A Family Visit, A Rodeo, and Skill Building

The end of June is almost here and I have no clue how that happened.  Ryan is officially a Fifth Grader now (I promoted him since I am the Teacher and Principal of Curry Curriculum) and Summer Break is here.  The thing is, that we don’t actually do Summer Break here.  The schedule may be more relaxed (no more getting up in the 6 o’clock hour every weekday) but we are still learning and working and of course reading.

As I mentioned in our previous post, Grace had her First Communion almost two weeks ago.

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Right before Mass.
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After Mass.
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Our Beautiful Grace.
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The best family shot that we could get.  I promise that Ryan is not unhappy.
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The party!

She did great and Ryan did great too. Many of our friends and family know that Grace broke her wrist in two places by falling out of her chair at school while attempting to pick up a glue stick that rolled off of her desk.  This was two days before school let out and three days before her Communion.  She was a trooper about it and she is still doing well.  The timing was terrible but we are making it work.  It will make for an interesting Communion story down the road.  She cannot swim for another week as the blue cast will be replaced with a waterproof cast for a few more weeks.

We had a wonderful time with all of our family in town.  In response to having everyone here, Ryan said HAPPY TO HAVE THE LEVINSON CREW HERE.

The next day, my brothers, Dan and Doug, deemed it “Texas Day.” We took everyone who was still in town to the Fort Worth Stockyards.

We have been to the Stockyards on a few occasions before, but we had never been to Pawnee Bill’s Wild West Show.  This was so much fun!  We watched the show, which was about an hour and fifteen minutes, with a short intermission.  Ryan did great.  What was really surprising was that it was loud.  The cowboys (and cowgirls) used whips which they cracked in the air (so loud!) and they shot off guns (so loud too!).  Ryan did not even flinch.  Honestly I was and I still am shocked by this.  A few years ago, we would not have thought that it would be a good idea to take him to something like this.  Between having to sit for a long period of time and the noise, it would have been impossible.  Now, Ryan is an absolute champ.  I am sure that the noise bothered him, but he was having too much fun to care and he wanted to be a part of this, so he had the will to make it work.

The best part–we got to go down and meet the cowboys, cowgirls, and Indian at the end of the show!  Ryan even got to interview one of the cowboys!

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It was an absolutely awesome time and I would highly recommend going to the rodeo there if you haven’t yet!

This is what Ryan had to say about having family in town and Grace’s Communion:

BECAUSE TOO LOVING THE LEVINSON CREW, IT WAS SO MUCH FUN.  THANKING MY UNCLES FOR HANGING OUT WITH ME.  THEY ARE LIKE AMAZING.  I LOVED HAVING CARING BOBBY BECAUSE HE IS SO CUTE.  GRANDMA CHRIS IS SO SPECIAL TO ME.  REALLY LOVE HER.

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At the Cheesecake Factory after stealing a kiss from Grandma Chris.

LIKE TOO HAPPY TO SPEND TIME WITH EVERYONE.  HAPPY TO REALLY THINK THAT I CAN MAKE MY COMMUNION TOO.  HAPPY TO HAVE LIKE TOTALLY A PARTY TOO. CAN’T WAIT UNTIL MY TURN.  GOOD TO REALLY PREACH THAT ALWAYS GOD IS WITH ME.

*****

As I mentioned at the start of this post, we are still working on skills here.  Ryan has been very focused on handwriting and learning to read books independently.  Ryan recently spelled MOSTLY WANT TO READ AS MUCH AS POSSIBLE.  MEANINGFUL TO ME.  READING GIVES REALLY MY IMAGINATION A CHANCE TO TAKE OVER AND I LOVE THAT.  We have been using Soma’s Handbook, Developing the Visual Skill of Reading Using Rapid Prompting Method.  It has been extremely helpful and Ryan has made a lot of progress.  One of the steps is to write out sentences for the student to sight read along with you.  To keep Ryan’s interest and prevent it from seeming too babyish, I came up with a story that involved Ryan going to Camp Half Blood (from Rick Riordan’s books).  He loved it.

Ryan and his best friend Fox wearing matching Camp Half Blood shirts!

We combined several of Ryan’s favorite things to come up with another idea, Grace and Ryan did Percy Jackson Mad Libs!  I know that most people are familiar with Mad Libs, but in case you are not, according to Wikipedia, Mad Libs is a phrasal template word game where one player prompts others for a list of words to substitute for blanks in a story, before reading the – often comical or nonsensical – story aloud. The game is frequently played as a party game or as a pastime.

So we combined Ryan’s love for Percy Jackson, love for doing things with Grace, love for showing off his skills (reading the word term on the page and then using his letter board to tell Grace, and then knowing the different parts of speech and giving a correct word).  Ryan absolutely loved it!  He was rocking back and forth and having difficulty staying in one place because he was so happy.  They did a few rounds and cracked each other up with the silliness of the final results!

The next day, as we were practicing handwriting, Grace wanted to help, so she started giving Ryan words again.  This time, she started with different Greek gods.  She listed Ares, Hermes, and then I listed Zeus and then Apollo.  Ryan spelled these one at a time but when he got to Apollo, he hand wrote NO. DEMIGODS. This meant that he wanted the characters in the Percy Jackson series, not just the Greek Gods.  So Grace and I were more than happy to provide names like Percy, Annabeth, Clarisse, and Nico.  Then, Ryan started to write something on his own, without prompting or dictation (Ryan’s words are in pencil below and I used an app to write out what he wrote):

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Grace and I were jumping up and down and of course they did Mad Libs after that unprompted request!

*****

One of the cool things that we have done so far this summer is to set up the Curry Cave.  It is a fort where we can read, come up with stories, have snacks, and play games.

We decided to write a story, where we began each by taking a turn of coming up with one word of the story to form a sentence.  This was good, but it was taking a while so we changed to each coming up with a sentence.  This is the story that Ryan, Grace, and I came up with:

Long ago, there were fifteen sleeping toads.  Each toad had six really yucky arms to grab trespassers.  These toads once grabbed the leader of the Camp Half-Blood, Mr. D, causing mass destruction and utter panic among the campers.  Once the leader realized who commanded the toads was Zeus, Mr. D scared himself.  Then he thought that Thalia had conspired it with her father.  

(This was written by taking turns, word by word by Ryan, Grace, and me.  The next portion was written sentence by sentence by the three of us.)

But what he didn’t know was that his suggestion wasn’t true.  The toads had acted on their own.  They wanted to move.  The toads were trying to move into Camp Half-Blood.  They were upset that they didn’t have a patron god or goddess of toads.  Mr. D liked the commander so he tried to reason with him.  But Zeus had no idea why Mr. D accused him of commanding the toad monsters.  Zeus was so angry that he was about to use a lightning bolt until Thalia stopped him.  Carefully, she had him lower his lightning bolt.  Then Zeus told him that the toads were probably acting on their own.  Mr. D didn’t believe him.  He confronted really angrily the toad in charge.  Percy, Grover, and Chiron were the only ones in camp who didn’t agree with Mr. D.  The toad in charge admitted that they acted on their own.  Mr. D apologized to Zeus.  The toads promised to move out and never bother Camp Half-Blood again.

The End.

The Curry Cave, where story making magic happens!

Grace

It has been quite a while since we last posted.  If I am being honest, it really has been very busy around here and because Ryan has a difficult time engaging himself in appropriate independent activities, I am interacting with him most of the day.  By the time the evening rolls around, there are plenty of chores and activities to be done before bed.  Excuses aside, thanks for being patient with us.

Ryan wanted to blog about Grace.  Ryan absolutely loves her.  His face lights up when she comes home and he is always happy to do things with her.

Recently, we attended the Liberty Elementary School Carnival and the kids had a great time.  We brought Freckles and Ryan had an opportunity to talk to some of the kids at her school about Freckles.  Bringing Freckles along provides social opportunities and conversation starters for Ryan to interact with other kids.

