High Hopes and Expectations

Guest Blog by Rhema

Rhema is 12 years old and communicates using a letter board and her iPad. She has been doing RPM for one year. She loves having tickle-fests with her sister Hope, going for car rides, listening to music, and riding her tandem bicycle. She enjoys doing RPM lessons and studying Bible, poetry, history, science and math. She is thankful for the opportunity to share her thoughts on Philip’s blog. Rhema's adventures can be found on the blog Rhema's Hope.

I LOVE BEING AUTISTIC BECAUSE I HAVE HIGH EXPECTATIONS

I HAVE MY GLORY IN THE LORD

I HAVE GOALS FOR THE FUTURE

I HAVE MY HOPE IN THE LORD

I HAVE FULL HOPE IN GOD

I HAVE HISTORY IN MY FAVOR BECAUSE GOD HAS MY HEART

Birthdays

Today is Philip’s 11^th birthday.  His due date was March 14, the same birth date as his older sister Ana.  But Philip took his time and was born 3 days later on St. Patrick’s Day.  I remember my Auntie, who is now in heaven, imploring us to name him Patrick, but we stuck to our original name picked out: Philip Mark.  Philip is named after Philip the evangelist and Mark the Gospel writer in the Bible.  The story of Philip is found in the book of Acts chapter 8, verses 26-40.  Philip was lead by the Holy Spirit to an Ethiopian official in his chariot studying the book of Isaiah of which he did not understand.  Philip explained the prophecy about Jesus and told him the good news of the Gospel.  The Ethiopian received the Good News with rejoicing and was baptized by Philip.  Philip went on to preach the Gospel throughout the nearby towns.  I always liked that story and envisioned Philip a good namesake for a boy I’d hope would bring the Good News to others someday. 

For most kids, birthdays are a joyous time of celebration with friends and family.  There is anticipation about the new year and what milestones lie ahead as the child grows and becomes more independent.  During the period of time between Philip’s diagnosis of autism and before the advent of his communication, each birthday of Philip’s was a bittersweet occasion.  We would celebrate with family and friends and even have children’s parties at My Gym or in the back yard with a bounce house when we lived in Miami.  We took pictures of our happy family and Philip opening presents and eating cake. But after all the guests went home, I would mourn another year lost.  In my mind, Philip’s window of recovery was shrinking with every passing year.  Every year he fell further and further behind his peers.  Every year he would be less tolerable in public as he grew in size but remained at a static developmental level (so I thought).  And then there was always the thought lurking in the recesses of my mind: what will happen to Philip when he grows to be an adult?  Where will he go when we are too old to take care of him?  It was a thought I mostly tried to shut out because it was too scary and painful to think about.  As Philip grew older, the less I thought his name fit him.  How could he be a herald of good news without a voice?

That all changed October 23-26, 2013 when we took our first leap of faith into trying RPM for the first time.  In Soma’s HALO Clinic in Austin, TX, we got our first glimpse into Philip’s potential as he learned to listen to Soma’s grade level lessons and demonstrate his comprehension by choosing from written choices and then spelling.  He even answered some open ended questions.  Many of these stories have been written about in previous blog entries such as here, here, and here.  Philip’s voice did not develop overnight and it did not develop in the way I envisioned.  There was no magic pill and Philip’s transformation was not overnight.  He did not become less autistic in appearance, yet his maladaptive behaviors did improve.  He is in every way autistic and wonderful.  Yesterday I reviewed the videos I had taken 7 months into RPM, then 1 year, then a year and a half.  How encouraging it was to see the gradual progress!  And through all those years I had waited for spoken words, I never had envisioned the joy I would feel in seeing his words emerge letter by letter on a letterboard.  They are more precious than gold to me.  It was the reason I started to blog so I would never forget them.  Of course I still would love to hear Philip speak with his physical voice and hopefully one day he will, but I am beyond grateful to finally know what Philip thinks and I will take his words however I get them!

