A Letter, a Scary Story, a Poem, and a Song

This has been a difficult Fall so far. I was out of town for the past 5 days due to Ryan’s 2.5 year old cousin, Bobby, (my nephew and Godson) being diagnosed with High Grade B Cell Stage 2 Lymphoma last week after a tumor the size of a racquetball was removed from his abdomen via emergency surgery the day before Thanksgiving.  He is on the road to recovery, but it has been a difficult and stressful time for all of our family.  It will continue to be very difficult for a few months but his prognosis is very good.

While I was away, Adriana had 2 sessions with Ryan.  In the first one, he wrote a letter to Bobby.  I did not want to post it on the blog because I thought that Ryan would like to keep it private, but he wanted it posted.  Here it is.

TO REALLY TERRIFIC, NICE, GREAT, GODLY COUSIN,

I’M THINKING OF YOU.  HOPE THAT YOU’RE HAVING FEELINGS OF GREAT STRENGTH.  MISS YOU.  HAVE MANY, MANY, PRAYERS.  HAVE MANY, MANY, HAPPY THOUGHTS.  I THINK THAT YOU ARE SO STRESSED, TRY TO THINK GOOD THOUGHTS.  I NEED TO HAVE THE OPPORTUNITY TO HUG YOU.  THE ONLY THING I CAN DO IS MAIL YOU THIS MESSAGE.

TONS OF LOVE,
RYAN

You can follow Bobby’s journey on Facebook here.

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Ryan wanted to share with all of you a scary story that he wrote with Adriana recently.  He wrote this after a lesson about the Mayans.

THERE ONCE WAS A MEAN GOD WHO ALWAYS TRIED TO GET LITTLE KIDS IN TROUBLE.  THE MEAN GOD HAD TO TRICK THE HAPPY CHILDREN SO THEY THOUGHT THAT THE MAYAN PYRAMIDS BECAME A TYPE OF TOY TO PLAY IN.  THEY TRIED TO HAVE THE MAYAN PYRAMIDS TURN INTO A HAPPY CASTLE.  THEN THE CHILDREN MADE A GAME IN THE CASTLE.

THE HAPPY CHILDREN HAD TO MAKE SURE THAT THEY COULD ESCAPE THE CASTLE.  THE CHILDREN TRIED TO ESCAPE THE CASTLE.  THE CHILDREN TRIED TO ESCAPE BUT THEY COULD NOT OPEN THE DOOR.  THE CHILDREN COULD NOT ESCAPE.  THE MAYAN GOD TRAPPED THEM INSIDE THE GODS’ PYRAMID.

THE CHILDREN CAN BE HEARD TRYING TO SCREAM TO CAUSE THE DOOR TO OPEN.
THE END.

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In another recent session, Ryan told Adriana, I HAVE A GOOD POEM.  She asked what it was about.  He spelled:  TREATING MANY RESPECTFULLY.

TREAT KIDS WITH RESPECT
TREAT MANY NICELY
TREAT NO ONE TERRIBLY
NO ONE SHOULD HAVE DISRESPECT
HAVE HAPPINESS
HAVE LOVE
HAVE RESPECT
HAVE HAPPINESS.

Adriana then asked him what he was inspired by.  HAVING RESPECT IS IMPORTANT.  HAPPY TO HAVE RESPECT.

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As most of you know, we have been doing Music Tuesdays around here for over a year now. Ryan’s latest assignment from his music teacher, Ben, was to write lyrics for a Blues Song. We learned a little about Blues music and Ryan wrote some lyrics.  The lyrics follow below and we had a special guest star singer for Ryan’s lesson.  His sister Grace sang the song while Ben played on guitar.  Here is their one and only run through of the song, CURIOUS COLD.

I HATE THE CURIOUS COLD
I HATE THE CURIOUS COLD
TOO MANY PEOPLE LIKE IT I’M TOLD

IT MAKES ME FEEL SO OLD
THE WIND IS SO BOLD
THE WIND IS SO BOLD
THE TIME HAS TAKEN HOLD

MY LIFE IS ON HOLD
I HATE THE CURIOUS COLD
I HATE THE CURIOUS COLD.

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Grace and Ryan.  It is not too “curiously cold” yet in this picture but it is getting there.

Canine Companions for Independence

I know that many of you have been waiting for this post.  I am going to do my best to explain everything and help to answer questions about Canine Companions for Independence.  I thought that it might be best to do it in a question/answer format.  Here we go.