We also attended the Reading Olympics Ceremony at her school where Ryan came up with the slogan for the poster that we made to cheer on Grace.  A parent of one of Grace’s friends made it a point to send me a message to tell Ryan that she thought that he did great considering how loud and overwhelming it seemed.

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Grace often asks to have conversations with Ryan, where I hold the board and they talk back and forth and ask questions and share stories.  Sometimes the conversation flows, other times I have to initiate it with a topic.  Either way they enjoy the time.

We also read books together and listen to audiobooks in the car.  We are currently listening to The Witches by Roald Dahl, one of Grace’s favorite authors.

In previous posts, we have talked about some board games that we have played as a family.  Most recently, Grace asked to play Rummikub with Ryan.  He was so overcome with emotion that she wanted to play with him that Ryan let it get the best of him (he could not stop crying) and was too overwhelmed to play the game.  This is hard for me as a parent but I chalked it up to a learning experience and that he needs to learn to self regulate.  I could have coddled him, but I really think that he needs to learn this skill and that he can do it.  I ended up finishing the game with Grace.

Grace asked if Ryan would judge a drawing contest between her and me.  Ryan is not able to draw, so he came up with the subject matter and then judged our two pictures.  The three of us sat for 25 minutes, doing two rounds of pictures (both subjects picked by Ryan and both times it was Greek Mythology.)

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Round One.

 

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Round 2

Ryan has been doing so well with family events and outings and sat though Grace’s entire play that she performed two weekends ago.  He did not make much noise at all and told us it was BOUND TO BE GREAT and CARING TO BE IN A PLAY TOO.

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Peg Leg Peggy and her supportive brother.

If any of you fellow RPM parents have any ideas on how to do this, I am all ears.  Ryan and Grace have decided that they are going to write a play together as well.

Ryan also attended the Keller School District Art Show in which Grace’s artwork was displayed.  He wanted to buy her flowers for the event and he picked out the multicolored daisies.

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Grace’s featured artwork was titled “Dinosaur.”

Ryan and I have been working on handwriting during school.  In Soma’s Blue Book, she talks about practicing two letters a day.  We have been doing that everyday and Ryan has been improving and many of his letters are readable now, which in the past, he would just scribble on paper when asked to handwrite on his own.  Grace was watching us one day and she asked if we ever did words instead of letters.  I proceeded to give her “the by the book response” of just doing letters, but she insisted on giving Ryan words to write.  Of course, since this was Grace’s idea, Ryan was all in.  She gave him several words to write.  This is the one that turned out the best.

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Ryan has been attending church with us as well.  His behavior in church has improved in the past year and he is very interested in the Catholic religion.  We are currently reading the book, A Biblical Walk Through the Mass: Understanding What We Say and Do In The Liturgy.  He keeps asking to read more of it.  Grace is making her First Communion in less than two weeks and I am confident that Ryan will want to undertake the journey next year as well.  We are meeting with the pastor of our church in June for Ryan to interview him and to ask him questions.  I am really looking forward to that, so keep a lookout for an upcoming post on it.

Best of all, Grace has written and delivered two lessons to Ryan.  She came up with the subject matter, got the material and came up with her own questions (which she asked me to type up as a lesson plan.)  Her first lesson was on the author Roald Dahl and her second lesson was on the two Egyptian gods, Ra and Osiris.  I did not want to video tape them as I did not want to make either of them nervous, but Randy and I did manage to snap a few pictures.  Grace is doing paper choices with Ryan and trying to work up to the letter boards.  The process is not easy nor is it quick.  There is a learning curve for both of them:  Grace as a teacher delivering the lesson in an engaging fast paced way and presenting the choices in the correct manner and Ryan adapting to a new teacher who is not as experienced.  I am proud of both of them as they are both committed to this and I believe that over the summer, they will try to do lessons together at least weekly.

Grace is Ryan’s biggest advocate.  Her school friends think that Ryan is super smart and awesome because of what she tells them about him.  As I mentioned in our post about our college presentation, Grace was a big hit.  Unbeknownst to me, she actually has portions of the presentation memorized now and she was correcting me and making sure that I did not forget things in the presentation.  Speaking of the presentation, I went to lunch with Angela, the professor of the Child Psychology class, last week and she presented me with an amazing book of feedback and comments from the students in the classroom during our presentation.  I included some of my favorites follow below, with the last page of the book cracking me up and sums up Grace appropriately.

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Grace will often hold Ryan’s hand or watch him for me if need be.  I can honestly say that writing all of this brings a tear to my eye.  I remember that for many years, Ryan seemed indifferent to Grace.  I could not tell whether he had an opinion about her or if he really noticed her.  I know better now, but boy was I wrong for years.  Here is what Ryan had to say about Grace:

BECAUSE DEARLY HAPPY TO HAVE MY SISTER AS MY BEST FRIEND, LIKE THE WORLD TO KNOW DEARLY HOW SPECIAL SHE IS.  DOING HER BEST ALWAYS SEPARATES GRACE FROM THE REST.  HAPPY TO LOVE HER FOR ALL OF TIME.

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After I read the post for Grace’s approval (of course already getting Ryan’s approval) she loved what Ryan said and stated, “I would also say that Ryan is my best friend!”

 

Ryan Goes to College

On Monday, we had the privilege of speaking to a Child Psychology class at Tarrant County College (TCC) in Fort Worth, Texas.  Dr. Angela Williamson had seen us speak at the DFW Autism Conference in February and reached out to me after it.  Ryan loves any chance to educate people about autism, so we gladly accepted the opportunity.

Speaking of educating people, Ryan and I designed business cards to pass out while we are in the community.  There are a lot of instances where people are interested in Ryan and how he learned to communicate and many people ask about Freckles too.  We thought that these would come in handy.

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Back to the presentation–Angela had asked if Grace would be able to come too so that she could give the sibling’s perspective.  My mother-in-law, Margaret (called Granny by the kids) joined us as well.  We arrived at TCC close to 12:15 (my goal was to get there earlier, but that did not happen) and we rushed in to get Ryan to use the restroom and get everything set up in the classroom.  Angela and I had discussed the technology set up there and she sent me pictures so that I knew what to expect.  Of course, we still had an issue.  I began the presentation without the Power Point, and she called for help from the tech department.

Ryan has now participated in this presentation 4 times.  I like to start out by introducing myself and Ryan, and allowing him to say a few words to the audience so that they know how he communicates and that quite possibly they are drawn in by this fascinating method of communication.  Our presentation is about our family’s journey with RPM over the past 3 years and I include videos from Ryan and me working in our first session ever together, a video a few months in progress, a video with Soma, and what an RPM lesson looks like today.

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Granny (Margaret) in the left corner and Stephanie on the right.

 

The students were informed about some of Ryan’s behaviors that might appear during the presentation.  One of them was how he might try and grab their water bottles and cups.  Well, this still happened several times and the students were very gracious about it.  Ryan is so fast and sneaky, it is hard to stop him.

Despite doing the presentation several times now and Ryan wanting to participate, he still tried to escape the room.  Luckily, Angela brought her husband Vaughn, a Dallas firefighter, with her to class and he acted as Ryan’s bouncer/enforcer.  Instead of bouncing people out, he brought Ryan back in each time that he escaped.  Now picture it, Ryan who is now about 85lbs, being carried back in different ways every time he is brought back to the room–first cradle style, then on his back–you get the idea.  Ryan was having so much fun (which is one of the reasons why I think that he continued to try and escape!)

The class was from 12:30-1:50 pm.  The presentation, including the videos, lasted a bit longer than an hour so that left some time at the end for questions.  Angela had given us some questions beforehand for Ryan and me to answer and he answered several of them at home for time purposes, but I left a few unanswered so that he could answer them on the spot.  We did not get to all of the prepared questions.  He also answered some questions that were asked by the students who were in attendance.

Here are some of the questions we answered at home:

Does your family follow a routine on a daily basis? SORT OF.  WE DO SOME OF THE SAME THINGS.  REALLY LIKE ROUTINES.  ROUTINES ARE GOOD.  LIKE TO DO PREDICTABLE THINGS.  (In response to school days and having a list but not necessarily doing it in the same order each day)  TOO LOVING HOW WE DO IT.

