had years of early intervention that have developed his speech and ability to interact with and befriend other children and he's had the support he needed to be successful in school. Support we fully intent to ween him off as soon as he can handle it.

“Our fear is that we are going to take a big step backward,” said Lori Shery, president of the Asperger Syndrome Education Network. “If clinicians say, ‘These kids don’t fit the criteria for an autism spectrum diagnosis,’ they are not going to get the supports and services they need, and they’re going to experience failure.”

I'm inclined to agree with Ms. Shery. The article also mentions autism spectrum disorder, eliminating Asperger syndrome and P.D.D.-N.O.S. together to lump them into one category, though there are pretty clear differences between my son with classic autism and someone with Aspergers.

Dr. Volkmar said that although the proposed diagnosis would be for disorders on a spectrum and implies a broader net, it focuses tightly on “classically autistic” children on the more severe end of the scale. “The major impact here is on the more cognitively able,” he said.

Sure hope my kid isn't too "cognitively able" to get the services that have allowed him to make so much progress thus far. Or any other autistic child who would greatly benefit from early intervention and similar services.

I'm willing to admit could be a flip side to the argument. There are probably some kids who have developmental delays by means of flat out parental neglect or other factors and they aren't truly autistic. Who knows. I have no idea what percentage of the autistic population this comprises but I doubt it's a lot.

People on the spectrum are typically diagnosed as such because their brains are wired differently and I would hope the specialists who are diagnosing autism know the specific behaviors. I believe for the most part they do. We have a terrific specialist who has seen Curtis every since months since his diagnosis and is always charting his progress.

The continued rise in autism and Asperger's probably has more to do with recognizing signs that have existed for years but around a lack of awareness that now exists. These kids need intense support at a young age in order to unlock their potential and my hope is that they continue to get it once this redefinition goes though.

Greg, Dad