  1. How long did Ryan have to wait for a skilled companion dog?  We began the process in June 2015, right before we moved from California.  We filled out the online interest form, returned the application, had a phone interview, then we had to get a reference letter from one of Ryan’s previous therapists (who had suggested the organization for him), then an in-person interview in January 2016.  Ryan’s name came up on the waitlist for the November 2016 training and the South Central Region for Canine Companions for Independence (CCI) stated that they had a few dogs that would fit Ryan’s needs.
  2. What will a skilled companion dog do for Ryan?  Ryan will be holding a handle attached to the dog’s vest while we are in public.  With Ryan focused on his responsibility of holding Freckles’ handle, he is less likely to be distracted or dart off.  Some temptations for Ryan are displays with ribbons, lanyards, or gift cards.  He also really likes hand sanitizer and we joke that he has “hand sanitizer radar” because he can find a pump any where we go.  Holding the handle helps with this.  It also can help reduce his anxiety in public places by having the familiarity of his responsibility for holding on to her.  Ryan will also have chores for Freckles.  He is helping me feed her by helping me measure out the food, carry the bowl, and he spells the command “OK” to instruct Freckles that she can eat now.  He is helping with the grooming, taking her on walks (which helps both Freckles and Ryan for exercise), playing fetch with her (improving his skills of throwing a ball which is difficult for Ryan), and helping her with training practice (standing next to me while I command Freckles.  Freckles will also help Ryan be more social in the community.  So many children are drawn to dogs, and Freckles has been an “icebreaker” for Ryan in being introduced to other kids his age.  He is now the cool kid with a dog.  This allows Ryan to introduce Freckles and himself and to show kids that he is just like them.  Ryan will also have a friend in Freckles.  She can be incorporated into our homeschooling day, without taking away from our goals and priorities, only enhancing our day.
  3. What is my role?  I am the facilitator or handler for Freckles.  I have to be present at all times when we take Freckles out into public because I am the only one certified as her handler.  Randy and Grace can learn to help with some basic things in the home (like toileting, going for walks, feeding, etc.) but both Ryan and I need to be present if Freckles comes with us on an outing.
  4. What is the training like for a skilled companion dog?  CCI outlines this on their website here.
  5. Why did you choose Canine Companions for Independence?  I had first heard of CCI from a friend of mine named Carrie.  We met at a Local Autism Moms’ event almost 4 years ago while we both lived in the Bay Area.  I met her son’s skilled companion, Tutti, one day when Carrie and I met to hike together.  I think the world of Carrie and she spoke about the organization very highly.  Since we were renting our home in San Jose, it was not a possibility at that time.  As I mentioned earlier, one of Ryan’s therapists, Sarah, also a friend of mine, brought up CCI right before we were moving to Texas.  She thought that it would be a great fit for Ryan too.  Now, if I am being honest, I have never considered myself a dog person.  In fact, my childhood friend Christel and her parents are probably shocked to know that I am a dog owner now as I was a bit scared of their dogs growing up!  I probably would not have pursued a skilled companion dog any further, but Ryan brought it up.  In one of his first extensive exchanges with another RPMer in Wisconsin at an RPM camp, Ryan stated that he “WANTED MANY PETS.”  He also told me later on that he liked dogs but was “LEARY OF CATS.”  Since RPM and Ryan’s ability to communicate, I try to only pursue interests (like bike riding) that he has or at least respect the fact that my interests may not be his interests.  He was very interested in being a dog owner, so I got the ball rolling.  When his name was actually up on the waitlist, although Ryan spelled that he was excited, I could tell that there was more going on.  Later on, he spelled that he was NOT SURE.  TOO NERVOUS ABOUT HAVING A DOG.  It was like it sounded good in his head, but all of a sudden it was going to be real.  This is where I kind of pushed him out of his comfort zone because I was all in.  I knew that this would be good for him and the family, so I explained to him that we would go to the training and that if it didn’t feel right or wasn’t the right time, that we could reevaluate things.  Of course, it turned out great.  The last thing that I want to mention when choosing a service dog organization was that I had actually heard of negative things about some people who received service dogs.  I had heard about poor training, not enough training, raising thousands of dollars to receive a poorly trained dog, etc.  CCI is extremely professional and is free.  It is an absolutely amazing organization that wants their recipients and dogs to be successful for life.
  6. What was the 2 week training like?  It was intense.  And Amazing. And exhausting, both mentally and physically.  We were fortunate to have Ryan’s Granny and Mark attend training with us so that they could help with Ryan in case he could not sit for all of the lectures and hands on training.  This allowed me to focus on the hands on practice and learning the day to day application and the theory behind everything.  This made all of the difference.  We had homework each night.  We had an extensive written exam and a practical exam with the dogs and the recipients at a local Target.  This was stressful!  I had Grace quizzing me the night before on the commands and Granny and Mark watched the kids so I could study (Randy was out of town).  The next day, after the written test (which I am happy to say that I aced–I missed one question which when they went over it with me, I said the right answer but apparently wrote an incorrect one), Mark and Ryan met up with me at the campus for lunch.  Mark brought Ryan after the written exam (so that I could focus on that) and met me in our cabin.  We then walked to lunch, leaving Freckles in her crate (it just seemed easier after the test and I hadn’t seen Ryan all morning so I wanted to focus on him).  Well we got to lunch and everyone else had brought their dogs.  We met another graduate named Archer who had completed the training in September but was going to be graduating with our class.  He was very kind to Ryan and asked Ryan where his dog was.  I saw Ryan’s demeanor start to change and tried to head it off by taking him outside.  We walked to the cabin and he lost it.  He was crying and flailing on the ground and just inconsolable.  I finally was able to ask him what was wrong and he spelled (essentially yelling at me):  FRECKLES SHOULD BE WITH ME ALWAYS!!!  I thought that there was more to this and there was.  He spelled:  I AM TOO NERVOUS THAT I AM GOING TO RUIN THE TEST.  Ryan was worried about the in person test at Target.  I had been mentioning to him for a few days that he needed to try and be on his best behavior for the test so that I could focus on being sure that Freckles was doing things correctly.  I inadvertently added a lot of stress to him.  I felt terrible for him.  I told him that this was my responsibility and that I felt very confident and that I knew that we could do it as a team.  I also told him that we could express his concerns to the trainers.  He wanted to do that.  We headed back to the lunch room and spoke with Maria and Erin, the trainers for the week.  They assured him that it would be okay and that he had nothing to worry about.  For our test, we started at the hospital to perform the elevators portion.  As we walked though the hospital, Ryan saw hand sanitizer and pointed to it and made some sounds, but he continued to walk and hold onto the handle.  When we stopped, I told him how proud of him that I was that he didn’t give in to his impulses.  He spelled:  HAND SANITIZERS ARE ONE OF MY WORST FEARS.  I told him that he was batting a thousand because he was now 1 for 1 against the hand sanitizer.  He was proud of that.  While we were at training, we also met some of the most incredible people and families that I have ever had the pleasure of meeting.  They came from different walks of life and had different stories, but as cliche as it sounds, we were like family by the end of the two weeks.  We all had experienced a major life change during those two weeks, we received a new family member in our dogs.  That experience bonded us for life.  This organization is not just for children with autism.  It is for anyone with any type of disability.
  7. What about the Graduation?  The graduation was wonderful.  There was a graduation brunch before the ceremony.  The recipients and their families, donors and volunteers and CCI staff, and the Puppy Raisers (the volunteers who raise the puppies in their homes until they are 18 months old and then turned into CCI for 6 months of training) all were in attendance.  We met the Puppy Raisers of Freckles, Don and Dawn, who were awesome.  Dawn told us stories of Freckles and gave us a picture book, toys, and collars that belonged to Freckles.  We found out that Freckles loves to swim!  That is perfect for our family!  We were so pleased to know that Freckles was raised in such a loving home.  After eating we saw a slide show of the Graduate Dogs as puppies and the Graduation video that was later shown at the Graduation too.  Then, Sarah McCracken, the Program Manager at the South Central Campus, opened up the floor to anyone who wanted to say a few words.  I was not expecting this.  I turned to Ryan and asked him if he wanted to say a few words.  He spelled YES.  I really didn’t have to ask because if Ryan ever gets the opportunity to speak in front of a large group, he never declines.  A few people spoke and then it was Ryan’s turn.  I was nervous (of course) but he was cool as a cucumber.  Randy held the microphone and I held the board and Ryan began spelling.  To be honest, I don’t really recall what he said.  It was absolutely amazing and I wish someone had caught it on camera.  He got emotional at the end of it (right after spelling the last word) and Randy escorted him outside to compose himself.  Grace immediately popped up and said, “Where did Ryan go???!!”  I told her that Dad took him out since he was emotional and she said with disappointment in her voice, “Ahh I wanted to tell him how amazing his speech was!!!”  Grace is not one to throw a compliment around, so you know that the speech had to be good!  You can see the entire graduation here and below is a clip of when Ryan and Freckles were called up on stage.

     

  8. What does Grace think of Freckles?  What will her role be?  Grace absolutely loves Freckles and Freckles loves her.  Grace is helping me with tasks that Ryan cannot yet do on his own like inspecting Freckles each day from head to toe (examining her eyes, ears, nose, mouth, feeling for lumps or sores, etc. this is the perfect job for Grace’s attention to detail), getting her toothbrush ready with dog toothpaste, and filling up her water bowl as needed.  Grace knows that when Freckles is working, that she needs to act like Freckles is invisible.  The first few days were a bit hard because Grace wanted to treat Freckles like a pet, but I make sure that she gets plenty of time with Freckles when Ryan is not interested and it is working well.
  9. How does Ryan feel about Freckles and how long will the bonding take?  If I could go back in time and ask someone to video Ryan making his speech at the Graduation Brunch, I would.  He summed it up perfectly, but I can’t quite remember what he spelled (probably because I was so nervous).  Freckles is extremely friendly and social.  She has high energy and seeks the attention and affection of others.  I was slightly concerned that since Ryan is not overly affectionate, the bond would take a long time (sometimes it can take a year or longer).  What I have found is that Freckles prefers Ryan to anyone else.  Even though Grace, Randy, and I display more outward affection to Freckles, she still seeks out Ryan before anyone else when she is on “Release” or just playing.  She chases him around, brings him toys and balls (her favorite), and just comes up and tries to lick him and rub up to him.  It is absolutely amazing to watch.  Truly amazing.  Some of the things that Ryan has spelled since the beginning of training:

While at Pet Smart for our second field trip during class, Ryan spelled:  TOO HAPPY TO BE A DOG OWNER AT PET SMART.

When I asked him if he wanted to have her crate in his room, he spelled:  YES TO HAVING HER IN MY ROOM BECAUSE CALLING IT WE NEED TO BOND.  LIKE TO THINK IT IS MEANINGFUL TO SLEEP IN THE SAME ROOM TOGETHER.  After two days though, he decided that he wanted privacy, so Freckles has moved to the living room.

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After an outing at Walmart, Ryan spelled:  EACH TIME WE GO OUT IT IS FEELING MORE COMFORTABLE.

When I asked him if he wanted to go with me to vote, he spelled:  MEANINGFUL TO ME TO GO.  IT IS TOO IMPORTANT.  I then asked him if we should take Freckles (it is still a work in progress to take her out to places but we have really been trying to take her almost everywhere).  He spelled:  KIND OF BECAUSE WE ARE A TEAM SO YES.

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The other day, out of the blue, Ryan spelled:  FINDING IT TOO DEARLY AWESOME TO HAVE A DOG.  TOO LIKING BEING A DOG OWNER.

And he spelled:  MOM I AM ALWAYS GOOD TO HELP PRACTICE COMMANDS.

Another time he spelled:  TOO HAPPY TO SPEAK WITH MY DOG IN PUBLIC SOON. (Referring to two upcoming local speaking engagements).

