The Zoo and Grace’s Music Program

Keeping up a blog is tough work!  I am sorry that it has been so long since we posted.  I could give a lot of excuses like Randy was out of town for ten days or I have been trying to come up with more challenging lessons for Ryan for RPM for his homeschool (which requires a lot of research on my part) or that helping to maintain the social media for my dad’s situation has consumed a lot of my time, but the truth is, it really is all of the above and there is just not enough time in the day.  I am sure that many of you can relate to this.

In our homeschool, we have recently done lessons on some wonderful topics like different kinds of maps, the pros and cons of Nuclear Energy, Peyton Manning (did you know that he was born with a cleft palate?), Andrea Bocceli, Neil Peart (of the band Rush), Ancient Greece and some Mythology, The Great Pyramids of Giza, the Thyroid gland and Hypothyroidism (Ryan and I are affected by it), the Iowa Caucuses, the artists J.M.W. Turner and Henri Matisse (whose work Ryan was not a fan of, spelling CALLING ABSTRACT ART BOGUS PAINTING).  I am certainly learning a lot alongside Ryan.

After we finished the thyroid lesson yesterday (in which he sat for 45 straight minutes with me, without trying to get up or needing a break), Ryan spelled CAN WE ALWAYS DO CHALLENGING LESSONS LIKE THIS?

Sheesh!  I thought that we were.

*****

A week and a half ago, Ryan and I went to the Fort Worth Zoo.  The weather was perfect and on Wednesdays, there is half price admission.  We got there and started exploring.

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Not a Parselmouth. #HarryPotterForever
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Can you find the cheetah?
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Gazing at giraffes. A lot of them.
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Fish are still fun to watch.

 

But hands down, Ryan’s favorite part was feeding the ducks.  They had the little machines that you insert a quarter into and you get a handful of duck food.  I was slightly concerned that Ryan might try to eat the food, but sure enough, as soon as I put it in his hand and I told him to throw it, he did. Over and over and over again.

Ryan wrote the following once we got home from the zoo:

THANK YOU SO MUCH FOR TAKING ME.  MY FAVORITE PART WAS MEANINGFULLY FEEDING THE DUCKS.

*****

Last night, we went to Grace’s First Grade Music Program at her school.  Ryan has been excited to go for a while.  When we got there, Grace went to the music room with her class while Randy, Granny, Ryan and I proceeded to the cafeteria, where the program was to be  held.  Well, once 6:00 hit, we were informed that they were going to do the PTA meeting first, then the music program.

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Randy and Ryan at the event.

I was concerned.  I was not sure how long that Ryan would be able to sit without possibly being disruptive or just having a difficult time with his body.  I was extremely surprised that he was absolutely amazing the entire time, which was about 50 minutes between the PTA meeting and the program.  I asked him his thoughts immediately after the program ended.

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Grace and the rest of the First Graders at Liberty Elementary School.

I AM STORING UP MY LOVE FOR GRACE.

So we waited until she came out.  He then spelled:  I AM SO REALLY PROUD OF YOU GRACE.

But, in the midst of him trying to spell, Grace’s friends came up and starting being 7 year old girls together:  yelling, giggling, etc.  I could see Ryan struggling a bit, but he did get his message out.

And then he spelled:  SO MOM ONE OF MY FEARS IS KIDS BEING TOO LOUD.

So we quickly went to the Book Fair that they had in the library.  Grace picked out two books and after showing Ryan the different sections (some labeled Grades 3-6 and some labeled Grades 6-8) we asked Ryan if he wanted to get a book.

CAN I PLEASE GET BOOKS FOR OLDER KIDS?

Randy and I thought that it might be a good idea to try the series I Survived, which is based on real life events with the main character being witness to the event that the book is based on.  We decided that since Ryan and I are reading a book for his book club, Randy would read this one with Ryan.  The book that we chose is I Survived The Great Chicago Fire, 1871.

We hadn’t eaten yet, so all five of us headed up to the local Cotton Patch Cafe for dinner.

Now that might not seem like a big deal to most, but Ryan had just sat through 50 minutes at the school and now we were chancing a sit down dinner.  He did absolutely wonderful.  This would not have been possible two years ago.  I would have completely shut down the idea of a sit down restaurant at all with Ryan.

Each night, before bed, Randy and I sit down with Ryan to talk with him and to make sure that he has a chance to say anything that he needs.  Last night he spelled:  MEANINGFUL TO ME TO GO TO GRACE’S MUSIC PROGRAM.

Things just keep on getting better and better and I know that they will continue to do so.

We are very thankful.

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Grace and Ryan at the Dallas Arboretum on Valentine’s Day.

A Few of Ryan’s Original Writings

I wanted to share with our readers some of Ryan’s writing pieces that he has come up with during sessions with providers and me.  If you remember, we have shared some of Ryan’s work before in the story form here and through his first song.  I have included a few of my favorites below, including one from his session today with Adriana Barriga, an intern of Soma Mukhopadhyay, who Ryan has 3 sessions a week with because she is local to us (which is absolutely amazing and Adriana is amazing!)

If you have any doubts about autistics not having imaginations, I hope that this post clarifies things for you.

Session with Soma in Fall 2015

A BUNNY WAS MADE OF JELLO AND KEPT IN A FREEZER. WHEN THE WOMAN WHO MADE IT OPENED THE DOOR OF THE FREEZER, THE BUNNY HOPPED OUT AND REFUSED TO COME BACK.

HE HOPPED OUT OF THE WINDOW AND BEGAN TO GO TO HER VEGETABLE GARDEN.  WHEN THE LADY CAUGHT HIM, SHE WARNED HIM NOT TO GO AWAY BECAUSE HER GRANDSON WANTED HIM. BUT BUNNY ESCAPED.

CHAPTER TWO

A LITTLE DUCK SAW AN ORANGE BUNNY AND FREAKED OUT.  HE THOUGHT IT WAS A MONSTER RABBIT.  IT WAS FILLED WITH STRAW STUCK TO ITS BODY.  NO ONE EXPLAINED TO BUNNY NOT TO GO TO A BALE OF STRAW.

BUNNY’S EARS WERE MISSING.  FINALLY THE DUCK ASKED HIM WHAT WAS WRONG. THE BUNNY WANTED TO GO BACK TO THE WOMAN SO THAT SHE COULD MAKE HIM HIS EARS.

