So Hard

Philip’s newfound ability to communicate with his letterboard has been nothing short of a miracle to us, but it doesn’t mean it has been easy for Philip.  One thing that has been occurring more frequently is Philip has been banging his head.  Sometimes it is against the table or floor and sometimes he hits his head repeatedly with his palm.  It is clearly a sign of frustration and is very upsetting to watch.  I try my best to block him and he eventually settles down.  When I look at the past, Philip has exhibited this behavior during times of rapid learning or drastic change.  When Philip was around 3, he began a therapy called ABA which helped him start to speak to identify objects and make requests for favored things such as candy or chips.  The learning seemed to occur so rapidly in the beginning, but it never translated to using speech for real communication other than simple requests.  I do believe though that ABA gave Philip a great foundation of skills for learning, even though we could not readily see the evidence of it until just recently.  During that time, we saw Philip have tantrums for the first time, some with frightening intensity.  He was being stretched for the first time and it was so hard.  When we moved back to Buffalo from Miami in the summer of 2009, Philip seemed to have a hard time adjusting and once he banged his head so hard on our kitchen bay window that he cracked the glass. 

A couple nights ago Philip was crying at bedtime and I couldn’t understand why.  We had had a nice day at church and then a party with all of the soccer families from my 13 year old son Carlos’ team.  I asked Philip how he was feeling.  Philip slowly spelled, “I am awkward.”  I asked Philip what he meant by that.  “I can do nothing,” he spelled.  It was sad for me to hear that, but I encouraged him, “That’s not true.  You can do a lot of things.  You can read, spell.  You know how to swim.  You are doing so well communicating now and you will only get better.”  Philip seemed to settle down as I said prayers for us, and after I kissed him good night, the thought of Philip’s words lingered.

How hard it must be for Philip.  For years Philip had lived mostly an internal thought life.  I never knew what he thought.  I didn’t know how to access it and he didn’t know how to reach us so there was a great divide and in many ways we lived in separate realms.  Philip used stims to pass the time- pacing a path in the backyard mapped in his mind, twirling a leaf, drumming on the wall, or banging two blocks together.  What this all meant to him, I may never know.  

But things have changed drastically since we met Soma and learned Philip could spell and could communicate his own thoughts on a letterboard.  A bridge was built to link our worlds and it has been the most amazing thing to see Philip’s words and understand him for the first time.   But it is still hard, so hard.  For one, it takes a lot of energy out of Philip to communicate.  For us normal people, we can spew out paragraphs of words in a minute.  For Philip, he must painstakingly spell each word, letter by letter.  He must hear the question.  Come up with an answer.  Translate it in his mind to written language.  Coordinate his finger to point to the letter and keep track of his thought as he scans the board for the next letter.  It takes time, a lot of time.  One sentence can take up to five minutes sometimes.  It takes patience to finish spelling his thought and to trust the person on the receiving end will stay with him till the end.  Philip sometimes makes mistakes in spelling, loses focus, or has a need to take a break.  Sometimes he hits his head.  I will often ask if he wants to stop.  Sometimes he does, but more times than not, he wants to keep going.  As hard as it is, he wants badly to communicate. 

 

I admire Philip so much.  He is stronger and braver than me in so many ways.  Going out with his letter board to communicate with others is in many ways like trying out a foreign language in another country.  I myself am terrible with foreign languages.  I don’t try hard to learn them.  My parents speak Tagalog and Ilocano, languages of their native Philippines, and I lived in predominantly Spanish-speaking Miami for 5 years.  I had many opportunities to learn many languages, but I didn’t.  I wish I could have because it would have opened up the world to me.   Instead, when people start speaking a language other than my own English, I space out, leave, or ask people to translate.  I guess I am autistic when it comes to foreign languages.  My brain just doesn’t seem wired for them!  

So I tell Philip how proud I am of him.  His work is ten times harder than mine.   His mind is not wired for this world, but he works so hard to get through to us that he wants to join us.  I pray it will be easier for him in time.  I will do all I can to help him.  

                            Philip with Soma at the HALO Clinic in Austin, TX- Oct. 2012

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

Happy 4th of July!

We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable rights, that among these are Life, Liberty and the pursuit of Happiness.

We are so fortunate to live in a country founded on this principle which gives its citizens a voice to secure these rights and be governed by the consent of the people.  Our country has not always lived by this standard, but it has come a long way and still must strive forward to live this ideal.

One frontier is in the area of people with disabilities, including autism.  How can we start?  (These are just a few ways, and are ideas from autistic people themselves)

1.      See an autistic person as a complete individual with thoughts, feelings, preferences, and dreams.  They are more like us than not.  Accept, respect, and include them as people of the human race.  Treat them as you would want to be treated yourselves.

2.       Emphasize communication.  Communication is not just vocal speech.  It can be written, typed, gestured, spelled by pointing, signed, or pointing to pictures on an ipad or device.  We need to teach communication at all costs, support it, and take time to listen to them.  It is the primary way a person can be known and have some self determination for his or her own life. 

