Curtis was just in the tub yelling:

"I think I got all the sand out, ya know? I dunked my head under the water three times to get out more sand. You know? Is there still sand on my head?

He's switched to singing "Born This Way", as he does. I took Curtis to the beach today for some boogie boarding and the waves were pretty decent. Maybe a little too high add to that an undertow from a retreating tide and I was wondering how successful this boogie boarding session would be. But there was no turning back once the shirts are off.
The best times with Curtis are almost always when you are one on one with him. That's just the way it is. When he's socializing with kids, you're hoping it goes well but expecting the worst and when there's more than one adult around, Curtis is unpredictable. Something about more than one adult interacting with him at a time can set him off to "rascal behavior". A lot of the rewarding times are with many people around but the one on one is the fun stuff. He feels much more loose and at ease.
For the most part today, I would have Curtis lay on the board and half hold him and the board while he rode a wave. Other times he just wanted me to lift him over a wave and dodge them so he didn't get plowed over. But there were also the times where he wanted to be a big boy and take the waves on himself. 
Curtis would climb on the board and ride the wave in to shore, usually hanging on to the board the whole time. But he couldn't figure out when to use his arms to brace for the impact when the wave eventually drops him on shore. Most of the time he was face planting into shore and spitting sand. And in the undertow and he would face plant, then get a quick water drag down his face and it was sucked out towards low tide.  He would stand up, hair and face covered in sand and look for his board. Thankfully he was never hurt, didn't mind me laughing, and was not embarrassed by the face plants. He wouldn't even really get that he should be embarrassed by them. And he certainly didn't notice all the people smiling at him as he grabbed his board and came back out to try it again. He just kept at it and had a blast.
He took a beating by the shore despite my attempts to help but got out only when it was too cold. He was telling everyone the rest of the day what a great time he had while simultaneously awaiting bath time to rid himself of the leftover sand.

Greg, Dad

"All the Borders are shutting down. How come people don't go to Bookstores? Because there's good books online?"- Curtis

Curtis is a huge fan of bookstores and libraries and rarely refuses a trip to either. He visits the library on at least a weekly basis and in addition to working his way through the Bill Nye video library, he also gets a book or two on each visit.
Curtis was disappointed to hear that Borders was closing its doors and was very curious about why they couldn't stay open. He gets the basic idea. There's still some local stores to visit but Curtis is a big fan of large chain stores. I imagine it has to do with the familiarity of seeing the advertising, signs, and stores in multiple cities. Here are some of the entries in his summer reading log of finished books, though he fails to record them all. As is his style, he tends to read in clusters.


Magic Treehouse Research Guide: Titanic- by Will Osborne and Mary Pope Osborne
Magic Treehouse Research Guide: Space- by Will Osborne and Mary Pope Osborne
Magic Treehouse Research Guide: Ghosts- by Will Osborne and Mary Pope Osborne
Tigers at Twilight- Mary Pope Osborne
Dingoes at Dinnertime- Mary Pope Osborne
Civil War on Sunday-Mary Pope Osborne
Revolutionary War on Wednesday-Mary Pope Osborne
Twister on Tuesday- Mary Pope Osborne
Corduroy- Don Freeman
Buddy: The Puppy Place- Eileen Miles
Justin Bieber- First Step to Forever: My Story

Greg, Dad

For some parents, the decision to have another child isn't a particularly difficult one. Two is better than one, kids need siblings, all that good stuff. As parents of one child with autism, the decision doesn't come quite so lightly, at least not for Laura and I it hasn't.
We don't believe Curtis got autism from vaccinations. He was exhibiting signs of autism even before those shots. While there are still more questions than answers regarding autism, we do believe that genes played a major role in Curtis being born with the condition. Specifically, the combination of our genes, for whatever reason, and probably other environmental factors. According to this study posted on Autism Speaks, if we have another boy, the risk of his being on the autism spectrum could be as high as 25 percent.
I consider myself a baseball player and have played in one league or another pretty much since the age of 9. I strike out about 25 percent of my at bats and it sure seems like a lot. That's once every game I play. If there was a 25 percent chance I would drown when I went in the ocean, I would stay the hell out of the water. So what's a parent of a child with autism supposed to do with a statistic like this?
Don't get me wrong. I don't consider Curtis a strike out or akin to a drowning. He's amazing and I feel incredibly lucky to have him and I don't even mind that he's a lot of work, I like work, but he does require an amazing amount of attention and advocacy. The fact that he has two incredible aides who write for this site should illustrate the amount of care that is required to get Curtis through a typical day. And let's not forget he is high functioning on the autism spectrum. Other parents of lower functioning autistic children don't have cute, heart warming stories of their child to share. With children Curtis' age, some parents are still waiting for first words or even recognition that the child understand who his parents are. Or waiting for him to stop physically harming himself on a daily basis. This is a scary prospect when I consider myself warned that there is a pretty decent chance this could happen on the next go round.
All kids come with challenges of course and even a typically developing child would spread us thin with the amount of work that goes into raising Curt. If we were to have another child with autism we are certainly well equipped to deal with it. We would have experience on our side. But I still don't know. Laura and I enjoy sports, hobbies, work, friends, some quiet time together. A 25% chance the next boy has autism too....and what that could mean...I really don't know...that's a tough one.

