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Events

In his book “The Tipping Point,” author Malcolm Gladwell discusses the influence that a community can have on individuals and how susceptible people, especially children, are to the communal influences around them.  One of his statements is that no matter what is taught within the walls of a home, outside influences often have a stronger influence on children than our home.

Blue skies this weekend?

Blue skies this weekend?

 

Well, this week I got to spend a couple of hours with a community that has definitely shaped our lives and has left a profound influence on me.  As part of Light It Up Blue in April, Utah Valley University hosts an Autism Conference that culminates with a balloon launch on Saturday. The balloon launch last year was the inaugural event and we were excited to attend this year as well.  Since our decision to mainstream the boys, we’ve really had minimal contact with our Autism Community here and we definitely miss it!

Brave Kid - I stayed five ft away

Brave Kid – I stayed five ft away

 

As soon as we got to the event, we ran into two of the aids that worked with our boys last year at Giant Steps, as well as the former director of a program called The Bridges at Kids on The Move.  Within half an hour we ran into our boys main teacher from last year, the director of Giant Steps, as well as four other teachers / aids who have worked with our boys over the past two years.  The boys were excited by all the activities around them but it was so neat to see them recognize and smile at their teachers.  Twin B and I were in line to get shaved ice and he saw his teacher from last year and actually left the line we were in to run over and say hi to her.  We LOVE the individuals that have dedicated the time, love and energy to autistic individuals and one part of this great Autism Community is definitely compromised of these people.

Helping the Wolverine after knocking him over as part of the "Angry Birds' Game

Helping the Wolverine after knocking him over as part of the “Angry Birds’ Game

 

After we ran into all their teachers and caught up on life and ‘the happenings’ of our twins, we ran into a number of parents and friends we haven’t seen recently.   We are all in different programs of various shapes and sizes and it was nice to catch up and see where other families are at.

Gorgeous with the boys

Gorgeous with the boys

The kids had a blast at the different activities and were so excited to see their balloons launch with hundreds of others . . . . I think each twin let at least two balloons off prematurely but hey, the third time was the charm!

Love this picture

Love this picture

Somewhere in the midst of all this was also a baseball game – perfect timing since my daughter is doing a book report on baseball . . . not sure why she picked that but hey, it works.  I’ll be honest – we have an extremely supportive group of friends and family around us and we are extremely blessed to have them.  However, it is nice to get together with a group of friends who understand the freak-outs, the incessant questions on schedules, the social anxiety and issues.  I am grateful for this community and all they have done for our family.  WE LOVE YOU!

I am so grateful for programs and groups who have activities targeted to special needs children and families.  We ran into “Paul” at a BYU Volleyball Game a few weeks back.  He was one of the boys’ teachers last year and is heavily involved with the Utah Regional Ballet executive board and he mentioned there would be a special pre-open performance for families with special needs children.

photo-6

Thanks Paul! At Utah Regional Ballet’s Performance of Peter Pan

 

I wasn’t sure how the boys would take a ballet performance.  Quite honestly, I think I’ve been to the Nutcracker once ages ago and I don’t remember too much of it.  However, the performance was Peter Pan and since the boys are familiar with the story, we took a chance.

We ended up running into a number of friends there. . . . . DJ from their class showed up and sat with the boys fourth row from stage right in the middle.  I think we were the loudest section.  We also saw a handful of kids from their school, a few other parents we’ve met through different autism functions, and even one of my college friends who I haven’t seen for 7 years was there with her son.

Utah Regional Ballet's Performance of Peter Pan

“Dad – I can see the ropes!” Nevertheless, they thought it was way cool

The boys really enjoyed the performance.  All three boys had Peter Pan hats on and they laughed and cheered.  We had bets going on whether or not the crocodile would be real or not and also, if we’d see Darth Vader or a storm trooper come out.

There were pockets of empty seats throughout the hall and I’m sure that if this becomes a consistent event, those seats will be gone quickly.  I am extremely that we were able to take our kids ~ now I know they will be interested in a show like this .  .  . though we’d need to work on our volume control!