BUT THE ANTS CAME CHASING HIM AND HE JUMPED INTO THE RIVER.  THEN HE WAS GONE!

END.

So here is some important back story on this one…the week before we went to Austin to see Soma, Ryan, Grace and Granny spent time at our house making Halloween cupcakes and orange Jello creations.  Ryan did not eat the Jello but it was obviously on his mind.

*****

Lesson with Adriana, January 2016 on Fables

Ryan was asked to create his own fable with Adriana.  Here is what he came up with:

A RACOON IS HAVING A CHAT WITH A LION.  HE ALWAYS HAD A HABIT OF MAKING FUN OF THE LION.  EACH TIME HE GOT ANGRY AND MADE FUN OF THE LION, IT HARMED HIS FRIENDSHIP.  IT HURT THE LION’S FEELINGS.

ONE DAY THE LION GOT TIRED OF THE DEAR RACOON SO HE OPENED HIS MOUTH AND ATE THE RACOON.

THE MORAL IS TO LOVE YOUR FRIENDS, NOT HATE THEM.

*****

Ryan wrote the following piece in the Fall of 2015 with Soma.  Soma chose it to be in HALO’s collection of students’ stories called Voices, in the Winter 2015 edition.  HALO publishes the work of students on an annual basis and it is very inspirational to see so many different stories from so many brilliant minds.  Here is Ryan’s story that was published on page 18:

WHEN BEN WILLIAMS WAS A BABY HE COULD SING AND PEOPLE AROUND WOULD SCREAM “THUNDER! THUNDER!”  THEN THEY REALIZED IT WAS BENNY!  WHEN BEN WILLIAMS WAS IN PRESCHOOL HE WENT TO A ZOO.  HE SAW A LION, GOT INSPIRED, AND SHOUTED AT ONE OF THE LIONS.  ALL THE ANIMALS LOST THEIR CALLS AND BECAME CONFUSED.

BEN WILLIAMS WENT TO SCHOOL AND FOUND IT WAS RATHER TOO QUIET.  HE BEGAN TO SING.  THE BUILDING SHOOK AND EVERYONE RAN OUTSIDE EXCEPT BEN WILLIAMS.

BEN WILLIAMS GREW UP AND WANTED TO BE AN AMERICAN IDOL.  HE PERFORMED SO WELL JUDGES HAD HEARING LOSS, AND NO ONE WANTED TO CONTINUE WITH AMERICAN IDOL.

THAT WAS BEN WILLIAMS TALL TALE.

*****

Today, Adriana brought a Robert Frost poem for Ryan’s lesson.  She prepared some questions about it, but Ryan kept interrupting with DEAR CANARY.  She asked him to wait until the end of the lesson.  Here is Robert Frost’s poem and Ryan’s letter follows below it:

A Minor Bird

By Robert Frost

I have wished a bird would fly away,
And not sing by my house all day;

Have clapped my hands at him from the door
When it seemed as if I could bear no more.

The fault must partly have been in me.
The bird was not to blame for his key.

And of course there must be something wrong
In wanting to silence any song.

DEAR CANARY,

HAVE MET YOU BEFORE.  I AM THE CANARY.  HARD TO MAKE OTHERS HEAR ME.  MEAN THAT I HAVE A SONG NO ONE CAN HEAR.  THE SONG HAS HAPPY MELODY, HAS HAPPY LYRICS. DEAR CANARY DO NOT ALLOW THE LOTS OF REALLY MEAN PEOPLE MAKE YOU STOP SINGING.

SIGNED,

HAPPY LITTLE SONG WRITER

As a side note, for anyone in the Dallas/Fort Worth area with a child with autism, I can’t recommend highly enough Adriana Barriga.  Her lessons are interesting, age appropriate, and thorough.  She has a wonderful demeanor and is extremely flexible and patient.  We have been on our RPM journey for over 2 years now and I would 100% recommend Adriana to any parent interested in RPM for their child.  Her contact info is ambarriga1990@gmail.com.

 

Grandpa Bob

Ever since Ryan began to openly communicate with his letter board, I have asked him if he has wanted to write anything about Grandpa Bob.  Each time he would spell something like DEARLY TOO HARD TO TALK ABOUT or TOO SAD TO TALK ABOUT IT.  For the past few weeks, about 3 times a week, without any kind of provocation, Ryan would just start crying.  Sometimes it was a few times a day, sometimes it was just once.  The reason was always the same:  SO SAD ABOUT GRANDPA BOB.

We haven’t spoken about Grandpa Bob on this blog until today.  To the readers who are not aware, Grandpa Bob is Robert Levinson, the longest held hostage in American History.  This past weekend, 5 Americans who were held prisoner in Iran were released.  Grandpa Bob was not one of them.  This was devastating to our family, including Ryan.

Today, after watching CBS This Morning featuring Grandma Chris and Uncle Dan, I again asked Ryan if he wanted to write about Grandpa Bob (without trying to be pushy and respecting that it was okay if it was again a “no”).  He spelled  YES.

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Grace and Ryan watching Grandma Chris and Uncle Dan on CBS This Morning.

We sat down and here is how the conversation went:

I gave Ryan some more background.  I talked about the prisoners who had been released.  I talked about how even though Grandpa Bob was not released on Saturday that we have not given up hope.  I asked him what he wanted to say.

DEARLY HARD FOR ME TO TALK ABOUT.

“I understand Ryan.  Please know that we are doing all that we can to keep the attention on the fact the Grandpa Bob has not come home.  Grandma Chris and Uncle Dan are going to be doing a lot more interviews over the next few days.  Aunt Sarah is working on an opinion piece to be published by a major news outlet.  I am still posting on Help Bob Levinson’s Facebook page and Twitter.  Hillary Clinton, Marco Rubio, and John Kerry have all tweeted about Grandpa Bob.  President Obama spoke about him in his speech yesterday.”

CALLING IT DELAYED ATTENTION.  I HAVE SAID IT BEFORE, ESPECIALLY AFTER THE DEBATES.  (Which he has, spelling very angrily after one of the debates, GAPING HOLE IN THE QUESTIONS! THEY DID NOT ASK ABOUT GRANDPA BOB!)