Greg, Dad

Curt's blunt honesty, a trait of the autism spectrum disorder, has been addressed on here several times but it's a subject that never really gets old. Since most of our social norms and behaviors are foreign to him and not at all instinctual, he lets a lot of things slip out of his mouth that other people wouldn't. In other words, he doesn't have much of a filter. Plus, he's also almost uncontrollably drawn to excess body fat. That's a bad combination.
The few times I'm shirtless around the house, Curtis will spot me and get a look of determination in his eye. He yells "belly!" or "dad, you're so FAT" and does his best to slap my belly fat before I stop him. I tend to carry an extra 10-15 pounds above my ideal weight at different times and Curtis is relentless and unforgiving in his quest to make this known whenever he can. To Curtis, there is simple math involved to how much you sure weigh and anything above that is fodder for discussion...or maybe it's ridicule, regardless, it's never malicious, but born more out of curiosity as to why I weigh more than I should. We've noted that you have to have a thick skin to be around Curtis and he proved it in spades during our recent Vermont trip.
While Laura recovered from gallbladder surgery, it was on me to jump in the water with Curtis and have a good time. But not before I took off my shirt to get in the water. With parents, kids, lifeguards, and sea life looking on, Curtis points to my stomach and screams "Belly! Belly!" and runs up to me. A thick skin sure comes in handy here. Naturally, we tell Curtis not to do this and explain how socially inappropriate it is, but at this stage it's still a difficult impulse for him to control. Another time as we ate dinner, a shirtless camper walked by the cabin and Curtis said, almost within earshot,  "Oh my God, he's so fat, he's much fatter than you, dad". Sometimes we wonder what we're supposed to do with a kid like this.
But I have to admit, Curt's relentless heckling makes me want to do something about it. There is often a method behind his madness. And when I ask him to lay off the belly comments he says, "but I just want you to live for a real long time, dad". I told Curt a couple years ago to reprimand if I order a cheeseburger and he never forgets. He stays on top of my bad habits and inspires me to change them like no one else. So, inspired by his humiliating scene at the camp, I came home and started making fruit and  veggie type shakes and am back down about 5 pounds. We'll see if it sticks but if it doesn't, I know exactly what's coming.


Greg, Dad

Curtis and I are on the brink of our third year together, tackling both the successes and the struggles that public school throws the way of children with autism. We have had our fair share of success and struggle, among them has been having my position get cut every spring due to myself being a "new" hire in the district. Because so much of his success at school comes from our solid relationship -  this news always throws us for a loop in the last week of school. However, it also gives me a very clear reality check on both the fragility of my position and my work with Curtis. Thankfully, over the past two summers I have been re-hired after a great deal of advocating from Greg and Laura, the school I work for, and the simple fact that the district can not do without an IEP position, especially one that has been so successful. I am humbled to say the least and always enter the following year with more fuel in my fire. What happens in the spring is, inevitably, very fresh in my mind the following fall.

I was taught in grad school that its the ultimate goal in working with my clients to "release" them some day - ultimately I want to work myself out of a job. This was told to me when I was in getting my MSW and training to be a counselor, however I take this advice to heart every day with Curtis. This may seem odd at first to hear but there is a beauty to letting go that is very powerful when working with kids. While I love Curtis inside and out, I also want him to not need me some day. I want him to have the tools inside himself to navigate the school hallways and classrooms with more independence and self-confidence. I want his friends and his peers to do my job and I want Curtis to feel as comfortable with his friends (or perhaps just one) as he does with me. I want Curtis to be proud of exactly who he is and I want him to shine with uninhibited happiness. We are almost there - little by little - and it is quite a sight to see and experience. Having my position cut every spring reminds me of this goal and makes me work that much harder to get him there the following fall.

However until that "letting go" moment arrives I will still be outside the school waiting for him as Greg drops him off in the morning. I will still be with him every minute of the school day either front-loading or pulling back when needed. I will challenge and support him, I will accept him as is and I will wish him a good night once Laura is there to pick him up at the end of the day. Curtis will have his daily targets that he needs to meet. He will have his rewards to earn, he will have his social groups, he will have his advanced math and reading groups and he will have moments in the day that throw him for loops and frustrate him.

