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!