Even though today is Philip’s birthday, we celebrated yesterday.  It was the first time Philip gave input to what he wanted for his birthday.  We gave Philip a choice between a party with close family at a restaurant or a kids’ party at a playplace.  He chose a restaurant.  He wanted to go to his Dad’s favorite restaurant called Tempo.  It was kind of cute because he had never been there, but he recalled a time he conversed with his Dad about restaurants and they looked up the menu on his Dad’s iPhone and talked about what they would order.  Tempo happens to be one of the most expensive and upscale restaurants in our city, so we bargained him down to a more reasonable venue, a Greek family diner called Spilios.  Philip sat at the head of the table with 15 of our closest family:  Lolo and Lola (grandparents), his cousins, and aunts and uncles.  Philip ordered and spelled for the waitress what he wanted: sprite, fries, eggs over medium, and bacon.  We had homemade chocolate gluten-free birthday cake and everyone in the restaurant joined in to sing Happy Birthday.  Philip looked so happy.

This is the first birthday since his very first birthday, that I have not felt sadness.  I anticipate Philip’s growth like I do my other children now.  Philip’s future is so bright!  It is a clichéd saying that God works in mysterious ways, but He does!  He likes to use people in the most surprising ways.  In the Bible, we see Moses, a prince in Egypt, become the liberator of the Hebrew slaves.  We see Peter who denied Jesus 3 times in the face of fear, become the bold powerful leader of the early church who died a martyr.  It makes me rejoice with awe to see how God has upheld Philip’s namesake in the most paradoxical way.  A boy who cannot talk is indeed bearing good news to the world made manifest in his writing.  Philip’s mission is to change perceptions of autism and give a voice to autistics who cannot speak.  He is accomplishing his mission of hope daily through his blog.  As of today, readers from 39 countries have read his words.  He has encouraged children around the world like himself through exchanged emails.  He has inspired parents to seek alternative communication methods for their kids and help them persevere.  He has explained autism from his insider view to allow people to understand and know how to act with respect and kindness towards autistics.  Philip has many dreams and is actively pursuing them.  He is on his way to mainstreaming in school and is setting his sights on becoming a writer among other things.  Who would have ever thought?

This 11^th birthday is indeed a most happy occasion.  Happy Birthday Philip!  May you reach for the stars! 

                

Daring

I get a kick out of Philip’s use of words.  A boy of few words, he carefully chooses each one to extract the most meaning out of it.  A week ago I wrote a post here about Philip giving titles to my Dad’s photographs.  As a follow-up, I asked Philip how he came up with the titles.  He spelled, “I ATTRIBUTE A TITLE THAT SUMS A LESSON.”  Yesterday my Dad won a gold award (the highest honor) for his photograph which Philip named “CATCHING LIGHT OPULENCE.”   I asked Philip why he chose the name.  “I LIKE HOW THE LIGHT SHINES TO ACCENT THE BEES AND THE OPENNESS OF THE FLOWER IS EASY TO ENJOY.”  Why opulence, I asked.  He spelled, “VIOLET ROYALTY.”

"Catching Light Opulence"

One word Philip has become particularly fond of using is “daring.”  The meaning of daring is “willing to take or seek out risks; bold and venturesome.”  I’ve been thinking about this word today and how it is related to hope.  Hope is the dream we have, but daring is the action that allows us to realize the dream.  Over the past year, RPM has given Philip a voice, and along with that, freedom to dream.  He wants to go to a regular school and says “I WANT TO LEARN EVERYTHING THERE IS TO LEARN.”  He says he wants to be a mathematician when he grows up.  He wants to learn typing and computer skills.  He also wants to write his story and teach others who cannot speak to communicate through RPM.  Photography has piqued his interest and he wants to try his hand on a camera and accompany my Dad on photo shoots.  

The power to dream is an amazing thing.  It gives us a purpose to live for.  It gives us positive momentum to wake up every day with the expectation we can improve ourselves and the world.   For me, this was not always so.  When Philip was between the ages of 6 and 9, I had such a hopeless feeling about Philip and my life that many times I dreaded the morning knowing each day would be like the last without reason to think things would get any better.  How much harder was it for Philip?  Hope is where all dreams find their beginning.

Daring is each step we take in making our dreams come true.  When a child is autistic and cannot communicate, he has to rely on others to dream big enough for him too or else his own dream cannot be realized.  Daring to see Soma was the best thing we ever did to help Philip.  With no indication that Philip could read, spell, communicate, or even understand much, we went to see if she could teach us how to reach Philip.  And she did!  Philip learned to learn age level academics and answer questions about himself.  When we got home, Philip would not communicate as he did with Soma for months but we dared to persevere until he could.  Little acts of daring such as pushing for a sentence rather than a single word, letting Philip speak on his letterboard to others, or enrolling him in activities with inclusion, snowballed into bigger things.  We didn’t always achieve things on our timing and sometimes a dare was met with a fail, but within the whole process was progress.  Looking back, each breakthrough has been a result of daring a fear or the status quo.

