Helping Curtis to build his internal independence and motivation is a goal that is pretty crucial at this point in his education and home life. With the transition into 3rd grade right around the corner and the numerous team meetings (IEP, triannuals, etc.) that we've have had recently, the plan is largely in place. My goal is to create a smooth 3rd grade year and to boost Curt's internal pride and motivation separate from his support.

In the large picture - Curtis has come a very long way from the scared, timid boy whom I met at Easter Seals three years ago and who was getting 2:1 support. He use to bolt during all transitions, he did very little socializing and if left to his own devices, he would connect snap cubes for hours or write endless numbers on top of numbers. His school work was unreadable and done with little care. Sometimes I forget about this and get very future focused but it's worth revisiting as it paints a large, powerful picture of what support and clear goals can do for a student like Curtis.

As mentioned above, a current goal is to boost his independence and internal motivation - i.e. get Curtis to do what's expected with few reminders. Tools used include a system I call "two before me" where he needs to ask at least two other people (peers or his teacher) questions about school related issues/academics before he is able to ask me. He also has cue cards for five certain blocks in the school day where I noticed I was repeating a lot of directions. Now he has a card in front of him with the expectations so my voice can be omitted and he can work to figure things out on his own.

However,  even with all these tools and goals in place - bits of Curtis's struggles still surface daily. This morning for instance he had his cue card in place, he had a friend working beside him and I gave him a reminder of what was expected (completing three math boxes as his morning job - done every morning). I had to run out of the room for a minute to grab a photo copy and when I got back nothing was completed that wasn't completed before I left. When I noticed this and checked in with him as to why he had not done what was expected his response was, "I got stuck and didn't know what to do, so I drew you a maze - see?" Comments like this do remind me of how much work is still ahead both 1:1, among the class and internally for himself but the tools and goals still will guide the way and he will make large jumps, as he always does.

Caron, 1:1 School Support

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

_Walking through the door in the morning is often the hardest part of the entire school day for Curtis. I see him walk up to the building with a look of fear on his face that he often masks with a smirk as he relives a funny story or rethinks a funny joke. This is how Curtis registers and/or prepares for the transition into another "world" -  he dips into a coping skill that many of us use all the time; covering up fear with confidence and humor. This balance - or his attempt to balance - between the two extreme emotions can be a lot to handle first thing in the morning. It usually takes us 10 - 20 minutes to ease out of his transitional survival mode and into a calm and happy school day.

However, within those 10 - 20 minutes I get the most "road blocks" thrown my way, the most questions asked, the most attitude on his sleeve, and the most anxiety centered behaviors demonstrated. The transition out of school and into his home life is pretty similar.  I prepare for this transition on my end the same way as I prepare for the morning, keeping everything predictable and timely.

Every now and then, based on his mood, we will exit out of a different door to alter any negative "exit" habits he may have formed and allow some spontaneity if it eases the transition. For the most part, he likes these two transitions to be predictable and down to the minute. I very rarely get a "goodbye" once I open the school and the two worlds (school and home) come smashing together. If I want a goodbye and/or an exit debrief - I have to do that in a very sneaky way without him even knowing we just said "goodbye". He has never been a fan of saying goodbye to his friends or any of his other teachers since he started coming to school three years ago. I think he musters through the school day with all sorts of social etiquette strength (that does not come natural for him) and survival energy (that takes a lot out of him) so once 3:05 hits - he is tapped and he needs to exit in his own way.

I dont take any of his transitional moods personally. He is a kid that does not like pressure and/or emotions and more often than not those attributes are present in any transition. When people are transitioning into a new event they often say hello, goodbye, how are you - questions are asked, energy is shifting and different expectations are present. Curtis has a lot he is trying to register in a short time and the best thing I can offer is my patience and thick skin. I do believe though that it is as important to pay close attention to these transitional moments and to acknowledge what a child needs during the transitions as much as during the activities or events that tend to follow a transition. The transitions only last a few minutes, but for Curtis, I am quite certain they are the longest few minutes in any day.

