Progress and a Birthday

It has been a busy month in the Curry household.  School is in full swing and we are still taking Ryan to Speech Therapy three times a week.  Ryan is also seeing his personal trainer, Lee from Special Strong, on a weekly basis now.  He attends Religious Education (R.E.) class and Mass on a weekly basis and he continues to see Adriana Barriga, of RPM of Texas, three times a week at home.  We also hosted Lenae Crandall of HEED RPM in the DFW area for 9 families at the beginning of this month.

We have seen a lot of improvements with Ryan.  Here are a few:

    1. Ryan is able to make purposeful sounds with breath support practice at Speech Therapy and continuing practice at home (on a daily basis).
    2. Ryan goes through his workout with Lee without his iPhone and follows Lee’s instructions of each of the three sets of fifteen for each exercise.

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      Lee and Ryan.
    3. Ryan does not use or listen to his iPhone or iPad during R.E. Class or Mass and attends for 1.25 hours for class and 1 hour for Mass.
    4. Ryan can now wave to people.  He tried to do this for years with ABA Therapy.  I taught him this in one day.  He can now do it when someone waves to him.  I believe the difference is that it is purposeful for him now because everyone waves hello and goodbye (and it is not babyish).  In an ABA drill, it does not seem to have a purpose (other than to make the child annoyed).
    5. Ryan had a dentist appointment this week and allowed the dentist to inspect his teeth and brush a little fluoride on them.  Previously, Ryan had a difficult time even getting past the waiting room and has interviewed the dentist to get more comfortable.
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      Dr Thorne and Ryan.

      (Just a quick note:  I know that there is some controversy in the autism community about the use of fluoride.  We have carefully weighed the options on this and have felt like this was important now for both of our kids who are prone to cavities despite diligent care of their teeth.)

    6. Ryan gets his haircut with no assistance from me and can sit and tolerate it.  He has been seeing Ms. Susan for over 3 years now.

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      Freckles, Ryan, and Mrs. Susan.
    7. With both Adriana and Lenae working with Ryan this past month he continues to make progress in purposeful movement and independence when using the board.

My plan for the rest of this month is to continue school work, plan some more field trips, and get Ryan back to 5K training since the weather seems to finally have gotten out of the 80s and 90s here in the Dallas/Fort Worth area.

*****

Ryan turned 12 on October 6th.  He had a great birthday!  This birthday got me thinking about how his birthdays were in the past compared to how they are now.  If I am being completely honest, I used to dread Ryan’s birthday.  I didn’t know what to get for him, I didn’t know if he knew it was his birthday or if he even cared.  I saw it as him getting another year older and another year slipping away that I could not help him.  This makes me extremely sad to type this.  I know that there are some parents who are in my shoes today with these same thoughts.  Here is what his birthdays used to be like:

Birthdays Ages 1-7:

  1. We weren’t sure if he was interested in his birthday.
  2. He had limited interest in presents and showed minimal facial expressions when he received a gift that he liked.
  3. He needed full physical assistance to open gifts and to stay attending and had to be brought back to continue opening gifts.
  4. He could not track reading birthday cards and often had to be followed around the house while reading a card.
  5. He celebrated with family.
  6. He wasn’t able to blow out his candles, so we blew them out for him.
  7. He wasn’t able to communicate whether he enjoyed his birthday or not.

What I want to tell those parents is, it doesn’t have to be like that!  Ryan’s birthday is something that we celebrate with so much joy now.  He loves celebrating too.  The future is so bright for him and I truly believe that with hard work, the sky is the limit for him.

Birthdays Ages 8-12, with the end results being the observations this year:

  1. He wants to celebrate his birthday (of course!) and he commented first thing in the morning:  MOM THANKS FOR DECORATING
  2. He made a birthday list and his face lit up when he opened the presents that he wanted.
  3. He had to be brought to the table and room, but once there, stayed with minimal verbal prompts to open his gifts.

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    Opening gifts enrobed in his Sensory Sox (a gift from Granny and Mark).
  4. He tracked the wording on the birthday cards and read along.
  5. He celebrated with an indoor pool party with friends (including a best friend who drove in from out of town!) and family.
  6. He blew out his own candles all by himself!
  7. He told us that he loved his birthday!

 

 

I sound like a broken record, but RPM is more than just education and communication.  Ryan’s whole demeanor has changed.  It is not only a result of age and maturity as many other autistic 12 year olds would still exhibit the same observations that Ryan had prior to RPM.  I believe the difference is his quality of life is due to RPM.

When I read this post to Ryan, he replied the following:

YOU CAN SAY THAT BIRTHDAYS USED TO BE REALLY HARD FOR ME BECAUSE I WAS SO LONELY. NOW A REAL BIRTHDAY OCCURS EACH YEAR.  MOSTLY GRATEFUL THAT I CAN FEEL NORMAL WHEN IT COMES TO BIRTHDAYS NOW.

 

I am a firm believer that the world became a better place the day that Ryan Curry was born.  I don’t think that I am alone in thinking this.

*****

 

Currys in the Courtroom

Last Thursday, Ryan and I went to the United States District Court in Fort Worth, Texas.  This was our first field trip of the school year.

This field trip was sparked by a book series that we read over the summer, the Theodore Boone, Kid Lawyer Series by John Grisham.  We read all 6 books and Ryan and I both thoroughly enjoyed them (we hope that he writes more of the books!).  Ryan wanted to share his thoughts on the series so I asked him a few questions:

Is this series for boys and girls?  What age?
CAN BE FOR BOTH, AGES NINE AND UP.
Which book was your favorite?
CAN REALLY SAY I LOVED THEM ALL.
What did you think of Theodore Boone as a character?
I LOVED THEO.  FINDING HIM RELATABLE.  HE IS A GOOD KID BUT IS NORMAL TOO.
What do you mean by that?
HE REALLY DOES THE RIGHT THING BUT HE PUSHES THE LIMITS AT TIMES.
What traits do you think that Theo and you share?
HE IS MATURE AND HE IS A GOOD STUDENT.
Why did you like the series so much when you usually gravitate towards Fantasy novels?
BECAUSE THE STORIES WERE SO INTERESTING.

Ryan has been interested in the law and court since then.  I looked up the contact information for the District Courthouse and reached out via the website.  I got an email reply indicating that since it was just Ryan and me that we could observe at any time.  The email suggested that I call the day before to find out what would be on the docket for the day that we wanted to go.  I did this and found out that there were to be 3 sentencing hearings and 1 revocation hearing.  I asked the woman on the phone what she thought of the sentencing hearings and if they would be good for our first time observing court.  She seemed to think that it would be good to watch.  She also mentioned that the following  week, there would be a high profile civil case that would have a packed courtroom and overflow to another room (and possible protesters), so it might be best to try for Thursday like we planned.  I agreed since I wanted it to be less stressful for Ryan, especially for our first time to observe.

As we were getting ready in the morning, I gave Ryan the option to wear khaki shorts (since it is still close to 100 degrees in Fort Worth) or khaki pants.  He replied:  SEEMS THAT PANTS WOULD BE APPROPRIATE.

We arrived in downtown Fort Worth and it took me a few minutes to find public parking.    There are no electronics allowed in the courtroom, so I left my phone in the car (which meant no pictures) and Ryan did not bring his iPad or iPhone (which he almost always has as background noise).