“I agree Ryan.  I am not sure what to say.  We are trying our best now to keep his name in the media.”

ARE YOU GOING TO BE ON THE NEWS?

“Why do you ask?”

GEARING UP IF YOU ARE.

“I have offered to call in for phone interviews or do any interviews via satellite from Dallas. I do have a role though and it is often behind the scenes with the social media portion.  Do you want me to be on the news?”

YES.

“Do you have anything else that you want to say about the Grandpa Bob situation?”

 

DEAR GRANDPA BOB,

I AM RYAN, YOUR FIRST GRANDSON. I AM REALLY SAD, CARING FOR YOU SO MUCH. MY MOM IS ALWAYS TELLING ME STORIES ABOUT YOU. SOMEDAY I KNOW THAT I WILL GET TO SEE YOU AGAIN. HAPPY TO MEANINGFULLY PRAY FOR YOUR RELEASE FROM PRISON. SOMEDAY I AM REALLY LOOKING FORWARD TO GETTING TO KNOW YOU IN PERSON.

LOVE,

RYAN YOUR GRANDSON

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Grandpa Bob and newborn Ryan in the hospital hours after he was born.

 

Please follow Robert Levinson’s story at http://www.helpboblevinson.com and on Facebook at https://www.facebook.com/helpboblevinson and Twitter at https://twitter.com/HelpBobLevinson.

#WhatAboutBob

Ryan’s Take on the Holidays and an Interview with Dad

The holidays were a whirlwind around here.  It was absolutely wonderful to be around family.

As this was the first year that Ryan could communicate with us so fluently, everyone wanted to get him gifts.  I kept trying to get Ryan to come up with a Christmas list, but he continued to spell each time:  BEING AUTISTIC, I DO NOT REQUIRE GIFTS.

Ryan still got plenty of gifts.  When he was asked his favorite ones, he replied:   MY FAVORITE GIFTS WERE THE ROBE AND WAND AND THE REST OF THE SERIES OF (Harry Potter) BOOKS.

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He was also asked what his favorite part of the holidays was.

His response:  BEING AROUND FAMILY.

 

This past week, we started back up with school on Tuesday, when Grace returned to school.  When we sat down, I asked Ryan if he had anything that he wanted to say before we got started.  He replied:  DEARLY HAPPY TO BE BACK TO SCHOOL.

We did a lesson on the history of New Year’s Resolutions (thanks to another RPM parent who created and shared the lesson with other parents in an RPM Facebook group).  As we were doing the lesson, Ryan interrupted (instead of answering the question) to spell:  I HAVE MADE A RESOLUTION FOR THIS YEAR.  I asked him if he could wait until the end of the lesson and remember it then and he replied YES.  At the end of the lesson was the opportunity for Ryan to come up with his own New Year’s Resolution.  He spelled:  MY RESOLUTION IS TO TAKE BETTER CARE OF MY TEETH.  (Coincidentally he had a dental appointment that morning and he was told that he had two cavities.)

******

Ryan is very motivated to spell when he is interviewing someone.  He and I talked about the possibility of interviewing his dad, Randy, during the holiday break.  Ryan was excited to do it.  Here is Ryan’s interview with Randy.

Ryan:  DEARLY INTERESTED IN WHAT YOU DO FOR A REAL COOL JOB.

Randy:  I am a Systems Engineer for a computer software company called VMware.  I am on the technical sales side.  Most data centers use our software. (Randy continued to explain to Ryan about the intricacies of his current position).

Ryan:  WHAT IS A DATA CENTER?

Randy:  Data centers house powerful computers that companies use to support their business as well as cool things like their blogs or internet sites.

Ryan:  MEANINGFUL TO ME.  I AM INTO COOL, CALLING IT, DEALING WITH COMPUTERS.

Randy:  Prior to getting into technical sales, I worked day to day using a software that my company sells.

Ryan:  DO YOU HANDLE CUSTOMER ISSUES TOO?

Randy:  I help connect customers to the best support experts but I am no longer on call for day to day or high severity issues.

Ryan:  YES TO MOVING UP IN THE WORLD.

Randy:  (Laughs) Yes you could call it that.

Ryan:  WE CAME TO TEXAS BECAUSE OF YOUR NEW POSITION, RIGHT?

Randy:  Yes and because of our family being here.  I was burned out on being the expert on non VMware competitive products and I wanted to have a chance to be able to tell customers how great our products are and to be able to be positive about the products we sell.

Ryan:  MEANINGFUL TO ME.  I AM IN SO MUCH RESPECT FOR WHAT YOU DO.

Randy:  My job is not nearly as important as the military, police, firefighters, doctors, etc.

Ryan:  DEEPLY MOVED BY WHAT YOU SAID.  DID YOU KNOW THAT WAS WHAT YOU WANTED TO RIGHTLY DECIDE FOR A CAREER?

Randy:  As a kid I was always interested in how things worked and I was always interested in taking things apart.  As I was growing up, I wanted to do something with technology because I thought that getting into technology made sense for a career.

Ryan:  CARING TO DEARLY DECIDE ON A CAREER IN COMPUTERS IN TEN YEARS.

Stephanie:  (I chimed in here).  Ryan, there are many companies now that are hiring autistics to do work with computers for their company and many of the opportunities are remote which means that you can work from home.  Companies are starting to recognize the talents of autistics and are taking a chance on hiring them.  In Silicon Valley, I know of one mom in particular who has made it one of her missions to help get opportunities for autistics specifically in programming.

Ryan:  YES TO MEANINGFUL TO ME TO HEAR THAT.

Stephanie:  Anything else that you want to ask or say to Dad?

Ryan:  DAD, THANK YOU FOR TALKING TO ME ABOUT HALLMARK CAREER IN COMPUTERS.

And just as he had done when he interviewed his Uncle Ryan, Ryan was very hyper in the beginning of the interview, but about two questions in, he completely settled down and was quiet and sat and listened (very engaged) for the rest of the interview.

Stay tuned as Ryan has a few more interviews lined up in the next few weeks!

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Randy and Ryan putting together one of Ryan’s Christmas gifts, a wooden pull-back car.