When Ryan and I sat down to have him add to the blog post, here is what he said (which oddly enough, resembles what he spelled at the Graduation Brunch I think!):

CARING TO THANK CCI FOR PROVIDING ME THE OPPORTUNITY TO HAVE A SKILLED COMPANION DOG.  TOO MEANINGFUL TO ME TO HAVE FRECKLES.  HARD TO PUT INTO WORDS.  WILLING TO TOTALLY SAY REALLY KIND OF GOOD TO HAVE A CARING DOG TO “CALLING IT” BE MY BEST FRIEND.  MOM, I AM TOO LOVING FRECKLES.

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I hope that this long summary helps answer any questions that you might have.  Please feel free to let us know if you have any more that we can answer.  CCI is fantastic and if you know someone with a disability, please have them look into it.  I would be remiss if I didn’t at least mention that this organization truly does provide these dogs free of charge and they rely on the generous donations from members in the community and from the time of caring volunteers.  If you want to donate to a worthwhile cause, please check them out.

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Ryan picked out the toy at Walmart, spelling:  TOO FUN TO GET HER A HAMBURGER TOY.  It is now Freckles’ favorite toy.

Autumn Happenings

To say that this has been a busy month would be a complete understatement.  It started off extremely difficult with the unexpected passing of our Uncle Owen, an absolutely wonderful man whom Ryan was very close with.  They had a bond that did not need spoken words and Uncle Owen was so good to Ryan and our family.

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Ryan and Uncle Owen on the Cruise from June 2016.  Ryan was always climbing into Uncle Owen’s lap or trying to get his attention.  They had a special bond.

Our family traveled to Fort Myers, Florida for Uncle Owen’s Celebration of Life this past Tuesday. More about that in a future post.

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Ryan really wanted to go to the Autism Education Summit again this year.  Since I am homeschooling him, I figured that we would use it as a learning opportunity.  He wanted to be an advocate, so his goals were to talk to parents and doctors, possibly sit in on an applicable presentation, and check out the vendors.

Well, he achieved his goals! He spelled in front of his doctor’s wife (who is a Nurse Practitioner) and she said that Ryan “just changed the course of how she is going to help her son because of seeing RPM in person.”  He was invited to write an article for the National Autism Association of North Texas Newsletter and to be a speaker at a local conference in February!  While we were at the conference, Ryan also was interested in trying out a foot bath.  He kept going to that area of the vendors and when I explained it to him he spelled:  MOM THAT IS TOO WEIRD.  Once again, this was not on my radar, but he went back each day to that area.  The kind parents who were running the booth explained how it worked and I explained to him that it wasn’t to treat autism, just to make people feel healthier as it was mostly parents who were trying it out at the conference.  On the third day, he got the courage to do it (again not on my radar but on his).  He was able to sit for 15 minutes.

 

Ryan spelled the following after the three days:  REALLY GLAD THAT YOU TOOK ME.  I asked him about the foot bath.  LIKE IT MIGHT BE GOOD FOR SOME, BUT IT IS TOO HARD TO SAY THAT IT IS NOT MY THING.

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During that weekend, we also got to go to a Rangers’ game as a family (we won’t speak of the postseason).

And we went to another Home Depot Kids’ Workshop which featured the Keller Fire Department.  Two of Ryan’s favorite things collided:  Firefighters and Home Depot!  Ryan was able to interview several of the firefighters and they were wonderful.

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The first week in October we had a behind the scenes field trip at PetSmart.  Why Pet Smart?  Well, Ryan likes animals, and I thought that it would be fun to learn about how the store works.  Ryan wrote:  FINDING IT TOO COOL TO INTERACT WITH SOME ANIMALS.  I asked him which was his favorite.  THE TORTOISE.  Anything else to say?  TOO MEANINGFUL TO ME TO INTERVIEW PEOPLE (He interviewed Jirenia at the end about her job.)  Ryan wrote a thank you card for his assignment.

And the second reason I thought of PetSmart is, if you can believe it, Ryan’s name came up on the Canine Companions wait list!  We will be attending training beginning Monday, October 24th through Friday, November 4th to hopefully bring home Ryan’s Canine Companion!  We will report back when we can about this!

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Ryan’s birthday was October 6th.  This was the year of double digits!  With Uncle Owen’s passing, it was difficult, but having his friends come to his party made for a great distraction.

Ryan spelled with me:  TOO HAPPY TO HAVE A REAL BIRTHDAY PARTY WITH FRIENDS THIS YEAR.

Ryan wrote this story with Adriana the day before his birthday:

ONCE THERE REALLY WAS A MONKEY GOING TO HAVE LOTS OF HAPPY, HAPPY GIFTS.  HE HAD THE MOST INCREDIBLE BIRTHDAY BECAUSE HE HAD CELEBRATED WITH HIS MANY FRIENDS.  CELEBRATING IN THE HAPPIEST, GREATEST LOCATION ON EARTH.  HE HAD GOOD TIME WITH ALL THE HAPPY GUESTS.  LOVED TALKING WITH EVERYONE.  CELEBRATING FELT INCREDIBLE.  CAN’T WAIT TO CELEBRATE NEXT YEAR.

That night, we got home and we opened the presents from the birthday party.  He spelled:  ALWAYS HAPPY TO BE WITH FRIENDS.  I mentioned to Ryan that we would open the rest of the gifts after we went to our family dinner at Chipotle (Ryan’s choice).  He then spelled:  WILL YOU GET MY OTHER GIFTS SO I CAN SEE MY GUITAR?  I was flabbergasted!  He had been asking for a guitar for a few weeks now.  I then said, “What makes you so confident that you are getting a guitar?”  He then spelled:  BECAUSE YOU GUYS LOVE ME TOO MUCH NOT TO.  So even if it was somewhat a demand, neither Randy nor I cared!  This is the type of thing that we always dreamed of!  Of course, Randy got the guitar!

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Today I asked Ryan if he had named his guitar.  I explained to him that a lot of people name their guitars and told him about B.B. King and Lucille.  He spelled:  HAPPY TO CALL IT OWEN.

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So to continue with the birthday celebration week, we met up with more friends the next day at the State Fair of Texas.  We checked out the Sistine Chapel exhibit and walked around the fair.  We played carnival games and I even went on a ride (I have motion sickness often and really hate rides, but I would do anything for Ryan, so I went).  He loved it.  I am glad that I didn’t vomit.

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The State Fair of Texas with friends!

The next day, we went to our first sensory friendly movie theater.  We got to go with friends again!

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Ryan and I have been to the movies before and he has done very well sitting in his seat.  Well, since I had explained the concept of a sensory movie for Ryan (which means that the people are free to roam around and make noise and the lights will be less dim for the theater–it is geared towards people with autism), he took advantage of this and barely sat at all for the movie.  This was hard for me to handle.  After the movie, I asked Ryan what he thought of it and he spelled:  TOO HARD TO PAY ATTENTION WHILE ROAMING.  I felt validated and defeated at the same time.  I know that he wanted to watch the movie so I was a bit sad about this.  After we talked about the experience, Ryan and I decided that even if it is a sensory showing of a movie, he will try and sit in his seat like the regular movies.  I asked him if he wanted to include this in the blog and he spelled NOT SURE.  I mentioned to him that maybe his experience and perspective will help other families and he then thought it was a GOOD IDEA TO INCLUDE IT.

So that is what we have been up to.  It has been a whirlwind and I didn’t even include everything!  We will be sure to blog about our experience at Canine Companions Training as soon as we can.  In the meantime, be on the lookout for some pictures and snippets throughout the next two weeks on our Facebook Page!

The Curry Crusaders and a Story

Last week, Ryan and I went to a homeschooling event at the Perot Museum in Dallas, Texas.  The website states:

Home School Family Science Day allows parents and students to explore the Perot Museum’s 11 permanent exhibit halls, engage in a variety of hands-on activities and exercise their brain through interactive kiosks and educational games.

Nine stations will be set up throughout the Museum that offer activities that provide learning in scientific principles from a range of fields including chemistry, physics, biology and geology. From fossils to the expanding universe, you and your student will have a blast learning about the many different fields of science, technology, nature and more! 

The event that we went to was Crack the Case, Forensic Family Science Day.  We were going to have the opportunity to be crime scene detectives!  We called ourselves the Curry Crusaders!

