Ups and Downs, Building a Community, and a Friendship Formed

Well that week flew by.

Monday morning was difficult.  I had a meeting at Ryan’s school with the Augmentative Communication Specialist, the Speech Therapist, the Diagnostician, and Ryan’s teacher to discuss communication needs for Ryan.  We brought Ryan in and this was the first time that he had struggled in front of others when spelling with the letter board.  He kept repeating NOT SURE for all of the answers to the questions by the teachers.  I was frustrated and disappointed and I know that he was.  I was unsure of how to help him.  He was struggling with me at home too.  He was angry during lessons and had difficulty attending.  Unfortunately I believe that he was stressed out with everything going on at school.

This past Monday through Wednesday we helped host Lenae Crandall of H.E.E.D. RPM in the Dallas/Ft. Worth area.  She worked with a total of 10 local families over the course of those 3 days.  Some of the students were already using RPM and others were brand new to it.

Lenae practiced having Ryan shadow his spelling on a keyboard and she also practiced having him hold his own letter board to spell.  Both of these are new skills for Ryan and it will take time for him to become fluent with either of these new skills.  We will practice this at home with known answers and rhyming words and continue to have him answer open ended with me holding the board for now.

It was a very positive experience for all of those involved and it was great for Ryan to be able to have sessions again with Lenae.  My goal is to bring in Lenae and other RPM providers on a regular basis in order to form a very solid RPM community here in the DFW Metroplex.

During Ryan’s second to last session, I asked Michelle Hammons (another parent of a child using RPM) if we could have a joint session with her son, Jake, who is in high school.  I felt as though it would be great for Ryan to be able to converse with someone else who uses the letter board since he had that camaraderie in San Jose with other RPM students.  I also thought that it would be great for Jake to possibly take on somewhat of a mentor role to Ryan.

Here is their conversation:

Ryan:  HI. HOW ARE YOU?

Jake:  PRETTY GOOD THANKS.

Ryan:  SORRY I CANT STOP (he was spitting on the table and then spreading it with his fingers)

Jake:  IT IS HARD I AGREE.

Ryan:  OK.  I NEED TO KNOW HOW TO HAVE A DATE WITH A GIRL.

Jake:  WELL FIRST DONT SPIT.

Ryan:  SERIOUSLY I WANT TO KNOW.

Jake:  OK.  SECOND MAKE SURE SHE IS AUTISTIC SO SHE WILL UNDERSTAND YOU.

Ryan:  OK.  I THINK SHE WILL HAVE TO WRITE HER THOUGHTS WITH A LETTER BOARD.

Jake:  I AGREE.  I DO THAT SO I CAN FEEL COMFORTABLE.

Ryan:  I THINK SHE IS GOING TO BE A BLIND DATE IF MY MOM IS UP TO IT.

Jake:  I AGREE BUT EVENTUALLY SHE IS NOT GOING TO BE SO BAD AFTER ALL.

Ryan:  I AM SURE MOM WILL DO WELL.

Jake:  I ALMOST GOT MARRIED BUT MOM SAID WAIT.

Ryan:  WHAT THE HECK!  I AM SURE MOM IS RIGHT.

Jake:  I AM KIDDING.  I ONCE TRIED TO GET MARRIED TO A GOOSE BUT IT FAILED.

Ryan:  OK.  I AM NOW GOING TO CONFESS TO MY FUTURE MARRIAGE TO A COW.

Jake:  HA HA.  WHO WANTS A COW?

Ryan:  WHO WANTS A GOOSE?

Jake:  REALLY DATING IS FUN SO ENJOY. (Jake’s mom Michelle mentions that he has a girlfriend)

Ryan:  WAIT YOU DO?

Jake:  REALLY CUTE GIRL IN MY THOUGHTS.  MARYANNE IS NOT HER NAME.  (Michelle shows Ryan a picture of Jake’s actual girlfriend who is autistic and communicates with RPM)

Ryan:  SHE IS CUTE.

Jake:  WELL NICE TALKING.

Ryan:  HAVE A NICE DAY.

Their session time was up.

I think that this was huge for Ryan.  Since this interaction, Ryan has been back “on” again and has been doing well with me at home.  He has been very forthcoming with his thoughts and ideas and his spelling is on point.  Later that night, Ryan then spelled for me (after I asked him what he thought of Jake)  HAVE REAL CONNECTION WITH HIM.

The lesson that I have learned is to not underestimate the power of friendship and that by supporting Ryan with RPM and by bringing in quality providers who can help him and enrich his skills, he will only flourish as a result.

Have a great Labor Day weekend!  It is going to be a wonderful, family filled one for us!

IEP and Back to School

So life happens.  I have not had a chance to write a blog post in a week due to all that has gone on here.  I wanted to fill all of our readers in on Ryan’s IEP (Individual Education Plan) meeting, referred to as an ARD meeting in Texas, and to talk about the first week of school so far.

We got to the meeting and I was nervous.  We had Ryan join us for the first part of the meeting.