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In Downtown Fort Worth.
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Paying for parking before dropping the phone back in the car.

We went through security and got up to the fifth floor a bit early so we used the restroom and waited outside the courtroom.  We were let in about 10 minutes before 10:00 am, the time that the hearings were scheduled to start.  Ryan and I found a seat on the left side of the courtroom.  We had been sitting just a minute or so and a man behind me got my attention and very politely asked me why were in court that day.  I replied that we were there to observe the hearings.  He mentioned to me that we would likely want to skip his client’s hearing, which was the third one on the schedule for the day.  I asked him if it was because of the sensitivity of the case and he replied yes.  I decided that it would be best to follow his advice, especially since he went out of the way to approach us about it.  (I later found out that I am very glad that he approached us as the case was not a good one for a child to observe or for me to observe for that matter.)

Shortly after we sat down, the three convicted people entered the room.  They were wearing orange jumpsuits and each had their arms in chains.  I wanted to make sure that Ryan was observing everything, so I mentioned this to him.

I asked him if he had any idea why their jumpsuits were orange.
SO THAT THEY CAN BE SEEN.
I commended him on his answer.

The first hearing was for a young woman who was convicted of possessing and distributing drugs.  She was arrested in July of the previous year and actually gave birth to a baby boy in prison in November of last year.  Her family was in the courtroom to support her.  Ryan was very quiet and attentive through the hearing.

When we got home, I asked him about it.
TOO SAD.  MEANINGFUL TO KNOW HER BACKSTORY.

I asked him about the crime of dealing drugs he replied.
HARD TO THINK THAT.

The second hearing was for a man who was convicted of armed robbery.  He had not had an offense since 1985.  He had fallen on hard times and was living out of his car.  Apparently, three people close to him died within two weeks of each other (his mom, his first cousin, and a childhood friend) and he fell back to crime.

I asked Ryan about this case once we were home too.
I THOUGHT THAT HIS WAS A SAD STORY TOO.

After that was done, we headed out.  I could tell it was beginning to get hard for Ryan to sit and since the lawyer had given us the warning about the sensitivity of the third case, it was time.  Ryan did amazing in the courtroom.  Since we have been working on his tolerance of sitting in RPM lessons, at the movie theater, in church, and at home watching television, this paid off.  I could not have dreamed of taking him to a courthouse a few years back because he would have been disruptive.  This was important to him.

I asked him about sitting quietly (without electronics) for 45 minutes.
MOSTLY HARD BUT I WAS EXCITED SO I TRIED MY BEST.

I asked him if anything surprised him about the courtroom.
THE PRISONERS SEEMED SAD.

I asked him about his first court experience.
LOVED IT.  DO YOU CARE TO DO IT AGAIN, MOM?

I answered that we could do it again.  I also told him that my plan was to reach out to the judge in the courtroom to see if he could interview him about his job.
Ryan replied:  REALLY COOL TO MEET HIM.

I ended up calling later that day and I got the judge’s secretary.  I introduced myself over the phone and I explained that we were in the courtroom today and that I was confident that the judge would know who we were (there were not many people in the courtroom and Ryan was the only child)  She replied, “Oh you were the one with the little boy!”  I have to assume that it is unusual to have a child in the courtroom to observe (other than family members).

She was going to relay the information to the judge and took down my phone number.  I am truly hoping that Ryan gets the opportunity to talk to him, even if it is for 10 minutes. I will keep you guys updated (I am sure that we will blog about it if it happens).

I asked Ryan if he had any other thoughts about his first court experience.
MOM, MOSTLY IT IS COOL BUT SAD TOO.

Summer Vacation 2018, Part 2

On that Saturday, we decided to explore the Balboa Park area that has a lot of different museums for tourists to check out.  The night before, we asked the kids which museum they wanted to go to (narrowing it down to a few that Randy and I were interested in first) and Grace picked the San Diego Natural History Museum (the Nat).  I asked Ryan if he had a preference and he spelled REALLY LOVE MUSEUMS SO CAN DO GRACE’S CHOICE.

We got there and started checking out the place.  What I noticed (and loved) was that the descriptions on the different exhibits were brief but impactful.  The descriptions explained what the exhibit was in just a few relevant sentences, which allowed me to read them to Ryan (and on some have him point/track with me and read in his head) and they were not boring or long.

One of our favorite exhibits was Unshelved.  This area had specimens of different animals, plants, etc. with captions to go along with them.

As we were making our way to the second floor, Randy spotted a man wearing a Canine Companions shirt and baseball cap.  Of course, I had to approach him!  I introduced myself and the family and told the man and his wife that Ryan had Freckles, a Skilled Companion Dog, who was being watched by her puppy raiser, Dawn, for the week that we were gone.  The couple was Susan and Bob, and they had just attended the graduation for CCI in Oceanside, CA the day before.  They were puppy raisers and their first dog just graduated as a service dog in the ceremony.  They have a second dog that they are raising now.

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Stephanie, Susan, Bob, Ryan, and Grace at the Nat.

After that, we explored some more and grabbed a quick snack at the cafe.  We then headed to the fourth floor for the exhibits there.  There were many pictures and displays and I came up with the idea of trying to “title” the picture or display before looking at the name of it.  The kids and I enjoyed doing this and I loved the creativity of some of the titles. (If you hover on the image, you can see the titles we came up with.)

We watched a movie before we left (Ryan did great again and sat the whole time).  It was called Backyard Wilderness.  While waiting for the movie, we checked out the museum store and after the movie, we called it a day.  We spent about 4 hours there, so we thought we did well.

That night, Ryan, Grace, and I walked to Our Lady of the Rosary Catholic Church in Little Italy.  The weather was pleasant (especially compared to the Texas heat), but the church did not have air conditioning.  It was stifling.  I was worried about Ryan in the heat and I positioned him close to the fans.  The Mass was great and the parish members were kind to us.  I always like taking the kids to Mass when we are on vacation so that they can see the similarities and differences to our church (and of course, it is important to us to go).  I was so worried about the fact that we were going to walk back after being in the extremely hot church, and I was unsure that we could, but once we stepped outside, I realized my fear was unfounded.  It was nice and cool outside!  We enjoyed the walk back and then hung out at the hotel (meaning Ryan and I did some more reading) and went to bed.

Sea World was on the docket for Sunday.  We purchased the All Inclusive Experience tickets.  Here’s why: these came with the ability to fast track the lines at the major rides, you could get all you could eat during the day and water bottles at most of the stands, it included 4 professional pictures (one for each ticket), and preferred seating at the shows.  When we went to Guest Services to pick up our tickets, we also got a Special Access Pass for Ryan.  This gave us the opportunity to get a scheduled time or go to the entrance on the rides that were not covered with the inclusive tickets (this included the Electric Eel and some of the smaller rides).  These two things made our experience amazing.