Peter pan by the Utah Regional Ballet Group @ Covey Center Theater

Twin A trying to look cool. . . Twin B smiling big!

Thank you Paul . . . . Thank you to Utah’s Regional Ballet Group . . . . . we appreciate your consideration and hospitality!

My wife and I had the opportunity to attend a screening for a new documentary titled, “Invisible Disabilities: The Problems of Perception,” produced by Jenny Mackenzie that features, among others. Dr. Temple Grandin.  I didn’t know much about the film so I was a little surprised to see a handful of law enforcement officers mingling with the guests who were down at center stage.  I’m glad we got their early since it was a standing room only event!  Great turnout!

Background: There was an incident in our city where two special needs individuals were with their caregiver and were going to a public restroom.  A police officer saw them, mistook it for criminal behavior, and a ‘use of force’ incident unfortunately happened.

What happened next truly shows you the character of these individuals and this city.  On hearing about the incident, the Chief of Police, Chief Burbank obviously met with the officer involved, but he also met with the individuals and families of the autistic individuals.  Instead of both ‘sides’ viewing themselves as being on opposing sides in the matter, they decided to fix the problem and put their emotions into a project that would, hopefully, help avoid future situations.

Image courtesy of Jenny Mackenzie Films - plz click image to visit her website

Image courtesy of Jenny Mackenzie Films – plz click image to visit her website

Thus, the idea and team for the documentary was formed.  The viewing was followed by a panel that included Dr. Temple Grandin and Chief Burbank.

I was very impressed with Chief Burbank.  He seemed like a very humble and intuitive individual, not what my first impression of a police chief would be (pictured a loud Type A personality) – my bad.  He discussed how this incident and documentary have led him to share the incident and training resources with not only his department, but 70 of the largest police forces in Canada / US.  That’s impressive!

This was my first experience seeing Dr. Grandin and I was very impressed by her resourcefulness and entire presence.  It was easy to understand how she is a great spokesperson and representative of the ASD Community.

Panel Members including Dr. Temple Grandin and Chief Burbank

Panel Members including Dr. Temple Grandin and Chief Burbank

I think the documentary will be a good training tool for groups (law enforcement, educators, public servants, etc) that deal frequently with a wide range of people.  However, I was surprised by  a few things.  First, I’ve watched a number of autistic videos and honestly, have felt more connection and emotion in most of those videos versus this documentary.  While I do feel that this documentary will serve a great purpose, I was surprised, especially since our emotions are close to the surface when it comes to autism, that my wife and I had no emotional response to the documentary.

Second, maybe it’s just because I have daily encounters with people on the spectrum, but I think that if you spent a minute with all three individuals featured in the movie, most people would be able to tell that they have a special need.  I think when I see people like Clay Marzo or some of the ASD adults who speak on autism panels that I’ve been too, these individuals could almost get by with nobody knowing they are on the spectrum. . . . it would’ve been interesting to have an interview from someone who, on most days, nobody would consider has special needs.  While Dr. Grandin fits that description she was introduced as an expert in the documentary.

I’m not devaluing the documentary with that last remark but more, sharing my alarm that the police officer in this incident couldn’t recognize that these people with arms flapping or other physical challenges, were not criminals but individuals that, more than anything, needed The Law’s help and protection.  That shocked me . . . . but then again, my wife and I have been dealing with this for years and I need to realize that others haven’t had the experience we had . . . including the office in the incident.

My Goal: Help them live the life they were meant to live!  Love my three kiddos

Check out my wife and kids in a local news feature on autism. Click the picture!

Chief Burbank mentioned a number of times that law enforcement needs to provide ‘equal protection’ to ALL individuals and how this instance helped him realize that there was further training and resources needed to help police deal with special needs individuals.  It’s imperative to help others understand that physical contact or stress situations cause more of these ‘symptoms’ to come out and they should never mistake those for an aggressive individual.  If an individual needs more time to process something and someone is yelling at them, it’s just a vicious cycle that escalates into a situation like the one these individuals encountered.

Glad I got to see the documentary and hope that it does well and serves it’s intended purpose.  Great to see how a group of individuals turned a very high stress and emotional confrontation into an avenue of change . . . . . remarkable!  Check out our claim to fame – my wife and kids on a local news broadcast on autism.