What’s your (Ryan) favorite part of your day at school? DEARLY LOVE HOMESCHOOL.  MY FAVORITE PART IS REALLY THE IDEA THAT I HAVE CONTROL, FITTING TOO MUCH COOL STUFF IN MY DAY.

What’s your favorite subject in school? (and one student wanted to let Ryan know that history is her favorite subject) LIKE TO ALWAYS LEARN ABOUT HISTORY.

What is your favorite activity to do? BOOKS ARE MY LIFE.

What strategies do you use to help yourself focus on the task at hand? GOOD TO THINK THAT I AM MOTIVATED TO LEARN SO I DON’T NEED STRATEGIES.

Are you an artist? Do you draw, paint, sculpt, write stories or poetry, or play music?  If so, what inspires you?  MORE LIKE A WRITER.  STORIES ARE FUN TO WRITE.

Do you think you have any different feelings or thoughts than what you think other 10 year old boys have? NO.

Do you like to play any sports? GEARING UP TO TRY SWIMMING.  TOO WISHING.  I AM DEARLY CHALLENGED.  CARING TO WORK ON, CALLING IT, MOTOR MOVEMENT.

He answered these two in class:

What makes you happy? GOOD TO SAY, PREACHING TO THE CHOIR, BUT BEING AN AUTISTIC ADVOCATE.

What is your favorite food? CHICKEN

And a few more by students like:

I know that you visited Wisconsin.  Are you a fan of Aaron Rogers and the Green Bay Packers?  NOT LIKING FOOTBALL AS MUCH AS I PREFER BASEBALL.

Do you have a favorite comic book character and if so, who is it?  YES, CARING TO SAY BATMAN.

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Stephanie and Ryan (and a Freckles photobomb).

And then we had to wrap it up because the class was almost done.  Grace was our helper and passed out our handout and Ryan’s business cards.

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Grace Curry, Autistic Advocate.

And once we were home, Ryan had this to say about the experience.

LIKE TO THANK ANGELA AND VAUGHN FOR ALLOWING US TO REALLY SPEAK.  TOO IMPORTANT TO ME TO DO THESE THINGS.

“Ryan, if you want to do these things, why do you try and escape the room?”

CARING TO SAY TOO HARD TO STAY.

“I think part of the reason might be because it was fun for you to be picked up.”

REALLY LOVE VAUGHN FOR PICKING ME UP.  HE SEEMS SO FUN.  WILL YOU ALLOW ME TO SPEND MORE TIME WITH HIM?

“They did invite us over to see their donkeys and feed them french fries (Vaughn told Grace and Ryan all about this.)  I think that they are really good people and I would love to spend more time with them.”

LIKE AGREE WITH YOU.

“Anything else that you want to say about the experience?”

TOO GOOD TO PREACH ABOUT AUTISM ACCEPTANCE.  MOM I AM WISHING TO DO MORE PRESENTATIONS.

“Is there anything that you would change or like to do differently?”

SOMETHING I WOULD CHANGE IS TO HAVE DAD THERE.

“Why?”

HE IS PART OF THE FAMILY AND HE GIVES A DAD’S PERSPECTIVE.

“Well Ryan if we do these, we do need to bring Dad because we were lucky that Vaughn was there to chase after you.  Dad had to work and next time we will try to schedule it when he can come with us.  Anything else?”

GIVING GRACE ALWAYS A THUMBS UP.  LIKE TOO LOVING GRANNY.  FOUND AN AUTISTIC ADVOCATE IN GRANNY.

HAPPY TO SAY I FOUND A NEW FRIEND IN VAUGHN TOO.

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Ryan and Vaughn.

**Just a quick follow up to say that we received the results from Ryan’s EEG and the results were unremarkable, meaning that the EEG was normal.  This is probably the best case scenario as Ryan won’t have to do an EEG again for a while, he will not need anti-epileptic medication, and we have ruled out one thing that may be interfering with speech.  Now, this was only a 24 hour EEG, so it cannot completely rule out the possibility of seizures, but we don’t suspect that he is having any right now, so we can be pretty sure that this is accurate.**

 

World Autism Awareness Day – Do the Right Thing

Ryan wanted to write a blog post about his thoughts for World Autism Awareness Day which is today, April 2nd. Here is what he had to say:

HARD TO REALLY SAY BUT I WILL TRY.

CARE ENOUGH TO DO ACTIONS MORE THAN JUST WORDS.  TREATMENT OF AUTISTICS NEEDS IMPROVEMENT.

“Ryan, people are going to ask me what you mean by treatment.  Can you elaborate on this?”

TO TREAT ALL PEOPLE WITH THE SAME RESPECT THAT YOU WOULD TREAT YOUR FRIENDS.

“Do you feel that you are treated poorly in society?”

TOO OFTEN YES.  WILLING TO SAY FINDING IT IMPROVED WHEN I WAS ABLE TO USE A LETTER BOARD.

CARING TO SHARE THIS FOR ALL OF MY AUTISTIC FRIENDS WHO CANNOT COMMUNICATE YET.

DON’T DISMISS INTELLIGENCE BECAUSE THEY CAN’T PROVE HOW SMART THEY ARE.

ARE ALL PEOPLE DESERVING A RESPECTFUL LIFE?

I THINK YES.

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Ryan and Freckles at the North Richland Hills Mayor’s 5K Run and Walk on April 1, 2017.

 

 

 

The Library Tour and Meeting the Mayor

This week, we finally got back into the swing of school after having two weeks of other activities that impacted our ability to have “regular days” at school.  Ryan had his EEG two weeks ago (and we should be getting the results soon) and then we had Lenae Crandall of HEED RPM in town for 8 families in the DFW area and she helped Ryan really practice having the letter board flat on the table for RPM lessons.  After that, I went to the HALO RPM Conference, The Diversity of RPM, in Austin, TX last weekend where I met up with some of my friends and other like minded moms to learn more ways to help Ryan and other kids like him.

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I am pictured with Sue Finnes, who came all the way from the UK to present to parents at the conference. She has helped so many families including ours and has dedicated so much of her free time to helping parents get started. It was nice to meet her in person after 3 years of corresponding on Facebook.
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One of my best friends, Lisa, who is Fox’s mom (one of Ryan’s best friends.)
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Ryan and Soma on the big screen as she used one of his sessions to demonstrate how to create the foundation of game skills by using RPM principles.
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Many parents in the audience recognized Ryan and “oohed” and “awwed” when he came up on the screen.

So we were back at it this week.  One of the big take aways I got from the conference was that we needed to work on handwriting more.  Ryan cannot make any legible letters at this point, even after years and years of practicing his name in school.  He is very motivated to handwrite now.  Some of Ryan’s friends have been practicing handwriting and are improving with practice.  I feel like this is kind of like our experience with bike riding.  If you remember, Ryan could not even pedal forward on his own without someone pushing his feet.  Now he can ride independently on a two wheeler.  I believe that if we practice 10 minutes everyday, he will get there with handwriting.

I had called the North Richland Hills Library earlier this week to see if we could get a behind the scenes tour of the library and speak to someone who works at the library.  I spoke with Liz and she helped set up a time to meet her yesterday (Thursday) morning at 9:30 am.  As I was running around trying to get Ryan and Freckles out the door, I missed a phone call from a woman named Alicia at the Mayor’s office.  I had also called the Mayor’s office with the hope of Ryan being able to interview Mayor Oscar Trevino of North Richland Hills, Texas (where we live).  Alicia had called me Wednesday to ensure that I knew that she had received my message and that she would get back to me regarding the mayor’s calendar.  Her message this morning asked if we were available at 11:30 today (Thursday) to meet with Mayor Trevino.  I was both excited and nervous about this as I wasn’t sure if Ryan would have the stamina to do both of these in one day.  When we got to the Library, I asked Ryan in the parking lot if he wanted to meet with the mayor today.  He replied YES, so we decided to go for it. (Meanwhile I am in a ponytail and converse thinking that I am not dressed for meeting the mayor, but this is not about me.)