Caron, 1:1 School Support

Getting Curtis to school in the morning isn't my easiest part of the day. Typically, it involves ending an activity he likes, such as playing "Monkeyquest" online or watching a cartoon, then getting him to participate in putting on his clothes, gathering everything he needs for school, and getting out the door. He doesn't do much of this willingly and usually wants to argue about why he can't bring his batcave or some other toy or electronic to school. Curtis always pushes the clock and we get out the door three or four minutes after our planned exit time. He always asks if I'm mad if we're late, if it's okay if we're late, what will happen if we're late. I reassure him each time that everything is fine.

I think I've written on this before but I always keep the walk to school as light as possible. I won't bring up a topic that will get him thinking too much or make him nervous. I understand how hard the transition into school is for him, or at least my perception of how hard it is, and do what I can to get him to the door happy and ready to take on the day. There is something that happens as he approaches the door however. Generally, there are kids running by us screaming, yelling, laughing, and Curtis gets that "oh shit" look like he doesn't want to or can't deal with it. But he gets in there and takes on the day despite the uncertainty and complications that come with integrating with neurotypicals. I always walk away from the school worried about him, but more inspired than worried, because nothing I have to do during the day is as difficult as what he weathers every time he goes to school.

Greg, Dad

Having a high functioning child with autism at Christmas time is a great thing. At least it is with our kid. He asks for very little at Christmas and is genuinely appreciative of everything he receives, right down to the candy in his stocking. By contrast, his cousin wants top of the line everything with a list that sums to multiple hundreds of dollars. Not that either boy serves as a group representative but still, its a contrast that has played itself out repeatedly to this point. Less is typically just fine by Curt.

Curtis asks for little, believes in Santa Claus and leaves out cookies, carrots and reindeer food. He still asks funny and interesting questions like:

"What is Santa's birthday?"
"Does Santa know Jesus?"


Without the benefit of Nickelodeon, Curtis might be have been at a loss for a Christmas list in 2011. He is a predictable slave to advertising and this year asked for an easy-bake oven, an Orbeez soothing spa, and a T-Pain microphone. Not necessarily the typical requests of a soon to be 8 year old boy but all products were heavily advertised on Nickelodeon during favorites Spongebob, iCarly, and Victorious. He also asked for a Batman Castle and a couple other small items but his total wish list was about a hundred dollars. Peanuts compared to most kids. So far, his favorite present is the Razor Scooter. The gift that presented the biggest immediate challenge to him.

This past summer when we were shooting hoops, Curtis' friend from school showed up at the playground with his dad and a Razor Scooter. Curt was very eager to try to the scooter but could not ride it very well. He wasn't quite getting how to coast like his friend was capable of, or the speed, or the confidence. Instead, when Curtis tried the Razor, he had his leg swung out wide and was doing very short steps preventing him from gaining any speed. When he did speed up, he would panic and jump off. He quickly got frustrated and tuned out any instruction.
Curtis is often quick to get frustrated when he does not grasp an activity that his friends seem to do with ease. He has a strong desire to be able to do what the other kids can do and gets frustrated when he can't do the activity right away. As his parents, we try to help him through as many of these obstacles as possible. So, we also bought him a Razor Scooter for Christmas.
The scooter became an instant X-mas day favorite and we brought it over to a playground that morning. He initially rode the scooter with the same difficulty he had shown over the summer. I explained to him he needed to practice.
Curtis has a difficult time with the concept of practice, instead preferring concrete goals. He would go to the basketball hoop and back in 30 seconds, or try to go all the way around his school in 4 minutes. He was open to any timed activity. To him there was a goal to accomplish instead of just practicing to ride, an activity he otherwise finds pointless.
After 4 days of riding he is really starting to get it. Using his brake, coasting, and gaining confidence in his riding ability. As his parents, its gratifying every time he conquers one of these obstacles that that he feels separates him from the other kids. Conquering something like a Razor Scooter, a bike, or a homework assignment gives Curtis the confidence to feel like he belongs with his peers. We understand that its a consistent fostering of this confidence that will allow him to be successful and sure that he belongs among his peers. As usual, we're just proud of him for plugging away at an obstacle that was giving him fits and refusing to give up.