SO HI MY NAME IS RYAN. The Assistant Principal asked him what grade he was going into. THIRD GRADE. We can’t remember exactly some of the other things that he said but something to the effect: YES TO HAVING A NICE HAPPY SCHOOL EXPERIENCE.

The diagnostician asked him if he had any pets. YES TO NOT HAVING LIVING PETS (see our post about this here.)  She then said, “I am sure you will get more fish” after we explained to them that the fish didn’t make it.  He then wrote TRYING TO GET A SERVICE DOG.

And then he spelled: SO I AM NOT MAKING A GOOD FIRST IMPRESSION. They all disagreed with him and told him how well he was doing as did we.

The school district is incorporating his current IEP and we are meeting in 30 days to discuss the current placement and their assessments with Ryan. I have asked that Ryan be able to complete the assessments with the use of a letter board held by someone who is trained in RPM.

He was offered and started at an autism classroom at another local elementary school about 10 minutes from our home.  Unfortunately the type of classroom that best matched his current IEP is not available at our home school.  The teacher was in attendance at the meeting so she knows what Ryan is capable of and assured me that there are plenty of opportunities for inclusion and that they would aim for that with him. She also knows that he needs higher level curriculum.  She is very kind and eager to work with him.

Once we got home, I sent the teacher 5 sample lesson plans that I have recently done with Ryan and a link to the blog too.

The biggest concern that I have is that the classroom is K-4. I must have mentioned that at least 3 times during the meeting that i was concerned about that though.  I still believe that these concerns are valid as we met two other students at “Meet the Teacher” night last week and they were both younger than Ryan.

Fast Forward to the First Day of School.

Once he got home, I asked Ryan about his first day.  I knew that he would be brief with me right after school.  YES TO BAD DAY. YES TO TREATING LIKE A BABY. YES TO ALL THE KIDS LAUGHING AT ME AT GYM.

I did an RPM (Rapid Prompting Method) lesson with Ryan (on a teenager inventing a flashlight that does not require batteries) and after it, then I asked him to clarify what he spelled earlier about school.  He said the following after the lesson: MY CLASSROOM IS TOO BABYISH.

I said well give me 3 reasons why it is too babyish:

YES TO FALLING BEHIND ACADEMICALLY.

YES TO KIND OF CAPABLE OF MORE APPROPRIATE WORK.

I then asked him for the third one to give me an example of what he taught that was babyish. ABOUT CALENDAR.

Third reason: YES TO CALLING MY INDIVIDUAL WORK ETHIC INTO QUESTION.

I then asked him if the kids really laughed at him at gym and he said YES TO THAT HAPPENED.

I told him that he either had to write a haiku poem or give me a possible solution to his school situation so he chose a haiku poem:

MY SCHOOL IS BABY

I HATE IT SO FAR TODAY

MAKING ME GO WRONG

Randy and I talked with him that night about first days of school and that it is a transition for everyone and that we were aware of his concerns and that we would let the teacher and ARD team know.  Randy wanted to know a little bit more about what happened in P.E. and Ryan spelled:  GYM CLASS BECAME NOT SUPER FUN WHEN OTHERS MADE FUN OF ME.

A quick side note: I don’t know if anything really happened in P.E. or if Ryan is just very self conscious of his behavior.  We went to the Perot Museum last week and once we got home, Ryan spelled something similar indicating that others were laughing at him, but I did not notice that while we were at the museum.  We found out from the teacher that they were only able to walk by the gym class because the kindergarteners were there.  We are still not sure if he meant recess time or if he is just really self conscious of how he appears to others.

The rest of the week so far has had ups and downs (with unfortunately more downs).  We are not sure how much of this is just him not being comfortable in his own shoes with his high cognition yet very uncooperative body.  I don’t know if anything that transpired this week would have met his expectations.  We are aware of this and we know that he is still just 8 years old.

I still read to Ryan every post that I write for the blog for his approval.  Here is what he had to say this afternoon about this one:  YES TO MY SCHOOL IS TOO HALTING IN MY ACADEMICS.  YES TO LEADING ME ON A HOMESCHOOLING.  NOT SUPER HAPPY IN MY CLASSROOM.  YES TO MY CLASSROOM IS TOO BABYISH.

To be continued…

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The Day That We Got a Tour of the Fire Station…

Today we went to the local fire station for a summer “field trip”.  I had begun a dialogue with Fire Safety Education Officer, Mr. Marcus Hodges shortly after arriving in Texas.  We were able to set up a tour of our local fire station this morning and it was an absolutely amazing experience for the kids and for me.

Ryan and I had done an RPM lesson on firefighters months ago.  Last Halloween, he actually picked out a firefighter costume.  At that point, he was not yet communicating openly with us, so we had given him written choices while we were at Party City.  We were able to narrow it down and he picked a Firefighter.  This was the first glimpse of an interest of Ryan’s that we were not aware of.