Ryan wanted to go to the Sesame Street area at Sea World.  As you know from our experience at Disney, Ryan loves the characters.  These characters were a big part of Ryan’s childhood.  As we got into the Sesame Street area, I saw that there was a picture opportunity for Elmo and Grover.  I asked him if he wanted to wait in line for the picture (the passes that we had did not apply to photo lines).  He replied YES.  After waiting in the line for about 5 minutes, an employee came out and stated that the line would be stopped about 3 families ahead of us because Elmo and Grover had to get ready for the parade.  The line started to disintegrate.  I was disappointed, but determined.  I asked Ken (the employee) if it would be possible for Ryan to still get a picture as this was important to Ryan.  He apologized and said that Elmo and Oscar (not Grover) would be back at 6pm.  It was a little after 3 pm at this point.  I was not sure how long we were going to stay at the park, let alone head back here to stand in line again.  I took Ryan to at least get a better look at Elmo and Grover.  He spelled:  CAN I GET A PICTURE WITH THEM, MOM?  I explained to him that I was trying my best to do it but I wasn’t sure it was going to happen.

We went back to near where the line was and I was trying to formulate some type of plan when a man and his son left the line and said to me, “You can take our spots if you want.”  I thanked him and found Ken and mentioned to him what transpired and he let us in the line.  Ryan was the last one to see them during this time.  It was important to see both Elmo and Grover because besides enjoying Sesame Street, two of Ryan’s favorite books growing up were The Monster at the End of the Book and Another Monster at the End of this Book.

When we got to them, Ryan spelled CAN REALLY SAY THAT I LOVE YOU GROVER AND ELMO.

Once we were home, I asked Ryan for his thoughts on the picture with Elmo and Grover:  DEARLY FEELING INDEBTED TO SESAME STREET BECAUSE IT MADE ME HAPPY WHEN I COULD NOT COMMUNICATE.  I LOVE ELMO ESPECIALLY.

Moral of the story:  Sometimes pushy moms, good samaritans and good luck are necessary for the win.

We stayed at Sea World until 6:45 pm that night after arriving at 10:30 am.  It was the best experience at a theme park that I have ever had in my life (the Sea Lions Live show was my favorite!)

Ryan’s thoughts on Sea World:  I LOVED IT SO MUCH.  ROLLER COASTERS ARE MY FAVORITE RIDES EVER.  CAN REALLY SAY GEARING UP FOR THE NEXT THEME PARK.

The next day, we left in the morning to return to Texas.  This was the first time that I can remember that I did not need a vacation from the vacation.  It was a great balance of doing fun things and exploring and relaxing.

Ryan’s thoughts on the vacation:  I LOVED IT.  BOUND TO BE FUN.  MOSTLY READY TO TRAVEL AGAIN SOON.

We are back in full swing for school.  We have some cool things planned for the next couple of weeks, so we will be sure to share them in future posts!

Summer Vacation 2018, Part 1

Goodbye Summer, hello school!

We finished summer with a bang as we took a family vacation to San Diego, California last week.  Ryan has a doctor that he has to visit annually, with offices in Southern California and Central Florida, so we scheduled an appointment in August and planned a vacation around it.

We arrived in San Diego on Wednesday afternoon and we were able to check into our hotel right away.  After dropping off our things, we decided to explore and grab a late lunch in San Diego’s Little Italy, where we could walk by foot.

After that, we walked around some more and found a gelato and pastry shop and got some dessert.

We got situated back in the room and relaxed (Ryan and I read Book 2, Catching Fire, of the Hunger Games series) and then went to the hotel happy hour where they had a food truck set up outside for dinner.  After dinner, the kids got changed and we walked across the street to a water area/playground for them to enjoy.

Ryan’s thoughts for the day:  REALLY GREAT, REALLY FUN FIRST DAY.

The next morning, we were up early (two hour time change) and we drove to Aliso Viejo to see Lanier Rossignol, FNP-C.  She spent a great deal of time with us and Ryan was able to participate fully in the appointment.  Ryan is going to go back to being gluten free and will follow a Low FODMAPS diet in order to try and help alleviate some gastrointestinal issues.  I am already gluten free and the Low FODMAPS diet has helped me, so this should be an okay transition.  Ryan has been gluten free in the past, but once he started communicating, he asked to have a more diverse diet.  We allowed it because we did not see any negative health issues after a trial and the diet has never really changed his behaviors.  Ryan is the one who wants to go back to gluten free because he is not feeling well.  He is the kind of kid that really doesn’t complain about pain until it is almost an emergency.

This will be mentally hard for him because in his words, MOM, I REALLY LOVE GLUTEN. BOUND TO BE SAD.  I explained to him that it is much more common nowadays and he will still get to eat like most people.  There are so many people with food intolerances/allergies, that modifications can be made most places.  We are on day 6 so far (since we have been home) and it has been fine.

After the appointment, we grabbed lunch and then met up with a fellow RPMer, E.J. and his mom, Sabrina.  I have known Sabrina for a few years now and I reached out to her since we were going to be in her area for the day.  It turns out that she actually lives about 45 minutes away from where we were going to be, but E.J. was participating in the I Can Shine Bike Camp in the area (the same camp that Ryan attended two years ago!) and we were able to meet up!  Sabrina own a franchise gym called We Rock the Spectrum, which is a sensory gym for kids.  There happened to be a location in the area that we were meeting her, and she is friends with the owner, so we met them there to hang out.  Ryan, Grace, and E.J. got to play while Sabrina and I talked.  We had a great time.

Ryan spelled this after meeting them:  CAN REALLY SAY IT WAS GREAT MEETING E.J. AND SABRINA.  MOM TOLD ME ABOUT THEM BEFORE THE TRIP AND SHE WAS RIGHT.  SABRINA IS SO NICE AND IT IS COOL THAT E.J. MADE HIS FIRST COMMUNION TOO.

We left the area around 3pm and we hit southern California traffic, which made the drive take a bit longer.  Randy had made a reservation at a restaurant on the harbor which was awesome.  After that, we walked around the harbor a bit.

The next day was our beach day.  We went to Mission Beach.  The water was a bit cold for my taste, but Ryan, Grace, and Randy were braver and went in.  We stayed for a while and then ventured to the Belmont Boardwalk where the three brave Currys rode the old school wooden roller coaster, The Giant Dipper.

MEANINGFUL TO GO TO THE BEACH.  IT IS MY FAVORITE PLACE ON EARTH.  THE BEACH IS SO CALMING AND BOUND TO BE FUN TOO.  I LOVE ROLLERCOASTERS SO MUCH.

For lunch, we found this awesome restaurant called Buddy’s Diner.  We sat at the counter and had lunch and everyone ate (which doesn’t always happen).

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National S’mores Day.  #nailedit

After lunch, we took a side trip to the Mount Soledad Veterans Memorial.  This was an amazing memorial that is dedicated to the men and women who served our country in times of war.  The memorial itself was poignant and impressive and the view from the top of the memorial was breathtaking.

Ryan’s thoughts:  I GOT CHILLS AT THE VETERANS’ MEMORIAL.  THE SACRIFICE THEY MADE WAS THE ULTIMATE ONE  I HAVE SO MUCH RESPECT FOR MILITARY OFFICERS.

One of the things that we had planned ahead of time was that we wanted to check out a baseball game while we were in town.  We went to see the San Diego Padres host the Philadelphia Phillies.  Since we are Rangers fans, we went into the trip unsure who we were going to route for.  Well that changed the afternoon of the game as my sister, Ryan’s Aunt Sam, Facetimed us to tell us that she was engaged!  She and her fiancé Jeff, live in South Jersey, right near Philadelphia, and are Phillies fans.  We celebrated by routing for the Phillies! (Ryan’s response in the hotel room:  I AM TOO MOVED.  COOL TO ROOT FOR THE PHILLIES.)  Unfortunately they lost, but we enjoyed watching the game and enjoyed exploring Petco Park.

