Interstate 100:  Built by Curtis on April 25, 2012.

Curtis has recently started wearing a "calm crown" on his head (he made it, i suggested the idea), a tangible tool to help maintain focus. He puts it on when he needs his body to be in control and to get work done. Because the crown is generally off balance on top of his head - it really does work to keep him feeling balanced and focused so it becomes a challenge to balance the crown and do his school work.  He takes it off during recess and gym, snack and lunch but the crown stays on his head during all work time. This has helped him not "collapse" as much as he had been doing the last few weeks - when he is feeling overwhelmed and essentially quits with a collapse to the ground and insistence that he "can't do it". He loves the crown idea and, while there is no telling how long this particular method will be effective, it has made the past two days go very smoothly.

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

It is now becoming easier to tell when Curtis is overstimulated by an event or an activity in school. During his kindergarten year, overstimulation looked much different - mostly due to his lack of verbal communication. He would often silently muster through a school activity only to later have a very emotional and sensory induced break down that would throw the rest of the school day off. It reached a point where I had to use the hallway and/or the back field as his classroom to keep his mind and body in a working place. He had not yet learned the link between an event, feeling overstimulated and how to register it all together inside the classroom. This a skill most kindergartners struggle with but for Curtis, his lack of ability to communicate was of particular concern and the area I focused on the most.

I remember he use to get very angry at me when we would sit down to do academics or when he was asked to work beyond his desired preference activity. Pulling him away from writing numbers in a row (his fall back choice when he was 5) and transitioning him into academics was very difficult to say the least. His body would be tightly wound up, his engine would be very fast and he would thrown things off my desk or zoom around the classroom trying to get away. I had to introduce a tool to Curtis that gave him both an outlet to release that energy and also have something in place where that release  could be matched with expressive words. The long term desire for this tool was to provide Curtis with the words that went with a feeling so while in school and communicating with teachers - his words could replace what his body was wanting to do (throw anything across the room and run as fast as he could out of the school).

An example of a learning tool that we did together to work on this goal during his kindergarten year was to go outside and toss a weighted ball back and forth to each other with certain dialogue in place. Each time we tossed it - we would shout out something that was making us angry. I would always start this "shouting" conversation so he had something to mirror and use as a role play to keep things appropriate.

"I'm so frustrated that it is Monday!"

I'm so angry that I can not see my family this weekend!

I am so frustrated that it might rain tomorrow!" -

all said with emphasis on the word frustrated.

And he would shout back with, "I'm so frustrated I have to be at school!

I am so frustrated that we do not have Art today!"  - and he would mirror back to me the emphasis on the word frustrated as well.

We would go back and forth for at least ten minutes with whatever was bothering us as we threw a weighted ball. I have written in past posts how the use of Relational Therapy goes hand in hand in my work with Curtis (and with this concept) - exposing ones own feelings, the client (student) naturally exposes their feelings and learns from both the support person and also from themselves through this relational concept. 

This relatively quick activity would help to release some energy, get his body tired, and also pave the road for being able to then (once inside without the weighted ball) have some words to go along with a transition or a moment that is upsetting him. Once his body was tired enough we would go back inside and  try the transition again but this time with certain words (being frustrated or being angry) in the forefront of him mind.

I have an image of Curtis that I will never forget from when he was in kindergarten, shortly after we came back inside from this activity. We were about to transition into a math lesson and he stops in the hallway, crosses his arms and says to me, "I am so frustrated with you Ms Barber! I don't want to do math!" . I praised him  for suppressing the desire to thrown anything on the floor or run out the door, but he did have to finish his math work. However, this time he at least had the sense of pride that comes along with effective communication.

For the remainder of his kindergarten year we did a lot of stomping our feet, tossing balls against the outside wall, ripping up paper and journaling - all while discussing whatever event was overstimulating to him. By the end of his first grade year he was able to put an action with a feeling much more verbally and also without all of the ripping, running, throwing, tossing or moving that went along with it in kindergarten.

Now in second grade, Curtis' vocab has progressed significantly. He uses sentences like, "I feel trapped in this room - I need a break"  or, "The room is always quiet for the first minute of an activity and than things get crazy. Can we get out of here?" or, "I learn better when things are quite - can we go to a different room." When Curtis shares these feelings I honor and listen to them. As much as it was my job to help form those words over the past few years, it is also now my job to listen to him and provide the support he needs now as a second grader whose voice is becoming louder and clearer with each day. As much I like to think that I lead the school day for him - he has started the process of leading the school day for himself. He is beginning to recognize when he is overstimulated and the ways he can cope with it.