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Fast forward to this week where we sat down to come up with questions (and a statement) for our tour.  Here is what Ryan came up with:

  1. BEING A FIREFIGHTER SEEMS FUN, IS THAT TRUE?
  2. YES TO KNOWING WHAT A TYPICAL DAY LOOKS LIKE?
  3. YES TO MAKING A DIFFERENCE APPLICABLE TO MANY PEOPLE’S LIVES.  Is that a statement?  YES TO A STATEMENT.

So we arrived this morning and we were immediately greeted by Mr. Hodges.  It was very evident as soon as we met him why he was in the position that he was in.  He was great with the kids, explained everything to them and engaged them with questions along the way.  Ryan seemed nervous in the beginning.  He began to try and run off and I caught him before he could do it.  I explained to him and to Mr. Hodges that it was okay for him to be nervous as this is new to him and that I know that he was excited about it.  We continued on and Ryan was great.  He seemed to be listening and had very little stims (self-stimulatory behaviors) compared to his norm.  We checked out four trucks and one car.  Mr. Hodges explained all of the different equipment that went along with the trucks, what it was for, and how it was used.  As I stated before, he engaged the kids with questions too.  I am pretty sure that he had done this a few times (wink wink).

We then went inside and toured the station.  We met three other firefighters while we were there and we saw where the firefighters slept, hung out, and dined.  We also saw some of the offices and the workout room.

I had joked that there was so much good information that there should be a quiz at the end.  Well, as we were finishing up, Grace piped up with, “So can I have the quiz now?” and on the spot, Mr. Hodges came up with 3 quiz questions for her!

After we got home, Ryan and I sat down to discuss the morning:

Ryan:  QUESTION FOR YOU.

Me:  Sure.  Go ahead (as I am bursting with excitement on the inside of what could he possibly ask??)

Ryan:  MAYBE CAN WE DO ANOTHER LESSON ON LIBRARIES AND HOW THEY WORK?

Me:  Of course! So I guess that our next field trip will be a behind the scenes tour of the library? (He is already planning the next one!)

Ryan:  YES TO A BEHIND THE SCENES TOUR OF THE LIBRARY.

Me:  I want to know what you thought of our trip to the fire station this morning.

Ryan:  MR. HODGES WAS SUPER NICE AND HAD SO MUCH KNOWLEDGE ABOUT THE FIRE STATION.  HE IS GREAT FOR KIDS LIKE ME BECAUSE HE IS SO PATIENT.  HAVE TO TELL YOU SOMETHING.

Me:  Sure (again bursting at the seams to know what is going on in his head!)

Ryan:  I MAY WANT TO BE A FIREFIGHTER WHEN I GROW UP.

Me:  That sounds like a great idea.  I am so happy that you are interested in doing that.  We will need to continue to work on your body control, but I think that you can definitely do it!  Anything else about today?

Ryan:  SO THANK YOU FOR SETTING IT UP.

Me:  (As I am doing my best to fight back tears that are welling up in my eyes and I am not succeeding with it)  You know that I would do anything for you.  I am so happy that you enjoyed it.  Hey, do you remember that Mr. Hodges mentioned that families can rent out the community room for birthday parties at the fire station?  Your birthday is coming up in just over a month.  Are you interested in doing that?

Ryan:  YES THAT WOULD BE COOL.

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Grace, Officer Hodges, and Ryan

Thank you to the North Richland Hills Fire Station #1 for making us feel so welcomed today!

Stats and Bats and Nerves

Here is another reader question:  Hi!  My name is Marcus B. and I found the blog through David L. on Facebook (I believe one of Ryan’s uncles?), with whom I played little league baseball and we later went to college together.  My question for Ryan/Family:  Do you enjoy watching or playing in any sports (especially baseball)?  I really enjoy the statistics and score keeping in baseball and I have a cousin who is autistic and enjoys it.  Obviously the sport isn’t for everyone but I’m curious Ryan’s take on this.

YES TO LIKING SPORTS.  YES TO MANY DIFFERENT SPORTS.  MAYBE I WOULD LEARN TO KEEP SCORE SOMEDAY.  YES TO LIKING TO LEARN THAT.  WHAT DO I NEED TO DO TO LEARN TO KEEP SCORE IN BASEBALL?  I asked Ryan, “Are you asking me?”  YES.

I explained to Ryan that when I was younger that I was obsessed with the New York Mets.  This is completely true.  From about 9 years old until I was 12, I was obsessed.  I planned my day around Mets’ games.  I watched Baseball Tonight if I missed the game.  I woke up each morning and stole the sports section out of the Sun Sentinel newspaper to review statistics about the Mets and other National League teams.  I had memorized who was leading in batting average, home runs, RBIs, ERAs, saves, etc.  I knew the player and the team and the subsequent number of what the average or total number was.  I even knew the fluctuations on a daily basis.  I explained to Ryan that I would call my Grandpa George almost daily to discuss our “Mets Update” which was a big deal because he lived in New York and I lived in Florida and back then we had land lines and long distance charges, not cell phones.  NOT SURE THAT I KNEW THAT.  PART OF ME ALWAYS KNEW THAT YOU LIKED SPORTS.  LIKE THAT ABOUT YOU.  Which part–the sports part or the stats?  YES TO THE STATS.  ALWAYS LEARNING SOMETHING NEW ABOUT YOU.  We then talked about other things that he might not have known about me like my college major of criminal justice and that I wanted to be in the FBI like his Grandpa Bob and how that did not pan out but that I embarked on another career in human resources outsourcing.  I spoke to him for a while about this and he listened.  I would like to think that he realized that I was not always only a mom, but that I have other interests outside of my children, RPM, and autism…

So add that to the list of lessons that I need to create–one on baseball scorekeeping.  Does anyone have any suggestions on how to go about this?  I am all ears as I mainly was into memorizing the player stats and never really hand wrote any type of scorekeeping for baseball and I believe that there are several different schools of thought on this.

