Thursday, September 26, 2013

Personality and Patience

I really enjoy the book Ido in Autismland, a collection of essays written by Ido Kedar, a non-verbal autistic boy who wrote about his experience of being autistic between the ages of 12-15.  It was the first book I read that resonated with how I felt my son to be like.  Ido got his start in communication through Soma’s RPM.  I have since bought many copies of the book to give to family and friends so they could understand Philip better.

In August, my in-laws came to visit from Albuquerque, New Mexico.  They both read the book while they were here.  After my father-in-law read Ido’s essay  “Trust, Aura, and Communication” he wondered if Philip also sensed people’s auras.  In the book, Ido talks about how people give off a colored glow which, depending on the color, causes him to be either relaxed or tense.  This, in turn, affects his ability to point and communicate with people with his letterboard.  When he is relaxed, he is better able to communicate.

I decided to ask Philip about this.  I didn’t bring up auras, but instead asked him if different colors could be used to explain certain personalities.  “Y,” he answered.  Together we came up with a list of colors and corresponding personalities and people who might fit that color.  Philip’s responses are in CAPS.

Yellow: EASY GOING- CARLOS, LIA, ME (Philip)
Green: ENVIOUS “Who’s green?” I asked.  ANY PERSON.  “You mean any person at some time can be green?”  Y
Purple: ROYAL- LOLA, DAD “Why would you say they are purple?” I asked.  THEY ARE IN CHARGE.

I’ve since noticed the connection between the “blue” personality and Philip’s ability to spell well with them.  One time my older two kids Ana and Carlos were sitting with Philip at our table while I held the board as they talked with Philip. Ana asked, “Why can you only spell with Mom holding the letterboard?” “SHE IS PATIENT,” spelled Philip.  “If I practice with you, would you be able to spell with me too?” Ana asked.  “Y.”  “What about me?” asked Carlos. “N,” answered Philip.  Just so you know, Carlos is not known for being patient.  However, since that conversation in August, I have noticed Carlos becoming more patient and bonded to Philip.  I believe it is because Philip has gotten better in communicating.  It would be interesting to see if Philip still feels the same way.

Though some people are more naturally patient than others, I think everyone can cultivate this quality.  Here is a case in point.  I have two friends, Nichole and Debbie.  To me they are very orange and outspoken.  In fact neither would call themselves calm or patient.  However, they have always paid special attention to Philip and treated him as a regular kid.  When I told them about Philip’s color-personality link, they excitedly wanted to know what color they were.  For each one, Philip spelled “BLUE.” We determined it was because they were patient with him and he felt calm around them.

Today I asked Philip if we could talk about patience.  “Y.”  I read to him some definitions of patience in the dictionary.  Then I asked him how he would define patience.  “STAYING CALM IN A DIFFICULTY,” he replied.  “Why is patience important?” “PATIENCE IS IMPORTANT TO HELP PEOPLE ATTEND TO NEEDED TEACHING.” “What happens if someone is not patient?” I asked.  “I WILL STOP TRYING.”

As I think of my experiences as a parent to all my kids, it strikes me how important being patient is.  Just last week, I remember using an annoyed voice with Carlos to take out the trash.  It didn’t do anyone well.  “I’ll do it at the commercial,” he replied in a sluggish, equally annoyed voice.  A half hour later, I had to remind him again.  This shouldn’t surprise me.  Even I do not want to listen to someone who is impatient with me.

When we realize just how hard it is for our autistic kids to communicate, it should make us want to be more patient.  I like reading Philip the encouraging responses we get from our blog.  Today we got an email from a mom in Maryland thanking Philip for sharing his story and helping her son more than he knows.  Philip had this advice for her son: ADDRESS COMMUNICATION.  IT IS HARD WORK BUT A SO NEEDED GOAL.  

We have to remember, not only do we have to be patient for ourselves, we have to model it so our kids can be patient with themselves.  As difficult as our journey is as a parent, theirs is exponentially greater.   

I leave you with these quotes I like about patience.