Caron, 1:1 School Support

 A little less that two weeks ago I attended my second Southern Maine Autism Conference in as many years. As a parent panel speaker last year, I certainly had more butterflies then than this time around.The conference for this year had more than 500 attendees and a waiting list for those who weren't able to beat others to the registration punch.

The keynote speaker at the conference was Deborah Lipsky, an international author with autism, and her fantastic speech is available here in its entirety. The conference included presentations on supporting individuals with Autism, teaching skills to those with Autism in the home setting, as well as managing meltdowns, building a resource toolbox, use of medications in Autism Spectrum Disorders, crisis prevention and intervention as well as others. Upcoming benefits promoted included the Ride for Autism on 9/15/12 presented by the Autism Society of Maine, the Woodfords Family Services 2nd Annual 5k run/walk for Autism on 5/5/12, and the 10th Annual Walk for Autism on 4/29/12 also presented by the Autism Society of Maine
 
There were also 42 exhibitors on hand and I had the pleasure of speaking to more than a few of them. I spoke at length with Heidi Bowden of the Maine Autism Alliance. A terrific organization located in Augusta, Maine which shares a like-minded philosophy of "celebrating the uniqueness of individuals on the Autism Spectrum and their families." Heidi was nice enough to call me the following day to praise this blog, especially Curt's artwork, and discuss her daughter Addie and the similarities she shares with Curtis. Her daughter draws Powerpuff Girls instead of 1-95. I also spoke with Kevin Sheridan of AspenCross, a provider of financial strategies for families of children with special needs. I'm looking forward to meeting with Kevin, who also has a young son on the spectrum,  and discussing ways of making sure there is something set aside for Curtis' care when his parents are no longer around, should he need that.

I also enjoyed meeting Jeremy Lucas of the Pine Tree Society and discussing "The Kids' Project. The program provides "affordable, high-quality adaptive equipment made with care by talented volunteer woodworkers and upholsterers." The Kids' Project adaptive equipment is comparable to top of the line items at 40-75% below commercial prices with proceeds going to children with special needs and I would advise checking out the amazing wood products they have for sale.  I also spoke to Dr. Christine Maguire from Scarborough Family Chiropractic about the potential benefits to those with autism of seeing a chiropractor. Namely, how the spinal column often needs adjustments for those with autism and many childhood ear infections as well as a lack of proper blood supply to the brain resulting from issues in the spinal column and nervous system. I plan to follow up with Dr. Maguire soon to discuss this more and possibly get Curt in for a visit.

There were also many useful handouts at the conference. LEARNS, the Center for Community Inclusion at UMaine supplied this handout

When Children Push Your Buttons...
Strategies for De-escalating Yourself

1.) Focus on concerns (safety/feelings) rather than pushing for solutions.
2.) Recognize "It's not about ME."
3.) Maintain a curious approach/ "What's really going on here?"
4.) Assume the best possible motive consistent with the facts.
5.) Is the child simply over-tired or stressed? Are you?
6.) Breathe/take a breather.
7.) Try to think like the child-get into his head.
8.) Think in terms of flexibility both for yourself and for the child.
9.) Take a mini-vacation by visualizing a place you'd rather be
10.) Develop some mental scripts

I would recommend checking into any and all of these organizations on their websites or facebook pages and thank these exhibitors and others for sharing their unique services.

Greg, Dad

We got these pictures last night from Curtis' kindergarten and first grade teacher and wanted to share them.  Caron wrote a great post about Curtis embracing World Autism Day and showing his pride and these photos truly capture how brave Curtis was.  In these pictures he is reading to about 17 second graders about Autism.  Since Curtis has been learning about his own autism (we started telling him about it when he was in kindergarten), he has been able to take pride in his unique perspective of the world and how it makes him extraordinary.  Understanding his autism gives Curtis the opportunity to have his own voice in the world, and as he grows older it will be increasingly important for him to advocate for himself and regulate himself.  He has the language now to tell us if his sensory system is disregulated and if he needs squeezes or the lights turned off.  He can tell people that he doesn't like spinning a lot because he has autism and it makes him feel funny.  He understands that not everyone sees things the way he does, so he can learn how to communicate with the neurotypical world in appropriate ways, even if it doesn't come naturally to him.  "Team Curtis" (myself, Greg, Jamie, and Caron, and others) constantly reinforce his ability and openly discuss his autism and how it affects him and others in a very matter of fact way, allowing him to be proud of who he is and understand the part of him that makes interacting with the world challenging.  Hopefully, starting this conversation at such a young age will help Curtis when he becomes the independent, proud, thoughtful, amazing contributor to society he was always meant to be.
Laura, Mom