We got there around 10:20am (the event was scheduled from 10am-1pm).  We started in and went to the first station.  Ryan did fine, but what I noticed was that there were nine stations with usually 2 people running the station.  The problem was what I overheard: that there would be 300 students coming through.  This resulted in a lot of traffic and long lines for each station.

I was frustrated.  It seemed to be a bit disorganized. On the other hand Ryan did not seem to mind at all.  He was as cool as a cucumber.  We made it through all of the stations.  There were a few that were difficult for him, so I tried to help and facilitate when I could.  He spelled WE MAKE A GREAT TEAM.

As we went along, we wrote down our notes about who we thought did the crime.  At the end, I was trying to figure out where we were supposed to submit our guess.  Ryan and I came up with the following answer:  THEY ALL PLAYED A ROLE IN IT.

We still couldn’t figure out where to submit our guess.  We ended up asking one of the stations with the friendliest volunteer (she was very kind to Ryan during the blood type sample station) and she did not know.  We asked at one more station and two museum workers and they did not know either.  I was getting irritated by this point.  We had been there for almost 3 hours.

Finally we were told to submit our answer to the place that we checked in.  As we were doing that, the kind volunteer found us and reiterated the same thing and she wanted to be sure that we knew where to go.  She also added that there was “no real answer” and that it was up to the student to figure out the ending.  This was just wrong to me.  I assumed that there was a real answer (almost every clue pointed to a different suspect).  This reminded me of “everyone wins” kind of events and I just don’t really care for those.  I guess that I am a bit competitive.

Due to the chaos and juggling our stuff, the letter board, and our evidence sheet, I never got any pictures inside.  This is one that I took on our way out.

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I’ll be honest, I wasn’t sure what Ryan thought of the event.  I was worried that he did not enjoy it.  I asked him his thoughts once we were home:

REALLY WITH YOUR HELP, I MADE IT WORK.  UNDERSTAND WISHING TO DO MORE REALLY COOL ACTIVITIES LIKE THIS.  TOO COOL TO PARTICIPATE IN THEM.  MOM, I AM KIND OF HAPPY TO GO ON FIELD TRIPS WITH YOU.

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Ryan learned about Thomas Edison with Adriana Barriga last week.  He told Adriana that I HAVE A STORY at the end of the lesson.  She asked him what it was about and he replied HAVING THE WETTEST SUMMER.

THERE ONCE WAS A MAN NAMED THOMAS.  THOMAS MADE INVENTIONS.  THOM TORE SOME WET CLOTH.  THEN THOM HAD MORE TORN CLOTH.  HE TOOK THE TORN CLOTH OUTSIDE, LETTING THE TORN CLOTH DRY.  THOMAS GOT THE DRY TORN CLOTH, TOOK IT INSIDE, BUT REALLY TRIED TO THINK OF A WAY TO EASILY MAKE THE TORN CLOTH STAY WET.  THOM SOAKED THE TORN CLOTH IN THE SINK, THEN TOOK THE TORN CLOTH OUTSIDE.  THE TORN CLOTH HAD DRIED OUT TOO.

THOM REALLY HAD A COOL IDEA TO MAKE THE CLOTH STAY WET.  THOM TIED THE TORN CLOTH TO THE FOUNTAIN.  THE TORN CLOTH STAYED WET GOING INTO THE SUMMER.  THEN THOM TRIED TO SELL INVENTION TO THE TEXAS RANGERS.  HIS INVENTION MADE MISERABLE TEXAS RANGERS THE TOP TEAM IN THE MLB.  THEN THOM BECAME RICH.

TO THIS DAY, THE TEXAS RANGERS THANK THOM FOR THE INVENTION.

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Go Rangers!  AL West Champs!

An Update, Some of Ryan’s Poems, a New Story, and Personal Training

In case you missed it, we posted this on Facebook last week!  So much wonderful progress because Ryan worked so hard!

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Ryan wrote the following poem and story with Adriana Barriga, during sessions in his school week.

HAVING DIFFERENCES IS REALLY HEALTHY

I AM DIFFERENT
AND YOU ARE TOO
THAT IS GOOD
THAT DIFFERENCE IS A FORTUNATE THING
THAT CAN BE A TERRIFIC HELP
I AM DIFFERENT
THAT IS TRUE
I AM DIFFERENT
TO HAVE A DIFFERENCE IS A GRATEFUL THING
BEING THE DIFFERENT ONE IS HEALTHY
HAVING DIFFERENCES DOES NOT HAVE TO BE A BAD THING
IT IS IMPORTANT THAT I AM DIFFERENT.

*****

THE STORY OF THE TERRIBLE LION

THERE ONCE WAS A TERRIBLE LION THAT ALWAYS TREATED HIMSELF TO A MEAL OF A RABBIT. THE LION NEVER HAD TO EAT ANOTHER TINY ANIMAL. THERE WERE SO MANY RABBITS THAT HE NEVER GOT HUNGRY.

THE TERRIBLE LION HAD TO GO AND FIND THE MEAL HIMSELF. CHEWING THE RABBITS RIGHT UP, THE TERRIBLE LION TRIED TO GET SO MANY RABBITS THAT HE THREW UP. THE TERRIBLE LION HAD TESTED THE LIMITS.

THE MORAL IS TO LEARN YOUR LIMITS. THE END.

*****

Ryan wrote these three Haiku poems as a result of an assignment by his music teacher, Ben, to come up with ideas for song lyrics.

INSPIRED
I FEEL FREE RIDING
LOVE TO, IDEAS COME TOO
LIKE A BIRD I AM FREE

ART MEANS TO ME
LOUD TO HEAR, TOO GOOD
HAPPY TO REALLY LEARN ART
MUSIC TO MY EYES

CAPABLE ME
STILL WAITING FOR YOU
MY TRUE MOVING, PLEASING ME
CAPABLE SO MUCH

*****

One of the things that we are working on with Ryan is strengthening his entire body.  Many older autistic RPMers have written about the role that exercise and strength training have played for them.  I connected with Daniel Stein on Facebook and we set up an appointment for an initial personal training session.  We drove almost an hour to meet Daniel and we were not disappointed!  Daniel treated Ryan like any other kid and pushed him but did not push him too hard.  Ryan did great.

He did spell a few times I AM REALLY TIRED but he stuck with it.  I know that this is hard for him, but we discussed the importance of this and once again, Ryan is very motivated to do it.

We will be practicing the exercises that Ryan learned today at home and we will follow up with Daniel regularly.  This is what Ryan had to say once we got home:

I AM INTO PERSONAL TRAINING.  TODAY MOM AND I MET REALLY KIND DANIEL.  HE SHOWED ME HOW TO DO EXERCISES THAT WERE DIFFICULT FOR ME TO DO.  I LOOKED TO MOM FOR ENCOURAGEMENT AND SHE GAVE IT TO ME.  I AM FINDING TOO MANY COOL THINGS AS A RESULT OF HOMESCHOOLING.  I AM HAPPY TO BE A STUDENT OF CURRY CURRICULUM.  I AM LOOKING TOWARDS MY NEXT APPOINTMENT WITH DANIEL.

 

Back to School, Standing for the National Anthem, and a Story

So we have officially been in school for 8 days now and I can honestly say that the past 8 days have been our best homeschooling days yet.  Even though I did not have a student-free week to set up a classroom like most teachers do, I have been trying to make planning a priority.  I am finding time whenever I can to work on lessons and plan out our schedule for the homeschooling day.  I usually do this when Ryan is in the pool, so I am going to have to figure out an alternative teacher planning time when the weather changes!

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The first day of school in pictures!

This year, I am keeping a notebook of a daily schedule for our day.  It is essentially a running list of what I would like for us to accomplish that day and we check it off as it gets done. Ryan gets some say on the order of things. If we don’t get to something that day, we can carry it to the next day. I contemplated a dry erase board, but this way, I can look back at the notebook and see what we did (and not feel as though we didn’t get anything done that day or week!)  I will also be keeping track of all of the books that we read during the year (we have already finished three of them!)