Learn the art of patience.  Apply discipline to your thoughts when they become anxious over the outcome of a goal. Impatience breeds anxiety, fear, discouragement and failure.  Patience creates confidence, decisiveness, and a rational outlook, which eventually leads to success. –Brian Adams (author)

Our patience will achieve more than our force.  –Edmund Burke

Love is patient.  Love is kind.  -1 Corinthians 13:4

  Albuquerque, NM

Tuesday, September 24, 2013

International RPM Community

Yesterday I was contacted by Sue, a woman from the UK, who started a Facebook page dedicated to RPMers around the world.  It was originally for a group in the UK and Ireland, but since she has gotten a lot of interest from Americans, she took the "UK" off the name yesterday.  She found my blog through the Halo-Soma site and wanted to get my permission to post it on the group site.  I was excited for the opportunity.  It has been my mission all along to help people through my blog, whether by changing misconceptions about autism, introducing RPM to other parents, or supporting and encouraging people already using RPM.  I chose the title Faith, Hope, Love…with Autism for many reasons.  One being that God has taught me more about these gifts through Philip than any other avenue in my life.  Another reason is that since starting RPM, I have been able to have more faith in my son, a renewed hope for his future, and an understanding that has allowed me to better demonstrate my love for Philip and others like him.

I have received a few requests from people wanting to know how I started RPM and progressed to where Philip is now.  

I first learned about RPM from Laurie, a woman in my autism support group.  I was initially skeptical but tried to investigate it on my own by reading Soma’s book and trying to replicate what I saw on Laurie’s RPM camp video.  That was not enough to get me anywhere so I stopped.  About a year later, I met Susan, whose son Michael had been doing RPM for a few years.  She showed me his letters to his classmates in regular middle school and videos showing him communicating with humor and intelligence.  She leant me the books “I Am in Here,” and “The Golden Hat.”  She told me to watch the movie A Mother’s Courage, which I did.  It made a huge impression on me.  That was enough to get me to register for my first camp with Soma in October 2012.  

The camp was the most wonderful experience.  We started to see Philip as being intelligent and capable.  He was answering questions about grade level material correctly, spelling, and even expressed what he wanted for Christmas for the first time in his life: a radio.  That week, I felt as if my son was reborn.

Returning from camp was hard.  After the initial high of going to camp and showing our family and friends Philip’s videos, a low would soon follow.  I found myself overwhelmed with trying to do what Soma did.  I didn’t know where we would work, what we would study, or how to go through a session without stumbling through it. Philip would not sit at a regular table at first.  He would slide below it or run out of his chair.  My dad had some old office dividers that he kept after he retired, so he gave them to me to make an enclosed 4x4 ft workspace.  I bought an adjustable table where we could work.  I went to my nearest bookstore and bought a comprehensive second grade curriculum workbook and used my second grade daughter’s school papers to come up with lessons (Philip should have been 4th grade but I wasn’t sure he was ready after having done preschool work all his life).  Lessons with Philip were initially tough.  He would often resist by standing on his chair or biting his pencil.  I eventually had him point because he was ruining so many pencils!  Sometimes I would follow him around the room with all my paper and there would be ripped choices all over the floor.  

Philip went through a ladder of progression in his skills.  The first month we spent just picking from choices.  Philip would even have trouble with that.  Sometimes he would just pick from one side.  Sometimes he consistently picked the wrong choice!  I experimented with placing the pieces of paper farther apart, tapping on the choices, holding them up, and making one choice completely absurd.  Eventually he got it.  Once he was more consistent with choices, I moved onto picking the choice and then spelling it.  We used the 3 large stencils at first.  I would say the spelling in a sing-song voice just as Soma did at camp.  “W for winter, I for inter, N for nter, E for er, R for r.”  I noticed Philip became good at spelling for academic subjects pretty quickly.  We were able to fade the paper choices and move to the 26-letter stencil pretty easily, but we’d go back to the choices and 3-stencil set if he got tired or started answering wrongly.  However, he wouldn’t answer open ended questions for the longest time.  Between our first camp and our second which was 7 months later, Philip probably only answered 5 open ended questions.  Another thing that took awhile for Philip to click was math.  He would often point to the last number he heard.  If I asked “what is 7+3,” he would point to 3.  If I asked him to point to 23, he would point to 3, then 2.  For some reason, a breakthrough in math came only when, at the suggestion of my friend Susan, I put a few random coins on the table and asked him the value.  He astounded me by coming up with the right value!  Susan had told me her son Michael preferred a challenge and even told her to start at a higher level and then come down if needed, rather than start at too low a level.  That seemed to apply to Philip too.  Once Philip’s teacher sent home a list of spelling words.  They were easy words like cat and tree.  He spelled the first 2 words on the list correctly, but then started pointing to random letters by the third word.  I decided to give him riddles about the words instead.  Only then did he resume spelling the words correctly.  By the time we saw Soma the second time, Philip was very good at spelling one word answers for academic lessons.  He was still inconsistent in math and open ended questions.