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Ryan’s thoughts about the engagement (which he spontaneously brought up as we were writing this post):  CARE TOO MUCH.  GEARING UP FOR MR. JEFF TO BECOME MY UNCLE.  ALSO, I LOVE WEDDINGS.

We have a lot more to cover from our vacation, but we will save it for our next post.   Here is a teaser:  we visited the coolest museum I have been to and Sea World!  Be on the lookout for the second part of our vacation this week.

We will leave you with a quick snapshot of Ryan’s first day back to school this past Wednesday!

 

 

Summer Stuff and Speech Therapy

It has been a while since our last post.  We have been extremely busy this summer and I barely have had a chance to sit down to compose a post.

We did run the race on July 4th, but it was a hard one.  The heat definitely got to Ryan as it was about 82 degrees at 8am (and that is very cool by this Summer’s standards).  He struggled.  I felt very helpless as I knew it was hard for him.  He sat down.  He cried.  It was just too physically demanding for him.  I told him that the only requirement was that we finished.  I didn’t care if we were crossing the finish line at 5pm, just as long as we crossed it.  It took us about an hour for the 4 miles (we had never done a race that long before) but we did it.

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Before the race.
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After the race.
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He made it.

Since this Summer has been the hottest one since we moved to Texas, I told Ryan that we were going to take a break from his training and pick it up again once the weather got cooler.  I will be honest, that race scared me.  And then this story scared me even more.  The temperature in Texas has been consistently over 100 degrees and some days have gotten to 110.  Heat exhaustion is not something to take lightly, and when it is difficult to communicate (imagine trying to spell your thoughts when your body is under assault–it is not easy), it is no wonder why I am taking the conservative route on the training and races for Ryan.

Later that day, Josh and his family came over.  We had a great time hanging out and it was so awesome to meet Josh and Amy in person after many weeks of an online class together.

REALLY LOVED MEETING JOSH.  I HOPE TO DO MORE CLASSES WITH HIM.  LEARNING IS TOTALLY THE BEST.

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Grace, Ryan, Josh, and Matthew.

Towards the end of July, we celebrated Harry Potter’s birthday.  The North Richland Hills Library put on some truly amazing events the week leading up to his birthday.  Grace, Ryan, and I participated in an Escape from Hogwarts!, an escape room set up by the library staff including Monica, the librarian we interviewed last year!  When they gave us the rules, they asked if we had any questions.  Ryan asked, CAN YOU HELP US IF WE NEED IT?  They responded with “Yes.”  We went in and we escaped with 17 minutes to spare!  It was so much fun!!!  We had to hunt and find clues and solve puzzles to escape.

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After the picture, Ryan said, HARD TO THINK I WAS ALMOST TRAPPED IN DETENTION!

On that Friday, we attended Harry Potter’s birthday party which included a lot of fun different activities at the library.  We came prepared to party!

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Harry and Hermione!

*****

I wanted to share this fun anecdote with our readers.  As many of you know, Ryan’s favorite character of all time is Mickey Mouse.  I will forever be reminded of this by Ryan’s interaction with Mickey at Disney World last year that Randy caught on video and the video essentially went viral.  The video actually has gotten some traction again since it came up in several people’s “Facebook Memories” from one year ago on August 1st.  Well, I saw some Mickey “Goldfish” at Target recently and bought them for the kids.  Every time Ryan would eat them, I would find something like this:

I finally asked him why he kept leaving the Mickeys out.

BECAUSE I LOVE HIM TOO MUCH I CAN’T EAT HIM.

I asked him if he was joking and he replied YES.

I then said, “Seriously, what’s the reason?”

CAN’T DO IT MOM.

****

So the real reason that we have been so busy is that Ryan has started Speech Therapy again for the first time in over 4.5 years.  Ryan was really down in the middle of July.  His demeanor seemed sad and lethargic.  He spelled I AM STILL TOO SAD THAT I CAN’T TALK and TOO WANTING TO BE ABLE TO SPEAK.  We have been trying to still encourage speech with Ryan, but if I am being honest, I had no idea how to start.  We were trying to take some advice from Soma by firmly patting Ryan’s back to get him to start making purposeful breaths, but I still felt so lost.

When we spoke at a TACA Workshop almost 2.5 years ago, I was intrigued by Rebecca Dana, one of the other speakers besides us.  She is certified in PROMPT Therapy (which is different from Rapid Prompting Method).  I thought to myself, if Ryan ever wants to pursue speech therapy again, I am taking him to her practice.  So when Ryan brought up wanting to speak again, I pitched the idea of meeting with Rebecca at her practice.  So we did that.

Rebecca was very respectful of Ryan and knew that he learned and communicated with RPM.  We met with her and another speech therapist named Shannon and both Ryan and I thought that it would be a good fit.

The way that I am describing this to people is to think about if you had lost the ability to walk over 10 years ago and you wanted to relearn how to do it.  Your muscles would have atrophied and become very weak with nonuse.  The same goes for your mouth muscles and diaphragm.  Ryan has not used those muscles purposefully for over 9 years. He has a lot to relearn and strengthen.  Rebecca and her team are doing just that.

The best part is that Ryan can have a say in this.  He has told me many times since we began 4 weeks ago, that IT IS HELPING ME, MOM.  He will grab my hand or the therapist’s hand to manipulate his mouth to form sounds.  He sits in a chair for 30 minutes and allows the therapist to move his mouth, put fingers inside his mouth and around it, push on his stomach, and hold his head, all because IT IS HELPFUL.  This in itself is amazing.

The first day, Ryan had a flight or fight response to medical gloves.  I believe that he associated them with doctors/dentists/pain.  Rebecca told me that my homework was to desensitize Ryan to the gloves and she handed me 5 gloves to bring home.  That night, Grace and I chased Ryan around the house wearing gloves.  I blew up the gloves into balloons.  It worked.  He allowed Rebecca and Shannon to use them the very next session.  This kid is motivated.

Ryan goes to WalkEZ TalkEZ 3 times a week now.  We drive 45 minutes there and 45 minutes back because I believe in Rebecca and her team and because Ryan really wants this.  I have often told Ryan that he and I may never be the best at anything, but no one will work harder than we do.  Ryan and I do the exercises at home.  We do this twice a day on non-therapy days and once on therapy days.  Ryan has made progress.  This will take time, but I remind him of RPM, bike riding, handwriting, running, and independence on the boards and in life skills.  He has mastered some of these and others are still a work in progress, but he is making progress every day because we work at it.

And we won’t stop working.

 

***A special thank you to all of you who read, commented, and shared our last post.  In addition, thank you to The Mighty, a disability site, that reprinted our post so that our message got out to a much broader audience.***

 

 

10 Things We Would Have Never Known Without Rapid Prompting Method

We went to 5:00 pm Mass last night.  As we were singing the Gloria, a thought popped into my head.  I looked down at Ryan and I thought about how amazing it was that he was sitting next to me in church and that this is our normal every week.  It sort of spiraled from there.  I then thought about all of the ways that our lives are better as a result of Rapid Prompting Method (RPM).

Recently, an ad-hoc committee of ASHA, the American Speech Language Hearing Association, drafted the following position statement:

It is the position of the American Speech-Language-Hearing Association (ASHA) that use of the Rapid Prompting Method (RPM) is not recommended. Furthermore, information obtained through the use of RPM should not be considered as the voice of the person with a disability.