This past Tuesday, Jamie and I brought Curtis to the dentist.  More importantly, we both escaped without any bruises, scratches, cuts, or bite marks.  Autism and dentistry are not exactly a match made in heaven.  Add a dose of ADHD and a very sensitive gag reflex and you've got a recipe for disaster, which is exactly what we saw on our first several visits to Curtis' dentist.  We actually put off dental visits longer than we should have because of fear:  Fear of how Curtis would react emotionally, fear of how Curtis would react physically, and  fear of how everyone in the office would inevitably stare us down like we were the worst parents in the world while our child darted around the office, kicked tools out of the dentist's hands, hit, kicked, and bit us repeatedly while in a state of complete sensory overload.  So, when Curtis was 4, we finally decided it was time to face our fears and each and every one of them came true.  Curtis kicked or punched anyone who was within kicking and punching distance during the exam, knocked several items off of the counter, and managed to turn off the computer in the exam room.  When it was time to leave, I had to scoop him up and carry him out, kicking, screaming, and biting the whole way.

Fortunately, Curtis' pediatric dentist is patient and experienced with special needs kids.  She didn't put him in the big chair and poke around his mouth withe metal tools on his first several visits, rather she let him sit in my lap and laid his head in hers while she simply brushed, flossed, applied sealant, and gently examined his teeth.  Eventually, we got Curtis to sit in the big chair and watch a movie during his exam with myself and one other person making sure he didn't kick or punch the dentist.  When his dentist started up her own practice 30 minutes from our house, we were glad to make the drive to see her twice a year, as I don't think there's another dentist I'd trust with Curtis' care.

This week, we walked into the dentist's office and Curtis happily played Angry Birds on the iPad in the waiting area.  Then he walked into her office, chatted it up with the hygienist, and checked out where all the doors in the office area led to,  Finally, he hopped in the chair and said, "can I have the headphones for the movie?"  The dentist came in and he followed all of her directions and asked her all kinds of questions.  He even held "Mr. Thirsty" the suction tube in his mouth all by himself.  All of this happened with no intervention at all from myself or Jamie.  We just watched in amazement, remembering the days when a trip to the dentist was a full-contact sport.  When the exam was all done, Curtis said "That didn't take an hour, we're done early!  Should we get Chicken McBites now?"  to which we reminded him that the other half hour used to be spent chasing him around the office and trying not to get a foot to the face.

Laura, Mom

Curtis shined yesterday at school like I have NEVER seen before. I always start the day (mostly holidays and special occasions) with a bit of hesitation and apprehension - never really knowing where the day could lead. However, on his special day, Autism Awareness Day, things unfolded beautifully guided mostly by his pride.

Curtis gave a "service announcement" to his class explaining the importance of April 2nd first thing in the morning.  Then he did a classroom survey wondering who was wearing blue. He sported a T-Shirt that read "Autistic Genius" and he did a four room "Read a Loud Tour" (as he called it) to different grade levels among our school. The read a loud tour took practice, rehearsal and a whole lot of guts for Curtis.

He sat in a big chair in front of four different classrooms and read a book explaining what Autism is, what it looks like in the classroom, what some kids might struggle with, what some kids might succeed on and how a student with Autism might feel in a classroom. Curtis' voice started off shaky during the first Read A Loud but by the fourth, he was a professional. We ended our time in each room where his peers could ask him questions, make connections or give him compliments - every one was quite impressed with his reading skills and his bravery. At the end of the day, as Curtis was leaving the school we had this powerful (but simple) conversation:

"Ms Barber, will I always have Autism?"
"Of course you will - just like you will always have brown hair. Sometimes it might look different and you might get it cut, but its still your hair - its part of you."
"Oh - just like you will always eat too many cookies and have red hair, right?"
"Exactly! No big deal at all!"

Caron, 1:1 School Support

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

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


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

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


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

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

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

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



Greg, Dad