Eleven Things to Do When Starting Your RPM Journey With Your Child

I promise that we will be back to blogging soon (hopefully Ryan and I will have a post up before the end of the week) but I wanted to share with you an article that I wrote (and Ryan approved) for the quarterly newsletter for the National Autism Association of North Texas.  I am very honored to have been published in it.

You can find the newsletter in its entirety here.  The article starts on page 8.  I have copied the text below.  I hope that any parents who are looking into RPM for their child find it helpful.

 

Eleven Things to Do When Starting Your RPM Journey With Your Child

These days, my absolute favorite thing to talk about is Rapid Prompting Method (RPM).

“The Rapid Prompting Method (RPM) Definition is

• A method used to teach academics, and communication is also learned in the process

• Designed to activate reasoning part of the brain

• Elicits maximum output from a student by giving rapid verbal, auditory, visual, and/or tactile prompts to access the open learning channel

Presumes competence and comprehension at or near age/grade level in most cases.”

An Overview of Rapid Prompting Method

Halo-Soma.org

My son Ryan and I began our Rapid Prompting Method (RPM) journey in January of 2014.  This has singlehandedly been the best thing that we have done for him and for our family since his autism diagnosis 7 years ago.  For this reason, I wanted to share with all of you 11 tips for what you can do to prepare to embark on an RPM journey for your child.

1.  Find a Provider.

There are several providers across the country.  Your provider does not need to be in your area.  You can travel to see Soma in Austin, Texas or there are several certified providers that offer camps in their home location or they can come to you.  We have done both and it has been very helpful.  I would strongly suggest connecting with a provider before starting RPM on your own with your child.  Here are the certified RPM providers and their websites and contact information.

Soma Mukhopadhyay https://www.halo-soma.org

Erika Anderson http://www.acetc.info

Jackie Dorhorst http://rpmplus.sharepoint.com/Pages/default.aspx

Alexandra Hopwood www.unlockingvoices.com

Lenae Crandall http://heedrpm.com

Katie Anawalt  email: kanawalt@gmail.com

Joanne Bello  email: joannebello@aol.com

Adriana Barriga email: abarriga2@yahoo.com

2.  Read the Books.

Read Soma’s red book, Understanding Autism through Rapid Prompting Method and green book Developing Communication for Autism Using Rapid Prompting Method-Guide For Effective Language.  Read Ido in Autismland.  It will change your perspective and I can guarantee that you will speak to your child differently after reading it.

3.  Get Connected.

Become a member of HALO at https://www.halo-soma.org.  You can order the books and other materials there.  There are many sample lesson plans and other great resources that you will have access to as a member.  Join the “Unlocking Voices” group on Facebook.  Check out the files section in this group to help you get started and watch the videos in the files section.  There is a wealth of knowledge there too.

4.  Read and Follow Blogs by Nonspeaking Autistics.

One of the blogs that I love, http://faithhopeloveautism.blogspot.com has an extensive list of blog written by nonspeaking autistics in their resources section.   Some of our favorites are http://foxtalkswithletters.blogspot.ca, http://lifewithaboynamedbrayden.blogspot.ca, and of course our blog, http://iaminmyhead.com.

5.  Prepare yourself and your child for the amazing change that is going to be taking place.

There is so much that you can do before getting in with a provider or starting on your own.  Read to your child.  Read age appropriate books, not baby ones.  Follow him/her around the house if you have to.  Even if he/she closes the book, open it again and continue.  Start with 5 minutes a day if it is hard.  Put closed captioning on television shows.  Put on Wheel of Fortune and Jeopardy and the news (if it is appropriate content).  Expose your child to real life events and outings, even if it is hard on both of you.  Take him/her to the zoo, museums, parks, restaurants, etc.  Explain and talk to your child as much as you can and as normally and age appropriately as you can.  While walking outside, talk about what you both see, and while in the car, talk or sing.  Play audiobooks on long drives.  Do not talk about your child in front of your child. Ryan has spelled on multiple occasions I AM ALWAYS LISTENING.  This is especially important when you are speaking to doctors, teachers, and therapists.

6.  Prepare an age appropriate academic lesson to do with your child.  

As I mentioned previously, the Unlocking Voices group on Facebook has a files section with sample lessons in and Halo-soma.org has lessons available for members.  Soma also has an orange book called Curriculum Guide for Autism Using RPM which has many sample lessons in it.  In addition to these, I bought grade level curriculum books and then hand wrote all of the lessons to deliver them in a format suitable for RPM.  This was more time consuming than the actual lesson itself but I knew that a key component was for me to be prepared as the teacher and to feel confident.  Of course it was a learning curve for me too as I had never done this before.  I spent a lot of time on the lessons, which early RPM lessons consisted of a general formula of two columns, teaching content on the right and questions on the left side of the paper.  I practiced them myself so that I was comfortable with the material and the delivery.  I did lessons on phonics (Ryan was in first grade and I had no clue if he knew how to spell or if he knew blends or vowels), science, social studies, math, and I incorporated personal/social stories into the lessons.  Whenever we had an event or trip like a vacation, wedding, doctor’s appointment, etc. I created a lesson about it.  I still spend time on lessons, but since we have been doing this for almost two years now, I am much more comfortable, and lesson planning is not nearly as intimidating or time consuming as it was in the beginning.

7.  Do this everyday, even it it is hard.

When we first started, Ryan and I sat for about 10 minutes every day.  It was not a long time, but in those 10 minutes, he learned more than he did all day in school or ABA or speech therapy.

After Ryan’s first local camp with Erika Anderson of ACE RPM, the first two weeks were rough.  Ryan would not sit at the table with me for more than 5 minutes.  He was only picking the right side for answers.  He did not seem to be listening.  I had to carry him to the table most days.  Because of this, I scheduled a phone consult with Erika where I sent her a video of Ryan and me working together.  She gave me some helpful tips and we got back to it.  Ryan then started picking only left side answers.  I was frustrated.  I was not going to give up, but this was not easy at all.

