The Autism Education Summit, Sound, and Finding His Calling

I had an idea on Saturday night to bring Ryan to the beginning of the third day of the Autism Education Summit this weekend.  The Autism Education Summit is a national conference on autism and it was literally in our backyard (okay about 45 minutes away).  One of my best friends came into town (her son and Ryan are buddies too) and we attended the conference.  I figured that it would be a good experience for Ryan to see what I was doing the first two days of the weekend and that he could try out some of the vendors who had sensory related products or programs.

We got there and did half a lap around the vendor area and Ryan motioned for his letter board (which he rarely initiates) and spelled (very angrily) I AM NOT LOOKING TO CURE MY AUTISM!

I said to Ryan, “I am not looking to cure it either.  I am here to get information to help you with your sensory issues and to keep you healthy.”

VERY HAPPY TO HEAR THAT.

So we continued to walk around.  We checked out the different vendors and Ryan sat in on one of the sessions (Seizures and Epilepsy in Autism) and seemed to be interested.  Along the way we ran into parents that I knew and Ryan spelled for them.  Some of the things that he wrote in response to questions from parents were RPM IS LIFE CHANGING and RPM HAS MADE ME AND MY FAMILY’S LIFE BETTER and I AM REALLY TIRED OF SPELLING.  A few parents commented on how smart he was and he replied I AM HAPPY TO BE THOUGHT OF AS SMART.  He had several parents in tears.  I told him that he probably impacted about 50 people that day.

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One of the most interesting things that happened during the day was when we passed the Hyperbaric Oxygen Chamber booth (HBOT).  He saw the chamber and went right up to it.  He motioned for his board and he spelled I WANT TO DO THIS AGAIN.

We had rented a hyperbaric oxygen chamber on two different occasions over two years ago.  As a parent of a child who is severely affected by autism, you are inclined to try anything within your power to help them improve.  We had the chamber in our home in California and Ryan and I used to do two dives a day, five times a week for a month.  He slept so well while we had the chamber.  The second time we rented it, he did not seem to enjoy it.  He struggled to stay in the chamber and at that point, I was not sure how much Ryan understood what was going on around him.  He was allowed to bring a DVD player and his iPad in and I tried to keep him as entertained as possible in order to make it work.  We ended up discontinuing it as Ryan had a seizure at school (first one in 2 years–he has had a total of 3 that we are aware of) and I was uncertain if the HBOT played a role in it.

MOM, I REALLY WANT TO DO THIS AGAIN.  I WANT TO DO IT TODAY.

“Ryan okay.  I will ask them about it but I don’t know if I can get you in today.”

We got on the waiting list for that day but it did not look good.  We walked around some more and eventually made our way back to the HBOT area.  I REALLY WANT TO GO IN THE HBOT TODAY.

“I understand Ryan but I don’t think that that is going to happen.”

The doctor who was in charge of it spoke to us at length about the benefits of HBOT and included Ryan in the conversation.

MOM YOU ARE FAILING ON GETTING ME IN THERE TODAY.

“Yes Ryan you are right.  I don’t think that it is going to happen today.  Can you tell me why you want to do it again?”

IT MADE ME FEEL DIFFERENT.  IT MADE ME FEEL GOOD.

So I am now looking into possibly renting a soft chamber for our home soon.  Ryan has asked for this for his birthday!

Today, we tried to do a module/theme style in Curry Curriculum land.  Thanks to another parent (I owe you Meredith!), we were given three different lessons all related to speed:  one on Wilma Rudolph, one on the speed of sound, and one on speed word problems (math).

During the Wilma Rudolph lesson, Ryan commented:  ALWAYS TREATING PEOPLE WITH RESPECT IS IMPORTANT (this was after talk about segregation) and MOST PEOPLE UNDERESTIMATE PEOPLE WITH DISABILITIES.  HALLMARK TRICK (his ability to memorize) ENABLES ME TO PROVE PEOPLE WRONG.

The open-ended question at the end asked if he could think of someone who was successful because of determination.  He spelled:  I AM DETERMINED TO PROVE MY INTELLIGENCE TO THE WORLD.  LEANING ON MY LETTERBOARD SKILLS IS GOING TO EACH DAY MAKING ME MOSTLY CAPABLE OF CHANGING PEOPLE’S OPINIONS.  LEANING ON IT MAKES ME NOT SO SAD ABOUT NOT TALKING.