We got to the library and we were met by Monica, who informed us that Liz was out sick and that Liz asked if she could show us around.  Monica was very kind to us and introduced herself and asked Ryan what kind of books he liked.  I can’t quite remember exactly what Ryan said but it was something like,  GOOD TO SAY ALWAYS LIKE BOOKS BY MY FAVORITE AUTHORS.  I then mentioned to Monica that Ryan’s favorite authors are J.K. Rowling, Rick Riordan, Suzanne Collins, and Lynn Tarshis. She brought us back to the Harry Potter books and she and Ryan conversed a bit about Harry Potter and that certainly won Ryan over.

Ryan interviewed Monica after that and we learned that you needed a Master’s Degree to be a librarian.  Monica knew all of the authors that Ryan mentioned (and the books that they wrote) and she even gave us a new series suggestion, Artemis Fowl.  One thing that really stuck with me is that she said that “If you don’t like reading, you just haven’t found the right book!”  I completely agree with her!  Ryan really enjoyed talking books with her and at one point said BOOKS ARE MY LIFE.

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Freckles, Monica, and Ryan with his 2nd favorite Harry Potter book, The Prisoner of Azkaban (his first is Harry Potter and the Half Blood Prince, but that book was moved upstairs to the young adult section, along with the 5th and 7th books, due to the darker content.

We walked around the rest of the library and she gave us a tour of the Maker Spot, which is a room upstairs that is “An all ages makerspace where those with a library card can use tools, equipment, and software for free in a safe, clean, collaborative environment.”  They had all sorts of things in there like sewing machines, K’nex toys, robotics, and a 3D printer.  She introduced us to Dan and he explained a bit about 3D printing.  If any of our readers have experience with 3D printing, we would love to hear from you!

I mentioned to Monica about our meeting with the mayor and how I was a bit nervous and she told me not to worry as he will put us at ease within the first few minutes.  I made the mistake of saying this within earshot of Ryan and he started to get upset.  He spelled BOUND TO BE NERVOUS MEETING THE MAYOR.  I reiterated what Monica said and tried to help him calm down.

Before we left, we checked out the next book in the series that we are reading, The Mark of Athena by Rick Riordan, and I grabbed a few National Geographic Kids books for Grace.

We headed for City Hall to meet Mayor Oscar Trevino.  We arrived and I couldn’t catch Ryan fast enough before he got a squirt of hand sanitizer and licked it.  We sat down to wait and Mayor Trevino came out to greet us and as soon as I went to shake his hand, Ryan got the hand sanitizer again.  Mayor Trevino did not even bat an eye and he showed us to his office.

He began talking to us and engaging Ryan right away by asking him what he was carrying around (lanyards) and he asked us a little about Freckles.  Once we sat down in his office, Ryan was able to point to the letters on his board to reply to Mayor Trevino’s questions.  Mayor Trevino was genuinely interested in RPM and how Ryan learned to communicate and how long it took him.  We gave him the background on RPM and then Ryan reached out to smell Mayor Trevino’s hand.  Mayor Trevino said that his hand might smell of oil due to some work that he was doing on his bike (I then mentioned to him about Ryan’s bike riding) and then I explained why Ryan smelled people.  Mayor Trevino asked Ryan, “Do I smell good?  I hope so.”  Ryan replied NOT SURE YET.  I WILL FIGURE IT OUT IF WE KEEP TALKING. We both chuckled at that response.  Ryan definitely tells it like it is.

I mentioned to the mayor that Ryan loves to interview people and that he interviewed Officer Hodges (who Mayor Trevino knew personally) and Officer Morgan (who again Mayor Trevino knew personally.  Ryan interviewed Mayor Trevino for about 30 minutes and we learned that he has been mayor of North Richland Hills for 15 years and he has run unopposed for the last 11 years. We learned that his position was part-time and that he has an almost non-existent salary as mayor.  We learned that his favorite part of his job is talking to all of the 2nd grade classrooms in North Richland Hills schools.

Ryan was enthralled.  So was I.  I have met plenty of people in my lifetime and I truly believe that Mayor Trevino is one of the most candid, genuine people I have ever encountered.  We finished up the interview and Ryan spelled TOO GOOD TO THANK YOU AND SAY THAT THIS IS THE MOST INTERESTING INTERVIEW I HAVE HAD TO DATE.  I mentioned to Ryan and Mayor Trevino that I am not sure how Dad and the other people Ryan has interviewed would feel about it but that that was a huge compliment!  Before leaving, I asked him if we could take a picture.  He insisted that I be in the picture as well (remember ponytail and converse oh and did I mention I forgot to remove the sunglasses off of my head?) and he asked if it was okay if we took it by this sign that he worked hard to get in a municipal building.  I thought that it was perfect.

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Mayor Trevino, Ryan, Stephanie, and Freckles.

He then told Ryan that he had one more room that he wanted him to see.

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Ryan and Mayor Trevino.

If you can’t tell how Ryan felt about Mayor Trevino by the end of the visit, then I don’t know what to say.  The smile on his face says it all.  He grinned the whole way home.

Once we got home, it was lunch time and I asked Ryan what he wanted to eat.  His reply:  TOO HARD TO SAY THAT I AM HAPPY TO HAVE INTERVIEWED THE TOO KIND MAYOR.

I told him that I wanted to sit down to talk about our day for the blog and he spelled:  CAN WE DO HANDWRITING FIRST?  Of course I agreed to that (buy in and motivation from him!)

When we sat down, we talked about our experience at the library.

MONICA IS SINCERE IN HER APPROACH.  SHE LIKES BOOKS AS MUCH AS I DO.

I asked him about the 3D printer.  3D PRINTING SOUNDS COOL BUT I DON’T TOTALLY GET IT.  (This is where we could use help from anyone who has used one!)

We then talked about Ryan’s experience meeting the mayor.

MIGHT BE THE NICEST MAN I’VE MET.

I asked him if he thought that being nice was a good quality for a mayor to have.

YES.

Why?

BECAUSE CITIES ARE WHERE PEOPLE CALL HOME. CAN WE GO TO THE MAYOR’S WALK?

Yes.  I will sign us up today (the walk is Saturday, April 1st).  Just so you know, Mayor Trevino may not have an opportunity to talk to you as it is his walk and there will be plenty of people who will want to speak to him.  Are you okay with this?

YES.

So what did you think of your day overall today?

WE REALLY HAD A PACKED DAY.  TOO REALLY BOUND TO LOVE IT.

24 Hour EEG

On Friday, Ryan had a 24 hour EEG (Electroencephalography is an electrophysiological monitoring method to record electrical activity of the brain.)  Ryan’s doctor, Dr. Rossignol, suggested that he have a 24 hr EEG to determine if he was having absence seizures that might be interfering with his ability to speak.  Ryan was seen by Dr. Rossignol in February while we were in the Orlando area.  Ryan really respects Dr. Rossignol and has said DR. ROSSIGNOL IS ALWAYS KIND TO ME.  He has been Ryan’s doctor for 6 years now and has helped Ryan through major stomach issues (duodenal ulcers when he was 6 years old) and 3 seizures (2 at home and one while in school, the last one at 6 years old).  Ryan mentioned that he wanted to do this while we were at the appointment.  I assumed that we would have to travel to California to do this.  If I am being honest, this was not really a priority for me nor was it on my radar.  Ryan has not had a seizure (that I have been aware of) since April of 2013 and we have tried anti seizure medications in the past and they have some pretty awful side effects (and this was before Ryan could communicate, so we really did not know how they affected him).

We found out that the company that Dr. Rossignol recommends, EEG to Go, was coming to the Dallas area in March, so I managed to get Ryan a slot.  Ryan was happy about this, but I was  slightly concerned as I knew that this was going to be difficult.  We got to the hotel where Brad and Zulem from EEG to Go were hooking up the kids.  When we got there, Ryan spelled GOOD TO SAY, HAPPY TO BE HERE.  DR ROSSIGNOL SUGGESTED THAT AN EEG MIGHT BE HELPFUL TO FIGURE OUT WHY I CANT TALK.