8.  Progress is slow but you will get there.

We got better, and we moved from selecting paper answers to selecting paper answers and then mirroring those answers on the set of 3 stencils, A-I, J-R, S-Z.  After doing that for a while, I was able to give Ryan verbal choices and he could use the stencils to spell out the answer by poking each letter with a pencil.  We then moved to 2 stencils, A-O and P-Z.  During this time, I periodically had phone consults with Erika and sent her videos for feedback.  While in these stages, it was important for me to give Ryan verbal prompts and air prompts, which are hand motions to get the child to move their arm up or down—no physical touching though— to get to the correct letters as this was a new skill for him.  With known answers, we are teaching the children how to get to the right letter to spell it out.

9.  Stay in contact with your provider and continue to go to workshops and camps.  Find a local community or online community of RPM parents.  

I touched on this in #7 and #8, but doing regular Skype sessions and attending camps on a regular basis are vital.  I would also note that it was very important to me to have a support system of like-minded parents who could understand our frustrations and struggles and who also understands the small victories.  We are in the process of setting up an RPM support group in the DFW area called RPM of North Texas.  It is in the beginning stages, but I believe that it will become a very strong one.

10.  Remember that RPM is a learning method first and that open communication will come.

I knew that I was setting a foundation for Ryan with our academic lessons.  Ryan was only 7 at the time and I really had no clue what he knew and didn’t know.  He was being taught and drilled on matching colors, shapes, and letters—not identifying these things—matching them.  I was told by the Applied Behavior Analysis (ABA) therapists that they were not sure if he knew where his body parts were.  He could not follow simple one and two step directions.  We did academic lessons for 10 months before I got one open ended, original response from Ryan during a lesson.  Patience is key with RPM.

11.  Believe in your child and believe in yourself.  Presume competence.  

I still am in awe that this is our reality.  Ryan has been so good about spelling in public now, but many people think that he is an anomaly.  Many children around the world are succeeding with RPM. Ryan is extremely smart, but he and I believe that all autistics can do this.  The journey won’t be easy and it won’t be quick, but it will be worth it.  Every child and person deserves a voice, and RPM is the way to give them one.

Birthday Celebrations and The R Word

It has been a while since I have been able to sit down to write a blog post.  We had two birthdays in our house in the last week (Randy’s and Grace’s) and with the holidays approaching, it has been busy.  Ryan has also been battling some stomach issues, but he finally seems to be feeling better.

Last Saturday was Randy’s birthday.  I wanted to share with all of you the card that Ryan came up with for his dad.  I got both Randy’s and Ryan’s permission.  Here is a picture of it.

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Ryan helped me choose the pictures and he spelled out letter by letter his card to Randy.  I had tears in my eyes as he spelled it.  Randy had the same reaction when he received it.

And then he tried to out do himself by this card to Grace.

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Wednesday was Grace’s birthday.  Ryan and I picked up her dinosaur cupcakes at the local grocery store and headed over to her classroom.  Her teacher invited Ryan and me to come and celebrate in the classroom.  I was a little nervous as Ryan really needs one on one supervision and it was going to just be the two of us as Randy could not make it.  We got to the classroom (without dropping any of the 24 cupcakes and 1 gluten free/dairy free one for Ryan) and Ryan was ambushed by several curious first graders.  Grace’s wonderful teacher, Mrs. Scotto, knows Ryan and asked Grace to talk to the class about him prior to our arrival.

Grace told the class that “Ryan has autism and he can’t talk but he understands everything.  He uses a letter board to communicate.  He uses his hand to point to the letters to spell the word.  Ryan can spell anything.”

This is why he was ambushed.  He was a celebrity in their minds, all thanks to his sister, his biggest champion.  They treated him so well.  While they were all eating cupcakes, Ryan spelled:  CALLING IT COOL THAT THEY WANT TO KNOW ABOUT ME.

And then he spelled:  DEARLY CARING EACH DAY I HOPE TO MAKE UNDERSTANDING FRIENDS.

And after the cupcakes were eaten, several of the kids were still following Ryan as they cleaned up.  I wanted to get out of the teacher’s way so that she could get all of the students ready to go.  As we were leaving, I asked Ryan if he had anything else to say to the students.

THANK YOU FOR ACCEPTING ME.

We got home and Ryan was still beaming.  He was so happy.  I asked him his thoughts.

CALLING IT AMAZING.  I AM MEANING TO THANK GRACE FOR ALL OF THE NICE THINGS SHE SAID ABOUT ME.

*********

Later that day, we had Grace’s birthday party at Altitude Trampoline Park. I had taken the kids once before and that is when Grace had decided that she wanted her party to be there.  Ryan did not love the experience that time because it was rather loud and crowded.

Since it was a Wednesday evening, the place was not as busy.  There were two other parties there, but really, it was a lot less people than the last time that we went.  Ryan took his shoes off and ran right up and started jumping.  He was having a blast.  He usually requires me to jump with him, but not this time.  He was running around and was so happy.

And then he wasn’t.

He came back down after about 10 minutes and sat down and put his Crocs back on.  I grabbed his board and asked him what was the matter.

BALLING (Bawling) ON THE INSIDE.  SO MOM I AM SO SAD BECAUSE SOMEONE CALLED ME RETARDED.

And my heart sank.  I was so angry.  I was looking around, trying to figure out who it could be.  I knew that he was not going to be able to tell me which person.  I did try to ask him but he was only able to say that it was a boy.

I told him that that boy was not raised well and that he was a rude and ugly person.  I told Ryan that he could be upset for a few minutes but then he had to get over it and move on and not let it ruin his night.  I took off my shoes and grabbed him and we went off jumping.

He seemed to perk up.  He seemed happy.  We jumped for a while and then took a break.

“How are you doing now, Ryan?”

SO I AM STILL SUPER SAD ABOUT BEING CALLED RETARDED.

“Ryan, please remember how well you were treated in Grace’s class today! Those kids loved you.  They got to know you.  They treated you with respect because their parents raised them well.  This kid who was ugly and rude must not have good parents.  He was not raised well.  Please try and forget about it.”

But the thing is, that kind of thing stings.  Two days later, Ryan is still upset by it.  I can’t say that I blame him.  He spelled for me today that it was TOO HARD FOR ME TO TALK ABOUT.  I tried to tell him how I was called “Dumbo” when I was a kid because of my big ears, but frankly, that is nothing compared to what he has to endure:  the constant looks, whispers, etc.  I know that he notices.  He can read people very well.