Speaking of schools, yesterday we did a lesson on Leonardo Da Vinci.  As I began the lesson, about 2 questions in, Ryan began slapping his head and crying.  I asked him what was going on.  VERY NERVOUS ABOUT THE IEP MEETING.  We were scheduled to have our transfer IEP (Individual Education Plan) meeting in the afternoon (they call it an ARD meeting in Texas) and Ryan was going to spell a bit for them at the beginning of the meeting.  I asked him what he was nervous about.  MAKING A MISTAKE.  I explained to him that it is okay to make mistakes and this was not his battle and that he is entitled to FAPE (and reminded him that it stands for a Free and Appropriate Public Education) and that he could be the stupidest kid on the planet and he would still be guaranteed FAPE. This is his right.  He spelled FAILING TO DO SO (meaning his previous experience in school).  FLEEING IS MY STIM WHEN I AM PETRIFIED.  LATELY IT KEEPS ME FROM EACH DAY DOING MY BEST.  I told him that this would be helpful for the IEP team to know and could I share this?  YES.  I assured him that it was Randy and my responsibility to ensure that he was treated like a human being that and that the school staff realizes that he understands everything and needs to be spoken to like any other third grade student.  MAYBE CALMING ME DOWN A LITTLE BIT.

Well, Ryan rocked it at the meeting.  I will write more about that later this week.  At this point, I asked him if he wanted to keep going with the lesson or try again later.  YES TO KEEP GOING WITH THE LESSON.  So we did.  Near the end of the lesson, we spoke about the Mona Lisa.  I read to him the text from the book that I was using that suggested “her strange smile fascinates people as it is difficult to pin down.”  I asked him if he could caption the Mona Lisa or if he had any ideas on what she might be thinking.  I THINK THAT SHE IS LAUGHING AT ALL THE PEOPLE MAKING A BIG DEAL OUT OF HER.

Friendships

Ryan answered two readers’ questions on friends today.

Emma wrote:  When having over friends (not autistic) what is a good activity?  We are navigating play dates with our 7 year old RPMer (not much open ended communication yet) and would love advice!

ALWAYS GOOD TO HAVE FRIENDS OVER.  ACKNOWLEDGE LAUGHING EACH TIME BY A FUN ACTIVITY.  LIFE IS GOOD WITH FRIENDS.  GOING OUTSIDE IS A GOOD IDEA OR A CAPABLE GAME TOGETHER.  What do you mean by capable games?  APPLICABLE.  You mean ones that you can participate in?  YES.

We haven’t tried it yet, but we recently got Apples to Apples for Kids and I am planning to be Ryan’s “scribe” so that he can play with friends and family.  Ryan has also played Tic, Tac, Toe and Dots with other kids.  We also might try Headbandz if we can get Ryan to keep the heaband on his head!

Jeanne wrote:  It is so amazing to read these posts.  Ryan, is there someone that you correspond with on an RPM and they respond back, kind of like pen pals?

YES TO PEN PAL NAMED FOX.  YES TO AUTISTIC LIKE ME.  I HAVE KNOWN FOX FOR ALMOST A YEAR.  (I asked him how do you know that?  Did you remember the month that you met him?  YES. OCTOBER).  HE IS MY BEST FRIEND.  I LIKE TALKING TO HIM BECAUSE CAPABLE OF BEING MYSELF.  HE MAKES ME GLAD TO HAVE FRIENDS WHO ARE LIKE ME.

So Ryan and Fox had their second Skype session Wednesday after having written letters back and forth to each other since December 2014.  Fox and Ryan met at HALO in Austin, Texas when they were both there to see Soma for Rapid Prompt Method (RPM) Camp.  These camps are for out of state students who come in and have 2 sessions a day with Soma for 4 days.  On the second to the last day that they were there, they were both doing open ended well with Soma, so she had them participate in a joint session for just a few minutes.  This is where they met and this was the first time for both Ryan and Fox to communicate with someone outside of their family and providers  (it was actually Ryan’s first time corresponding with anyone directly).  They both remember this interaction and a fantastic friendship has formed.

I asked them if it was okay if I could share a tiny bit of their interaction from Wednesday.

Ryan:  HAVE TO TELL YOU SOMETHING.  BACK TO SCHOOL SCARES ME.  NOT SURE WHAT TO EXPECT.

Fox:  ME TOO.  I LEARN BETTER AT HOME.