I was almost in tears and I think that Brad and Zulem were on the verge too.  I know what Ryan is capable of and his statement still caught me off guard!  I then asked him if he had anything else to say before we started hooking him up or if he had any questions and he spelled  THE AIR CONDITIONING IS TOO LOUD.  The AC was on full blast and it was a unit near the window and rather loud.  Again, he caught everyone off guard.

Brad mentioned to Ryan that he needed to choose a backpack for the recorder to go in.  He would need to wear this backpack to keep the recorder close.  There were a lot of choices including Batman, SpongeBob, and a few other cartoons.  Ryan spelled WOULD I BE ABLE TO USE MY OWN BACKPACK?  (This comment did not catch me off guard as I knew that he would think that the backpacks were too babyish). We did have a Texas Rangers one in the car that I mentioned to Brad, but both Randy and I did not want to head back down to get it as we were about to get started.  Our plan was to carry down the recorder and use his backpack.  That plan changed though.

Zulem started putting the electrodes on this head and Ryan began flinching right away.  I know that he knew what to expect, but that his body had a different idea.  It was a bit of a struggle to keep him engaged and distracted so that Zulem could do her job.

The process from the time we got there until we left was just under an hour.  We left with a Sponge Bob backpack because it was a struggle to keep Ryan from touching anything so we went with it.  Ryan did say that he was LOOKING FORWARD TO FAMILY DAY.  We had some things planned to keep him distracted.

I sat in the backseat with Ryan the whole way (about 40 minutes) and then we got home.  Ryan immediately went to his room like he normally does when he gets home and started to try and pull off the electrodes near his face.  Hover mom went into full effect and I followed him all around the house.

We read for a bit in our newest series, The Heroes of Olympus, and then Randy and Grace set up Scrabble for us to play.  It was the kids first time playing it.  Ryan was still having a hard time, but he sat and was my teammate for the game.

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The only picture that I got since my hands were busy keeping Ryan’s hands off of the equipment.  This Scrabble game has a feature that you can lock in the tiles so that they don’t move, which is great for kids who might be tempted by the tiles.

We took a break after about an hour and Ryan and I took Freckles for a short walk (which was allowed with the EEG but we had to return home for the video monitor directly after it).  We then did an RPM lesson the history of St. Patrick (it was St. Patrick’s Day when this took place) and that was a good distraction and lasted about 45 minutes.

We went back to Scrabble and played some more.  This was still hard for Ryan.  After another break, we went back to the classroom table to talk about the feedback that we received after Ryan’s piece that appeared in the National Autism Association of North Texas Winter Newsletter and to work on some business cards about the blog for us to hand out while we are in public.  Shortly after we sat down, Ryan fell asleep at the table.

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It was very strange and unlike him.  I figured that since it was an EEG and we were looking to capture some sleep with it, I would let him sleep for a bit.  It was late in the day, around 5:40 pm, so I was concerned about it interfering with his night time sleep.  Around 6:10 pm, I tried to wake him, but he wasn’t having it.  Each time I would wake him, he would just find a different spot to sleep in.

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Upside down on the edge of the couch after trying to find any place to sleep.

This went on until 7pm.  Once he was finally up, he was miserable.  I reached out to another parent who is a veteran at out patient 24 hr EEGs and she mentioned that her son does something similar any time he is tasked with trying as hard as he can to control his impulses.  It completely wears him out.  I think that this was very similar for Ryan as he almost never sleeps during the day, even when he wakes up for the day at 3am.

Earlier in the day, he mentioned that he wanted pizza for dinner.  We rarely ever order delivery pizza, but we did that night.  Ryan ate a bit, but was still dejected and rather mopey.  He was trying to lay down again.

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You can tell that he was miserable.  Freckles was a help though.

By 9pm, we decided to let him call it a night and he went to sleep.  I slept in his room in a recliner so that I could keep an eye on him.  He woke up around midnight and sat up, but I coaxed him back to sleep (which is crazy, because usually when he wakes up in the middle of the night, he is up for the day.)  He actually slept until just after 8 am.

After being up for about 20 minutes, I cut the EEG wires and took off the cap of tape and began removing the electrodes (this is part of EEG to Go’s process as these are disposable).  This was the only time that he began crying during the whole process.  He had had enough and was over it.  I got everything off and his demeanor immediately changed.  He actually smiled.  He had not smiled since we started the process the day before.  He was back to himself.

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Much better after the removal.

He asked me CAN WE GET A CAKE TO CELEBRATE?  I HAVE  A NEW LOVE FOR CHOCOLATE FROSTING.

So we did.  Randy picked one up at the store and unfortunately, there was no one available in the bakery to write on it.  I asked him to pick up some icing for me to do it at home.  Well Randy got icing, but that kind required a tip, so I improvised.  It was not my best work but I think that Ryan appreciated it!

 

We sat down that night to make sure that we captured his thoughts about the process while it was fresh in his head.  Here is what he had to say:

LIKE TO THINK WAVERING IN SUPPORT OF DOING IT.

I asked him why.

IT HAS TO BE THE HARDEST THING I’VE EVER DONE.  UNDERSTAND I TREATED IT LIKE IT WAS MEDICALLY NECESSARY AND THAT HELPED.

I asked him, “Can you explain why it was so hard?”

CAUSING AWFUL PAIN TO MY CALLING IT UNCOOPERATIVE BODY MADE MY TOO MUCH CRAZINESS IN MY MIND CONSUME ME.

He then continued.

CARING TO SAY YOU GUYS WERE AMAZING.  LIKE APPRECIATED ALL OF THE FUN THINGS. HARD TO PUT INTO WORDS. CARING TO ALWAYS THANK YOU.  LIKE TOO USING IT AS A LEARNING EXPERIENCE.  ARE YOU MAD CAUSE YOU GOT NO SLEEP?

I replied that of course that I wasn’t.  I told him that I would do anything for him and I wished that I could have worn the electrodes and cap for him.

HARD TO SAY I DON’T WANT TO DO IT EVER AGAIN.

I told him that I understood and that we did not need to think about that right now and that hopefully we would get helpful results from this experience.  I then asked him about why he thought that he was so tired.

SO MOM CARING TO THINK I WAS WORN OUT.

I told Ryan that once we got the results, that we would talk about what would be the best course of treatment.  I told him that ultimately Dad and I are the parents and we will try to make the best decision for him and that we wanted him to be able to weigh in.  If it comes back that there is some seizure activity, we need to decide if the side effects of anti seizure medications are worth the risk.

PLEASE KNOW THAT I AM LOVING BEING PART OF DECISIONS.

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Doing the best that he can.

We should have the results in two weeks.  I really wanted to be sure to write this post so that we could help other parents and children, especially those not able to communicate so much yet, so that families have a perspective of what the experience might be like.  This was hard, but Randy and I are extremely proud of how well Ryan did.

 

 

 

A Wedding and a Trip to NYC

Yesterday, we got back from New York.  We went to Long Island for my cousin Bridget’s wedding and then took a short trip into the city with the kids for some sightseeing.  As always, Ryan is a great traveler.  I hope that I gave him enough praise because he truly went with the flow and really handled everything well.

We arrived Friday in the early evening.  We met up with most of my family at the hotel where we ordered dinner in and hung out in Room 404, dubbed The Party Room.  It was a standard hotel room, but it had probably 15-20 people in it at one given time.  Ryan primarily hung out by the door with his iPad and ribbons, but plenty of people came up to talk to him throughout the night.

The next day was the wedding.  A few weeks ago, Ryan and I went out shopping for a suit because he told me he needed a new one (and truth be told, he has grown so much that his last one did not fit.)  Ryan picked the entire thing out, including the Converse.  He wanted to try and do dress shoes but the second he got one foot in one, he took it right off and spelled:  NEED TO DO CONVERSE.

 

The wedding was wonderful.  The Catholic Mass was great (Grandma Chris even was one of the readers!) and Ryan sat through the whole thing, barely making a noise.  Ryan has been joining us at church more frequently and seems to enjoy it.  He was complimented by several people about his behavior during the ceremony.