I’m typing this as I listen to my wife play through the Les Miserables playlist (so looking forward to that movie).  We both play piano (actually, our first few dates were at the piano labs during our college years) and we both teach piano now.  She usually plays at night as the kids are going to bed.  There are some nights I’ll lie down with my boys and listen to her play . . . . . . . makes for a great evening.  She’s pretty excited for the new Les Miserables movie . . . . I think Hugh Jackman might be a small part of the reason. . . . .

While we are both excited for the movie, my wife may have some secondary motives to seeing it! Image from google.com

One of our most recent escapades was to see Jon Schmidt and The Piano Guys at an outdoor concert at Thanksgiving Point DURING A LIGHTNING STORM!  I was actually really hoping they’d cancel the concert before we left the house.  We came prepared though, we wore layers and sat under a tarp as the rain and lightning would break off and on during the concert.

Gorgeous and I at the Piano Guys Concert. Awesome night!

I don’t think anyone left the concert and when all was said and done, it was an AWESOME concert and the weather added to the experience.  A lot of families were in attendance and the kids left looking like they had left the best ride at Disneyland~ it’ll be one of those family experiences they talk about for years.  Seriously, how many people are going to be able to say they sat in a spectacular venue watching a great group in a lightning storm?

They were featured on the Today show a little while back.  This link, as well as the picture below, will take you to their most popular video . . . .pretty creative.  I personally LOVE their rendition of Over the Rainbow since it was filmed in HI at placed my wife and I both know.

Piano Guys

Check out this video ~ they are awesome! (photo from Piano Guys Website)

Now, how to really share our love for music with the kids?  Well, a music concert for special needs individuals can get tricky since you’ve got sensory issues to work with + the fact that if your kids are like mine, a two hour concert may get a little long for them.  That is why the Utah Symphony Concert is such a great opportunity.

Utah Symphony and Orchestra - picture courtesy of their webpage

The Utah Symphony Orchestra puts on a Special Needs Concert once a year for families like ours and this will be our third year in attendance.  It is fantastic ~ the concert usually last an hour and we don’t need to worry about our kids ‘distracting’ from the experience of others.  In fact, one year Twin A was so tuned into the concert that he was imitating the conductor and having the time of his life.  Meanwhile, Twin B looks over at me and says “Daddy, I’m bored” then starts to fake snore through the piece.  He had our half of our section laughing.

At the Utah Symphony Concert at Capital City Theater

I posted about our experience last year and honestly, can’t tell you how appreciative I am of this opportunity.  My wife and I love music. . . .it’s a big part of our life. . . . . and we are so grateful that there is a venue and program specifically made for us to share that with our children.  In fact, after our experience two years ago, we bought tickets to Peter Pan and the kids LOVED it.  I don’t think we would’ve taken that chance had it not been for this concert.

They take turns playing for Family Night.

If you are in Utah, please see the main page and RSVP for the event!  Looking forward to seeing you there!

CAST YOUR VOTE!  Chase Bank is sponsoring the American Giving Awards and one of the charities on the list is Surfer’s Healing.  Based in San Juan Capistrano and founded by a couple with an autistic son, Surfer’s Healing’s mission is to provide autistic individuals with an opportunity to connect with the ocean through surfing.

VOTE NOW!  HELP A GREAT CAUSE! Pic from Surfer's Healing

VOTE NOW! HELP A GREAT CAUSE! Pic from Surfer’s Healing

I’ve mentioned how much I love the ocean in previous posts and how well my boys did with their visit back home to Maui.

Surfing @ Launiupoko / It's a Wunderful Life

Taking Twin A out on the surfboard

The idea that autistic individuals find the ocean therapeutic is one that I support and there are many cool stories about this.  There was a great documentary sponsored by Patagonia called “Come Hell or High Water” that talks about the evolution of bodysurfing, it’s raw and deep connection with the ocean and nature, and stories of autistic kids and their connection to the water.  Another individual I’ve mentioned before is Clay Marzo, professional surfer who has asbergers.