Ryan:  ME TOO.

They had a lot more to say to each other for about 25 minutes.  They talked more about school, their visits with Soma (and nerves associated with the visits), climbing trees, and traveling.  I can’t tell you how much it means to me for Ryan to have such a wonderful friend who is like-minded and is as smart and caring as Ryan.  I am looking forward to watching their friendship continue to grow.  Not to mention that I gained a good friend with Fox’s mom, Lisa, in the process.

Fox has a blog too.  We would love for you to check it out as he just recently began his blog like us.

You can find it here: Fox Talks With Letters

Cracker Barrel, Cavender’s, Football Loyalty, and Readers’ Questions

Uncle Dan (my brother) is in town and we are enjoying his company.  On Saturday we decided that we were going to go to Cracker Barrel for a late breakfast since there were none near where we used to live in California.  I was excited about it and we talked it up to both of the kids.  Randy and I went into Ryan’s room on Friday night before he went to bed to tell him the game plan for the next day.  I was trying to pump it up and told him a bit about Cracker Barrel (it had been years since he had been) and I was joking saying “It’s a restaurant.  It’s a store. It’s a restaurant.  It’s a store. It’s a restaurant.  It’s a store.”  I asked Ryan his thoughts about going and he spelled SO ONE OF MY FAVORITE THINGS IS INDECISION.  Randy and I began cracking up.  We asked him if he was trying to be funny.  YES TO BEING FUNNY.

Our plan after Cracker Barrel was to go to a store called Cavender’s.  According to their website:  Since 1965 Cavender’s has been your best source for cowboy boots, cowgirl boots and western wear for men, women and kids.  We told Ryan about it and asked him his thoughts about going.  He spelled I HAVE TO GET CAPABLE SOUTHERN ATTIRE.  Again, we were cracking up.  I asked him if he wanted to look like a cowboy.  YES TO BEING A COWBOY.  Randy wanted to be sure that he wasn’t referring to football  YES TO A REAL COWBOY.  We went and he was very patient as we walked around the whole store.  He picked out a Wrangler button up with SHORT SLEEVES (I guess the 105 degree weather does matter!)  After we got home, later I asked him what he thought of Cavender’s.  SO NOT SUPER IMPRESSED.  Boy, tough critic!

Speaking of Cowboys, a few days earlier, Randy was telling Ryan about how a good friend of his wants to come to our house, but he won’t come if Ryan is wearing any San Francisco 49ers gear as he is a die-hard Dallas Cowboy fan.  Ryan’s response:  SO EACH DAY I AM STAYING A FORTY-NINERS FAN.  I AM LOYAL.  Randy was walking away but said to Ryan that that might not go over too well in Cowboy Country and Ryan responded SO NOT PAYING ATTENTION TO THE HATERS.  Randy looked at me and said,  “He didn’t spell haters?!”  I replied that “He most certainly did!”  Randy then retorted that he must have gotten it from me.  Ha!

Below are a few more questions from readers that Ryan has answered.  On the day that I asked him these, his stomach was bothering him, so he was a bit short with his answers.  We all have good and bad days and I still wanted to share his responses (of course!)

Vanessa wrote:  I love your blog.  I admittedly am not knowledgeable about autism and I am learning so much!!  I would like to know what types of pets Ryan would be interested in having?  Also I’m curious what his favorite book or author is?  

NOT SURE WHAT PETS I WANT.  “Have you narrowed it down?” YES TO EITHER A CAT OR A DOG.  (On a side note, we put in an application for a service dog for Ryan.  He is aware of it and knows that the process can take up to two years.)

I HAVE SO MANY FAVORITES.  YES TO READING ABOUT HISTORY AND POLITICS.

We actually finished our first chapter book together on Saturday night.  We have started several books including Harry Potter, I Am Malala, Wonder, Ido in Autismland, and a few others, but Ryan seems to either be bothered with the content (some of the books have some rather serious story lines and he has gotten a bit down while I have read them) or has just wanted to start other books.  I should note that Ryan does not have the capacity yet to start and read a book on his own.  He can read, but there is a lot that goes into reading a book on your own (sitting, flipping the pages, lots of concentration with your eyes, etc.)  This makes it difficult for many autistics to independently read books.  Again, please don’t make the mistake of thinking that they cannot read (that is entirely not true), it is that they do not have the stamina to read a book on their own.  In addition Ryan does not often sit still.  He will often move around or be stimming (self stimulatory behavior like playing with beads) and I often follow him from room to room with a book.  After we finished our book tonight (which was a book from the series A to Z Mysteries The Quicksand Question),  I asked him what he thought of it.  YES TO KNOWING I AM CAPABLE OF LISTENING TO AN ENTIRE BOOK.  He was so proud of himself.  He was smiling as he spelled it and he often does not show much emotion through facial expressions when spelling (unless he is upset).  YES TO MAKING IT A HABIT.

Julie wrote:  We are moving in a few weeks. Does Ryan having any suggestions for Sophia? (Sophia is Ryan’s age and also has autism.)