So I guess that I want to leave our readers with this thought:  Please teach your children to respect other kids’ differences.  Please teach humility and tolerance.  Please correct your children if they use the word retarded, even if it is used in a way that seems innocent.  I know that I am preaching to the choir on this one, but it still feels important to write.

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Grace’s 7th Birthday Party.

Some Insights and an Art Museum

One of the people that I can honestly say has changed our lives here is Ido Kedar, a non-speaking autistic who wrote the book Ido in Autismland.  I have given copies of his book to friends, family members, therapists, and teachers.  His candid accounts of his life are so raw and vivid and have given me so much insight into Ryan’s behavior, especially before Ryan was able to communicate with us.

I bring this up because Ido also maintains a blog, and I read all of his posts and I read them to Ryan.  His latest post, was rather poignant.

Ido states, “…if you converse in a noisy room you automatically tune out the background din, but a person whose auditory processing is global is blasted equally by all sounds.”  He goes on to say, “Sometimes people who are overloaded due to global processing  may try to cope by obsessively listening to micro-selective, familiar tunes.”

I finished reading the post to Ryan and he spelled:  SO MOM I FEEL I AM SO HEARING GLOBAL.  REALLY CAN HEAR THINGS MOST PEOPLE CANT.  REALLY CALLING IT POOR ABILITY TO FILTER NOISE.

“So Ryan, when you are overwhelmed, how do you cope?”

NOT SURE.  DEARLY DETERMINED BY THE SITUATION.

“Is this why you like to have your iPad with you most of the time?”

MY IPAD IS MY CONSTANT IN MY LIFE.  SO MOM I FIND I CAN FOCUS BETTER IF I LIKE HAVE IT AT ALL TIMES.

We continued on and did an Art History lesson on the painter John Constable.  As we were learning, Constable was known for his landscape pictures and he often painted pictures of different skies and in order to remember them, he would put the name of the place where he painted it and the date on the back of the canvas.  I explained this to Ryan and I asked him his thoughts.

I KIND OF DO THAT TOO.

“What do you mean?”

I FIND MYSELF LEARNING HOW TO TELL TIME, CALLING IT MOVIES IN MY HEAD.  I AM INTO PLAYING MOVIES IN MY HEAD OF REAL LIFE EVENTS.

“That is interesting, Ryan.  Do you have a favorite?”

THE REALLY HARD TOO MUCH FUN WEDDING.

“What do you mean by hard?  Do you mean that it was hard for you to handle the sound and people?”

YES.

“But you obviously still had fun?”

YES.

******

Today, we went to The Modern Art Museum of Fort Worth this morning.  Ryan woke up super early today and I came in and asked him if he was ready to go this morning.

LEARY OF GOING BECAUSE I AM TOO HYPER.

I explained that on Wednesdays it was half price for adults and children under 12 are always free, so even if we just stayed for 5 minutes, that was fine with me.  I told him that we needed to at least try and go.

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Taking the picture in landscape format would have been better but you get the idea.

We got there right at 10 am when it opened.  We met a woman at the information counter and got our tickets.  The woman asked Ryan if he wanted a drawing book and pencil.  Ryan spelled:  YES.  THAT WOULD BE COOL.

I asked Ryan if he had any questions for her before we started.  He replied: DEARLY HAPPY TO BE HERE.

We spoke to her a bit longer and before we began checking out the museum Ryan spelled:  GEARING UP FOR IT.

So as a parent of an autistic child who struggles with body control, this needs to be said:  Ryan’s behavior was absolutely amazing.  He barely “stimmed” at all, he did not spit nor did he run off.  He also did not touch anything.  I am still on a high about this.  It was such a pleasant experience.

We walked through the place in about 45 minutes, which was about how long I thought that we might stay for.  When we turned in our clipboard (which held the drawing book and pencil) to the information desk, the young woman asked Ryan what he thought of it.

SO I THOUGHT IT WAS COOL.

We sat down on a bench before we left and he spelled I REALLY LIKED IT A LOT.  ALWAYS LOVE LEARNING ABOUT ART.

Once we got home, Ryan had a Skype session with his friend Fox.  Ryan told Fox about the museum and then spelled:  I NEED TO GO TO MORE MUSEUMS.

Fox asked Ryan how he was able to not touch anything.

CALLING IT MAGIC.

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Ryan’s Song

As many of you know, Ryan is really into music.  His mood can be turned around pretty quickly just by me starting to sing to him one of his familiar songs.

After I published this blog post, I did some digging and found a company that matches up all kinds of teachers with students.  It is called Take Lessons.  I made an inquiry on line and then spoke with a representative over the phone and she matched us up with Ben, who does in home lessons and could teach songwriting (which is what Ryan wanted to learn).

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Ryan has had weekly lessons on Tuesday afternoons with Ben since September.  Two weeks ago, Ben agreed to record Ryan’s first original song lyrics.  Ben went to the studio and produced the final result below.

Ryan’s original lyrics are the following:

I AM IN MY HEAD.
SO WONDERFUL YOU ARE, YOU ARE TO ME.
NO ONE IS MY CHEERLEADER
MY FRIEND
MY CONFIDANT
NO ONE MAKES ME FEEL SO LOVED
YOU ARE MY EVERYTHING.

BECAUSE OF YOU I MEAN SOMETHING
HAPPY YOU ARE MINE
MY LOVE IS SO REAL AND TRUE
MEANING OF MY LIFE IS YOU
UNDERSTAND I AM NOTHING WITHOUT YOU

FALLING POOR EACH DAY
LIFE IS NOT THE SAME
REALLY NEED YOU NOW
REALLY NEED YOU NOW

FALLING POOR EACH DAY
LIFE IS NOT THE SAME
REALLY NEED YOU NOW
REALLY NEED YOU NOW

RADIATING BEAUTY IN EVERY WAY
REALLY CANT LIVE MY LIFE WITHOUT YOU
GOD IS ALWAYS LOOKING OUT FOR US
ONE DAY AT A TIME
LIBERATION MAKES ME FEEL FREE

FALLING POOR EACH DAY
LIFE IS NOT THE SAME
REALLY NEED YOU NOW
REALLY NEED YOU NOW

FALLING POOR EACH DAY
LIFE IS NOT THE SAME
REALLY NEED YOU NOW
REALLY NEED YOU NOW

I AM IN MY HEAD.
SO WONDERFUL YOU ARE, YOU ARE TO ME.
NO ONE IS MY CHEERLEADER
MY FRIEND
MY CONFIDANT
NO ONE MAKES ME FEEL SO LOVED
YOU ARE MY EVERYTHING.