Anyway, PLEASE VOTE FOR THIS GREAT CHARITY!  Let’s show our support and . . . .ALOHA FRIDAY!  🙂

At Launiupoko, Maui

At Launiupoko, Maui

Wow it’s amazing how busy ‘life’ can be.  I’ve seriously gotten a TON of information from this workshop and our mandatory parent workshops after school.  So, some info from Carol Gray:

The main goal with a social story isn’t to change behavior!  It’s a two-step discord – to provide understanding of the audience in relationship to a situation or skill and/or to identify specific topics and the focus of the story.  A big “AHA” for me was that because an autistic individual ‘sees’ the world differently, it isn’t right to give directions and say, ‘this is how it will be.’  Same as teaching a man to fish versus giving them a fish.  The important idea is to help the individual see a different way of looking at things and helping them understand in a way that best suits them.

There were  a few books that she recommended as ‘good reads’ and here they are:

OK honestly, when I first heard about social stories, I thought, “that’s easy and such a simple concept.”  The concept is very simple yet it is very powerful since autistic individuals think ‘in pictures.’  However, as I listened to the thought process behind every picture in a social story, I realized that there’s so much that you have to consider when writing a story.  Thus, and I can see the logic behind this, it is important to get your social stories from trusted and correct sources – look for a trademark symbol!

A few things to remember: A social story is:

1) in the first or third person – NO SECOND PERSON STATEMENTS

2) Positive and Patient

3) Past, present, or future tense – whichever is most relevant

4) Literally accurate and

5) has an accurate meaning

My wife and I have written short stories for our boys and here are some of the general guidelines that I took from the session.  I’ll be honest, I think I can put together a decent social story for my boys with 80% accuracy.  However, the thought behind the final 20% and the attention to details is where I’d miss things.  Here’s an example.

Example #1: “Directions help students work, learn, and play together.  Directions help to keep students safe too!”

Example #2: “A student may want to do something else.  That student may not follow the directions.  Instead, that student will do what he or she wants to do.  I do that a lot”

In the situation above, the second example is too lengthy and also, has self-depreciating statements.  Most autistic individuals already struggle with self esteem issues so you need to avoid these at all times.

Example #1: There are times when you should listen to adults and follow their directions

Example #2: Sometimes, teachers, or other school staff, tell students what to do.  They give students directions

The first statement assumes that the individual understands what ‘giving directions’ means.  It also gives the individual an ‘out’ with directions by saying that a student ‘should’ follow directions.  You are walking a fine line here because you want the individual to understand the importance of following directions but what happens when it’s an adult that is not a trustworthy source?  A stranger?  AN AUTISTIC INDIVIDUAL WILL TAKE THE DIRECTION LITERALLY.

These are the subtle nuances that I know I would miss!  Thus, I really intend this post as an overview to help with social stories, to recognize good versus mediocre stories, and a push for you to support Carol because I really feel she knows what she is talking about.

So, continuing on with the lesson:

Example #1: There are two parts to a direction.  The first is giving the direction.  Teachers often do that.  The second is following the direction.  That’s a students’ job.

Example #2: I am going to listen to my teacher.  I will follow her directions.  I will do what the school staff tell me to do, too.  It’s my job.

Again, example #2 borders on socially unsafe.  What if the staff member is unsafe?  Or a person posing as a staff member?  Man, there’s so much to think about!

Now, she combined it all to form a social story

“Learning About Directions at School”

Sometimes, students are given directions at school.  A teacher, or other school staff, tell the students what to do.  Directions help students work, learn, and play together.  Directions help keep students safe, too.  There are two parts to a direction.  The first is giving the direction.  Teachers often do that.  The second is following the direction.  That’s the student’s job.  I am learning about directions at school.

This story is a better social story.  The story gives some flexibility about following all directions since some may be unsafe or incorrect.  It also helps the student understand their part in this and what they can do to better ‘own’ this skill.

I’ll do another post on something I really think will help my boys, Comic Strip Conversations.  That’ll be the next post but I hope this gives you a VERY BASIC overview as to the thought process and patterns for a social story.  Let’s be honest, I put an entire day of training into a 800 word post so please realize that there’s more to it than this but I hope this gives you a brief overview of things to think about when creating a social story of your own, or what you need to look for in a ‘proper’ social story.  Again, look for Carol Gray and Trademark Material when looking at things online.