When we began talking about the speed of sound, here is what Ryan had to say:  HALLMARK TRICK MALLEABLE IN SOUND.

“What does that mean?  I don’t understand.”

MEANS I AM SOUND SENSITIVE.  GETTING TO HEAR THINGS THAT OTHERS CANNOT.  FEARFUL OF LOSING THIS ABILITY.  BECAUSE OF THIS I CAN LISTEN AND LISTEN TO COMPETING SOUNDS.

“Is that why you always like having your iPad on with your shows?”

YES BECAUSE IT HELPS ME FOCUS ON KNOWLEDGEABLE THINGS.  ALWAYS LISTENING.

“Have you ever heard anything that you probably weren’t supposed to hear?”  (Thinking about any conversations that I might have had in ear shot of Ryan)

CALLING ME RETARDED.  CALLING ME NAMES ON THE PLAYGROUND.

I explained to Ryan that those kids’ parents are not raising them well and I am sorry that that happened to him.

I think that this is another reason that it seems like a good fit to homeschool Ryan.  Ryan was able to “show off” his skills at the conference because I was able to hold the letter board for him.  When he is at school, he has no way to “show” that he is cognitively intact.  I know that kids who are not autistic can get bullied or teased, but Ryan has no way to defend himself.  I want him to continue to have good self esteem and it seems like homeschooling is a great fit for both of us.

Yesterday we were doing a lesson on Diego Velazquez, who began studying painting at 11 years old.  This began a discussion of what he wants to be when he grows up.  He spelled I AM NOT SURE I CAN DO ANYTHING AS I THINK THAT YOU WILL ALWAYS HAVE TO HELP ME.

I told him that he could do anything that he wanted to do and that we will continue to work on his independence.  I also said that many people work from home so there are opportunities for him that way too.

We then were talking about careers and I explained to Ryan what I did before I was a mom.  His response:  I THINK THAT YOU FOUND YOUR CALLING TEACHING ME.

Today as I was writing this post, he again picked up his letter board to initiate a conversation (this is very exciting to me) and spelled:  LEANING ON MY CALLING TO BE AN AUTISTIC ADVOCATE.  LEARY OF LOSING MY SKILLS.  HAVING MEANINGFUL CONVERSATIONS WITH PEOPLE HELPS ME RETAIN MY SKILLS.

I asked him why he felt like he needed to tell me this.

CAUSE I KNOW WHAT I WANT TO BE WHEN I GROW UP–AN AUTISTIC ADVOCATE FOR NONVERBAL AUTISTICS.

I told him that that was a great idea.

FINALLY LIVING THE LIFE I HAVE ALWAYS DREAMED OF.


10 thoughts on “The Autism Education Summit, Sound, and Finding His Calling

  1. Oh how my heart is singing. I am sorry that I ever doubted how much impact you would have on others, Ryan. I knew you when you were very young and all I could think of was how you needed to be helped. Now I see how much you are teaching me and how you are able to help others. Your mom, dad, and sister have so much to do with your success as well. I am so happy for you all!

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  2. The way you explain your life, feelings, and thoughts gives me hope that you can teach many others about what nonverbal children are able to think and feel. It gives me hope that an autistic advocate that can talk to other children or people with autism, with a greater understanding of what they think and feel, can help them tell others in the world that there is more going on there than what they see with their eyes.

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  3. Hi Ryan and Stephanie,

    I am a friend of (Uncle) David’s from college (we studied abroad in Italy together in 2007) and I have been following the blog ever since he posted it on his Facebook wall when you first started writing. I am so appreciative that you both are sharing your experiences with us in this format. I have learned a LOT about nonverbal autism, and it is incredible to get to know Ryan’s experience in his head and Stephanie’s experience as his (awesome) mother.

    This recent blog post was very moving. Ryan, I hope you will pursue being an autistic advocate for nonverbal autistic people. I think you would be very, very good at it.

    As a friend of David’s, and since I think there are a few of us out there, I would love to know what you thought of his and Sophia’s wedding! What were your favorite parts? Were there any parts you thought were a little strange? (Like certain wedding traditions.) If you didn’t go, would you mind letting us know what you think about weddings in general?

    All the best,

    Christie Pettitt-Schieber
    Chapel Hill, North Carolina

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  4. Ryan you get so much out of your life experiences. Every experience you have gives you something new to think about. ANd I love your idea about being an advocate for autistic kids. You really already are….

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