The second time Philip saw Soma was in May of 2013 during a workshop my support group organized in Buffalo, NY.  Again, Philip astounded us by spelling in sentences, making conversation, and even writing a story.  He started multiplication with Soma and picked it up in minutes.  One morning Philip spelled with Soma, “I AM IN A GOOD EARLY MORNING MOOD.”  “What does that make you want to do?” asked Soma.  “TALK,” spelled Philip.  “With your voice?” “YES.” 

I believe Soma has the rare gift of opening the window of a child’s potential so we can get a glimpse of the true person inside.  She gives one hope to work hard to not only keep the window open, but to open it further.  As we started working with Philip after the second meeting with Soma, I stepped up what I had been doing.  I now give him more challenging work at grade level.  I ask him what he wants to talk about.  He actually likes to talk about autism- a lot.  My faith in Philip has grown.  I treat him as smart, capable, and having much to teach me and others.  I have started exposing him to experiences I would have never tried in the past- having a playdate with kids both autistic and neurotypical, conversing on his letterboard with someone at church, including him in dinner conversation with the extended family.  Philip has risen to the occasion each time.  I now give Philip power over this blog.  He knows our mission and he proofreads and gives final approval of everything I post.                     

I feel truly blessed to be a part of an international autism community practicing RPM.  We need to work together to spur each other on to continue the progress in each of our kids.  In addition we have the awesome privilege of being agents of change in how the world sees autism and how we can provide real help and hope to those whose voices are unheard.  

Philip's first visit with Soma Oct. 2012

Philip's first office.  We had to start with minimal distractions. We are now able to do RPM anywhere, but our preference is now the dining room table.

Saturday, September 21, 2013

Changing Attitudes

Today Philip had another playdate with his friend Kaylie.  This time we met at her house.  Philip was a bit timid about coming in at first, but when he finally got up the nerve, he came in and presented Kaylie with a new laminated letterboard.  I decided to come prepared with a game this time.  When kids are first learning to communicate, they do best answering close-ended questions before venturing into the wide open field of expressing original thoughts and feelings.  I came up with Trivia Bingo, modeled after the Bible Bingo we played the night before at Stockade.  I placed 16 index cards in a 4x4 grid with the numbers 1-16 on them.  I had prepared questions corresponding to each number for the kids to answer.  Some of the questions were 'what season is Christmas in?' and 'what TV show features Big Bird?Philip breezed through his questions, even knowing the President lives in Washington DC.  Kaylie, being newer to this, had a tougher time.  I could tell Kaylie was completely understanding the questions and probably knew the answers as well, but she was having trouble initiating her responses.  When asked what animal lives on both water and land, once she got the first letter F after some hesitation, she picked up steam and spelled F-R-O-G.  As I asked Kaylie the question, “What is the name of the band that has four members who wear different colored shirts: red, yellow, blue, and purple?” her eyes lit up and a big smile spread across her face.  Again she needed prompting to get her initial start, but then very easily and quickly spelled WIGGLES, this time even on her iPad.  Her mom Lisa and I cheered.  You could tell Kaylie was proud of herself too.  After the kids finished their game, Lisa invited the kids to jump on the trampoline in the backyard.  Lisa and I pondered about how wonderful it was for our kids to finally have real friends. 

At the end of the playdate, Lisa wanted to know if Philip had any words of wisdom for Kaylie like he did last time.  Philip sat down and started, “I AM E. ”  But he didn’t get to finish because the next door neighbor’s dog started barking and by all the commotion, we knew we were done for the day at Kaylie’s.  When we got home I asked Philip to finish his words to Kaylie and told him I’d text her mom what he spelled.  Philip spelled, “I AM EXCITED ABOUT ALL THE ATTITUDES ARE ALL CHANGING ABOUT US.”  I asked Philip to tell me how attitudes were changing.  He replied, “I AM SMART.  I AM TALKING.  ADDRESS THE REEL ME.  I AM LOTS OF USE.”

A change in attitude goes a long way.  Before I knew the “real” Philip, I treated him as a toddler who did not understand and could not be trusted in much of anything.  Philip did not progress beyond what I thought of him.  Now that I see Philip as smart, capable, and trustworthy, he is rising even beyond my expectations.  Like all of us, we need someone to believe in us to believe in ourselves and fulfill our true potential.  Philip is still autistic, by all means, but he is showing he is a lot more than his label.  He is a complete person with ideas, thoughts, feelings, and desires. 

It is now my hope and Philip’s hope to change people’s attitudes about autistic people one person at a time.  Know that your attitude and the way you treat each person makes a huge difference.   