This past Tuesday, Ryan was feeling down.  We began the homeschooling day and he spelled WISH ALL MY PAIN WOULD GO AWAY.

I was stunned, but tried not to let it affect me.  I told him that he was allowed to be sad, but that he needed to only be sad for a short amount of time and that then he needed to pick himself back up.  We continued on and we did an art history lesson (which he enjoyed) and then I told him that we were going to listen to the song choices that Dad had picked for Ryan to listen to.  Our homework from Ben was to listen to more music to get inspired to write more lyrics.  Randy came up with a list and I began to play them.  Ryan was mesmerized.  He sat in the chair for almost an hour (those of you who have met Ryan would know that this would be quite a feat.)

He spelled:  MUSIC FEEDS MY SOUL.

He was actually able to write several lines of lyrics.  This next song is going to be a SAD SONG according to Ryan.

Here is what Ryan had to say about music today:

I GET SO HAPPY WHEN I HEAR MUSIC.  MEANINGFUL FOR ME TO LISTEN TO SO MANY DIFFERENT KINDS OF MUSIC.  I WISH LEARNING TO APPRECIATE MUSIC HAPPENS MORE OFTEN.

“What does that mean, Ryan?”

REALLY MEANS TO LISTEN TO MUSIC MOST OF THE TIME.

“Ryan, which song was your favorite to listen to this week?”

SO MOM I STILL LIKE WONDERFUL TONIGHT.  (I have been singing him this song since he was a baby.)

LEARNING TO BECOME A SONGWRITER IS IMPORTANT TO ME.

Since Tuesday went so well, we have decided to make it “Music Tuesdays” going forward where we will do all things music related for school, to include RPM lessons about different artists, genres, etc.

“Ryan, can you tell us your readers your thoughts on Ben?”

SO BEN IS AWESOME.  HE TREATS ME WITH SO MUCH RESPECT.  HE HAS MADE ME A BETTER SONGWRITER.

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You can find Ben’s blog here.

Back to Home Depot and Veterans Day

So the other day, Ryan’s grandma, who we call Granny, was asking Ryan if he was interested in getting any toys for Christmas. I was surprised when he answered YES.  The reason is that Ryan has never really played with any toys appropriately, nor has he shown much interest in them, even as his communication has taken off.

I WANT TOYS WITH INSTRUCTIONS ON HOW TO PUT THEM TOGETHER.

Hmmm.  I was trying to figure out what that meant.  Granny suggested construx or legos, but I began to think of things like models of some sort.  Later that day, this showed up in my Facebook feed.

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Randy and I had planned on an overnight getaway, beginning that morning of November 7th, but I was determined to bring Ryan to the workshop.  I spoke with Randy and we agreed and signed both Grace and Ryan up for it.

We went, prepared with Ryan’s headphones in case it got too loud. IMG_6782 There were a lot of kids and it was loud, but he did great.  He was very interested in the project and helping with it.  He stayed on the fake turf and stuck with it until the project was done.

IMG_6784Grace had a great time too and was able to do most of it on her own (with just a little bit of help from mom).

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Ryan spelled out while we were there, KNOW THAT I LOVED THIS.

We plan on trying to attend these events in the future.  They are on the first Saturday of the month at participating Home Depots.  I would also love any suggestions from our readers for projects like this that I can do at home with Ryan.  Home Depot made the instructions very easy and the actual construction was fairly easy too (especially for a challenged mom.)

This week in school, I made the focus on Veterans Day.  I created several lessons around this theme and thought that it would be a good idea for Ryan to interview a veteran.  Ryan’s Uncle Ryan served as a United States Marine.  We set up a time to FaceTime him (coincidentally on the Birthday of the Marines, which was Tuesday) and Ryan asked his uncle several questions.  Here are a few of them:

WHAT DOES SEMPER FIDELIS MEAN TO YOU?

HAS TO BE HARD, WAS IT?

HAVE YOU KILLED ANYONE?

HAVE YOU EVER FIRED A GUN?

HAVE YOU HAD ANY ENCOUNTER WITH ENEMIES?

DO YOU MISS IT?

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Ryan and Uncle Ryan spoke for about 25 minutes.  Aunt Sarah noted that Ryan seemed rather hyper and “stimmy” at the beginning of the call, but became rather calm as the call went on.  I noticed this as well.  Ryan was very engaged with Uncle Ryan.

REALLY MEANINGFUL TO TALK TO ME ABOUT THE MARINES.  SO UNCLE RYAN THANKS FOR SPEAKING TO ME TODAY.

“Anything else that you want to say?”

YES TO LEARNING MORE ABOUT THE ARMED FORCES.

So today we went to the local North Richland Hills Veterans Day Celebration.  Ryan was very excited to go.  Last night, when I asked him if he still wanted to go, he replied WE ALREADY SAID THAT WE ARE GOING.  So that was that!

I was concerned about the weather as it was supposed to rain, but, as I have found, Texas weather is funny.  It was actually sunny and 80 degrees and I was sweating.  We got there and Ryan seemed to be having trouble with his body from the start.  He spelled out I AM NOT SURE THAT I CAN LAST THE WHOLE TIME.  I told him that it would not be necessary to stay the whole time and that we would stay as long as he could.

We stood in the back and out of the corner of my eye, I saw him–Officer Hodges!  I had mentioned to Ryan that he might be there.  Well it did not take him long to hear and recognize one of Ryan’s noises and he came right over to us.

I have to say, as a parent, the sight of this brought tears to my eyes.  As soon as Ryan saw Officer Hodges, he went right up to him and hugged him and smelled him and smacked him on the chest (which Officer Hodges didn’t mind but I was mortified) and Ryan kissed him.  You could feel the love and admiration that Ryan has for him.  In the midst of it all, Ryan spelled SO AWESOME TO SEE HIM.

If it wouldn’t have been awkward to take a picture, I would have.  The picture of it is in my mind though and it is vivid and amazing.