3.       (Here’s a neat idea from Jennifer Byde Myers, founder of Thinking Person’s Guide to Autism.  I’ve also added some of my own ideas along with it) Create an Autism Corps, like the Peace Corps.  Train a generation of young men and women to work with autistics who need support in daily living skills and communication.  Include autistic adults in helping families with newly diagnosed children “find the ropes” in knowing how to care for, understand, and advocate for their kids. 

                                                      Happy 4th of July!!!

The Haircut

Haircuts are really hard for Philip.  So are dental cleanings, doctor’s visits, and nail trimmings.  Perhaps some of us experience a little discomfort or nervousness when we have to subject ourselves to someone else touching our bodies for health and grooming issues, but we somehow manage to keep it together.  For Philip, these things provoke major anxiety which results in a major meltdown with kicking, clawing, screaming, and crying.  It takes more than one person to restrain him and get the job done.  It produces a lot of anxiety in me that I often want to cry myself.

We have a family friend who has cut Philip’s hair for 4 years.  This is because we would not dare take him to a public barber, knowing what his typical reaction is.  This is how it usually goes.  Someone at my parents’ house (where we often get together on Sundays with extended family) says, “Come on Philip.  Time to get your hair cut!”  Philip immediately runs the opposite direction and tries to hide under a blanket.  I go and try to coax him out gently but to no avail.  My mom comes and dangles grapes or a nectarine in front of him saying, “You can eat this after your haircut.”  Philip does not budge and he is whining and won’t let go of the blanket.  Finally on the verge of yelling I state, “you need to get a haircut!  Your hair is too long and Uncle P is waiting for you.  Let’s go NOW!”  I have to grab him with all of my strength, straining my back as I pull and drag him as he actively falls to the ground, flailing, and now at a full wail.  My back aches just writing about this now.  I then sit on a stool holding Philip down on my lap with all my might as he struggles to free himself.  One aunt holds his arms down.  Another holds his face still while tears are streaming down as he cries.  Uncle P works as fast as he can.  Sometimes Philip falls to the ground and Uncle P follows along.  He is a real good sport, always willing to do his hair despite the major production.  After the hair is cut, everyone breathes a collective sigh of relief, tells Philip how great he looks, and off runs Philip with his fruit as far from us as possible.  

Yesterday, was a wonderful departure from that.  We were in the backyard at my Mom and Dad’s house sitting on the deck and watching the kids swim.  My sister Kit had learned to give haircuts from YouTube and was trimming her son’s hair.  She did a nice job.  I half-jokingly asked, “Will you cut Philip’s hair?”  His hair was getting so long that I was constantly brushing it out of his eyes.  My sister responded, “sure.”   Philip was enjoying himself in the spa, as he always has loved water.  I went over to him with the letterboard and said, “Philip, your hair is getting really long and I would like to have it cut.  Would that be ok with you?”  Surprisingly, he pointed to “Y”.  I was thinking he didn’t hear me right or accidentally pointed to the wrong choice, but I calmly went on, “Would you let Auntie Kit cut your hair?” “Y’ again!  I then brought a towel over to try to get him to come out and sit on the deck but he just kept happily circling the spa, not coming out.  Kit then came down to him and began talking to him very patiently and gently trying to at least get him to come out and sit at the edge of the spa.  He wasn’t coming out yet, but instead of forcing him, Kit said, “whenever you are ready you can come out and I will cut your hair.”  It took about 10 minutes and he brought himself out and sat at the edge.  We asked him if he was ready.  “Y.’  Philip started to whimper, but he did not move.  I put my hands on each side of his chest to support him while Kit cut.  I could feel his heart rapidly beating through his skinny frame.  I knew he was doing everything in his power to not lose it and stay still.  This was huge for him!  Kit and I kept calmly encouraging him, “You are doing so well.  I’m so proud of how still you are sitting!”  At last, the haircut was over.  It was the best haircut he ever had!  Everyone was so proud of him and complimenting him on his do.  Even Philip seemed to be smiling with pride. 

A haircut.  It seems like it should be no big deal, but for Philip this was a major milestone.  I think certain things will always cause more stress and produce a more visceral response in him because of the way his brain and nervous system are wired.  But at the same time, this incident also showed how he didn’t have to be a slave to it.  He could learn self-control and self-mastery.  I believe Philip’s new found communication is a big reason why.  Communication gives people power to have a say and make their wishes and feelings known.  This same power can extend to other areas of a person’s life, giving them power to face fears, overcome obstacles, and dream bigger than they originally thought possible.  It makes me excited for Philip knowing how far he has come in just less than a year of being able to communicate, but this is really only the beginning.  There’s a big future ahead with many more “haircuts” to overcome!  

Philip and Auntie Kit after his haircut