 Finally pooped out!

Thursday, September 19, 2013


My church has a tradition of Family Thursday Night Out.  We have participated in it since my oldest child Ana was a “Bible Bear” at age 4.  We’d all have pizza and wings for dinner at the church.  The girls would go to Pioneer Girls, the boys to Christian Service Brigade.  My husband Sam lead the 1st and 2nd grade boys in “Tree Climbers.”  I went to prayer circle followed by handbell choir.  It was a fun night to hang out with my church family.  

For many different reasons, the last few years, Family Thursday Night had become just another activity.  The older kids’ involvement with sports often interfered with Thursday night.  Sam’s work schedule changed so that he could not consistently come.  I never thought Philip would be able to handle a program such as this so I stayed home with him.  I ended up dropping off the 1 or 2 kids that could go and returning home.

This year things are changing.

Daryl, one of the rangers of the Stockade program for boys grades 4-6, has invited Philip to come for a couple years.  Last year I said no.  There was no way I could see Philip sitting for a meeting.  I didn’t even know he would understand what was going on.  This year, with all that we have seen transpire with Philip’s communication, I said yes.  

Our first meeting was last week.  Sam and I were his shadows.  Philip refused to go in the gym for the play time in the beginning.  It was so loud and echoey.  We did not force him to go.  When the boys got back from recreation, they convened in the Fellowship Hall for their meeting.  Philip sat with the 5th grade boys which was good because there were only 2 of them while the other groups were bigger.  The leaders introduced themselves followed by Philip and the other boy Adam.  I can tell Adam is kind and patient, just the kind of personality Philip would feel at ease with.  I could tell Philip was comfortable with everyone as he actually sat quietly and participated well!  They went around the table talking about their favorites.  Philip answered his favorite food was “TACOS” (we had tacos for dinner and he had 2 bowls of taco meat).  His favorite sport was “GYMNASTICS.”  Favorite animal was “DOG.” And his favorite Bible story character was “SAMSON.”  When asked why, Philip replied, “HE DIED KILLING PHILISTINES.”  I am finding out my son is definitely your typical boy.  Afterwards the boys got in the big group and sang songs and watched a video about Jesus.  It was so neat to see Philip being part of the group.

Today Philip again skipped the play time and instead went over his “achievements” with Ranger Daryl.  Achievements are things done at home to earn badges, like in Boy Scouts.  His Stockade book has many different kinds of activities such as recreational activities, finding out how things work, helping others, and exploring God’s Word.  This week we worked on the Exploring God’s Word activity through reading Mark chapter 1 and answering questions.  Philip showed Daryl he knew the answers to the questions: What was John the Baptist’s job?  “PREPARE THE WAY OF THE LORD.”  What did God the Father say about His Son? “THIS IS MY SON WHO I AM WELL PLEASED.”  What is a fisher of men? “MAKER OF DISCIPLES.”

When the boys returned from playing football, Philip and Adam played Bible Bingo.  They were on the same team and had to pick numbers on the Bingo board and answer a corresponding question about a character in the Bible.  Philip surprised us all by naming the correct answers to almost all the clues on his turn.  The first question was “Whose job was it to name the animals?”  Philip spelled, “ADAM.”  Ranger Sam asked, pointing to Adam next to him, “This Adam?”  “N,” replied Philip.  Philip continued to answer correctly naming PHAROAH, SAUL, ELIJAH, ELISHA, PETER, and SAMSON.  The only one he got stuck on was which disciple was always bringing people to Jesus.  He tried “PHILIP,” but the answer was Andrew.  Ranger Sam told them to come next week with a clue for a Bible character that might stump one of the leaders.  We’ll be working on that this week!

The meeting ended with songs and the story of John Harper, the preacher aboard the Titanic who preached the Gospel as the ship sank and brought people to Christ before he died in the icy sea.  When Ranger Sam prayed and asked the boys to raise their hands if they had received Christ, Philip raised his hand.

As I came out of our Stockade meeting and went to pick up Lia from Pioneer Girls, I felt a renewed appreciation for my fellow Christian brothers and sisters who work with our kids each week.  They have included and embraced Philip, as well as all my kids, as their own to grow and nurture.  I excitedly told my friends Nichole and Melanie about how Philip did and they shared my joy.  “You’ve truly gotten your miracle!” exclaimed Melanie.  “I really have,” I said.

To me, Family Church Night Out used to represent a collection of families getting together at church.  I now see it the way Christ truly envisioned it: It is one family in Christ coming together in the spirit of unity and love.