The venue of the reception was gorgeous.  It was right on the water and it was very large, providing plenty of room to walk around inside (it was a bit chilly outside, but very pleasant for this time of year in NY).  You could tell that Ryan was having a great time.  It is still hard for him to control his body to dance purposefully, but we all helped him along. It was a great night.

This was from the wedding photo booth.  Ryan always enjoys photo booths (although outwardly it would be hard to tell!)

THE WEDDING WAS AMAZING.  WE DANCED SO MUCH AND IT WENT BY TOO QUICKLY.  MY FAVORITE PART WAS DANCING WITH MY RELATIVES.  REALLY LOVE WEDDINGS TOO MUCH.

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The Levinson Family with the Bride and Groom!

The next day, we got up and hung out a bit with family and drove our rental car back to LaGuardia airport and took an Uber into the city and to our hotel.  Our room wasn’t ready when we got there, so we decided to explore on foot and check out the city (it was about 60 degrees on Sunday!)

We walked through Wall Street and saw the Bull and the NYSE.  While we were there he spelled:  CARING TO LEARN MORE ABOUT STOCKS.  Of course I am now working on a lesson about stocks for tomorrow!

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We then went to Battery Park and we were able to see the Statue of Liberty from a distance.

BATTERY PARK WAS NOT MUCH TO LOOK AT BUT IT WAS COOL TO SEE THE STATUE OF LIBERTY.

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We met my childhood friend Kristie in Battery Park.  We have known each other for at least 35 years and my sisters Susan and Sarah and I have stayed in touch with her through the years.  She lives and works in the city, so we planned to meet up.  Ryan was thrilled to interview her.  Kristie came to dinner with us that night too and we met up at Ben’s Deli with most of my siblings and my mom who spent the evening in the city.  I think that we had too much fun and too much to talk about because I didn’t get any pictures with her!

TOO LOVING KRISTIE.  SHE IS AMAZING.  I WAS IMPRESSED THAT YOU GUYS HAVE BEEN FRIENDS FOR SO LONG.

The next morning, we had an appointment at the Top of the Rock at 10am.  My Aunt Suzi was able to make the arrangements for us as VIPs and it did not disappoint!

TOP OF THE ROCK WAS REALLY COOL.  MOSTLY LIKED ALL OF THE VIEWS.

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From Top of the Rock, we walked over to St. Patrick’s Cathedral.  We sat in one of the pews and said a prayer and lit a candle for Grandpa Bob.

REALLY BECOMING A RELIGIOUS PERSON LATELY.  GIVING TOO MUCH CREDIT TO GOD FOR MY LIFE.  CARING TO TRY TO MAKE MY COMMUNION.  Grace is making her First Communion this year and I had previously asked Ryan if he wanted to try and do it and he said that he was NOT SURE at that time.

 

We grabbed lunch at Bill’s Burgers and then headed over to Central Park.

CENTRAL PARK IS HUGE.  THE SETTING IS TOO AMAZING AND NOW I CAN PICTURE GREGOR THERE. Ryan is referring to the Gregor the Overlander book series that is one of his favorite series ever.  Gregor used grates in Central Park to go to the Underland and return from it after initially “falling into the Underland” via a hole behind a washing machine in his family’s apartment building after his baby sister had fallen in.

 

Our next stop was to walk to Trump Tower.

TRUMP TOWER WAS LIKE TOO COOL.  THE ESCALATORS ARE WORLD FAMOUS ACCORDING TO DAD.  IT WAS DEARLY MEANINGFUL TO RIDE THEM.  PLEASING TO GET A SHIRT.  KIND OF TOO WANTING TO MEET PRESIDENT TRUMP.  TOO CARING TO SAY, POLITICS ASIDE, HAPPY TO VISIT HISTORY.  DESPITE PETTY DIFFERENCES, SHOULD NOT JUDGE ME.

 

My youngest sister Samantha is a Manager of the Observation Deck for One World Trade Center.  She was working on Monday, but she was able to slip away to give us a private tour.  Let me tell you, I was extremely proud of her.  She has so much responsibility and she handles it with extreme professionalism and grace.  As her sister, it was very cool to see her do what she does best.

UNDERSTAND, WORLD TRADE CENTER WAS MY FAVORITE STOP BECAUSE I GOT TO SEE AUNT SAM IN ACTION AND I GOT TO INTERVIEW ROB.

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Rob, Aunt Sam, and Ryan in the One World Trade Center Offices after Ryan’s interview.

We checked out the Oculus and the 9/11 World Trade Center Fountains and then walked back to our hotel.  By this point, I knew that Grace was sick.  She was a trooper, but by the time we got back she was done for the day and was running a pretty high fever.  I didn’t think that it would be a good idea for Ryan to stay in the hotel room for 5 hours, so we ventured out.  Grace stayed back with Dad while Ryan and I brought her back a book and some Chipotle.

TOO LOVING DATES WITH MOM.  BARNES AND NOBLE WAS HARD TO FIND BUT WE MADE IT.  (We found the location but I could not figure out where the entrance was to get to the second level at first.)  A WAY FOR ME TO STAY OUT OF TROUBLE IS WALKING.

I asked Ryan if he had any more thoughts about the trip and his reply was:  I LOVED MY TRIP TO NY.  BECAUSE I LOVE MY FAMILY SO MUCH IT IS HARD AFTER AN AWESOME WEEKEND TO COME HOME.  TAKING MORE TRIPS WOULD BE A WONDERFUL THING.

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Ryan at the highest point of the Top of the Rock Observation Deck.

Officer Morgan and a Presentation Which Includes a Speech by Ryan

Ryan and I love having a blog.  Finding time to update it often proves to be a challenge though.  I really believe that there are not enough hours in a day!

Two weeks ago, we met Officer Chris Morgan, the Mental Health Officer for North Richland Hills (NRH) Police Department.  I found out about him from our local NRH newsletter as there was a feature section about him and the work that he is doing.  As soon as I saw it, I told Ryan that we were going to interview him.

As a parent of a child with special needs, I am always concerned about his future.  Ryan is only ten years old, but one day he will be a teenager and then an adult.  How will society view him?  With the recent events of the tragedy at Fort Lauderdale Airport, I found myself thinking, what if we were there?  Could Ryan comply with the officers’ demands of staying on the ground and not moving?  I know that he would understand the instruction and the importance of it, but what about his uncooperative body?  This is a major reason for wanting to meet Officer Morgan.

I set up the appointment the week before and Office Morgan was extremely kind on the phone.  He was looking forward to meeting Ryan.  I had mentioned to him that we had met Officer Hodges last year and Ryan had a good relationship with him.  Officer Morgan asked me a little bit about Ryan and I told him some things and I gave him our website info.

When we arrived on that Tuesday, Officer Morgan met us in the lobby.  We brought Freckles with us (of course) and he escorted us back to his office.  We stayed about an hour while Ryan asked his standard interview questions and I asked a few myself.  Officer Morgan spent so much time with us and did not rush us.  About a half an hour into speaking with him, there was a knock on the open door and there was Officer Hodges!  Officer Morgan mentioned that he might try and come by, but I was sure that he would be too busy.  Ryan was thrilled (although his outside demeanor may not have shown it).  He stayed and we chatted for a bit and then he went on his way.

After a few more minutes, Officer Morgan asked Ryan if he could ask him a question.  He posted this and some pictures on his Facebook page here.

“If there were just one thing I could teach officers about their interactions with autistic people, what would it be?”

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Ryan spelled this answer and Officer Morgan jotted it down.

Ryan loves interviewing people about their jobs.  Meeting and connecting with Officer Morgan was no exception.  We are very grateful that he took time out of his day to educate us.

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Freckles, Officer Morgan, and Ryan.

*****

Last Saturday, Ryan, Freckles and I were part of a local workshop sponsored by TACA called Bright Ideas for Communication and Learning for the New Year.