I want Philip to keep daring himself to accomplish his dreams.  This is not easy for him.  Often he feels discouraged about things, whether it is his inability to overcome his own sense of overwhelm during stressful situations or not receiving adequate accommodations to help him communicate out in public.  I keep reminding him that many of his heroes, Frederick Douglass, Abraham Lincoln, and Martin Luther King Jr., did not have it easy.  To achieve their goals, they had to defy odds against them and in doing so, made a huge impact on the world for good.

I look at the growing number of non-speaking Autistics succeeding and living out their dreams as well.  What do they all have in common?  They have all dared the common perceptions of autism.  They have all dared to find ways to communicate that are out of the box.  They all had people to dare to dream alongside them.  Tito Mukhopadhyay and Ido Kedar are accomplished writers and speakers (how amazing is that!) who learned from Soma.  Kedar currently attends mainstream high school.  Naoki Higashida was homeschooled and learned communication via letterboard and typing.  He is an artist and has written bestsellers in Japan and the US (The Reason I Jump).  Carly Fleischmann types and now attends college.  Larry Bissonette and Tracy Thresher travel the world as speakers (by typing) and advocates and have made a fabulous movie called Wretches and Jabberers.  There are many others daring their schools and communities to accept them, working jobs to support themselves, and defying people’s expectations.  

I leave you with Philip’s statement to me this morning after reviewing the post: “I AM DARING TO BE MYSELF IN THE WORLD.”  How about you?  Do you dare?   

 Philip with Soma

Never Too Late

Blogging has been a neat experience for me.  Not only have I been able to reflect on the many things Philip is teaching me, I have been making many new friends who share the experience of having a loved one with autism.  I have never met them in person.  They live in far off places like California, Louisiana, and the other side of the state I live in.  Yet with each person, I feel an immediate bond and kinship.  We are part of a special club that is uniquely blessed.  They tell me my blog inspires them.  They in turn inspire me with their stories, ideas, and love for their kids.

I have asked permission from Ellen to post her story here: 

“I too enjoyed reading your blog. It is never too late to start learning about our autistic children. RPM, Soma and Brianne have changed our son’s life for the better. He will be 45 years old next month. The first time he worked with Soma was 4 years ago. These last 4 years we have found out all about the total person that lives inside a "locked body". He is bright, thoughtful, funny, inquisitive and frustrated. We view him differently and treat him differently now. He is still autistic, but he is also a full person. Since he lives in a group home and we spend the winter out of state we have very little opportunity to work with him using RPM. However soon we will return to Austin to see how Soma can help him to move along to become more independent. He currently says each letter and then the word as he touches the letter board. He then types three words he just spelled on the iPad. This still requires someone with RPM training to help guide him. His progress is amazing. We have so many wonderful quotes from him. One of my favorites is, "I want to thank my parents for never giving up on me."”

My desire is that more people will find these stories of hope.  When I read Ellen’s son’s words of thanks for never giving up on him, it struck a chord in me.  It’s never too late.  It’s never too late.  I think a lot of parents out there need to hear that.  I needed to hear that when I was going through the years Philip was showing no progress, when the nagging thoughts “it’s too late, it will never change, you’ve failed your son” replayed in my head and brought me to the brink of despair.  People need to hear that even at age 41, it is not too late.  I love Ellen’s words describing their discovery of the “total person” that lived behind her son’s locked body.  As a society, we need to see autistic people as being as complete as anyone else.  They are not less than or deficient.  When we start viewing them as such, we run the risk of seeing them as a burden, a nuisance, something less than human.  It is scary to think about the repercussions of this thinking.  I believe every person born on this earth is a total person, worthy of respect, dignity, and love.  Our kids, no matter what the age, are worth fighting for.  

If you are reading this and are a parent who is despairing because of their child, feel free to comment or message me on FB.  If you want to contact Soma to teach you how to more effectively communicate with your child, please visit www.Halo-Soma.org . 

It is never too late.     

 Philip at the Lose the Training Wheels Camp 2012