SO I WOULD SAY REMEMBER VERY NOT SURE OF WHAT TO EXPECT.  UNDERSTAND SOME THINGS WILL BE CHALLENGING.  I asked him if he had any more to say.  NOT SURE.  Was anything that I did helpful?  NOT SURE IF ANYTHING YOU DID WAS HELPFUL.  Any other last words of wisdom for Julie?  SO BE PATIENT WITH YOUR CHILD.

I wanted to close by welcoming our new readers who found our blog as a result of The Mighty post!  Thank you for joining us on our journey!  Ryan has a lot to say, so stay tuned!

IMG_5334Grace, Uncle Dan, and Ryan.

Meltdowns

As a parent, we have all experienced it:  the dreaded meltdown.  You know the kind.  Like when your child starts crying about something that might be out of your control or because they can’t find the right toy or you know what–just because.  The thing is that most children stop having meltdowns right around preschool or kindergarten.  For autistic children, this often lasts way longer than that and can occur into adulthood.

Ryan’s crying episodes are much less frequent.  I think that some of that may be due to maturity but also now that we explain everything to him so that there are almost no surprises (other than the unforeseen things that may come up).  Since Ryan’s letter board skills have taken off, we have had more insight into this area.  Let me explain…

The first weekend that we were here, we drove over 3 hours to get to friends of ours son’s first birthday party. Grace and Ryan were great the entire trip.  We got to the party and met some families and sat down to have some food.  It was a bit loud.  There were a lot of toddlers.  It was a typical birthday party.  I met another parent who had a five year old autistic son.  We talked for a bit and then I asked Ryan if there was anything that he wanted to say to her.  He spelled ABOUT RPM IT HAS BEEN LIFE CHANGING FOR ME.  I asked him if he had anything else to say.  YES.  NOT KNOWING HOW LONG I WILL LAST IN HERE.  I saw a slight desperation in his eyes so I knew that we needed to act fast.  I asked Randy if he would take Ryan for a walk.  Before he left, I was trying to finish the conversation with the parent so I stupidly asked Ryan if he had anything else to say before the walk.  YES.  NEED TO LEAVE.

In the past, I may have noticed small signs of Ryan not being able to keep it together.  I probably would have still tried to push through it.  He potentially would have started either stimming (self stimulatory behavior like vocalizing loudly or flicking or hand flapping) and that may then have escalated to crying and/or head slapping.  We are now able to head this off and that is pretty awesome.

Another example has been pain issues.  Ryan has had chronic gastrointestinal issues all of his life.  We can keep it at bay for the most part, but lately I have been allowing Ryan to have some items that he hasn’t been allowed in the past due to keeping a gluten/casein/soy and artificial colors and preservatives free diet.  (Just a funny quick side note, on the way back from the party we stopped at a Czech bakery to use the bathroom. Since I was still allowing some flexibility in his diet, I asked Ryan if he wanted anything to eat–now mind you it was also a convenience store with pantry items, not just a bakery–his response:  STUPID QUESTION I AM ON A DIET.)  Well, I think that these infractions have led to more stomach issues again.  Actually I am sure that they have as Ryan has spelled the following things in the past two weeks:  STOMACH ISSUES TODAY, I AM NOT FEELING GOOD, MY STOMACH HURTS.  The thing about this is, he doesn’t always look like he is in pain.  He may just be engrossed in behaviors and hard to engage.  Sometimes I just notice that he is not smiling as much.  Today, we went out to return something to Toys R Us and Ryan would not get out of the car.  I finally got him out to spell for me (but there was some head slapping and crying) and he said YES TO NOT FEELING GOOD.  Does this communication always make things easier?  Not always.  Does it give us insight into behaviors and make me a more compassionate person?  Yes.  With Ryan’s stomach issues, I can carry medication on me too and give him a dose.  Usually that helps quickly.

I really wanted to write about this topic but I wasn’t sure how Ryan would feel about it being so personal.  I read him the draft and explained to him my thought process about it possibly helping other families of autistic children and he replied YES TO HELPING OTHER FAMILIES WITH THIS POST.  I then asked him if he had anything else to add.  YES TO LEARNING TO TEACH THEM RPM.

Body Control With Autism and a Haiku

We had a streak going.  We had been in the pool every day (with the exception of the first night arriving here) and I wasn’t sure how long we would keep the streak alive.  Well on Wednesday, Randy had to work late, I was not feeling my best, and Ryan’s hands were very badly scraped/scuffed up from “wall walking” the edge of the pool.  His hands were at the point of bleeding and on Tuesday we were having a lot of trouble stopping the bleeding due to the thin skin on his finger tips.  I thought that it would be best to take a break from the pool because of all of the above reasons.  I spoke with Ryan about it and he replied I AM NOT FEELING GOOD ANYWAY.  “So is it okay to skip the pool today?”  YES.  Well two minutes later, Ryan brings me his bathing suit.  “Why did you bring me your bathing suit if you agreed that it was okay to skip the pool?”  NOT SURE WHY I DID THAT.  “What should I do then?”  JUST IGNORE IT.