Even with Officer Hodges there, Ryan still had difficulty with limiting his noises though.  I decided it was best to leave as I didn’t want to disrupt the ceremony.

On our way out, we saw the ladies who had given us flags and the program upon our arrival.  Ryan spelled out for them THANK YOU SO MUCH FOR HAVING US.

We got home and I made lunch.  When I sat down, Ryan kept motioning and pulling for me to get up.  I held out his board.  KIND OF WANT TO START HOMESCHOOL AGAIN (meaning cut your lunch short, Mom!)

We sat down at the desk and he spelled:

MR. HODGES IS REALLY ONE OF MY FAVORITE PEOPLE EVER.  HE IS ALWAYS SO KIND TO ME.  REALLY LIKED SEEING HIM AGAIN.  REALLY KNOW THAT I AM GLAD THAT WE WENT TO THE VETERANS DAY CEREMONY.

At the North Richland Hills Veteran's Day Celebration.
At the 2015 North Richland Hills Veterans Day Celebration.

Halloween and a Book Report by Ryan

This was the second Halloween that Ryan was able to let us know what he wanted to be dressed up as.  Last year, he picked with paper choices a firefighter.  This year, he wanted to be a SCARY GOBLIN.

We tried on some masks in Target.  I was surprised that Ryan kept them on as long as he did (which was about 10 seconds).

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IMG_6508We went to Party City and Spirit Halloween and we had a difficult time.  It was about a week before Halloween and it was noisy and crowded.  Ryan had a difficult time letting us know if any of the costumes would be what he wanted.

Later that week, I went to Walmart with Ryan.  He was able to select a costume and an ax and he was very pleased with his selections.

Ryan informed us that he did not want to go trick or treating.  I WANT TO HAND OUT CANDY AT HOME.

The day before Halloween, I decided it would be a good idea to actually have Ryan try on his costume.  Unfortunately, within 2 minutes of opening it up, Ryan accidentally broke the elastic of the rather flimsy mask.

This was not a big deal to me, but I wanted to get Ryan a more durable one.  I asked him if we could go get him a new one.

SORRY I BROKE THE MASK.

“Ryan, it is not a big deal.  Do you want to try and pick out another one?”

YES.

So we went to Walmart.  They had no masks left.  The associates were very kind to Ryan and asked him questions and he spelled out his answers on the letter board.  One associate called another Walmart that was nearby and had them hold a skeleton mask at the service desk for us.

I wasn’s sure that it was necessary to go to another Walmart as the Spirit Halloween store was in the plaza next to this one, so we headed over there.

After Ryan tried on one of the masks (and it looked awesome!) I asked him if he liked it.

LEARY OF WEARING A MASK.  NOT SURE I CAN HANDLE IT.

“Do you just want to skip the mask?  I can try and put some makeup on you to make you look scary.”

YES A MASK IS NOT NEEDED.

So we had a plan.  And it came out great.

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Once Grace and I got dressed (I was a mishmash of a headless horseman shirt with a Cookie Monster headband and spider earrings), Ryan spelled out:  ALL OF US LOOK GOOD EXCEPT FOR DAD.

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Here are Ryan’s thoughts about Halloween.

CALLING IT MEANINGFUL TO DRESS UP THIS YEAR.  HAPPY TO CAPABLY PARTICIPATE.  REALLY HAD TOO MUCH FUN IN MY COSTUME.  FEELING HAPPY ABOUT HOW I LOOKED.

And to go with the spooky theme, Ryan and I finished Harry Potter and the Sorcerer’s Stone last Thursday.  It is the longest book that we have ever read together and he loved it.  Each day he was excited to read more and more in it.  Since we read a good portion during school hours, I thought that it was appropriate for Ryan to do a book report on it.  We did an RPM lesson on how to write a book report and his finished product is below.

Harry Potter and the Sorcerer’s Stone

Book Report by Ryan Curry

Introduction:

THE BOOK IS CALLED HARRY POTTER AND THE SORCERER’S STONE.  IT SURE IS MY FAVORITE BOOK EVER.  IT IS WRITTEN BY J.K. ROWLING.  IT TAKES PLACE AT THE DURSLEYS’ HOME AND HOGWARTS SCHOOL.  THE GENRE IS ACTION AND ADVENTURE.

Setting:

THE DURSLEYS’ HOME IS FULL OF DUDLEY’S STUFF.  LEARY OF IT MYSELF.  HARRY LIVED IN A CUPBOARD UNDER THE STAIRS.

HOGWARTS SCHOOL IS HUGE AND DARK AND A PEACEFUL PLACE COMPARED TO THE DURSLEYS’ HOME.

Describe 3 Characters:

HARRY POTTER IS A BOY WHO IS REALLY DEPRIVED OF MEANINGFUL RELATIONSHIPS.  HE ASSUMES HE IS A REGULAR BOY.

HERMIONE IS A GIRL AT HOGWARTS TOO.  SHE IS ANNOYING AT FIRST BUT BECOMES FRIENDS WITH HARRY.

HAGRID IS A BIG, REALLY GOOFY GIANT.  HE IS HARRY’S HELPER THROUGHOUT THE BOOK.

Plot:

IT IS EACH DAY DIFFERENT CHALLENGES FOR HARRY AND HIS FRIENDS.  THEY WERE TRYING TO PROTECT THE STONE FROM LORD VOLDEMORT.

Themes:

FRIENDSHIP AND GOOD VERSUS EVIL WERE THEMES IN THE BOOK.  FRIENDSHIPS BETWEEN HARRY, HERMIONE, AND RON AND HARRY AND HAGRID MADE IT A VERY COOL BOOK.  GOOD VERSUS EVIL WAS A THEME TOO.  GOOD WON IN THIS BOOK.

Thoughts on the book:

HARRY POTTER IS AMAZING.  SOME THINGS I LIKED WERE THE IDEA OF REALLY REALISTIC DESCRIPTIONS OF THE CHARACTERS AND REALLY LOVED THE STORY BECAUSE EVEN THOUGH IT WAS FANTASY IT SEEMED REAL.

PROUD OF MYSELF FOR WITHSTANDING MY NATURAL INSTINCT TO STAY IN MY OWN WORLD AND TO ENTER THIS ONE.

GEARING UP FOR BOOK TWO.