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Ryan and I presented second during the workshop.  Our goal was to get more parents interested in learning to do RPM with their children.  Selfishly, I want Ryan to have more friends to communicate with, but I also want parents to have hope and to know that their autistic children can excel and have some normalcy in their lives!  I began the presentation by introducing myself and then had Ryan introduce himself.  I thought that it would be good to get the audience’s interest right away by showing what Ryan could do.  He did great!  Through a PowerPoint Presentation, we walked the audience through the 3 years of our family’s journey (which included videos), starting at the first lesson I ever did at home, through today.

Towards the end of the presentation, I read to the audience Ryan’s prepared speech.  His speech follows below:

EACH DAY I BELIEVE THAT HALLMARK STARES WILL GO AWAY.  TOO HARD TIME AFTER TIME TO MOSTLY BE TREATED LIKE I AM RETARDED.  I AM REALLY SMART.  HAPPY TO PROVE HOW SMART I AM NOW THAT I CAN USE A LETTER BOARD TO COMMUNICATE.  IT HAS COMPLETELY TRANSFORMED MY LIFE.

UNDERSTAND I AM TOO MUCH LIKE YOU.  I GIVE WITH ALL OF MY HEART EACH DAY.  MIGHT TOO MUCH TURN MY SADNESS INTO A POSITIVE THING.  FEEL PEOPLE SHOULD VERY MUCH GET TO KNOW ME.  SOMETIMES LIKING TOO MUCH TO GET TO KNOW YOU.  REALLY GOOD TO INTRODUCE YOURSELVES, TREATING ME LIKE I UNDERSTAND YOU.

MEANINGFUL TO ME TO GET THE OPPORTUNITY TO SPEAK ABOUT RPM TO ALL OF YOU CARING PARENTS.  TOO HARD TO EXPRESS THE WORDS TO TOTALLY SAY HOW IMPORTANT IT IS TO TREAT YOUR KIDS WITH RESPECT.  PLEASE CARE TO GIVE IT A TRY WITH YOUR CHILDREN.  ANY QUESTIONS?

I think that his speech had a very powerful impact.  We had a lot of people giving us good feedback and asking us questions at the end and after the presentation.  Adriana Barriga, the local RPM provider and Ryan’s teacher was there as well.  I stressed the importance of finding a certified provider and she has already had several parents contact her.  I consider the presentation a win!

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The speakers:  Stephanie (Me), Julie, and Rebecca.

Even though I was listed as the speaker, the stars of the presentation were Ryan and Freckles (who did amazing).  Ryan and I will be presenting the same presentation this week at the DFW Autism Conference.  We are very excited about it.

Later that same day, we will travel to Florida for my sister-in-law’s (Ryan’s aunt) baby shower.  Ryan, Grace, and I will spend the weekend there with family.  We will try and update the blog next week about our adventures in Florida.

Four Short Stories by Ryan (One is dedicated to Grace) and a Short Video

I love Ryan’s stories.  I am probably biased because I am his mom, but I really love how he weaves in things and ideas that are in his mind.  In the following stories, you can tell that he has a lot on his mind:  learning to speak, the beach, his sister, his sister growing up (I won’t spoil that one), and learning to speak (do you see a pattern here?)  I hope that you enjoy them as much as I do.

ONCE THERE WAS A HANDSOME TEENAGER BUT HE COULDN’T SPEAK.  THE TEENAGER TRIED TO SPEAK TO OTHERS (MEANING THAT HE DID NOT SUCCEED.)  THE TEENAGER THOUGHT THAT HE HAD TO LEARN TO TALK.  HE TRIED TO HAVE SOMEONE HELP HIM.  HE GOT INTERESTED IN SPEECH THERAPY TO HELP HIM SPEAK.

MANY YEARS HAD GONE BY.  LEARNING TO TALK WAS HARD.  ONE DAY HE OPENED HIS MOUTH AND THE SOUNDS HAD BEEN MADE.  TALKING TOOK HARD WORK TO ACCOMPLISH.  THE TEENAGER HAD MET BIG GOALS.

MORAL IS HARD WORK MAKES THE TASK NOT SO HARD.

THE END.

*****

THERE WAS A GIRL THAT LOVED THE BEACH.  THE GIRL TALKED ABOUT THE BEACH EACH DAY AND REALLY TALKED A LOT.  THE GIRL TOLD HER MOM, “ONE DAY A LONG TIME FROM NOW, CAN I LIVE AT THE BEACH?”

THE MOM TOLD HER, “SURE.”

THE GIRL ALWAYS LET HER FRIENDS KNOW HER PLANS.

A LITTLE TOO EXCITED, THE GIRL COULD NOT WAIT.  SHE RAN AWAY TO THE BEACH.

THE GIRL HAD MADE HERSELF A HOME FROM SAND AND SLEPT THERE THE WHOLE NIGHT.  THE MORNING CAME HARSHLY.  THE SUN WAS TOO BRIGHT.  AND THE GIRL DECIDED TO HEAD HOME.

SHE RAN BACK HOME CRYING.  THE GIRL TOLD HER MOM THE COMFORT OF HOME WAS ALWAYS BETTER THAN THE MAGIC OF THE BEACH.  THE GIRL CHANGED HER MIND.  THE BEACH WAS NOT WHERE SHE WANTED TO LIVE.

THE END.

*****

CAN I CREATE THIS STORY DEDICATED TO GRACE?  TO GRACE, THIS STORY IS FOR YOU.  LOVE YOU, GRACE.

THERE ONCE WAS A GIRL WHO TRIED TO COMFORT MANY PEOPLE.  THE GIRL DID NOT LIKE OTHERS TO BE TOO SAD.

ONE DAY, THE GIRL FOUND HER BROTHER CRYING.  THE GIRL TRIED TO COMFORT HIM.  CRYING, THE BOY TOLD HER THAT ONE DAY SHE WOULD GROW UP AND HAVE TO MOVE OUT.

THE GIRL TOLD HIM THAT EVEN THOUGH MOVING OUT TO BE A GROWN UP SOUNDS HORRIBLE, THE TRUTH IS I WILL HAVE TO DECIDE A LOT OF THINGS FOR MYSELF.  THEN I CAN DECIDE TO COME HOME TO SEE MY FAMILY.  TEENAGERS DECIDE THINGS FOR THEMSELVES.

THE LESSON IS WHEN YOU BECOME A TEENAGER, REMEMBER YOUR GREAT FAMILY.

DO NOT FORGET ME.

*****

SO ONCE THERE WAS THE NICEST, SMARTEST, MOST INTERESTING TINY BOY.  THE TINY BOY THOUGHT THAT TO HAVE ONE THING–TEAM OF TEACHERS–TO HELP HIM HAVE THE HAPPIEST, MOST AMAZING SCHOOL.

TO CREATE THIS TINY BOY’S SCHOOL, THE MOM TAUGHT HIM THE TOUGHEST LESSONS. THEN THE OTHER TEACHERS TAUGHT HIM TOO.  THE OTHER TEACHERS ONLY HAD THE TOUGHEST LESSONS TO MAKE THE TINY BOY HAVE THE HARDEST SCHOOL.  THE TINY BOY NEVER MADE HIS TEACHERS THINK THAT HE COULD TALK.

THEN ONE DAY, THE TINY BOY MADE A STORY TO TELL THE TEACHERS HE WANTED TO TALK.  THE TEACHERS TRIED THEIR BEST TO TEACH TALKING.

THEN THE DAY CAME THAT THE TINY BOY TALKED TO THE TEACHERS.  THE TINY BOY COULD TALK TOO.  THE TEACHERS THOUGHT THAT THE TINY BOY DID NOT TALK.  THE TINY BOY PROVED THEM WRONG.

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During a field trip to Leonard’s Museum, a local museum dedicated to the Leonard Brothers Department Store in Fort Worth.