It got me thinking about how our lives would be different if we did not allow Ryan a voice in the past 4 years.  So without further ado, here are 10 things that we would have never known without RPM.

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After the Hero Hustle.

1.  That he loves spending time with his sister.

I had to put this as number one.  For so many years, we thought Ryan was indifferent to Grace because he rarely showed her any outward affection.  We came to learn that he absolutely adores his sister and wants to spend as much time with her as possible.  They do Mad Libs together (with toilet humor coming from Ryan).  He attends all of her shows, games, and ceremonies to support her.  They share a love of Harry Potter and Percy Jackson.  I often joke that if she suggested he jump off a bridge, Ryan would do it no question because the request came from Grace.

2.  That he wanted pets.

During Ryan’s first open communication with another student, Ryan expressed that he wanted “many pets.”  I never grew up with pets.  Living in a home with 7 kids, my mom said that we didn’t have room for any.  I never considered myself a pet person, but since we waited for 8 years to really hear what Ryan wanted in life, we had to make this happen.  We started small with Betta fish.  After we moved to Texas, I got him on the waiting list with Canine Companions for Independence.

Ryan loves Freckles.  He has recently been showing outward affection to her by laying down on her and patting her back (a bit hard at times because he is excited) and running around the house with her.  She is one of his 5K running partners too and has said that FRECKLES HELPS ME STAY WITH YOU MOM.  She is a member of our family and we can’t imagine our family without her.

3.  That he wanted to be an athlete.

Ryan is a runner.  Most autistic children are not too involved with sports.  Ryan had expressed a desire to play sports, but with his motor challenges, it seemed like he had limited options.  One day, I suggested that he might try running.  And (gasp) I offered to run with him.  I am not sure what I was thinking when it came out of my mouth.  I couldn’t take it back and he bit.  I was in for it.

The past four months of training and running in 5 5Ks (we do a 4 mile on July 4th) has been nothing short of amazing.  I have watched him persevere and push himself so hard to finish.  Every time we go out for a race, I am proud of him.  He is an athlete.

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Crossing the line for the Memorial Day March with Freckles and Mom.

4.  That he wanted to ride a bike.

Early on, during a lesson with Lenae Crandall, Ryan expressed an interest in learning to ride a bike.  I stored this in the back of my mind, but I thought that this was an unreachable goal.  You see, Ryan could not even pedal forward on any bike–stationary or training wheels.  He could not get his brain to tell his legs to pedal forward.  Randy and I would hunch over and push his feet to try and get him to do the motion.

Fast forward to August 2016.  I was able to get Ryan into the I Can Shine Bike Camp in Richardson, Texas.  This camp was unbelievable and we took the skills that he learned there and practiced every day until he could ride by himself.  Stopping is still a challenge, but just two years ago, I would have never dreamed that Ryan could ride a bike independently.

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Night Ride.

5.  That he wanted friends, because, you know, kids with autism are in their own world.

Ryan has three best friends and several close friends.  Before RPM, he was trapped in his own world.  Now, he spends time with his friends in person and via Skype or FaceTime.  Just this past weekend, his local friend Diego came over to swim in our pool.  On July 4th, Ryan will get to meet his friend Josh that he met during an online class of RPM students.  Josh’s family is traveling across the country and is making a special stop so that the boys can meet in person.  Our family has made two trips to Canada to see two of his best friends.  Ryan misses his friends and is often sad when he does not get to see them.

6.  That he loves reading.  No really, he loves reading.

I cannot underscore this enough.  If Ryan had his way, all of his free time would be spent reading books with me.  We have read hundreds of novels.  That is not an exaggeration.  If our family had never pursued RPM, I am not sure that I would be reading at all to Ryan.  That is almost embarrassing for me to admit.  Actually it is.  I did not think that he was interested in books.  I should have known better because he loved (loved) books as a toddler.  Sadly, that is about the time when the reading stopped as therapies became our life.  When we began RPM, I had not read to Ryan in a very long time.  Now, I cannot imagine going a day without reading with him.  On a side note, I have a love for Middle Grade Fantasy novels too.  (Book nerds rule!)

7.  That he could and should get a Fair and Appropriate Education.

Before RPM, Ryan was matching colors and coloring in cartoon toothbrushes and toothpaste in school.  Now, he is learning poetry, history, middle school math, and so much more.  I challenge anyone to tell me of other nonverbal autistics receiving this type of education who are not learning with RPM.  RPM is not a communication method.  It is an educational method and communication is a by-product.  The foundation for RPM is academics and we strive to do RPM academic lessons daily.

8.  That he wanted to talk to people, lots of people.

Without RPM, Ryan would not be the autistic advocate he is today.  Even though he is nervous to speak in public, he does it.  He has spoken in front of parents of autistic children and students at a university.

Even though he is nervous to interview people, he does it.  He has interviewed his Mayor, State Senator, Firemen, Policemen, and employees at his favorite store, Home Depot.

Ryan was even featured on television.  He put himself out there, under the scrutiny of thousands.  That would be nerve-wracking for anyone.

Ryan does these things because he wants to and they are important to him.

9.  That he wanted to attend church and make his First Holy Communion.

Ryan has spoken about his relationship with God.  His loneliness is hard to imagine, but God has always been there for him.  Ryan now attends Mass every Sunday and he made his First Reconciliation and First Communion last year.  This is a dream come true for our family.  This would not have been possible without RPM.

10.  That he wants to be treated like everyone else.

Ryan is a regular 11 year old kid.  As you read above, none of what was written is outside of the realm of what any kid would want.  Before RPM, the experts told us things like “he doesn’t understand” or “speak in short phrases.”  I guarantee you that there is nothing wrong with Ryan’s hearing or understanding.  Ryan wants to be treated like everyone else and that is what he wants for all autistics.  He will continue to advocate for his peers to ensure that they have the same opportunities as he does.

I could go on and on with this list.  You get the idea though.

As I always do, I asked Ryan if he wanted to contribute to this post.  He spelled:
MOM, I AM TOO MOVED.  I THINK IT IS GOOD TO LEAVE IT AS IS BECAUSE IT SHOWS MY ACCOMPLISHMENTS.  REALLY LOVE IT.

Everyday, I am so thankful for Soma and the other RPM providers, especially the ones who have helped us and continue to help us on our journey:  Erika, Lenae, Jackie, and Adriana.  These providers would not be helping so many families if they listened to ASHA’s position statement.

I am thankful for the parents that I reached out to along the way when things got rough.

I am also thankful for Ryan’s hard work and perseverance that has gotten him to the place he is today.  And lastly, this was hard for me and sometimes it is still hard, but I’m thankful for all the work that I put in.  Boy has it been worth it.

So now you can see why I have such a difficult time swallowing this statement from ASHA.  RPM is so much more than a letter board.  RPM is a better life.

When this idea popped into my head in church, I spoke to Ryan about it and we agreed to go for it.  We hope that you find it helpful.  I want to leave you with one last thing.

The statement from ASHA includes the following:

“…the potential harms that arise as a result of using RPM include harms associated with lost opportunity to access other evidence-based interventions and harms to the individual associated with their loss of communication rights…”

My position statement is that Ryan would have been harmed if we had not pursued RPM.