Greg, Dad

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

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

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

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


Greg, Dad

When Curtis turned one, everybody told me I'd want another baby soon.  When Curtis turned two, the same people seemed perplexed that I didn't miss holding a newborn.  By the time he turned three, they realized that we might just be a one kid family, and by four, people stopped bringing it up.  It was around the time he turned six that I started struggling with the idea that I would likely only have one child, not because I only wanted one, but because I can't imagine throwing a baby into our mix, especially considering the huge likelihood that child would also have autism.  Until about a year ago, I was content being a one child family, but then I started to doubt that choice.  Perhaps as Curtis grows older and easier to care for, I am forgetting the days of constant work and worry as we tried to keep him from running into traffic or teach him how to speak.  It seems like forever ago we couldn't put a drink on a table because he'd dump it on the floor and we couldn't bring him in a grocery store because he'd run at full speed until he found a shelf he felt like clearing off.  We're moving past the physical difficulties into the emotional ones as he tries to adapt to a socially and emotionally demanding experience at school, so I'm not as exhausted from chasing him all day long.

Part of my baby itch comes from watching our friends have their second and third children.  We were the first in our social circle to have a child, so having just one was the standard of the group.  Since then, everyone has had their first typically developing child who learns to talk and listen and use the potty effortlessly and so they go on to have a second child who develops the same way.  It is very hard on me emotionally to know so much more goes into us considering a second child.  Can I give Curtis what he needs if I have to tend to another child?  If that child is typically developing, will he/she resent the attention they sacrifice because of Curtis' needs?  And what if we have another child on the spectrum who isn't high functioning like Curtis?  Could I live with myself knowing that we took such a huge risk and had a child who was low functioning and never learned to speak or use a fork or use the bathroom?  If we didn't know the risk, it would be one thing, but because we know we are 25% likely to have another boy on the spectrum, we might be fools if we roll the dice on this one.

The other thing I lose sleep over is who will take care of Curtis when we are gone?  I spend countless hours securing a safe and meaningful life for Curtis.  I am constantly checking up at school, making sure he has the right insurance, having meetings and filling out paperwork to keep his in home support going, and teaching him the skills he needs to get by in a very complex and confusing world.  I'm terrified that he will get devoured by the system when we're gone.  So if we could have the guarantee that our future kids would be neurotypical, would it be wrong to have more partly for the purpose of looking out for Curtis?  It is kind of a demented notion in some ways, but so practical in others.

Greg is pretty dead set on keeping our kid count to one, so sometimes I feel like I'm struggling alone, not because he doesn't care or listen, but because he doesn't experience the same emotions as I do regarding this issue.  All I can really do is keep counting our blessings and thinking of all the awesome things we see in Curtis that our friends might not get to see in their kids.  I feel lucky to have celebrated every minute detail of Curtis' development because it all took so much work, but I will always wonder what it is like to not break into tears because your child points to a bird at 3 years old, and to not worry about who will look out for him 50 years from now when I'm gone.  I will always think, "what if we had another and everything turned out ok" and "what if  we had another and it all went horribly wrong?"  These are questions I will likely never know the answers to, so we'll keep truckin' and making the best of our life as a family of three.  And I will continue to smother Curtis with love until he inevitably pushes me away sometime around sixth grade.

Laura, Mom

At age 4, Curtis could no more understand the concept of Halloween as he could understand why someone carved a face into this pumpkin. He would not even hear of the explanation for Halloween and needed to be bribed to dress up. Even then his preference was to stay home and peek around the corner when the doorbell rang as opposed to venturing out into the weirdness. Curtis likes routine and order and to know what is coming next. I know, who wouldn't like to know what's coming next? He is put off by disruptions in his routine and often refuses to participate in non-recurring activities. Again here we pick our battles.

Last week there was a Field Day at Curtis' school. Last year we skipped the activity altogether once gauging his reaction to what a field day entails. A constant change of activities with screaming kids and rules he doesn't understand. More or less his worst nightmare. We accepted that while we like him to be challenged, this wasn't the time and it was all a little too much. When field day arrived this year he agreed to check it out and see how it went. He fought through the early part of the day but was frustrated at trying to keep up with the games which had rules that don't make a lot of sense, like egg tosses. His trusted support person brought him back inside for a bit to exercise his brain with math several grade levels in advance of the first. He aced the math to gain his confidence and then joined his friends for the real challenge, surviving field day.

Greg, Dad