*****

So now I am reaching out to our readers (especially the speech therapists out there) for tips on working with a child who is severely apraxic in his speech.  Ryan is so motivated to talk (like RPM and bike riding) but has so much difficulty.  He often has trouble even producing any sound when he is on the spot.  He will try and he can get the right number of syllables sometimes, but the approximation is not really close to the words.  When Ryan was 4 years old, he had about 40 approximations (that were distinct and close) for words but then gradually lost them after two seizures two weeks apart.  I think that with a lot of work, he can learn to speak.  I am not sure that he will ever be as conversational as he is when he spells on his letter board, but I know that one of his goals is to eventually speak.

I think that PROMPT therapy would be very helpful for him (we did this when he was 3 years old) but Ryan does have some anxiety about seeing a speech therapist.  I would love to get some exercises to work with him at home. He allows me to manipulate his mouth to try and make sounds and he watches my lips very closely when I try to have him say a work back to me.  I have included a short video of Ryan trying to produce sounds so that you can see how hard it is for him.  Thanks for any advice!

More Stories by Ryan (They Keep Getting Better and Better!) and an Update on Our School Goals

Ryan has been really into creative writing with Adriana lately.  He has recently written two of my favorite stories to date!  I honestly love how he incorporates what is going on in his life and weaves it into the stories.

Here is one that he started with by spelling:  THINK THAT I HAVE TO TELL A STORY.  A STORY ABOUT BEING A SOON TO BE TEENAGER.

THERE ONCE WAS A TINY BOY THAT NEVER GREW.  THE TINY BOY THOUGHT THAT HE WOULD BE TINY FOREVER.

ONE DAY IT OCCURRED TO HIM THAT HE TURNED THIRTEEN THE NEXT DAY.  IN HIS MIND, TEENAGERS HAD TO BE TALL AND HANDSOME.

THEN THE BOY HAD A DREAM.  THE DREAM TURNED HIM INTO THE TALLEST AND MOST HANDSOME TEENAGER THERE EVER WAS.  THE TINY BOY WAS NO MORE.

THE TINY BOY WOKE UP.  HE THOUGHT IT WAS A DREAM.  TO HIS SURPRISE, THE TINY BOY NEEDED TEENAGER CLOTHES NOW.  HE HAD GROWN AND IT WAS ALL HE WANTED AND MORE.  THE TINY BOY WAS HONESTLY SO HAPPY.

THE TEENAGER CONTINUED TO HAVE GROWING ON HIS MIND, CAUSING MORE DREAMS.  HE HAD TO GROW AS BIG AS HIS DAD.  THE TEENAGER GREW MORE TILL HE WAS TALLER THAN HIS DAD.  THEN HE WAS THE TALLEST PERSON IN HIS FAMILY.  THE TEENAGER IS FINALLY HAPPY.

THE TEENAGER COULD NOT BELIEVE THAT HE GREW SO MUCH.  THE ONLY THING THAT HE DID NOT HAVE WAS THE MOST HANDSOME MAN AWARD.

THE BIG TEENAGER TRIED DREAMING THAT HE WAS SO MUCH MORE HANDSOME THAN ANYONE ELSE.  THE TEENAGER TRIED TO WAKE HIMSELF UP, BUT HE ONLY STAYED DREAMING.

MANY NIGHTS WERE SPENT IN THE SAME DREAM.  THE TEENAGER COULD NOT HAVE IT ALL.  SO HE TRIED TO HAVE ONE MORE DREAM.  THE DREAM HAD TINY TEENAGER.  THE TINY TEENAGER NEVER TRIED TO BE HANDSOME OR TALL EVER AGAIN.

THE MORAL IS TO BE HAPPY WITH THE “ME” THAT GOD GAVE YOU.

*****

After a session with Adriana about the Monarch butterflies migration, Ryan told her that he had a fable that he wanted to write.

ONE DAY THERE WAS A HAPPY MONARCH.  HE HAD MANY, MANY GOLD BEADS THAT SPARKLED.  HE NEVER LEFT HOME LONELY.  GOLD BEADS KEPT HIM COMPANY.

HE INVITED THE OTHER MONARCHS TO HIS HOME.  THE OTHER MONARCHS HAD AN IDEA.  ONE OF THEM TRIED TO STEAL THE GOLD BEADS.  THEN THE ONE MONARCH SUCCEEDED.

IT THEN GOT COLD.  THE MONARCHS COULD NOT STAY.  IT THEN OCCURRED TO THE MONARCH THAT HE DID NOT HAVE HIS GOLD BEADS.  THE MONARCH CRIED, BUT HE HAD AN IDEA.  HE DID NOT NEED THE COLD.  HE COLLECTED MANY CRUNCHY LEAVES.  THEN HE MADE A TINY COOL HEADBAND OUT OF THE LEAVES.

THE HEADBAND HAD CRUNCHY LEAVES THAT SPARKLED IN HIS MEMORY.  HE WAS REMINDED OF THE GOLD BEADS THAT WERE LOST.

LONELY MONARCH GOT COMFORT IN THE HEADBAND.

THE MORAL IS:  MANY THINGS GET LOST SO YOU HAVE TO MAKE IT WORK.

*****
We went over our goals for the Fall during our last day of school before the Winter Break.  I was pleased with the progress that we made during the Fall despite many unexpected things that came up that we had to adjust our plans for.

Here are the goals and the results from the Fall:

Goals
1. Ryan and Mom will read 7 novels by December 2016.
Result:  Exceeded!  We read 12!

2. Ryan and Mom will read 4 nonfiction books by December 2016.
Result:  Exceeded!  We read 6!

3. Ryan will interview one person weekly for 30 minutes through December 2016. He will select the person and prepare interview questions and actively ask questions during the interview.
Result:  Ryan has done many interviews, but I don’t think that he had one a week (nor did he average one a week).  I am going to try and keep better track for record keeping purposes.

4. Ryan will participate in one field trip weekly by helping to pick the venue and following up with appropriate assignment after the trip (thank you card, blog post, report) through December 2016.
Result:  This was not met.  We did do some field trips, but I am pretty sure that it was not once a week.  We were thrown some curveballs this Fall with 2 unexpected trips for me (one to Washington DC for Grandpa Bob’s situation and one to Orlando for Ryan’s cousin Bobby), and two weeks of training for Canine Companions (which we were extended the invitation to the training in early September, after setting our goals).  I am going to try and keep accurate records of how many we do by June 2017.

5. Ryan will sit at the desk for work (RPM lessons and other work) for 2 hours on classroom days, broken up into 4/30 minute blocks through December 2016.
Result:  This is in progress.  Some days we met this, other days we did not.  We are going to try and work on this more.

6. Ryan and another family member or caregiver (other than Mom) will read 3 books together (novels or nonfiction) by December 2016.
Result:  Granny read one book and Dad read one book.  Ryan’s response when we were going over this goal was that:  FINDING IT HARD TO LISTEN TO OTHERS.  I explained to him that he still needs to work on this and try and tolerate other people reading to him.  He then responded:  LEARNING TO READ BY MYSELF WOULD BE GOOD.  We are going to try and work on this too as I know other RPM parents have been successful with this.

7. Ryan will sit to watch television (a documentary, movie, or the news) for 30 minutes at a time without getting up to wander around by December 2016.
Result:  We watch CNN Student News everyday for school.  This is 10 minutes long.  Ryan still has a lot of difficulty sitting, especially at home, for watching television.  We are going to try and start incorporating documentaries into our home curriculum and we have picked up doing Brain Pop lessons again.  These are short videos about educational topics that range from 2-8 minutes in length that have a short quiz after it.  Both Ryan and I really enjoy these a lot and he has asked for a subscription to Brain Pop for Christmas as we have almost exhausted all of the free episodes!

8. Ryan will climb to the top of a rock wall at Summit Gym by December 2016.
Result:  So we have gone rock climbing several times and this is still in progress for Ryan.  He certainly enjoys the free fall part after coming off of the wall, so it is a bit tempting to hop off!

We will be adding goals to include care of Freckles, stopping and getting on his bike by himself, some fitness goals with Special Strong and a few others in January.  We will keep you updated.

Merry Christmas, Happy Holidays, and Happy New Year from our family to yours!

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At the National Autism Association of North Texas Holiday Party!