A seven hour day with Curtis can be jammed packed. One day last year, I had him out in the hallway doing math that was a few years ahead of his class and a veteran teacher came up to me and said, "I think Curtis is the hardest working student in this school." I thanked her very much for the compliment but asked her if she would tell that to Curtis. Once she did - Curtis' eyes widened up,  he looked at me and smiled and then looked back at her with this look that could have said "Well, what else would I be doing here?" Curtis may think he comes to school to simply meet his targets and get his reward but there is something else going on underneath all of that that I am so lucky to witness every day. I truly can not wait to see him walk up the sidewalk on September 6th.

Caron, 1:1 School Support

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

I prefer to blog about funny things Curtis says and does and how his autism has enlightened us and enriched our lives.  However, there are certain things Curtis needs that typical children don't need and many of those things are obtained via state agencies and public schools, both of which are the antithesis of user-friendly.  Today, I will share why one of those agencies, DHHS, is likely to drive me completely insane.

Autism is a disability that qualifies Curtis for Medicaid insurance through a program called Katie Beckett.  This program is essential to Curtis because the insurance he gets from Katie Beckett covers services that our private insurance may not cover or may require extensive authorizations or place limitations on how frequently Curtis can receive those services.  The insurance is not free to us, as a matter of fact, we pay more for him to be insured this way than through our work insurances, but the coverage is so much better its worth it.  There is one massive problem with this program....we deal with six different offices to receive this coverage and none of them communicate with each other.  We have to deal with the local DHHS office in Portland, the Medical Review Board in Augusta, Maine Care member services, a contracted nursing agency, the Katie Beckett representative at DHHS, and a payment center that processes our monthly premiums.  Every year, I have to fill out the same paperwork as someone who is applying for Medicaid based on low income, even though we are not accessing the insurance for that reason and we clearly make too much money to qualify anyway.  Then, I have to photocopy Curtis' IEP, his service plan for in home support, and his progress notes from any therapists and doctors who see him (totaling about 70 pages) and mail it to DHHS so they can have a nurse meet with us to determine that Curtis still has autism.  In addition to this, I have to copy and mail the same exact 70 pages of paperwork to Augusta every 3 years so the Medical Review Board can determine that Curtis still has autism.  Last time I checked, you're pretty much signed on to autism for life, especially once you enter grade school, but I guess I'm not qualified to determine that. 

So, after this never ending, irritating process, someone deems Curtis disabled enough to get the insurance and I get to mail payments to a payment center in a completely different town every month.  Guess what they do with these checks?  They cash them and never tell the Portland DHHS office they got them so every couple of months I get a notice from DHHS saying his insurance will be canceled.  Its not annoying at all...except it is.

Laura, Mom

*After re-reading this post, I must make two disclaimers.  First is that I am completely grateful for every bit of help Curtis receives, I am simply discouraged by a system that is so engulfed in red tape it is difficult to access.  Secondly, I am in no way blaming the hard working employees at DHHS.  I am sure they work very, very hard and probably don't get paid nearly enough for what they do.  My problem is with the system they are forced to work in.  I believe they would benefit as much as we would if there was some kind of central database and less paper coming across their desk every day.*

      I'm going back to the Daniel Tammet well for one more entry. On page 163, Daniel says, "Another common saying that puzzled me was when my parents might excuse one of my brothers' grumpy behavior by saying: "He must have got out of the wrong side of bed this morning. " "Why didn't he get out of the right side of the bed?" I asked. That's exactly what Curtis would say. That, or he would start with "Are you making a joke?" His catch-all for phrases foreign to Curt.
      Other phrases that would elicit this response from Curtis include: Go jump in a lake, go fly a kite, don't have a cow, a little bird told me, the refrigerator is running, spill the beans, i'm getting eaten alive, the ball went through his legs (to him that means in one side of the leg and out the other), the sun was in his eyes, etc. Curtis eventually hears some of these things often enough to commit them to memory but most of the time he is going to ask if you're making a joke. And doubt your sanity. I should count the number of "Are you making a jokes'" questions in a day sometime. I believe this inherent misunderstanding of the english language is part of the reason Curtis gets along so well with most of his ESL classmates.
      In addition to idioms, there are many terms and social emotions Curtis struggles to understand. He has a hard time understanding jealousy and asks for many examples to make sense of it when the word comes up. He's also not too great at social cues but it's all a work in progress. In Vermont, he ran up and hugged a new friend and didn't come close to letting go, despite her wide eyed paralyzed stance, until I told him to let go. Curtis just assumes everyone wants him to hug them and a large percentage do. Somehow this all just works out in his favor anyway and makes him more charming. At least to his inner circle it does.
      Incidentally, Daniel Tammet has become somewhat of a hero of mine. There are other successful autistic personalities, like Temple Grandin and Kim Peek, but Tammet is who I hope Curtis can most closely emulate. If for no other reason than he learned to live independently and travel and as much as we love Curtis, it would be awesome if he moved out some day. As much for him as for us. Daniel Tammet figured out the rules the rest of us play by and Curtis seems capable of the same.


