The end of the second grade school year is here - 20 days to be exact. Curtis has been up against some large challenges, big obstacles and some heavy emotions over the last nine months. He has taken on the work load of a 3rd/4th grader in all areas, he has blossomed socially in the classroom and in small groups and he has navigated a different hallway, a different mainstream classroom and a different teacher like a champ. To honor all of these accomplishments I have created a chain of "rewards" that Curtis gets to tap into every morning once he hangs up his bag. Each chain link has a "Congratulations - you have worked hard this year, you get to  ____________!" 

The rewards are mostly centered around struggles he has gone through (and successfully made it out on the other side) all school year. For example, he usually puts up a fight in doing his morning work on Monday morning after the weekend. So, one of the rewards allows him to skip it and "take a chill pill in my chair", on another day he might get to "skip" music class - another year long struggle for Curtis. Finishing some "useless" (according to Curtis) classwork has also caused a lot of stress for him. One of the rewards coming his way this week is to go through his math journal and rip out one page and putting it in the trash - something he has been itching to do all year long. I lined up the chain links with certain rewards on certain days knowing where he is usually struggling and making the last chunk of the school year smooth and filled with joy and pride - as it should be. We all deserve to be rewarded for making big leaps in life. Curtis has the next 19 school days filled with rewards for navigating second grade like a warrior and coming out stronger on the other side.

Caron, 1:1 School Support

Curt's cousin Jayden turned nine today and Curtis had ages on the brain. He made a giant nine for Jayden in the form of a road, followed by his name and age and a few more after that. He also wrote down his school's character traits which he memorized some time ago.

Despite having autism, Curtis is performing at or above grade level in all academic areas of the classroom. In April, his performance was compared to a normal distribution of scores from peers his age with the Wechsler Individual Achievement Test-Third Edition.

*Curtis receives individualized adult assistance across the curriculum throughout the day. Academically, Curtis is strong but needs a lot of support and front loading to be able to participate in groups within the classroom. He did these tests on his own, in increments of 35 minutes, with an examiner.

Individual Achievement Test Results

1.) Curtis' strengths are in the areas of decoding and math. He correctly answered questions around the calendar, number order, patterns, counting and comparisons. Curtis was able to answer questions about graphs and he correctly multiplied 20 facts in 60 seconds in a subtest not normed for the second grade.

2.) Scores above average for pseudoword decoding and math. High average range for reading, oral reading fluency, spelling, numerical operations, and math fluency- subtraction.

Above Average Testing Areas:

Preudoword Decoding
Total Reading
Basic Reading
Mathematics
Math Problem Solving
Word Reading
Oral Reading Fluency
Spelling

Average Testing Areas:
Reading Comprehension and Fluency
Written Expression
Math Fluency
Early Reading Skills
Reading Comprehension
Alphabet Writing Fluency
Sentence Composition
Math Fluency- Addition


Greg, Dad

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

I only throw autism in the title so often for search engine optimization purposes. They essentially make you do it in order to be found on Google. Anyway, after two additional basketball practices, things are going much better for Curtis.
In his second week, he anticipated that the team was going to huddle up after warm-ups and was able to transition into the group. He participated in a lay-up line and worked on dribbling skills with only occasional frustrations. He was distracted but participating. We'll take that.
In week 3, he was even more comfortable and willing to participate in drills and exercises. He isn't crazy about actual games situations just yet. The flow of the game, who he is supposed to guard, the fact that you can only shoot on one of the hoops, etc. are all concepts that escape him right now, but he's far from the only second grader in that boat.
In hindsight, I realize it would have been good to have a conversation with the coach before that first practice. I'm sure he had at least a rough idea of the sequence the practice would follow and me and his mom could have prepped Curtis better for the practice. For all he knew, basketball practice was going to be like when him and dad play. Especially since I actually call what we do basketball practice.
In hindsight, Curtis was surprised when he had to go from shooting warm-ups to sitting in a circle. He wasn't ready for that and wasn't able to recover from it that first week. But I'm happy to see and report that he's doing a lot better since and we're seeing an obvious building block to doing similar activities like this with his friends in the future. Also in hindsight, his mom had a great idea getting him into this now. I didn't think he was ready but if everything with autism is about hitting it early, then why should this be any different? Can't wait to laugh once these games get going. We'll see how well this defense tactic (pictured below) works out once there is a tip-off .


Greg, Dad

I was recently reminded of one of my favorite autism success stories involving a basketball team manager turned three point machine. Jason McElwain made national headlines in 2006 after his basketball debut during his senior year of high school."J-Mac", who has high-functioning autism, had a passion for basketball but hadn't even worn a uniform until the teams last game of his senior year. His coach intended to give him the experience of wearing a jersey and sitting on the bench with his friends and teammates before the season wrapped for the year. What happened next is still hard to believe. In J-Mac's word, he got "hotter than a pistol".

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