Today is Philip’s 11th 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 11th birthday is indeed a most happy
occasion. Happy Birthday Philip! May you reach for the stars!
I couldn't be more proud of Philip and excited for his future too! He is such an inspiration to Aidan and I. Indeed he is a bearer of great news with a very fitting name. May God continue to pour out His blessings upon you and your family! Happy birthday, Philip!
ReplyDeleteThanks so much! It's been a privilege to walk this journey with you and Aidan. I love that the boys are becoming friends just as we are!
DeleteOh Happy Birthday Philip - it is so wonderful to see how far you have come in such a short time. Many more happy times ahead!
ReplyDeleteLove Sue and Chris xx