Here is some chicken scratch of our daily schedules.  The words at the bottom of the pages are our 10 dictation words for the day (Ryan spells them twice with me holding the board and once with him holding the board and once with it flat on the table). This is to work on independence.  After consulting with Soma Mukhopadhyay for my follow up session to receive my Introductory Course Certification for RPM, she told me to work on words that are of the same family group via spelling.  This helps with the muscle memory of holding the board on his own.

In addition, Ryan and I are working on some goals for the year. We went over SMART (specific, measurable, attainable, realistic, and timely) goals and how to write them and the two of us came up with a few to start with (we will be adding some more as I think that we need more academically focused ones but I am not big on tests at this point and we only came up with these the past few days). I thought that I would share them with you too.

Goals
1. Ryan and Mom will read 7 novels by December 2016.
2. Ryan and Mom will read 4 nonfiction books by December 2016.
3. Ryan will interview one person weekly for 30 minutes through December 2016. He will select the person and prepare interview questions and actively ask questions during the interview.
4. Ryan will participate in one field trip weekly by helping to pick the venue and following up with appropriate assignment after the trip (thank you card, blog post, report) through December 2016.
5. Ryan will sit at the desk for work (RPM lessons and other work) for 2 hours on classroom days, broken up into 4/30 minute blocks through December 2016.
6. Ryan and another family member or caregiver (other than Mom) will read 3 books together (novels or nonfiction) by December 2016.
7. Ryan will sit to watch television (a documentary, movie, or the news) for 30 minutes at a time without getting up to wander around by December 2016.
8. Ryan will climb to the top of a rock wall at Summit Gym by December 2016.

We will certainly be adding to this list as the year goes on and I am okay with modifying these as necessary.

*****

Today, we did a lesson on the National Anthem and we talked about Colin Kaepernick.  I presented the story to Ryan (trying to not show an opinion either way) and this is what he had to say about it.  He asked me to share it on his blog:

PREACHING TO SAY WHAT HE IS DOING IS WRONG.  HE DEARLY IS MAKING PUBLICITY OFF OF THE WRONG THING.

WE ALL NEED TO SUPPORT TIRELESS EFFORTS FOR BETTER POLICE TRAINING SO THAT THESE INCIDENTS FIND THEMSELVES NO MORE.

*****

Ryan also asked me to share this recent story that he wrote with Adriana:

A LONG TIME AGO A BOY NAMED GARY HAD A MONKEY CALLED CARL. CARL GOT INTO TROUBLE AND CARL BEHAVED BADLY.  BEING HARD TO CONTROL, CARL HAD TO BE GIVEN AWAY.  CARL TRIED TO GET GARY TO LET HIM STAY.  HE CRIED BECAUSE GARY COULD NOT ADOPT HIM.  CARL DID HAVE A CHANCE AT A NORMAL LIFE BUT HE BEHAVED BADLY AND LET CARELESS CHOICES GET IN THE WAY.  HE HAD CHOSEN TO HAVE HIS CARELESS CHOICES CONTROL HIS DESTINY.

THE MORAL IS TO TRY AND HAVE SELF CONTROL TO BE GOOD AND HAVING SELF CONTROL LETS YOU HAVE A BETTER LIFE.

Adriana then asked Ryan if it applied to his own life.

DEAR ADRIANA, CONTROL IS IMPORTANT BECAUSE HAVING IT HAS IMPACT ON HAVING A HAPPY LIFE.

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Enjoying the Rangers game yesterday in 94 degree weather and being in great control of himself.

On a side note, I asked Ryan about the use of the name Carl.  If you remember, he used it for a boy before for a time travel story that he wrote with me.  His response:

GIVING A CODE NAME TO MY ALTER EGO.

Bike Camp and a New Best Friend

I Can Shine Bike Camp was put on last week by the Down Syndrome Guild of Dallas at the University of Texas at Dallas, which is about 50 minutes away from home.  I picked the middle time slot (11:40-12:55) with the hope that we would miss traffic heading there and heading home.  I didn’t really consider the heat factor because I knew that the camp was held indoors.

I found out ahead of time that Lawson, one of Ryan’s friends from Arkansas, had moved from the waitlist to the camp!  They were going to drive in and stay the week in the DFW area for the camp.  The best part, he was in the same session as Ryan!

Randy and I attended the parent orientation on Sunday and we arrived on Monday very excited and nervous.  Ryan was a bit on edge (I could tell) and he got frustrated that the volunteers were trying to adjust his helmet.  One thing that I learned from previous camp/special needs experiences is that Ryan does best with any “gear” that he has to wear if we put it on him right before the time that it is his turn (we tried to do surf camp a few years ago and Ryan could not get past the wetsuit and then the wait and he never was able to get on a surfboard because he could not tolerate the wetsuit).  I mentioned this to the staff and they were on board with this.

We met Regina, Ryan’s volunteer for the week.  She is an amazing young lady who was in her second year of volunteering for the event.  She is one of 8 kids (we had big families in common!) and her youngest brother has Down Syndrome.  He participated in the camp two years ago and she helped him eventually ride independently on his bike and wanted to continue to give back and volunteer.

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Regina and Ryan on Day 1.

Ryan got on the bike that was sized for him and he had some difficulty initially pedaling but he was happy to do it.  I was watching from the other side of the gym, trying not to interfere.  They had mentioned that parents could watch from the second floor of the gym,  so Randy and Grace went up.  I did not feel comfortable being that far away on day one, especially since Ryan needs me to communicate (for now).

Emily, the person in charge of the event, came up to me and asked what motivates Ryan.  She indicated that he wasn’t pedaling and would super heroes or counting laps or anything else motivate him?  I explained that he “is motivated” and his motivation is “to ride his bike.”  This wasn’t a motivation issue, it was a body disconnect.  His head knew what he was supposed to do but his body was not getting it.  She asked if it would help if I walked with him and does he respond to you?” I gladly replied yes.

I walked with Ryan and kept reminding him to pedal and I gave him soft taps on his thighs and feet as physical prompts.  He eventually got it!

Days 2 and 3 saw more improvement.  Ryan was gaining confidence.  He still needed some verbal reminders to pedal and Regina worked on steering with him.  He gained a lot of confidence on Day 2 after riding the Tandem Bicycle.

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On Wednesday, we invited Lawson and him mom Leslie and our local friends Diego (who is an RPMer) and his sister Sofia and mom Daisy over for a pool party. Everyone had a great time enjoying the pool.  Sofia and Grace get along so well and us moms had a great time too.

Day 4 was okay, but I noticed a difference in Ryan.  He had a very serious face most of the session and he seemed to be on the verge of crying.  I asked him what was wrong.

TOO WORRIED ABOUT LAWSON.

Lawson was not on the bike as often as Ryan was.  I have known Leslie for a while now and Ryan and Lawson first met in April, where they had a joint RPM session with Lenae Crandall when she was in town.  He is fluent on the board with his mom and Lenae, but Lawson certainly still had evident anxiety during the sessions.  Ryan is very empathetic and often “feels” too much.  He knew that Lawson was having a hard time, and Ryan wanted to help.

He then spelled:  CAN YOU HELP HIM MOM?

I explained to Ryan, “Leslie knows Lawson best just like I know you best.  Lawson is doing as much as he is able to.  It is wonderful that you are worried about your friend, but please remember that he is okay and to try and focus on yourself.”

We tried to keep going, but Ryan was still distraught.  I held the board again and he spelled STILL TOO WORRIED ABOUT LAWSON.  I asked him if it would help if I asked his mom if he was okay.  YES.

I went over to Leslie and mentioned to her the conversation that I had with Ryan.  She told me to tell him that Lawson was okay and that he was a good friend.

I relayed the message to Ryan and he did better but I could tell it was still affecting him.  He did do well and the tandem bike helped and he was able to go a bit on his own with just Emily spotting the handle.

We went to lunch with Leslie and Lawson after bike camp that day and Lawson was super calm and chill.  Ryan on the other hand was a bit hyper.  Leslie explained to us that this is how Lawson is most of the time and that his anxiety was just getting the best of him at bike camp.

After lunch, we picked up Ryan’s bike from the bike shop (finding the right bike for Ryan was the most stressful part of the week!) and we brought it back to camp.  We then met Leslie, Lawson, and two more friends, Mary Lynn and Austin at a trampoline place called Flight Deck.  The kids had fun jumping around.

