Curtis and I were watching the news one morning less than a couple weeks ago when a familiar story started. A Maine pharmacy had been robbed for the umpteenth time this year by someone in search of opiates. Curtis listened intently to the story and I expected the same puzzled questions he has when he catches an episode of COPS. Instead, once the news anchor introduced this picture on the screen all Curtis had to say was

"Oh my God the man is stealing that blanket."



Greg, Dad

_Rippin'
Our apartment is as quiet as it can ever be with two boys living here when from over where Alex sits I hear the soft sound of ripping. “Alex cut it out!”  

Alex, who is 13 and PDD-NOS, picks a few threads at the hem, pulling them off and letting them flutter through his fingers. Soon he turns the threads into thin strips that curl at their width into ropes of purple, orange, yellow, black. Gone then are shirts from Old Navy, past activities, camps. Some of these shirts he loved. It didn’t matter.  

Alex has also been ripping Ned’s T shirts, which has done wonders for filling up our bag of kitchen rags but Ned is pissed. “Oh my God, Alex, stop that! He’s ripping every T shirt I have!” We’ve hidden Ned’s shirts from the Intrepid museum and his summer camp. Maybe that will help this wave of destruction fueled by autism.  

“I have no idea why he’s doing this,” says Alex’s teacher, who does add that she thinks it might have something to do with the sensation Alex gets through his fingertips at the ripping cloth. It is kind of a cool feeling, but he winds up looking at worst like a castaway, at best like an Oklahoma Sooners linebacker. 

Jill goes online to a local autism group. “Anyone familiar with this behavior?” she wrote. “Alex (almost 13) has begun ripping T shirts. He usually starts at the bottom. It used to be if a T shirt was a little old or had a hole or loose thread he'd start there, but now it’s been newer T shirts. Is this a sensory thing? Related to puberty?”  

Replies one group member: “It’s an OCD/anxiety situation. He should be seen by a nuero-developmental pediatrician. My son’s similar behaviors were greatly reduced by Klonopin, an anti-anxiety treatment. Another approach that might work and has no failure cost is to go to a thrift store and buy a huge stack of T shirts for a few bucks. Tell him it’s okay to tear those shirts all he wants. At least it will stop confrontations and has a good shot at burning out this particular OCD. After he’s had it for a few days, interrupt him doing something else he likes and insist it is time to tear T-shirts.”  

The thrift shop idea I jump on, paying a couple bucks apiece for a bright green NYC tourism shirt, a faded old blue job that says CAPE COD, and a tie-dyed T. Only the tie-dyed has so far begun its trip to the rag bag. Then his teacher sends me: “Today I sat down with Alex and we wrote a social story about not ripping his T shirts. It seemed to have somewhat of a positive effect to the behavior. Every time Alex tried to rip or play with his shirt, I would say, ‘Alex, hands down.’ If that did not work, we read his social story together and had him show me hands down at his side or on his lap. I made two copies of the social story, one for school and one for you to keep at home …”  

Seems like a cheap failure cost, but if ripping holds to much of his behavior borne of autism, we’ll just get Alex’s hands down when he’ll be on to something else.


Jeff Stimpson is a native of Bangor, Maine, and lives in New York with his wife Jill and two sons. He is the author of Alex: The Fathering of a Preemie and Alex the Boy: Episodes From a Family’s Life With Autism (both available on Amazon). He maintains a blog about his family at jeffslife.tripod.com/alextheboy, and is a frequent contributor to various sites and publications on special-needs parenting, such asAutism-Asperger’s Digest, Autism Spectrum News, the Lostandtired blog, The Autism Society news blog, and An Anthology of Disability Literature (available on Amazon). He is on LinkedIn under “Jeff Stimpson” and Twitter under “Jeffslife.”

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

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

_Finding moments to encourage independence has proven to be very crucial in the creation of a good day for Curtis. This fall Curtis began to regress a bit in his independence. He would voice that he did not feel safe in his environment without me there either while I was taking a lunch break, using the bathroom or running down the hall to get some water. He was disinterested in solo bathroom trips, water breaks and walks in the hall.
This slip in his independence did not worry me too much. I knew that a similar story was playing out at home and I have two years of independent moments I could use to remind him of his progress. Considering he had a new room, a new teacher, new friends around him, a new hallway, a new schedule and a new set of expectations - he was taking on quite a bit and if a little regression in his independence was the result, I was going to be patient with that.
However, by mid fall his lack of independence started to affect his everyday mood. By nature, Curtis likes to do many things solo so this new need for someone to always be right by his side was starting to internally upset him - I could tell. Curtis, like most of us, wants to be independent. He is at his best at school day when he is feeling proud and self-sufficient - with a plan in place, but room for spontaneity.
I felt I needed to push him back toward self directed behavior - the days were getting too clingy and too emotional for this poor kid. I started the process with little steps (having him walk four tiles ahead of me in the hall, taking a short cut to the bathroom and myself taking the longer way, sitting across the circle from him at morning meeting instead of right next to him, etc). For all of these beginner steps I was there with him, but with some distance. Once he adapted well to those steps, I re- introduced (much like I did for him in kindergarten) the idea of taking a peer to the bathroom with him, instead of myself. Always a "safe peer", but that way it was social and it was without me present.
He was hesitant to do this - as I was no longer in the actual picture but he is (currently) slowly warming up to this idea. My lunch breaks are front-loaded every day on a sticky note on his desk (what's expected, when, the times I will be gone, who he can look towards for help etc). He fights my lunch breaks every day but, again, this is even a small step in increasing his desired behavioral goal of independence. In any given day, Curtis has a lot of support from people who would do anything for him, with him and because of him - however I am finding that little injection of solo "adventures" and independent tasks are equally as beneficial for him in getting to a place of producivity (socially or academically). When Curtis feels independent - he glows with pride and happiness. That is a sight that those who work with him are constantly seeking.

