More Museums, Communication Issues, and Grandpa Bob’s Rally

I have so much to write about since our last post.  Things have been busy around here as we just got back into town late Tuesday night from our trip to Florida for Grandpa Bob’s Rally. I first want to talk about two field trips that we went on though.

Two weeks ago, Ryan and I went to the Kimbell Art Museum in Fort Worth.  As many of you will remember, Ryan loves both museums and art history.  Well, once we got there, we were greeted by two gentlemen at the information desk who gave us a map and told us that the permanent collection was free admission.  Ryan and I began walking around and we came upon a picture that depicted the start of the Trojan War, which we had just read about.  I began to read the information beside the painting and Ryan started to get irritated.  I could tell so I asked him what was wrong.

IT IS TOO LOUD IN HERE!

The thing was, we were the only ones in the room besides a small group of a few students and a teacher (and they really were not loud at all).  I continued reading and Ryan began to flip out.  I mean running around, screaming, and throwing himself on the ground.  I was shocked and ran after him and tried to pick him up but he was dead weight.  I finally got him standing up and I was getting angry and frustrated.  I had no idea what had spurred this kind of behavior.  I made eye contact with a museum employee and asked where the nearest exit was.  He showed me and I managed to get Ryan outside onto a bench.

For ten more minutes, Ryan was still crying.  He could not spell.  I did not even attempt it after the first two times of him slapping the board.  Finally, after he calmed down a bit, he was able to spell STOMACH ISSUES.  TOO MUCH PAIN.

I felt awful.  I should have known that this was the case as usually if he is set off by something minimal (like noise that really wasn’t loud) that it is usually provoked by being in pain, but Ryan has been pain free for so long.  I was able to get him to the car and we drove around.  I usually carry medication that helps with this issue, but I did not have it with me (I won’t forget it again.)

I share this story because I think that it is important for parents and for people to know that even though Ryan can communicate with me openly in a variety of settings, that when he is in pain, this is almost impossible.

Today, we went to the Texas Civil War Museum.  Ryan was excited to go.  Once we got there, he seemed a bit anxious and I was a bit nervous that we would have a repeat episode of our last museum experience.  We walked around and we were checking things out when a man who worked at the museum came up to us and started explaining about the dioramas.  I asked Ryan if he had any questions.

He spelled:  HARD TO HAPPY TO HARD before I stopped him.  This happens at times too.  Ryan sometimes gets stuck on “stim” words which are words that are repetitive to him that are go to words that he can spell very fast.  I could tell that he was frustrated with himself and I mentioned this to Gary (the man who worked there whose name we found out later) and Gary said, “No problem.”  I told Gary that we would walk around some more and let him know if we had questions.

Ryan and I checked out all of the cool stuff.

I then sat down with Ryan and asked him if he had any questions or what areas that he wanted to check out.

He was slightly agitated and spelled:  WORRIED ABOUT THE IMPRESSION I MADE ON THAT MAN.

I told him that he was very nice and I am sure that he did not have a bad impression.  We saw Gary later and Gary confirmed this (and Ryan proceeded to smell him and touch his beard, so I think that we were good.)

Ryan’s thoughts on the museum:

HAPPY TO GO TO THE MUSEUM.  I AM INTERESTED IN LEARNING MORE ABOUT THE CIVIL WAR.

I told Ryan that I love history and that I find it extremely fascinating and we can certainly do lessons on the Civil War.

FIND IT FASCINATING TOO.

*****

Randy, Ryan, Grace, and I traveled to Coral Springs, Florida last week for the rally for my dad, Bob Levinson, the longest held U.S. Hostage.  Yesterday marked the 9th anniversary of his kidnapping and today is his 68th birthday.  As you know, Ryan feels very connected to Grandpa Bob and as a 9 year old who has a grandfather who is a hostage, he is obviously very emotional about it.  In fact, I thought that he was too emotional about it to write anything to be read at the rally, but last Wednesday, when we sat down for school, Ryan began crying and it lasted for 10 minutes.  He then spelled I AM READY TO WRITE MY SPEECH FOR THE RALLY.

Here is his speech in its entirety that I read at the rally:

CARING TOO MUCH FOR YOU, GRANDPA BOB.  REALLY WISH TO MEANINGFULLY VISIT WITH YOU.  YOU ARE MY HERO AND YOU DON’T EVEN KNOW IT.  MY DREAM IS TO READ BOOKS WITH YOU.  MOM ALWAYS TELLS ME THE STORIES OF HER CHILDHOOD AND I LOVE THEM.

YOU LIKE SO MANY COOL THINGS.

YOU LIKE TOO MUCH READING, JUST LIKE ME.

YOU LIKE PLEASING OTHERS, JUST LIKE ME.

YOU LOVE YOUR COUNTRY, JUST LIKE ME.

GIVING UP SO MUCH FOR OUR SAFETY AND PROTECTION, YOU ARE A REAL LIFE SUPER HERO.

I LOVE YOU SO MUCH.

Right after the rally, when things had died down, I asked Ryan his thoughts about it.  He was able to spell this in front of a few people who were in attendance:

I AM TOO TOTALLY HAPPY WITH HOW MY SPEECH WENT.

Today, after we talked about the museum, I mentioned to Ryan that it was Grandpa Bob’s 68th birthday.

CALLING IT SO SAD THAT HE IS NOT HERE FOR ANOTHER BIRTHDAY.

I told Ryan that when he was an infant, I went to a ceramic painting place with a new moms group and we had a painting activity for all of us.  I chose a picture frame that I painted red and decorated with Mickey Mouse ears all over it (using the eraser of a pencil to create the 3 circles for the ears) and I wrote on it:  It is my 59th Birthday and I am going to Disney World!  I had planned on giving my dad the picture frame during our big family trip to Disney to celebrate Dad’s birthday.  Unfortunately, Bob Levinson never returned to celebrate at Disney.  I told Ryan that I still have the frame though.

A COMPLETE PICTURE WOULD BE AWESOME.

I agreed with him and told him that I am sure that it will happen.

I asked Ryan about the rally.

HARD TO TALK ABOUT.

Do you want to talk about anything else from the trip?

VISITING WITH ALL OF THE LEVINSON FAMILY IS ONE OF MY FAVORITE THINGS TO DO EVER.  MOM I LOVE YOUR FAMILY TOO MUCH.

Well they are your family too!  I hope that you realize that.

HAPPY TO HEAR YOU SAY THAT.

Anything else that you want to say at all?  It can be about anything.

SO MUCH TO SAY BUT IT IS TOO TIRING TO SPELL EVERYTHING.

We need to get you to a device with word prediction, that will make things easier.  We will get there.  Okay any last thoughts?

MIGHT BE BECAUSE I TOO MUCH DEARLY UNDERSTAND HOW FORTUNATE I AM TO BE BORN INTO MY FAMILY.