Until Mariah Carey came on.  For some reason, Ryan tolerated the music until this happened and then he had difficulty.

IT IS TOO LOUD!

He was able to calm down, but it took a while.

Later that night, Ryan was sad again.  He spelled:  STILL TOO WORRIED ABOUT LAWSON.  I LOVE HIM SO MUCH AND IT IS TOO WORTH IT FOR HIM TO COME HERE TIME AND TIME AGAIN.  Ryan was very emotional writing this.  I believe that he thought that Lawson would stop coming back to the DFW area because of his experience with bike camp.

I messaged Leslie and she reassured Ryan that they would be coming back and that hanging with friends was the highlight of their trip.

The last day of bike camp was here and I was a bit nervous again.  I was hoping that Ryan would be able to focus on improving.

Well we got there and he had difficulty. He saw that Lawson was not able to get on a bike, and Ryan’s demeanor changed.  You could just tell. The volunteers and staff could tell too.  I explained to Ryan that it took me many years to realize that you can’t help everyone and sometimes you really just need to focus on yourself.  I also explained that this camp was the time to do that as opportunities like this are not always available and that he needed to make himself a priority and that it took me until adulthood to realize that it is important to take care of yourself too.

That still didn’t work.

Emily came up to us and suggested that we head outside to practice so that Ryan could just focus on himself.  All of the kids would be heading outside during the session to practice, so we just headed out a bit earlier than everyone else.  Randy and Regina took Ryan out and I had to pay for the handle that was installed on Ryan’s bike so I was a few minutes behind them.

I got out there and I noticed that Ryan was still having trouble.  Randy and Regina were running with him, but Ryan was not really pedaling.  I wasn’t sure if it was because it was his new bike or if he was still having trouble worrying about his friend.  I asked him.

TOO HARD TO CONCENTRATE.  STILL WORRIED ABOUT LAWSON.

So out of sight out of mind does not apply to Ryan.

I had this thought.  I asked him if it would help if we played music.  He spelled YES.

I pulled up Spotify on my phone and cued up Celine Dion.  It started playing and Ryan started pedaling!  He took off and I ran with him with my phone, with Regina spotting him.

It was amazing!

He did fantastic.  He was very proud of himself and we were extremely proud of him.

At the end of the session there was a medal ceremony and Ryan spelled that it was MEANINGFUL TO ME TO GET THE MEDAL.

We had lunch with Lawson and Leslie again and they joined us for another pool party that afternoon, as did Diego, Daisy, and Sofia.

Later that night, I asked Ryan how he was able to get past his worries.

ACKNOWLEDGING CELINE DION FOR THAT.  PLEASING MUSIC HELPED ME.

He then spelled:  A BEST FRIEND ADDED BY ME THIS WEEK.

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BFFs Lawson and Ryan.

 

Another Song by Ryan and the Harry Potter Release Event

Ryan wrote another song this past Tuesday.  Many readers might remember that Ryan has written a few original songs and has a few recorded too.  I  was going to try and collect some sentences and thoughts that he has written recently and have him edit them to come up with a new song, but he spelled: HAVE ONE IN MY HEAD.  When I asked him what it was about, he spelled:  PAIN.

Here are the lyrics to his latest original song, MY CROSS TO BEAR.

GIVING UP ON ME
TOO CAPABLE TO BEAR
WILLING TO LEAVE ME
WITHOUT HOPE

REALLY MORE THAN WORDS CAN SAY
YOU ARE TOO REALLY GIVING
IT TRULY IS
MY CROSS TO BEAR

PLEASE LET ME GO
THIS WORLD IS TOO HARD
LIFE DEARLY IS NOTHING
WITHOUT YOU

GIVING TOO MUCH, I GIVE BACK
MIGHT BE TOO UNBALANCED
WILLING TO RISE UP
IF GIVEN THE CHANCE

PLEASE LET ME GO
THIS WORLD IS TOO HARD
LIFE DEARLY IS NOTHING
WITHOUT YOU

IS TOO LONGING A CRIME?
THEN LIKE TO BE IN
EARLY IS IT
MY CROSS TO BEAR

PLEASE LET ME GO
THIS WORLD IS TOO HARD
LIFE DEARLY IS NOTHING
WITHOUT YOU

RIGHT TOO MUCH
RIGHT TOO WRONG
MY HEAD IS HURTING
MY HEART IS BROKEN

PLEASE LET ME GO
THIS WORLD IS TOO HARD
LIFE DEARLY IS NOTHING
WITHOUT YOU

LIFE DEARLY IS NOTHING
WITHOUT YOU

We are currently trying to find a female to sing this song.  Ben, Ryan’s music teacher, is working on the music for it.  Ryan has described it as a singer like Celine Dion, but the song is HEAVY PIANO and similar to Christina Perri’s song Thousand Years.

If anyone is interested in lending her vocal talents, can your reach out to us?

*****

Ryan and I are huge Harry Potter fans as evidenced by posts here and here.  We have been anticipating the arrival of the 8th Harry Potter book for the past 6 months since we found out about it’s release.  I ordered it on Amazon Prime once it was available for preorder.

A few weeks back, our family went to Barnes and Noble (we like book stores!) and we were walking around.  Ryan noticed the signs for the Harry Potter Release Event and asked me with his letter board:  ARE YOU GOING TO THE HARRY POTTER RELEASE EVENT?  I replied that I had not planned on going since we preordered the book.  I asked him, “Did you want to go?’

REALLY WANT TO GO.

So of course we had to go!

When it was Ryan’s turn to write something on the Muggle Wall, I asked him the question on the wall, “What Harry Potter Means to Me…”  I wrote what he spelled out on his letter board below.

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So we had a great time.  I was so happy to have Granny (Ryan’s Grandma) and Mark’s help because Randy was out of town.  There were a lot of people there and it would have been difficult to manage it on my own with both kids.  When we went to some of the different stations, they had the different Hogwarts Houses there.  Each table had many different sheets of paper with puzzles, games, crosswords, trivia questions, coloring pages, etc. on it.  So picture stacks of papers.  Scattering papers is one of Ryan’s self stimulatory behaviors.  He can scatter hundreds of papers in a matter of seconds (meaning lots of clean up).  At one point, he spelled to me:  I AM TRYING REALLY HARD TO NOT GRAB THE PAPERS.  I told him that I noticed and that I was very proud of him.

There was so much temptation, but he did not do it!

Ryan and Grace stood in line to get “sorted” into houses.  Grace was deemed a Ravenclaw and Ryan (who was confident that he would be a Gryffindor) was deemed a Gryffindor!  It was so much fun!

Ryan and I are currently reading the book now.  I will say it is a tricky book to read out loud because it is written as a play, so each time, I softly say the character’s name before saying what the book says.  It seems a bit confusing, but Ryan says that he is getting it and he has spelled REALLY LIKE IT SO FAR.  I am sure that we will get his opinion once we are finished with the book!

*****

Next week is the I Can Shine Bike Camp for Ryan.  We got him his new helmet yesterday and he has been practicing wearing it.  Be on the lookout for a post after the week is up!

Best Friends Vacation Days 4,5,&6

Friday, Day 4 of our vacation, started with trying to figure out what we were going to do.  Both of the families that we were visiting were not able to join us.  We knew that we didn’t want to do the big trip back to Toronto, but we wanted to explore the area.  When we lived in California, we explored the U.S.S. Hornet and the whole family seemed to enjoy it.  Randy did some research and found the HMCS Haida, a Tribal class destroyer that served in the Second World War, the Korean Conflict and the Cold War and is considered the Royal Canadian Navy’s most famous ship.  So we took the 45 minute drive to check it out.

One of the cool things about the visit was that they give the children activity books to complete different activities aboard the ship.  Grace absolutely loved this and walked around filling it out as we went along and I helped Ryan with his.

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We headed back and met up with Fox and his family for dinner at Boston Pizza (Brayden’s family was not able to join us).  A while back, when we had a Skype session, Ryan had asked the boys:  ARE THERE ANY GOOD RESTAURANTS TO EAT AT?  Fox had recommended Boston Pizza.

