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! 

                

The Diagnosis

People often ask me how we first found out Philip was autistic.  Did vaccines cause it?  Did he develop normally, then regress?  To this day, it’s hard to tell when Philip began to show signs of autism.  As a baby, Philip seemed very normal.  He was adorable and smiled at an early age.  He had colic from about 2-6 months of age and was inconsolable, except for in the swing.  I remember thinking the swing was a lifesaver.  But by the second half of his first year, Philip was a model baby.  I could put him in the middle of the room and he could entertain himself for hours as I attended to his older siblings Ana and Carlos or did chores around the house.  He seemed as happy as can be.  When Philip was 15 months, we moved to Miami, FL for Sam’s residency training in ENT.  When I look at pictures at that age, Philip seems so normal- smiling and pushing a truck, digging in the sand.  Autism never entered my mind.  At 18 months Philip had his MMR vaccine and was on schedule with his other shots.  There were no obvious reactions.  At this time, I joined a Mommy and Me Playgroup in my town and met some moms with kids the same age as Philip.  None of the kids played together yet and Philip looked to be at the same developmental level.  As Philip went from 18 months and 2 years is when I first began to have a mother’s instinct that something was not quite right.  The other children in the playgroup were beginning to talk and interact with one another, but Philip still had no words.  He still played at a distance from the others and did very annoying things the others did not do such as dumping a box of crayons on the ground without fail each week, taking the books off the bookshelf, and climbing the shelves.  

Even before Philip was diagnosed, I came up with the idea to start a co-op style Moms and Tots group called Tykes of the Springs or TotS which got its name from the town we lived in, Miami Springs.  I wanted something more structured for Philip so he could learn to socialize and have the building blocks for learning.  The other moms were similar minded as far as wanting a program with an educational component so we all worked together to make our “co-op preschool” in the Sunday school room of the little church I went to, First Presbyterian of Miami Springs.  I lead a circle time with a hello song, stories, games, and an interactive music time.  The moms took turns bringing healthy snacks and leading a craft or other learning activity.  Another mom designed and made T-shirts for our group, set up a Yahoogroup site, and arranged for us to march in the 4^th of July parade each year.  Other things stemmed from it- a book club, mom’s nights out to dinner, holiday parties for the families, and field trips to the petting zoo.  We had made a wonderful community and life was very good in that aspect.

But despite my efforts to boost Philip’s development, he seemed stuck.  At home I sang nursery rhymes, read to him, tried to get him to utter a word or imitate me, but nothing seemed to be penetrating Philip.  I remember thinking, my first 2 were sponges, but this one is like a rock.  

At age 2, I expressed to my pediatrician concern about Philip not speaking.  He assured me that many kids at this age still don’t talk so it was too soon to worry.  We would monitor him for now and come back in 6 months to reassess.

In May 2005, my daughter Lia was born.  My parents took Philip to Buffalo for 2 weeks while I took care of my newborn.  My mom said her mission was to get Philip to talk.  She bought Philip his first set of flashcards, which Philip grew to love, but the only word Philip uttered with her was “ma,” and they weren’t sure if he was asking for me or asking for milk.  

I spent the summer with the kids at my parents’ house in Buffalo while my husband worked long hours in his surgical internship.  I started combing the internet to figure out what was wrong with Philip.  Autism was what I suspected.  When I read the criteria, my heart sank.  To diagnose autism, a child demonstrates symptoms in 3 categories:  social, communication, and restricted repetitive and stereotyped patterns of behavior.  Socially, Philip did not take an interest in other kids.  He did not imitate, point, show objects of interest to others, or play appropriately.  He did not respond to his name being called.  Philip’s speech was obviously delayed.  As far as behaviors, he did have some repetitive ones such as lining things up and spinning.  Every checklist indicated Philip did indeed have autism. 

I cried, but thought now I can do something.  I called Diana, my friend in Miami, to ask how to get Philip an appointment for early intervention as her son had went for sensory issues and now was doing well.  I called my friend Marie whose husband did some research that was autism related and she told me about the gluten free casein free diet and I started Philip on that.  A part of my heart still held out the tiniest hope that it wasn’t autism.  I had not gotten the official diagnosis yet.  

We returned to Miami in August.  I went back to my pediatrician in an angry mood.  I told him flat out my son had autism and showed him the checklist indicating he had all the symptoms.  I was angry because if he had caught it earlier like he should have, we could have started intervening earlier and could have curbed it (so I thought at the time).  He began the work-up, referring us to the pediatric neurologist, audiologist, and EI (for which I had already made an appointment).

About a week later, Sam and I took Philip to the early intervention evaluation at Jackson Memorial Hospital where my husband Sam now worked as a resident in ENT.  It was a few hours of testing with toys, flashcards, and interacting given by a 3 different people.  During one test, the man testing Philip pointed at a colorful picture on a side wall (was it a clown?  I can’t quite remember) and exclaimed, “look at that!”  Philip remained looking forward with a blank expression as if he were deaf.  At that moment my whole heart knew for sure that Philip was autistic.  The evaluations from IE indicated language and social development at 9mo-18mo range.  We were referred for early intervention preschool at the Debbie School at Jackson Hospital and a neurologist to make an official diagnosis.  The neurologist confirmed the official diagnosis of Autism Spectrum Disorder (ASD).  I remember sitting with Sam at the hospital cafeteria after Philip’s diagnosis in tears, fearful for Philip’s future, but also a little relieved that there was something we could start getting to work at to ameliorate.  

And so began our journey.  We had a lot of work ahead.

                                            Philip at his work table at home

                                              TotS at 4th of July Parade

                                                 Circle Time at TotS

                                          Graduation Day at the Debbie School