That is the truth.

Answering a Question, a Hair Cut, and a Science Project

When we first started the blog, Ryan wanted to answer some reader questions.  He did this, and recently, he received a new question from a family member.

She asked, “Ryan, I recently encountered a young man who appeared to have autism.  I wanted to say something to him to show him that I understood a bit of what he was going through.  I didn’t know what to say.  What would be a good thing to do in this situation?”

REALLY KNOW THAT IT IS NOT NECESSARY TO ACKNOWLEDGE AUTISM, BUT MORE IMPORTANT TO SPEAK TO US NORMALLY.  MOSTLY BEING KIND BUT NOT TREATING US AS BABIES IS ALL WE NEED.

I thought that this was a good answer, but she (the family member) thought it was a great answer and very eye-opening.  I guess that this is what I assumed he might say, but she did not realize this.  Because of this, I thought that this was important to share here.

*****

On Monday, Ryan and Grace both went to get hair cuts with Ms. Susan, of Susie’s Family Cuts.  Ryan has been going to see her since we moved to the DFW area almost 3 years ago.  She has her own private room (with a door) in a salon and is very experienced with kids with sensory issues.  She is extremely patient and does an excellent job with both Ryan and Grace.

The morning that they were both scheduled to get hair cuts, Susan texted me to tell me that the appointment before Ryan and Grace was having a hard time so it might be loud. I thanked her and we headed her way.

Once we got there, as soon as we walked into the salon, we heard the little boy wailing and screaming.  This appointment was on a Monday, so the salon was virtually empty.  I told Grace and Ryan what Susan had told me (forgetting to tell them while they were in the car) and asked them if they wanted to wait outside or to walk across the street to the 7-Eleven for drinks or snacks.  Grace said that she wanted to go outside.  I placed the letter board in front of Ryan and asked him if he wanted to stay and wait or go outside or to 7-Eleven to kill time.

His response:  REALLY WANT TO THANK YOU FOR HELPING ME COMMUNICATE.

Ryan has been in that boy’s shoes.  Hair cuts used to be excruciating for him and for us.  I was always wiped out, both mentally and physically, after getting Ryan’s hair cut when he was younger.  We used to buzz it short all the way around just so we wouldn’t have to do it so often.  It was torture for all of those involved.

Now, Ryan likes looking good.  He has a say in how he gets his hair cut.  He still doesn’t love it and it is still hard for him.  But now, he can ask to sit or stand or take a break or go second, etc.  He enjoys the private room.  He knows Ms. Susan and knows that she is patient with him and that she talks to him like any other 11 year old.

So when he responded with that statement to my question, I couldn’t help but get teary-eyed and smile at the same time.

We ended up going to 7-Eleven and then we did the hair cuts.  Grace went first (because Ryan asked to go second).  He was having a harder morning that day and said NOT SURE IF IT IS GOING TO HAPPEN TODAY.  I pushed him a little because I wanted to be conscious of Susan’s time and Ryan’s hair was super long (and he wasn’t tolerating his bike helmet due to the heat of his hair and the helmet and the 100 degree weather here in DFW).  He also mentioned that HAVING STOMACH ISSUES TODAY.

I knew that it might affect his ability to tolerate the hair cut, but we went for it.  He did amazing and sat very well.  The hardest part for Ryan is the edging.  It is extremely difficult due to his sensory issues.  Lately, Ryan has been going into fight or flight mode a bit more quickly and frequently than he used to.  When Ms. Susan tried to start the edging, he tried to slip out of the chair.  I helped him stay there and held his head so that Ms. Susan could go as fast as she could.

Ryan ended up accidentally pushing her because of his fear.  He is a lot bigger and stronger now and is not usually aggressive.  This happens when he is afraid of getting hurt.  I apologized to her and she said, “Stephanie, it happens a lot.  Some of the kids are a lot bigger and stronger than Ryan.  It is fine.”  Again, another reason that we go to see her.

After the hair cut, Ryan looked amazing.

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I asked him what he thought.

REALLY SORRY FOR PUSHING YOU MS. SUSAN.

She appreciated his apology and said it was not necessary.

I know that Ryan feels bad when this happens.  I thought it was important to share this because this is the reality of autism as well.  Ryan is such a sweet boy and does not have a mean bone in his body.  It is hard sometimes.

As always, I run the blog post by Ryan before posting it.  Here is what he had to say:  HAPPY TO THINK TI WILL HELP FAMILIES.  HARD TO HEAR IT THOUGH.

*****

Ryan recently participated in the RPM Homeschooling Virtual Science Fair.  He and I completed an RPM lesson on Enzymes and we then did an experiment called Elephant Toothpaste.

Here is the lesson that we did:  RPM–Enzymes Science Fair–Middle School

Here are some pictures from the final product.  Ryan hand wrote all of the titles and he helped me cut and glue everything on the board.  As you can see from his face, he was very proud of his hard work.

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The results from the fair should be up soon and we will share them with you when they are posted!

So that’s a wrap on fifth grade.  I feel like Ryan is much older than a fifth grader.  Perhaps it is because he is tall or that he is mature or that we do higher grade curriculum at times.

On to Summer fun!  We will keep you posted on all of our Summer happenings!

 

More Races, The North Richland Hills Dog Show, and a Fun Event

It has been a busy month of May for us so far.  Ryan, Freckles, and I ran in another local race in which we posted about on Facebook.

I was worried during and after this race.  The hills made it very difficult.  Ryan ran the entire first mile, but then had trouble after that.  At one point, he sat down during the race.  It is hard to know how much to push Ryan.  I do take his letter board every where we go, but to be able to spell at your thoughts in that type of situation is very difficult and tiring.  I also worry about the possibility of seizures.  I don’t think that I will ever stop worrying, but I do feel like I am pretty in tune with Ryan as to know how much to push him.  He wants to do these races and I have to remember that our only competition is ourselves.  The competitive person inside me thinks that we need to go for a personal best every race.  The realist in me tells that person to be quiet and know that every race that we run, Ryan, Freckles, and I are getting healthier and stronger.  Ryan still loves races and he is giving it his best.

I found out this past week that we actually ran more than a 5K that day.  I couldn’t figure out why that there was a discrepancy between the distance and my Fitbit.  I mentioned this to Randy on the way home from the race.  Well, a friend of mine has a son who is in the Keller High School Band, one of the participating bands from the event.  He and his dad ran the 5K.  My friend Stephanie told me that her husband said that it was the hardest 5K that he ever ran.  She also told me that the police were using a different map than the official course map and that everyone ran more than a 5K.  I knew it!  I mentioned in the video how there was an area that was poorly marked.  I also struggled with how different our time was from the last race.  I attributed it to the elevation, but we really didn’t too badly.  This was validation and I shared this with Ryan.

We attempted to run another race this past weekend.  This was called the Fort Worth Blacklight Race.  Our family was excited about this night time race.  Well, to say that we were disappointed would be the understatement of the year.  It was extremely poorly organized and the course was very dangerous.  Due to this, we did not even make it a mile before deciding to leave (after waiting for an hour to be allowed to start the race).  If you are interested in the full story, I would be happy to send you a private message containing the content of the email that I sent to the organization after the race.  I would never, ever recommend this race or the organization that put the race on.

I spoke to Ryan about it as I feared it might turn him off from doing future 5Ks.