Caron, 1:1 School Support

Joining a team sport is a huge step for a child with autism, let alone one just in the second grade. Curtis was never more than lukewarm on the idea, but knowing he had a couple of friends who would be playing basketball helped to make him feel better about joining the team. He was at least curious and that was a start.

As his parents, Laura and I weighed potential pros and cons and figured it was worth a shot. Nothing teaches like experience, and it had been some time since we had tried something like this. Anyway, pictured is the view Curtis had for most of his first basketball practice last Wednesday.

The practice started off great. Curtis fit right in during warmups, sinking a good percentage of his baskets, counting them, and playing among friends. However, the wheels came off rather quickly when warm-ups were done and the kids were to sit in a circle at half court to discuss the season, the rules, team name, etc. Curtis just wanted to shoot baskets. The way he plays basketball with his dad. When I put the ball he was using aside so his playing wouldn't distract the team, he followed me into the supply closet and watched much of the practice from there with me and his mom.

The first practice proved to be an enormous challenge and there were a number of factors working against its success. These included the fact that this was an out of the norm after school activity, bright gym lights, multiple bouncing balls, new rules, expectations of team work, the gym is hot, all leading to sensory overload for the little man. He was clearly overwhelmed by the situation, never really understanding why he couldn't just stand under the hoop and shoot the whole time. He just wanted to go home. His mom took him out in the hall for breaks but insisted we stay for the entire practice, even if it was just so Curtis could watch his friends play and get a sense of how these practices would go. He stayed the whole time, and for day one, that was good enough.

The plan at this point is to keep going every week and try to expand his participation slowly. He has another practice on Wednesday, and the goal will be to get him to participate in at least one drill or meeting and again stay for the whole practice. We plan to take it slow, and not make Curtis do anything he isn't comfortable doing, at the same time anticipating that his own curiosity and drive will bring him to want to participate more as the season develops. My initial thought was that he simply isn't ready for this but his mom reminded me that swimming started much the same way. It began with hesitancy, confusion, and some of the outright defiance we've come to know so well as parents of an autistic child. But now he is doing laps in a pool, and maybe soon he'll be passing a ball to a teammate.

The fact that he is willing to give the basketball team a shot is a success on its own. And hopefully as he continues to go to these practices, the overwhelming feeling he felt that first week will subside and he'll eventually walk away from one of these practices saying "that wasn't such a big deal". Regardless of what happens at his second practice tomorrow, he'll get hugs from his parents when its done and we'll make sure he knows we're proud of him.

Greg, Dad

At times, shopping alongside a child that has autism is the same as shopping with a typically developing child. Curtis often wants any toy he has seen advertised on TV with little regard as to what his parents might have to fork over to get it. At other times, it's nothing like shopping with a typical kid. Here's how my trip to GameStop went with Curtis this past Saturday as we shopped for some used ps2 games.
For the non-"gamers", a ps2 is a great system to have. No one cares about it anymore, so stores like GameStop often have a bin set up with hundreds of used games in sleeves selling for $1-$5. On Saturday, we hit the mall to return a couple games we no longer needed and see what the used bin had to offer for games new to us. At least that was the plan we started with. Curtis began flipping through the games and noticed a copy of "Spongebob The Movie" game, a game he is 86% completed with at home according to his most recent memory card save. He was so happy to see another copy of the game he already owned that he couldn't put it down. He also wasn't done yet. This became the start of a mission.
In the time I shopped for 4 used games, Curtis had set aside the following:

5 copies of Spongebob The Movie game
3 copies of Shrek 2 the game
3 copies of Strikeforce Bowling
1 copy of ESPN Baseball (which I own and he has never played)

Each game he already owns, and Strikeforce Bowling in particular,  is a horrible game. Still, Curtis thought it would be a great purchase to get 12 more copies of games we already had at home. Thankfully, he didn't put up much of a fight about not buying the games and hardly even fought the logic as to why we would not be buying them.
He didn't come away with any new games, but he had a great time searching the bin for copies of games he had at home, working the "S" section of the bin over pretty hard. Curtis left the store empty handed and satisfied.
On the way out of the mall, we stopped at Johnny Rockets for some lunch. Any place with chicken nuggets/chicken tenders is fine by him. After we ordered, the waitress/cashier handed Curtis a small coloring book and a package with a red, a blue, and a yellow crayon to which Curtis responded, "Thanks, how come you only gave me primary colors?"