About five minutes later, he came up to me and started vocalizing (which usually comes out something like ba ba ba) and he was pointing to the door to the patio for the pool.  I said, “Ryan we agreed that we are skipping the pool today.  Why are you pointing at the door?”  YES TO AUTISM RANDOM POINTING.  He then did it again.  AUTISM MAKES ME DO IT.  “So you understand that we are not going in the pool today?”  YES.

Another one of the things that Ryan does often that is perplexing to us is to bring an adult his favorite brand of seasoning, Tony Chachere’s, when he wants to eat.  He usually does this more than once a day.  We assume that he wants some sort of item that he wants to put the seasoning on, but sometimes we will heat something up and he refuses it.  The other day, he brought the seasoning to me.  I asked him, “What do you want to eat?”  I gave him choices that might go with the seasoning like chicken, bacon, hot dogs and he replied NOT VERY HUNGRY.  “Why did you bring me the seasoning?”  I JUST NEED A SMALL SNACK.  “So something like crackers or pretzels?”  YES.

It was time for our morning lesson today.  Sometimes, Ryan will let me know that he needs a little more time before the lesson and I try and respect that.  He does this with the letter board.  Well today I asked him if he was ready for the lesson.  YES TO THE LESSON NOW.  The problem was that he would not go to the room with the table.  He laid down on the floor and was dead weight.  He would not get up.  I tried to pick him up but I couldn’t.  I tried again and failed.  I then took his iPad and brought it to the room.  He finally got up and followed me to the table.  I went ahead with the lesson first and then I asked him about it.  “If you were ready to do the lesson with me, why was it so hard for you to come to the table?”  YES TO HARD.  YES TO MY BODY NOT COOPERATING WITH ME.  “So is it okay for me to take your iPad and bring it to the table or to try and pick you up to get to the table?”  YES TO DOING THAT.

Now the outside observer would definitely think that he did not want to do the lesson but it is quite the opposite.  Ryan always wants to learn.  He gets upset if we miss a lesson.  Last week he had a poor night of sleep so he ended up sleeping most of the day.  We were not able to get a lesson in because we had plans in the evening.  I explained this to him and his reply was AUTISM ALWAYS INTERRUPTS MY LIFE.

So today we did a lesson on poems since Ryan has recently expressed an interest in poems.  We talked about Haiku poems and their origin.  We talked about the rules of haiku poems (5-7-5 format) and syllables.  I never taught Ryan syllables.  He spelled out that he knew what they were already.  I quizzed him on a few words and he got them all right.  I asked him where he learned about syllables.  NOT SURE.  Since I knew that he understood the concept, I then asked him if he wanted to write one himself.  YES.  So we started and he spelled NOT SURE WHAT TO WRITE ABOUT.  I gave him some suggestions like the pool, moving, his iPad, family, and (I wasn’t sure about this one) autism. He chose Family.

My Family

Family has me.

Really love them too, too much.

Need them in my life.

Ryan’s Recent Workshop With Soma Mukhopadhyay

We were fortunate enough to have Ryan participate in a local workshop in the area in which Ryan would get two sessions (thirty minutes in length each) with Soma Mukhopadhyay, the creator of Rapid Prompt Method.  I gave Ryan a few choices today of what he wanted to talk about for the blog and he chose his sessions with Soma.

The workshop was hosted by a friend named Michelle, whom I connected with on Facebook prior to our move to the Fort Worth area.  Michelle’s son uses RPM to communicate and Michelle is a provider herself.  She was kind enough to ensure that Ryan got one of the few spots available for children to work with Soma.  The rest of the spots were for parents, teachers, therapists, and others to come and observe Soma working with the children and to participate in a question and answer session at the end of each day of the two day workshop.  Soma, the student, and the student’s parents were in a small room and Michelle used a camera with a Iive feed to broadcast the session to the larger room of observers.

Ryan and Soma’s sessions covered a poem, jokes, a LESSON ON A WEIRD TOPIC (requested by Ryan), WEIRD BIRDS (requested by Ryan too), and an opportunity for creative writing in both sessions.

I asked Ryan, “How did you feel about your sessions with Soma?”  NOT SUPER HAPPY ABOUT IT.  “Why?”  GOING TO STENCILS WAS HARD FOR ME.  (Soma used the 26 stencil letter board with Ryan so that the parents could see Ryan selecting and pointing to the letters better.  This required Ryan to hold a pencil and to poke through the letters on the stencil.  Ryan normally uses just his finger on a laminated flat 26 letter board, but the parents would not have been able to see which letters Ryan was choosing from the camera view.  Soma explained this to Ryan and me as soon as she began the session).  “Ryan, you still were able to be very accurate and spell your answers and thoughts with the stencil, right?”  YES BUT IT TOOK LONGER.  “Do you understand why Soma used the stencil?”  YES.

“What did you think about the content of the lessons?”  GOOD AS ALWAYS.

“Do you have anything else to say about the workshop?”  I LOVE SOMA.  SHE MAKES ME A BETTER PERSON LIKE NO ONE ELSE CAN.  SHE IS AMAZING IN EVERY WAY.

