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 4^th 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.

We All Need Support

One thing I have learned from being a parent of an autistic child is that we all need support.  Someday I will write about Philip needing support, but today I will focus on how I need support.  I have mentioned before that autism is the hardest thing I have ever dealt with.  But in a strange way, autism has also blessed me in so many ways.  One way I have been blessed is by the community of support I have found.  It is so true that a shared load makes everything lighter.

Today I met with the ladies in my autism support group.  I literally would not be writing this blog about Philip’s amazing journey (of which I am so privileged to be a part of) without them.  If not for them, I might still be in the state of hopelessness I was in 2 years ago.  I might never have learned of Soma.  I might never have found a bridge for communication between me and Philip.

Our group formed about 2 years ago.  It was during a time I was feeling very sad about Philip’s lack of progress.  The feeling of hopelessness plagued me many days.  I have always had wonderful friends and family support, but even they could not fully relate to my situation.  I decided I needed to go to a support group.  As I looked on-line, I was discouraged to find a lack of groups that I could attend.  They were usually in the evening when I was occupied with my four active kids and my husband getting home from a long work day.  I had met a couple of moms at Philip’s adaptive swim class whom I enjoyed talking to.  I decided to start a group with them and invite the parents of Philip’s classmates at school.  I printed out some flyers to be handed out in Philip’s class with my contact info and the date of our first meeting which would be at my house.

The first autism support group meeting convened in my dining room in the fall of 2011.  There were 6 moms with sons or daughters about the same age from the same school.  We took turns introducing ourselves and who are children were, and talked about both the hardships and joys of raising our kids.  I remember commiserating with them as they talked about the difficulty of visiting at other people’s homes, receiving looks of annoyance or contempt in public when their kids misbehaved or threw a tantrum, and worrying that their kids weren’t getting the services or help they needed.  I also remember agreeing with them about how their autistic child brought their family closer and how some people can surprise you with their kindness.  It was a great feeling to be among people who truly understood because they walked the same path I did.

I also remember one mom, who I am now good friends with, mention she was going to Austin soon to see a woman named Soma.  I didn’t think much of it at the time.  I had never heard of Soma before.  Besides, I thought I was past looking for new things to help my son.  I was into discovering the newest treatments when Philip was 3-5 years, but nothing ever delivered as promised.  Philip had been stuck in neutral for a few years now and I thought it was time to stop chasing the wind and just accept the situation as it was.  I wouldn’t have called it giving up, but I was tired and no longer knew what to do.  I kept the thought of this new “therapy” on the backburner.

Our support group continued to meet once a month and everyone took turns hosting.  Getting together always energized me.  One particular meeting stands out for reigniting my hope for positive change.  We were at my friend LC’s house and she showed us a segment she recorded from the show The Doctors in which they interviewed Carly Fleischman, an autistic teen who doesn’t speak, but writes on a computer so eloquently.  Then we were treated to LB’s update on her trip to Austin with her son M.  She told us of how he learned grade level material like the Pilgrims and he was spelling answers on a letter stencilboard.  She said her son spelled that his favorite color was bIue.  When he was asked which shade of blue, he spelled, “sky.”  I could hardly believe it!  Then she showed us a video of M working with Soma.  It was like a miracle right before my eyes!   

I started to get a little more serious about looking into Soma.  I ordered her book, looked at the HALO website, and even went to Michael’s craft store to buy stencils and try doing it on my own.  But I didn’t really know what I was doing and it didn’t seem to work.  Again I put it on the backburner.  I thought, “What worked for M, probably won’t work for Philip.  He can’t spell.  He won’t understand grade level stuff.  It’s probably too good to be true.”  

Somehow after that, things about Soma kept popping up.  One night I was flipping through the channels and stopped at the 700 Club (which I normally don't watch) because I heard autism come up.  I ended up watching a segment on Elizabeth Bonker, a non-verbal autistic, who wrote the book I Am in Here.  In an interview, her mother talked about getting her start with Soma.  Then the summer of 2012 I met SC and her son MK at a bicycle camp for special needs.  The whole week we chatted while our kids learned to ride a two wheeler.  I learned she also went to Austin to learn RPM from Soma.  Her son went to a regular middle school and wrote intelligent letters to his class to explain how autism affected him and that he thinks normal thoughts except that his mouth won’t listen to his brain to get his words out.  MK typed with an aid and attended regular classes.  Finally I decided it was time to take the plunge.  I registered to see Soma in October.

I am not going to write about our amazing, life-altering week with Soma now, but I will stop to say many people brought us to that place: LB, SC, my Bible study and many others who prayed for us.  When I look back, I cannot help but see how this was God's answer to my prayers all these years.  God orchestrated all these people to enter my life to get us to where we are now.  To everyone who has ever supported us or prayed for us, I cannot thank you enough!

Another wonderful thing about being in a support group is what you receive, you can also give!  When I got back from Austin, I could not contain my excitement about what happened with Philip.  I encouraged the rest of my friends in the group to give it a try.  At one meeting, LC finally said, “If we are all planning to go to Austin, maybe it would be worth it to ask Soma to come to Buffalo.”  This statement began yet another landmark moment for many families which I will have to detail in a future post about Soma’s visit to Buffalo in May.

Today’s support group meeting reflected a passing on of a wonderful blessing: the gift of communication.  The group is no longer just moms of kids the same age from the same school, though it is our core.  We now have new parents in the fold.  Their kids range from 8-27, go to different schools, and are at varying stages of developing communication.  The blessing is all encompassing.  We notice our kids are happier and we as parents are happier too.  I no longer feel the crushing weight of the burden I carried 2 years ago.  I stand with my group, my friends.  Together we have strength to share our loads and it is no longer too heavy.  

    

                                     

The "Core Four" (with Sam and Philip) with Soma and Tito at the Buffalo Soma-RPM Conference