Enjoy the picture ~ preview of some future posts.  🙂

Goblin Valley

Coming Soon

 

I think we need another day to recover from this past week.  Twin A had a TOUGH time getting out of bed this morning.  He kept asking for me to help with getting him dressed but with me on breakfast duty downstairs and still on crutches, getting up and down the stairs is my least favorite activity right now.

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We had a great weekend that I’ll write about later because man, the soccer camp really was awesome.  You can read about the genesis of the soccer camp in my most recent post but once again, thank you to the Red Devils Soccer Club here in Utah -they were fantastic.

Red Devils Soccer UT Camp for Autistic Kids 2

Shot with Leo and some of the volunteers. Can’t decide if Twin B is angry or is showing us his ‘game face.’ Photo courtesy of Red Devils Soccer SLC

 

It was neat to see over 60 kids on three different fields participating with over 100 participants in light green shirts running around helping the kids.  I appreciated the fact that prior to coming to the camp, the volunteers all got a training of ABA and Autism, followed by a tour of the Carmen B Pingree School for Autistic Kids that’s nearby.

It was amazing to see the ‘range’ of volunteers who came.  Many of the kid volunteers were associated with the Red Devils Club however, there were a number who heard about it from friends and came along as well.  Twin A had two volunteers who were both middle school age girls in the club, while Twin B’s was a freshman at the University of Utah who wanted to volunteer for the clinic – Awesome!  Oh, if any of you had daughters get caught up in the High School Musical craze a few years back, some of these kids will play for the East High Team.  Just some trivia.

Red Devils Soccer UT Camp for Autistic Kids 1

Twin A with one of his volunteer aids. I think he had a little crush on both girls. 

At the same time, Michelle (again – see previous post) and her daughter had many family members that came and helped.  If you went to any registration and asked, “are you with the team?” You’d have a 50% chance they were a parent of one of the players.  On the other hand, many were friends, neighbors, or relatives of Michelle and her daughter.  How fantastic is that?  I was touched to see 100 youth and adult volunteers coming out – not asking anything in return and giving their time for the kids.

Red Devils Soccer UT Camp for Autistic Kids

Twin B with his volunteer. He’s a Pre Med Student at the University of Utah. . . .the ‘other school’ in the UT rivalry. 🙂

In talking with some of the volunteers, I found out that the coaches and parents structured the camp with help from another mom who has an extensive background in ABA.  There were a number of different stations with a specific and simple objective in mind.  The kids also had a reinforcement bag to help motivate them.

Red Devils Soccer UT Camp for Autistic Kids

Twin A ready to break some ankles!

What was also neat was you didn’t worry about your kid being ‘judged’ or not fitting in.  The camp was structured yet flexible enough that each station and activity went as far as the student wanted it to go.  My twins were great at some things and it was fun to watch them dribble and run down the field. . . . then get tired, pick up the ball, and just walk to the sidelines.  Some of the kids just ended up sitting down and rolling the soccer ball back and forth while another boy found a sprinkler puddle and. . . . well. . . . I hope his mom brought a towel and extra set of clothes. It was exactly what most of these kids need. . . and it was awesome to see things specifically geared for them.  A “safe zone” if you will.

Red Devils Soccer Camp for Autistic Kids Salt Lake City Utah

Twin A LOVES his shirt and his new soccer ball – signed by “Leo” – the mascot for Real Salt Lake, our MLS Soccer Team

I just had to bring the previous picture back from the last post – it’s my favorite!  I wish I could personally thank everyone involved – I don’t know if they’ll realize how much this meant to many of us.  Between my knee and other things, I’ve been so self centered recently and worried about ‘my own little world’ and personally, this event really helped me get out of that rut and realize the good that always comes out of doing something for someone else.  I thank the volunteers, organizers, and Red Devils Soccer Club for providing an awesome experience for not only my kids. . . .but a learning one for me.  Mahalo ~