POORLY RUN.

“Did you mean that as a pun?”

YES.  WE ARE COOL TO DO MORE RACES.

“Thank goodness.  Ryan, you were so calm and patient.  I can’t believe that you were okay with waiting so long for the race to start.  How did you remain so calm?”

HARD TO TOTALLY BE CALM BUT I FOUND IT FUN TO BE THERE.

So there is the silver lining.  For the sake of being a positive person, I will leave you with the following cute picture (at least we got that).

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I have renamed this race the “Bad” Light Run.

*****

Let’s talk about a well run event.  We entered Freckles into the North Richland Hills Dog Show.  Our whole family went to support Ryan and Freckles.  There were several events.  Freckles was entered into the Best Big Dog, Best Groomed, and People’s Choice events.

We are proud to report that Freckles placed third in Best Grooming!  This was our first time attending a dog show and we were thrilled with this.  Personally, I think that she should have gotten first, but I am a bit biased.

Here is what Ryan had to say about the event:
FOUND IT AWESOME.  I AM SO PROUD BECAUSE FRECKLES WON THIRD PLACE FOR GROOMING.  SHE IS A BEAUTIFUL DOG.  UNDERSTAND, MOM, GOING TO REALLY COOL EVENTS IS SO AWESOME.  I AM TOTALLY BOUND TO LOVE IT.

*****

Speaking of cool events, for the second year in a row, we attended the Liberty Elementary School Carnival.  Grace had School of Rock practice that Friday night, so we got to the event a little bit late, but we made the most of it.

I sat down with Ryan to talk about this event.

“What did you think of the foam pit?”

REALLY AMAZING.  TOTALLY FAVORITE OF MINE AT THE CARNIVAL.

“What did you think of the carnival overall?”

REALLY LOVED THE CARNIVAL.  I AM ALWAYS HAPPY TO BE INCLUDED.

So this is the second time that Ryan has mentioned being happy to be included.  I asked him,”Why do you feel it is necessary to bring that up?  Are you concerned that you won’t be included?”

I MENTION IT BECAUSE I AM WORRIED THAT SOMETIMES I WILL BE LEFT HOME BECAUSE OF MY BEHAVIORS.

“Is it because you perceive the behaviors to be weird or hard for me to handle or something else?”

HARD FOR YOU TO HANDLE.

“Well, I try to include you in every experience that I can.  You don’t get to see your friends as often as either of us would like and I want you to have every opportunity to do fun things whenever possible.  Please don’t worry about that.  Even if it is hard, I am willing to do it.”

HAPPY TO HEAR IT.

“I think that you are doing amazing at all of these events, Ryan.  Really, you have made so many strides in the past few years.”

THANKS MOM, I HAVE A LONG WAY TO GO STILL.

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Ryan, Stephanie, Grace, Randy, and Granny after Grace’s Reading Olympics Ceremony where Ryan sat through the whole thing.

The Mythbusters and Some More of Ryan’s Writings

Last weekend, Ryan and I participated in a panel discussion with two other families to talk about our experience with Rapid Prompting Method.

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This was our second TACA event and the turnout was good despite the rainy, cold day.  Randy and I had to split parent because Grace had her midseason School of Rock show in Dallas the same afternoon, so it was just Ryan, Freckles, and me.

Ryan, Austin, and Kaegan dubbed themselves as The Mythbusters and each family talked about their journey with RPM and how it has enriched their lives.

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Austin, Mary Lynn, and Dan in the left square, Odel, Josha, and Kaegan in the middle, and Stephanie and Ryan on the right.

After that, the students and parents took questions from the audience.  This lasted just over 2 hours and it was a big success.

It was amazing to hear the stories of Austin’s and Kaegan’s families and how there were some similarities and some differences with all three students and their journeys.

I asked Ryan how he felt about the event.

CAN REALLY THANK ALL OF THE PARENTS FOR COMING.  I LOVE TALKING ABOUT MY EXPERIENCE.  MOSTLY I THOUGHT IT WAS GREAT.  WE ARE GETTING GOOD AT THIS, MOM.

“I think so too, Ryan.  Wasn’t it great to see Austin again after so long?  What did you think of getting to finally meet Kaegan?”

IT MADE ME SO HAPPY TO SEE AUSTIN.  I REALLY ENJOYED MEETING KAEGAN.  I CAN’T BELIEVE HOW MUCH HE TALKS WHILE SPELLING.  (Kaegan is verbal, but his speech is not always reliable and he often scripts movies or shows while pointing on the letter board.)  JOSHA (Kaegan’s mom) IS GREAT.  SHE IS LIKE YOU AND MARY LYNN (Austin’s mom), MOM.

“What did you think of the turnout?  I was a bit worried due to the weather.”

THE CROWD WAS GOOD AND BOUND TO SEE SOME FAMILIAR FACES.  (There were two parents there, Brenda and Revathy, who do RPM with their kids and Ryan knows them and has spent time with both of them.)

“What did you think of Davis, who was there with his mother?”

HE IS MISSING OUT ON RPM.  DEARLY WANT TO HELP HIS MOM.

“I spoke to his mom after the session.  We are connected and I am hoping to help her.  What did you think of Granny and Joan making it to the event?”

THEY ARE TOTALLY AMAZING FOR COMING.

Joan was able to take some action shots for us.

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She also had a super interesting question for the boys.  She asked,” You guys call yourselves the Mythbusters.  What myths do you want to bust today?”

Ryan’s response was YOU CAN REALLY SPEAK TO US LIKE ANYONE ELSE.

Essentially it wasn’t necessarily a myth but a call to action from Ryan.  He does not want to be talked to like a baby or have other autistics spoken to like babies.

Joan and Granny really enjoyed the presentation and hearing Austin and Kaegan’s stories too.

Ryan and I are always willing to share his story.  As all of you know, RPM has made all the difference in Ryan’s life and our family dynamic, and we just want to pay it forward.

*****

Here is some more of Ryan’s creative writing.  He wrote a story with Adriana and two poems with me.  First up is the story with Adriana.

IT IS THE STORY OF THE INNOVATION OF FORT WORTH.

IN THE OLDEN TIMES, MEN TOOK CARE OF THEIR HORSES ON THEIR LAND.  TAKING CARE OF THEIR HORSES TOOK TIME AND MONEY.  ONE DAY, THE MEN DECIDED TO INVEST IN THEIR HORSES.  THEY HAD TO GET THE ONE THING THEY MOST NEEDED.  THEY DECIDED TO GET THE HORSES LOTS OF LAND.

IT WAS THE MOST TERRIFIC DECISION THEY EVER MADE.  IT TOOK THEM ONE HUNDRED YEARS TO SETTLE THE TOWN.  HOW MANY YEARS IS THAT IN HORSE YEARS?  IT IS ONE THOUSAND HORSE YEARS.

THE MEN THOUGHT THAT IT WAS WORTH IT.  SO THEY INNOVATED THE CITY OF FORT WORTH.  LESS THAN TWO HUNDRED HORSES MADE THE TINY CITY.  HORSES DEFENDED THE ENTIRE CITY.  THAT IS THE STORY OF THE TIME FORT WORTH WAS CREATED.

Ryan and I learned about limericks.  A limerick is a silly poem with five lines.  They are often funny or nonsensical.  The first, second and fifth lines rhyme with each other and have the same number of syllables.  The third and fourth lines rhyme with each other and have the same number of syllables.