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Fox and Ryan waiting for our table at Boston Pizza.

We enjoyed dinner and then we stopped at a grocery store on the way home to pick up items for a picnic lunch the following day for the RPM Friends Picnic.  We were going to meet at a park pretty close to the border so that two RPM families from Buffalo could meet up with us too.  I asked Ryan if he was excited about it and he spelled:  WORRIED THAT IT IS BEING BUILT UP TOO MUCH.  I AM TOO HAPPY TO MEET PHILIP IN PERSON.  I told him that he had nothing to worry about and that it would be fun and relaxed.

Well I was kind of wrong.

That morning, we received a message from Lisa Reyes, Philip’s mom, stating that her husband woke up very sick and that she was not sure if they were going to make it.  Ryan overheard me mentioning this to Randy.  DEARLY SAD THAT PHILIP WON’T BE THERE.  I explained to him that life happens and that we would try to ensure that he got to meet him in person some time.  I also mentioned that he would still get to meet Kaylie and spend time with his best friends Fox and Brayden.  We left to meet up with them.

So one of the super cool things about the picnic was that Fox’s family brought slack lines.  The kids all took turns walking across it and it kept them busy (and in the general area) which was awesome.  Here is Ryan, finishing his first trip across the lines!

Well wouldn’t you know it, as we were finishing up our lunch and slack lining, Lisa Reyes, Philip, and one of her daughters, Leah, joined us!  Lisa’s husband was doing a bit better and they were able to join us for the rest of the day!

We all hung out and then, one by one, we started to congregate on the blanket.  Philip had prepared some ice breaker questions for the group and we had our RPM Friendship Circle where everyone got to chat.

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RPM Friendship Circle!
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Look at all of the cool ways that these kids communicate!
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The bloggers all in one place! Philip, Fox, Ryan, Kaylie, and Brayden.

It was epic!  This is a day that I think that all of the families will remember.  Philip wrote about it here and Brayden wrote about it here.

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Best. Selfie. Ever.

Later that night, Lisa (Fox’s mom), Jen (Brayden’s mom) and I went out for a Moms’ Night Out.  We enjoyed unwinding and talking as best friends too.

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BFFs too!

The next day, we went to explore and have another picnic lunch and do some river walking at Elora River Walk.

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Ryan’s insights:  ONE OF MY FAVORITE PARTS OF THE TRIP WAS HANGING OUT WITH THEM IN NATURE.  I AM TOO LIKING NATURE AFTER THE VISIT.  MEAN TO GET OUTDOORS MORE.

Later that evening, we went for our last hurrah back to Shade Mills Park for a BBQ and some more beach time.  Brayden’s dad, Trevor, brought their canoe with them.

Ryan was so calm in the canoe.  It was actually amazing to watch.  He just gently put his hand in the water as the dads paddled.  He spelled:  TOO PLEASING TO ME TO GO IN THE CANOE.  IT IS VERY RELAXING.

When Grace was out taking a turn with the girls in the canoe, Ryan and I hung at the picnic table with Lisa and Fox’s service dog, Tetley.  Throughout the week, Tetley and Gusto, Brayden’s service dog, came with us on many of our adventures.  I asked Ryan, “So now that you have spent so much time around service dogs, are you excited to hopefully get yours soon?”

He spelled:  NOT SURE.  MAYBE WE SHOULD STAY A FEW MORE DAYS TO FIGURE IT OUT?

I mean how cute is that?  Ryan is so clever and funny that he often catches me off guard with his one-liners.  Lisa and I had a good laugh.

So of course it came to the dreaded time where we had to say our goodbyes.  We were still on the beach and I asked Ryan if he had anything to say to Fox (who was nearby) before we left.

Ryan spelled:  YOU ARE SO SPECIAL TO ME FOX.

Tears were welling up in my eyes.

Then Brayden was nearby.  Ryan spelled:  EACH DEAR DAY HAS BEEN AMAZING.  BRAYDEN, THANK YOU FOR YOUR SUGGESTIONS.  (Brayden had produced a list of must dos for our trip when he found out that we were coming.  Ryan knew this.)  That’s when I lost it and the tears started flowing.

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Ryan spelling out his messages on the beach.

And with that our vacation was over.

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The kids!
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Having fun burying themselves!
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The Moms!
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The Whole Gang!

You know the sign of a great vacation when it goes by too, too fast.  This was like we blinked our eyes and it was over.

When we got home, it was hard for Ryan to write about the trip.  He was very hyper and running all over the place.  I gave him two days to settle down because he kept telling me that:  IT IS TOO HARD TO WRITE ABOUT IT.

When we did sit down, I created a lesson for Music Tuesdays about Best Friends Songs.  We listened to the following songs:  With a Little Help From my Friends by Joe Cocker, Lean on Me by Bill Withers, You’re My Best Friend by Queen, Thank you for Being a Friend which was the Golden Girls theme, and Ryan’s favorite of the bunch:  That’s What Friends Are For by Dionne Warwick, Stevie Wonder, Gladys Knight, and Elton John.  I created a lesson about some of the lyrics and we dissected the songs.  This helped him be able to write about the vacation.

Here are his thoughts:

 

I AM DEALING WITH BEHAVIORS TOO MUCH TODAY.  I asked him “Why?”  BECAUSE TOO MUCH BALLING (bawling) ON THE INSIDE. MISSING MY FRIENDS.

THEY (Fox and Brayden) ARE DEARLY SO SPECIAL TO ME.  MOM, WE COMMUNICATED WITHOUT WORDS NEEDED, LIKE WE REALLY GET EACH OTHER.

MOM I AM TOO SAD.

“Ryan, you guys are friends for life.  Dad and I are friends with their parents for life.  Grace got along so well with Fox and Brayden’s sisters that they are friends for life.  This is not the end.  We will see them again.”

LOVE THAT.  LIKE TOO MUCH WANT TO HAVE ANOTHER VACATION WITH THEM.  LIKE TO SAY THANK YOU FOR THE CANADA TRIP.  YOU GUYS MADE MY TOO MUCH LIFE WITH THAT TRIP.

“Ryan, we had a great time too.  We are so happy to have been able to do it.”

UNDERSTAND I AM TOO WISHING TO SPEND TIME WITH OTHER AUTISTICS.  TOO  MEANINGFUL TO HAVE FRIENDS WHO UNDERSTAND YOU.

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

REALLY TOO SAD TO WRITE ABOUT.  REALLY TOO HARD TO TALK ABOUT MY FRIENDS NOW.  LIKE REALLY HAD TOO MUCH FUN THE WHOLE TRIP.  WILL THERE BE MORE OPPORTUNITIES FOR AUTISTICS TO GET TOGETHER?

“Are you challenging me to organize an RPM family meet up?”

I KNOW MOM YOU CAN ORGANIZE THIS.  TOO MUCH FAITH IN YOU.  TOO COOL FOR IT TO BE AN RPM EVENT.

“Ryan,that is a tall order.  I will do my best to see if I can figure something out for an event like this.  Anything else that you want to say?”

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Ryan, Brayden, and Fox.  Best Friends.

GIST OF IT IS, CALLING IT, BEST FRIENDS A BOY COULD ASK FOR.

 

Passports and Best Friends Vacation Days 1,2,&3

It was December 29, 2015 and we just finished a conversation via Skype with Fox (and his mom Lisa) and Brayden (and his mom Jen) and Ryan wrote:  I AM TOO WISHING TO SEE MY FRIENDS IN PERSON.  I felt sad.  I thought to myself that everyone wants friends, especially ones that they could spend time with.  I said to Ryan, “I wish that you had mentioned that before Christmas so that maybe you could have gotten tickets to Canada for Christmas.”

Later that night, I mentioned the conversation to Randy.  He said, “Why can’t we do that?  He doesn’t ask for anything and we could take a vacation on our own.”  I was so surprised that he suggested it and that he was serious about it.  It was then when we decided to make it happen.

We chose the summer time because, let’s face it, Canada is cold.  I am not very accustomed to cold weather and the summer seemed to make the most sense.  The months leading up to the trip, the boys would spell back and forth how excited they were about the trip.