A satisfyingly autistic trip to the mall.

Greg, Dad

_Curtis' Christmas list reads something like this:
Easy Bake Oven
Batman Batcave
Orbeez Soothing Foot Spa
Angry Birds Knock on Wood Game

I always swore when I had kids, I wouldn't "gender" them, but as Curtis has grown older, this issue becomes more and more difficult to address.  As a toddler, I wanted him to play with dolls and trucks, as a preschooler, he was drawn to painting and running...lots and lots of running, and now that he is in 2nd grade, I feel the need to protect him from the attitudes of the other kids.  Curtis wants his nails painted when I'm painting mine, he wants Barbies because his BFF is a girl and she has them, he wanted Skechers bedazzled sneakers in pink and purple for back to school, and now at Christmas his list obviously includes items marketed to little girls.  He really doesn't care what the other kids think.  The nail polish looks pretty and the shoes sparkle and he likes to bake, so he wants it all.  And he loves to play Batman with his buddies and roughhouse just like the other boys.  Autism allows Curtis the freedom to like Barbies just as much as he likes Batman and he feels no need to explain himself to the world.  He's lucky and I want to honor that part of him as much as I can, but the fact of the matter is, kids are not always accepting.  They can be flat out mean.  And as Curtis struggles to understand how to survive in a complex social world, I feel as though we'd be doing him a disservice by allowing him to show up at school in sparkly pink sneakers and purple nail polish.  It really is a shame, that a kid can't just pick out the shoes he likes and wear them, but this is the society we live in and Curtis needs to learn the "rules" that make no sense at all (like so many other things.)  So for now, I paint his toenails instead of his fingernails, and I'll talk him into the red sneakers instead of the pink ones, but he has a barbie in his box full of action figures and I'm pretty sure Santa will be bringing him the Easy Bake Oven and the Batman Batcave, but as he grows older, I hope to be able to help him be his whole self within the confines of our societal norms.  One thing's for sure, the boy knows he's loved no matter what!

Laura, Mom

_When Curtis started out in public school, the socials workers " extra clothes closet" made no sense to him. Why on earth would he ever wear someone else clothes? Why would anyone for that matter? This thinking is very typical for autistic individuals; what's theirs is theirs and what is not - well, is not. To wear these clothes would have been a big deal.  He had a back up outfit of his own at school for mud slips or accidents and that was all we really could ask for and needed when he was in kindergarten. This week, Curtis had a major fall during recess time in a mud puddle without back-up clothing.

Slowly over the past two years, Curtis has become more accustom to the idea of wearing someone elses clothes, either because of mud stains, some accident, or it being cold outside and needing to wear an extra layer of clothes during recess. This past week he took a fall in a mud puddle and came running up to me, drenched down to his underwear and socks. He had this look on his face that could have either gone one way or another and I quickly gave him a high five and said, "Well, I can tell you were having fun - its no big deal!" He took that comment and agreed with me; averting two potential "big deal" disasters, the fall itself and wearing clothing that didn't belong to him. I told him his mom would put the jeans in the wash that night, and we just need to get you quickly changed so you can finish you game of tag.

Once he was changed clothes he came flying outside ready to talk to his friends about what just happened and was wondering if they could spot the "difference" in his appearance - turning this mishap into a game helped him connect to a concept that once freaked him out. He ran up to his one of his good girl friends and kept inching his leg closer and closer to her trying to show her his new pants in a very sly manner. The clothing change was a huge deal in his mind, I mean, these were someone else's clothes. He was turning something that used to make no sense to him into social talk and it was a small, but huge success and moment of growth for Curtis.

I think its important to share stories like this because coming from someone that works all day long with a child who has autism it is easy to get frustrated with their "quirks" or constant resistance - I sure do. However, these kids are constantly moving in the right direction and sometimes it takes years to notice such leaps, but sometimes it takes just a few days. They come around - they always do with patience, time, love and some "no big deal" attitude."

Caron, 1:1 School Support

MONDAY, MONDAY MONDAY, MONDAY

I FEEL RUSHED, I FEEL OVERWHELMED, I FEEL TIRED.

MONDAY, MONDAY, MONDAY, MONDAY

I FEEL LIKE I WANT TO GO HOME AND PLAY MY SPONGEBOB GAME. I FEEL TIRED AND I FEEL SLOW TODAY!  I'M HAVING A HARD TIME FOLLOWING DIRECTIONS AND THAT'S OKAY. I JUST WANT TO STAY HOME OR DO YOU WANT TO WALK AROUND THE BACK  BAY?

BUT RIGHT NOW I'M AT SCHOOL AND MS.BARBER SAYS I HAVE TO FOLLOW THE RULE AND THAT'S  NOT COOL!  AFTER THIS I'M GONNA GO IN A POOL AND APRIL FOOLS MAKES ME DROOL ON A STOOL.

Curtis, age "7 and 10/12ths"