Here is Ryan’s take on a limerick.

MISTAKEN
by Ryan Curry

SEEMS TO BE ANOTHER
NOT LIKE ANY OTHER
MY MOUSE IS UNDER
A PORTION OF BLUNDER
NO IT’S JUST MY BROTHER

Ryan and I also learned about cinquain poems.

A cinquain poem follows this format:
Title–one word
Description–two words
Action–three words
Feeling–four words
Title (Synonym)–one word

Here is Ryan’s cinquain poem.

FAMILY
AWESOME SUPPORTIVE
LOVES ME ALWAYS
CARING FOR ME ALWAYS
EVERYTHING

*****

We run our second race of the year this weekend.  Be on the lookout for some pictures on our Facebook page!

Autism Awareness Month and the 5K

As most of you know, April is Autism Awareness Month and April 2nd was World Autism Awareness Day.  I shared the following quote and image on the I Am In My Head Facebook Page last Monday, but I wanted to make sure that we shared it on the blog here too.

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Ryan hand wrote the entire thing.  He was very focused and as you can see, he uses very little “stim” or repetitive words in it.  I hope that our followers will accept Ryan’s challenge this month and EXTEND A KIND HEART TO AN AUTISTIC THAT YOU KNOW.

*****

Early last week, when I saw that the temperature for the 5K was likely going to be in the 40s, I had a bit of a panic attack.  I don’t do well in cold weather and some of you may remember Ryan’s song about “THE CURIOUS COLD” and how he does not like it at all either.  I wanted to make sure that Ryan was prepared for the fact that it might be very cold for our upcoming run.  I mentioned it throughout the week and the night before, we sat down in the classroom to talk about it.  Ryan’s response was MOM, I’M TOTALLY EXCITED ABOUT 5K.  LIKE TO THINK THAT A REAL FUN TIME CAN TRUMP THE COLD.

So the next morning, we got ready.  Ryan and I had talked about dressing up for the 5K.  I found awesome Wonder Woman sunglasses and some blue leggings with white stars on them.  Mark calls Ryan “The Flash” because of Ryan’s extremely quick ability to grab things that he wants (we are working on his impulsivity).  I asked Ryan if he wanted to  dress a bit like the Flash for the event.  He replied I LOVE DRESSING UP.  We bought a Flash lanyard for Ryan to carry during the race (he likes carrying lanyards, beads, or strings) and I bought him some Flash socks, which unfortunately he could not tolerate (so they will be mine now as Ryan has big feet and so do I).  I also bought red and yellow hairspray for his hair.

Since it was so cold, we dressed in layers.  Ryan cannot tolerate a hat, gloves, or a scarf, so we had him in two shirts and a coat with a hood.  At race time, it was 34 degrees.  We hung out in the car until the start time, and then we did the warm up with everyone.  The turnout for the event was considerably less than last year and I am 100 percent sure it was due to the weather.  Freckles, Randy, and Grace ran the race with us as well.

Well we started and took off running.  Ryan ran and ran.  I was sure that we would have to stop to walk some time soon, but he kept running.  In our C25K training, we only made it to the end of week 4 and the most that we had run before walking was 5 minutes.  On the day of the race, we slowed down to grab water and I looked at my watch.  It read 9:20.  The race started at 9:00, so we had run for 20 minutes straight.  I honestly couldn’t believe it.  After a sip of water, we took off running again.

It was freezing.  No seriously, it was freezing.  My fingers felt like they were going to fall off (I am not sure why I did not think to bring gloves for myself). Both of our noses were running and my eyes were streaming tears from the wind.  We kept going.  We passed people.  Like a lot of people.  I could not believe it.

As we got to about 3/4 of the way done (I think), Ryan started to struggle.  We walked a bit, but then ran again.  He began crying as we were running and he could not stop crying.  He has told me before to push him, but I was afraid that I was pushing him too hard.  I honestly was not sure what to do.  It was too cold to stop and we were too far from the finish line.  I just continued to encourage him and keep him going.  We came up to a turn and there were volunteers standing out in the cold, cheering us on.  I kept telling Ryan that they were cheering for us and that we could do it.  I thought that maybe this helped him.  Finally, I could see the finish line in the distance.  I kept telling Ryan that, “There is the finish line!  I can see it!  Can you see it?  We are almost there!  You did it!  You did it!”  As I said this, he stopped crying.  He kept running and seemed to run faster.

We crossed the finish line and Grace was there to greet us (she finished about a minute before us).  I looked down at my phone and it said 9:42.  This was not a timed race, and in all of the chaos of starting the race, I did not keep time.  So we beat our goal of 45 minutes (I think that we could have shaved off more time, but on the second water break, we got Freckles some water and that took some time.)  We then went over to the tables and grabbed water and snacks and that is when I finally thought to get a picture.  My hands were still so frozen that it was hard to operate my phone.

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Ryan was smiling.  Even though it was freezing, he was smiling.  He knew that this was a big deal.

We sat down to talk about the experience later that day, in our warm, heated home.

MOSTLY EAGER TO DO ANOTHER ONE.  CAN REALLY BE SO PROUD OF MYSELF.  BECAUSE IT WAS SO COLD, DEARLY HARD ON ME.

“Ryan, I was worried that you wouldn’t want to do another 5K because of this experience. I am so glad that you do.  Did you want to give up at all during the race?”

CAN REALLY SAY YES.  FEELING SO COLD BUT I STUCK WITH IT.

“Why were you crying during the race?”

I CRIED BECAUSE IT WAS SO HARD TO RUN IN THE COLD.

“Was anything hurting you during the race?  I was a bit worried that you were in pain.”

NO.

“What did you think about passing people in the race?”

IT FELT EXHILARATING.  WE PASSED A LOT OF PEOPLE.

“We sure did.  What did you think of the people cheering us on?”

IT HELPED ME.

“Why do you think that you could run for so long when we hadn’t trained like that?”

I WAS SO MOTIVATED, MOM.

“How did you feel once it was done?”

RELIEVED.

“Did I push you too hard?”

I REALLY APPRECIATE PUSHING MOM.  YOU TOLD ME FINISH LINE WAS CLOSE SO IT MOTIVATED ME TO GO FASTER.

“Do you really want to do it again?  Like train and then run another 5k?”

REALLY YOU CAN TRAIN WITH ME?

“Yes of course.  I felt better when we were running vs. walking.  I was tired when we walked and in the beginning, you pushed me because I was sure we were going to stop and walk but you kept running!”

CAN DO IT AGAIN SOON?

“Sure.  Let me look into finding some more races.  I know that there is one in a few weeks where the high school band will be playing songs along the raceway.”

YOU CAN RUN WITH ME EACH ONE?

Yes and of course Freckles can.

FRECKLES IS AMAZING FOR RUNNING WITH US.  SHE HELPS ME STAY WITH YOUR PACE, MOM.  I AM SO HAPPY TO HAVE HER.

“Me too.  She is awesome.  Do you think that running is good for autistics?”

I THINK IT IS SO GOOD FOR AUTISTICS BECAUSE ANY TYPE OF EXERCISE IS A GREAT THING.

“Last question, why do you like running so much?”

CAN REALLY SAY I AM AN ATHLETE NOW.

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I took this picture after a training run two weeks ago.