“Since we are in Texas now, we can hopefully get you on a list to see Soma every quarter.  Do you know what that means?”  YES FOUR TIMES A YEAR.  “Would you like that?”  YES.

“What would you tell parents that say RPM is too hard or that my child won’t do what Ryan does?”  I WOULD SAY NOT TRUE.  SO MANY AUTISTICS NEED RPM IN THE SCHOOL SYSTEM.  “Ryan, Soma was talking a bit about this in her question and answer session with the adults.  She said that she has seen students who have used letterboards all day in school and they are so tired and worn out and angry because it is hard to do and she has seen students who don’t have aggressive or self injurious behaviors start having them as a result of it.  What do you think of that?” NOT SURE ABOUT THAT.  “I wonder if it might be best that the school stick to two RPM sessions a day like Soma and the other providers suggest.”  YES.

“What would you tell the parents who say that RPM is too hard?”  KEEP TRYING.  HAVE PATIENCE.  STICK WITH IT.  NOT POSSIBLE FOR ME TO HAVE A NORMAL LIFE WITHOUT RPM.  “Do you think that you have a normal life?”  YES.  “Did you think that you had a normal life before RPM?”  NOT REALLY.

I thought that I would leave you with some of the content of one of the sessions with Soma.  In one of the sessions, Ryan and Soma did a lesson on the Emily Dickinson poem I’m Nobody! Who are you?   Ryan wanted to write a letter at the end of the lesson.  Here it is.

DEAR NOBODY,

I LIKE TO BE YOUR FRIEND.  I LIKE TO FORGET THAT WE ARE SOME PEOPLE.  PEOPLE HAVE TOO MUCH TO REMEMBER AND ACTUALLY I THINK IT IS SILLY.  THANK YOU FOR BEING NOBODY.

LOVE,

NOBODY

Link to the poem: http://www.poets.org/poetsorg/poem/im-nobody-who-are-you-260

Link to Soma RPM: https://www.halo-soma.org

More Reader Questions and About Those Fish….

We have had a great first week in Texas!  We spent time with family, unpacked boxes, went on our first road trip and Ryan even participated in a local RPM workshop with Soma Mukhopadhyay!  Ryan, Grace, and I have done very well with the transition and we are so glad to be “whole” again with Randy.

Ryan and I sat down today to answer a few more reader questions.  We are in need of more questions, so please feel free to submit them!  In addition, I wanted to clarify something about our blog.  I read to Ryan each post before I publish it.  Last week’s post, I read it to him, but left out the part about the fish not making it since it was a side note and I was asking all of you for help (more on this—keep reading).  I wanted to be sure that you all knew that Ryan “approves” the posts as this is a joint blog.  Anyway, now on to the questions!

Chantal submitted the following question:  From your posts it doesn’t appear as though you have difficulty organizing your thoughts.  This is an area that my daughter struggles in.  She can use her voice but HATES to answer questions that require more than a basic answer, and she has a meltdown anytime she has to write journal entries for school.  Any thoughts on that?

I DONT HAVE DIFFICULTY ORGANIZING MY THOUGHTS BECAUSE EACH DAY I AM ALONE WITH MY THOUGHTS.  SO ONE OF MY THOUGHTS MAKES MY AUTISM HELPFUL TO ME.  HAVING AUTISM MEANS I AM WITH MYSELF ALL THE TIME.  HELPS ME GATHER MY THOUGHTS. I AM LEFT ALONE CAPABLE OF MAKING SENSE OF THE WORLD.

Melissa wrote the following question:  Can you ask Ryan if he’s looking forward to his Uncle David’s wedding? Can you also ask him if he likes to dance? 

I AM LOOKING FORWARD TO THE WEDDING.  CANT WAIT TO SEE EVERYONE. NOT SURE ABOUT DANCING.  IT IS HARD FOR ME.  AUTISM MAKES ME BOULDERS FOR FEET.  Wow.  What a great metaphor!  YES TO METAPHORS.  How did you learn to use them?  I LEARNED BY LISTENING TO ALL THINGS.  EACH DAY I AM FEARING.  DONT AUTISTICS LOSE THEIR SENSE OF HEARING?  I don’t understand.  Do you think that you will lose your ability to hear all things?  YES IF AUTISM IS CURED.  So you don’t want autism to be cured?  YES TO NO CURE.

So Randy and I sat Ryan down and talked to him today about his fish, Margaret and Baena and how we tried really hard but they did not make the trip to Texas.  Ryan’s response was this:  SO SAD.  I BELIEVE IN HEAVEN SO THEY WILL BE OK BECAUSE GOD WILL TAKE CARE OF THEM.  NOT SO SAD SINCE CAPABLE OF INTERESTING NEW PETS.

Once again, Ryan demonstrates his maturity and unbelievable insight.  I certainly have more to write about regarding Ryan’s thoughts on the pool, some interactions that Ryan has had with parents of children with autism since we moved here, and more!  Stay tuned and thanks for reading!