Greg, Dad

      We started Curtis at Easter Seals for early autism intervention services as soon as we could, the fall after he turned two years old. He was largely unconcerned with his classmates during his three years at Easter Seals and while socializing was important to us, at the time it was not as important as the speech and occupational therapies he was receiving. During these years, we were still trying to figure out exactly what was happening with Curtis and wanted him getting exposure to people who knew how to treat this condition.
      As Curtis turned 5, we explored different programs for youth sports and considered enrolling him in something. The way he played and interacted with typically developing children made it seem unlikely he could make it through a program like this but you don't really know until you try. Special needs athletic programs were difficult to come by he was 5, so we paid $40 to enroll him in an intro to baseball program for kids 4 and 5 years old. We discussed Curtis' condition with the program director who didn't think he would stick out as many of the kids ended up off doing their own thing at some point in the class. Let's just say the typical kids behaving badly had nothing on Curtis. He was dead set against proper participation and didn't understand who the instructor was or why he should listen to him.
      We understand more clearly now how much Curtis feeds off the energy in a given room or environment. For example, in addition to the noise, a cafeteria can be a chaotic time for kids and Curtis has a hard time with even a controlled school cafeteria. The sounds (clanging, slamming, yelling, excitement) just seem amplified to his ears. This intro to baseball program started simply enough with the instructor trying to line the kids up to toss a ball to each other. But kids were laughing, and walking, and yelling to their parents, and Curtis exhibited that energy by an exponent of four. He rarely ever stood in one spot as the instructor requested at his opening. He couldn't stand in his spot long enough to wait for a return pass on a ball he had just thrown. He just wanted to run. This program felt like a mistake.
      Laura was an patient as possible and when Curtis would run, she would walk him back over to the spot he was to stand on near the other kids. This just became a game to him and he would bolt in anticipation of Laura returning him. Some kids played pass, some kids stood still, and then there was Curtis, running and screaming all over the place. The parent glares were as bad this day as any I can remember. At one point, Laura retreated to the bathroom to cry briefly while I walked Curtis outside to an empty playground. A place he felt much more comfortable. There is certainly a frustration about not being able to control this type of situation. We left after maybe 15 minutes but returned over the course of the program to get Curtis familiar with coming to this school, at this time, for this reason, to increase his familiarity. We left only when we felt he was becoming too much of a distraction to the other kids who always had little idea what to make of Curtis.
      The baseball course was not a success but we tried again when he was almost 6, signing him up to play soccer with 4 and 5 year olds. He makes so much progress all the time that it's worth it to us to push him and see what he can handle. Plus, he had demonstrated a real interest in soccer and maybe this would be a better fit. In reality, it didn't go a whole lot better than the baseball.
      He had a soccer doll at home that he called "Soccer Boy" that we got out of one of those claw machines months before. On the first day of soccer, the patient instructor tried to start with some basic drills as any instructor would. Again, most kids did not have a hard time lining up and kicking the ball back and forth but Curtis did. He would run, yell, sing, doing anything to prove he didn't have to do what the instructor requested. Then he started calling the instructor "Soccer Boy", as in "Leave me alone, Soccer Boy!", etc. I could tell by the look on the guy's face that he was unimpressed with the moniker, though Curtis didn't mean it as demeaning as it sounded. Still, the instructor had a "you have to be kidding me" look on his face and soccer signs-ups were team sports disaster number two.
      At 7 and a half years old and after much progress, we still don't have a team sports success story, but we're working on it. We feel at the mercy of the types of programs in the area and an honest assessment of what Curtis can handle. We were going to sign him up for a special needs athletic program last year that was cancelled. There is also a "challenger" baseball program though his baseball interest is still minimal. A special needs soccer or basketball program is probably an ideal setting for Curtis, especially if we can get another kid he knows to do the program with him. Though I'm willing to bet he's better at basketball than most kids his age, he still has a hard time with passing and following a structure of the game and I could still see him throwing in the towel 5 minutes into the first session, swearing he'll never go back. However, Curtis maintains the curiosity and willingness to do new things and that's what we consider most important. Eventually, we find when we work tirelessly with him on things, he usually does come around. So maybe one of these days we will have a successful story along the team sports line to share. Until that time, he'll get his usual one on one instruction from those who care about him the most, and we don't have a problem with that. He will be ready when he is ready.

Greg, Dad