The day before the trip, Randy went to check us in for our flight online.  He was prompted to put in our passport numbers.  Well shortly before our cruise last month, we realized that the kids’ passports had expired.  We did not realize that they were only good for 5 years as opposed to 10 years for adults.  We confirmed with the cruise line that we were okay to bring their birth certificates as identification.  Well if you follow our blog you know that June was an extremely busy month and I actually did another week of traveling on my own the week of July 4th for my dad’s situation.  There hasn’t been much down time since June 1st.

Anyway back to the check in….I had done some investigating online and all of my research pointed to that we could use the children’s birth certificates to cross the border and back again.  What I failed to realize is that you can do that by air or land into Canada but to fly back to the United States, you need a passport.

On the inside, I began to panic.  On the outside, I kept calm and started making phone calls.  I called the airline to see what we could do.  My thought was that we could change the flight returning to the U.S. to fly out of Buffalo.  I was told that it would be an extra $400 per person to change the tickets.  I then called the Dallas passport office.  I was told that if we could provide proof of travel and all of the required documents and pictures, that they could possibly get us passports for the kids in a day.  Possibly.

Randy came home from work to help and he took the kids to Walgreens to get their passport photos.  Let me tell you, the photos reflect the state of Ryan and Grace’s emotions that day.  Ryan began crying and slapping his head as he had overheard the concerns about the passports.  We explained to Grace what we were doing and she was crying too.

I filled out the passport applications online and got all of the documents and packed some snacks (no time for lunch) and we drove 55 minutes to downtown Dallas, right near where the police officers were slain four days before.  The parking lots were closed off and we finally found some parking.  We got there at 2pm and the office closed for the day at 3pm.

At 4pm, we all breathed a sigh of relief as we walked out with two new passports for the kids.  So here is your trivia fact for the day:  It is actually possible to get a valid U.S. Passport in one day.

Now our vacation could officially begin!

We arrived in Toronto on Tuesday morning with no issues.  We met Fox, Ruby (Fox’s sister), Lisa, Brayden, Hailie and Alexis (Brayden’s sisters) and Jen at a park.

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The only picture that I snagged as I was too busy talking and too excited to get pictures.

Our next move was to check into our hotel.  We got ready for the evening’s events and headed to Shade’s Mills Conservation Area.  Here are some pictures from our awesome inaugural BBQ picnic!

Day 1 was a success.  We were tired and we knew that we had another action packed day the next day.  Oh but I forgot to mention our rental car.

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Driving around in style for the week!

There is a story behind that but I will spare you the long version.  Let’s just say that this was the only car that could accommodate us and our luggage (even though Randy had reserved a big enough car!)

This is what Ryan spelled at the end of the day:  REALLY HAPPY TO SPEND THE DAY WITH ALWAYS CARING FRIENDS.  PLEASE UNDERSTAND THAT I AM TOO DEARLY HAPPY.  IT WAS REALLY THE BEST DAY.  WISHING TO HAVE MORE FUN TOMORROW.

*****

The next day, we got up and met everyone at another outdoor park.  It was hot again (the two hottest days that we were there were the first two days, both with temperatures around 90 degrees).  We stayed at the park a short while and then we went to a local fast food restaurant, Harvey’s, for lunch.

Next up was Rock Climbing!  Ryan was excited to do this with his friends.  We went to a local place and decided to get the family pass and all four of us got the gear on and we were ready to climb.  We hooked Ryan to the auto belay and he started climbing right away!  His best climb yet!  It was like his coordination kicked in!

Well we moved toward the rest of the group and climbed a bit more, but then I could see Ryan’s facial expression change.  It was very warm in the facility because they did not have air conditioning, a man was doing some maintenance/construction on one part of one of the walls and it was loud, and Ryan was wearing gear and shoes that were likely not the most comfortable.  I had just read Philip Reyes’ blog post about meltdowns and I knew that this was the perfect storm to trigger a rare meltdown from Ryan.  He began crying and slapping his head, so I took him to get a drink of water.  I asked him how I could help him.  He was able to spell:  ARE YOU OKAY LEAVING WITH ME?  He knew that I was suited up to climb and that I had never done it before and did not have a chance to before this happened.

I replied, “Of course I am.  Let’s go take our gear off and return it.”  We went up to the front desk and explained to them that we were leaving and they were kind enough to return some money back to us since we were only there a very short time.  Ryan and I walked across the street to Tim Horton’s, into the air conditioning and we got water, iced coffee, and a snack.  I really believe that reading Philip’s post helped prevent the meltdown from lasting a long time (Ryan only cried for like 2 minutes as opposed to 30-45 minutes).

We finished off day 2 at Fox’s house for a family BBQ and Randy met up with some VMware coworkers who happened to be in Toronto for a conference.  Lisa’s brother, Austin, grilled and prepared a feast for us!  The kids got to cool off with sprinklers and they hung out in the trampoline and swing set. It was perfect.  As an autism parent, it can be difficult to take your child to someone else’s home.  I am on constant alert to ensure that Ryan does not accidentally damage anything.  At Lisa’s home, it was very relaxed.  I was able to sit and eat and have a Canadian beer (or two).

*****

Day 3 was our day to explore Toronto.  Ryan spelled the night before:  I BELIEVE THAT AN EXCITING PART OF THE TRIP IS TOMORROW BECAUSE I AM READY TO EXPLORE TORONTO.

We got up and drove to the western part of Toronto and hopped on the Subway.

We really didn’t have a plan.  Randy and I were just talking last night about how it is probably okay to “wing it” when it is just the two of us exploring, but we probably should have put more thought into at least some sort of a game plan.  Lucky for us, Grace came to the rescue.  All of a sudden she blurted out, “Can we go to the Dinosaur museum in Toronto?”  So we headed to the Royal Ontario Museum.

We had not eaten lunch so we got off and tried to find a quick lunch spot.  That proved to be challenging so Randy suggested eating in the cafe at the museum (which we did).  Here are some pictures from the museum.

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We had a blast.  It was a great museum and we spent a few hours there.  Ryan spelled:  WE ARE SO AWESOME.  MUSEUMS ARE THE GREATEST.

Randy and I knew that this would likely be our only day in Toronto (it was a bit of a trek to get there) so we had to go to CN Tower.  We got there (took another train) and saw a pretty substantial line for security.  Randy decided to purchase the tickets ahead of time on his phone and we got through the security line.

We got into the line to go up the elevators and we really couldn’t tell how long the wait was.  I asked an employee if they did anything for children with autism and she apologized and said that they did not.  So we waited in line.

Ryan and Grace were absolutely amazing. We waited about an hour an fifteen minutes before we got into an elevator to go up.  Ryan spelled:  I AM VERY PROUD OF MYSELF.  I was extremely proud of him and so was Randy.  They really were so patient.

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We walked around and Randy suggested sitting down and having a snack and a drink at one of the restaurants at the top of the tower.  It was open seating and we found a seat but as soon as we sat down, Ryan’s demeanor changed.  It was the impending meltdown face.  I had him spell and with tears in his eyes he said:  REALLY HARD TO SIT RIGHT NOW.  CAN WE PLEASE KEEP GOING?

I should have realized this.  It was a lot for him and to make him sit for table service was not a great idea.  We decided to head back down.

The thing that we did not realize once we were at the top was that everyone had to come back down.  Randy and I looked at the line and I knew that Ryan would lose it if he had to wait in another line.  I found an employee named Daniel and I explained the situation to him.  He was so kind and said that he just needed our tickets.  Randy had already rounded the corner to try and find the end of the line so I tried calling him and texting him and he eventually made his way back.  He showed Daniel his phone and Daniel asked if we had any paper.  I always travel with paper in order to write down what Ryan spells.  Daniel wrote “Expedited Exit per Daniel.”  He told us to show this to the employee running the elevators.  I did and we were on the next elevator down.  Crisis averted and I won’t forget Daniel’s kindness.  He must have seen the desperation on my face.  This is the kind of thing that is so touching as a parent of an autistic child.

We finally got back to our car at 8pm that night and went to Canadian McDonald’s drive-thru for dinner in the car on the trip back to our hotel.

Stay tuned for upcoming posts for Best Friends Vacation Days 4-6!  In addition, I promise that there will be plenty of Ryan’s insights on the trip on the next post.