Friday, July 5, 2013

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 4th 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

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