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

Dealing With Challenges

Autism is definitely the most challenging thing I have ever dealt with.  Not a day goes by without a myriad of challenges that greatly test my patience, character, and endurance.  It’s easy to see how autism is a challenge for parents and caregivers.  Lately my mind has been switching things around.  How much more challenging must it be for an autistic person to function in a world where most people are “neurotypical” and the world revolves around expectations and rules made by us “normal” people. What can I equate this to?  Imagine going to bed in America and waking up the next day in the jungle of the Amazon among its native people.  Your mind is still completely intact and you have all these thoughts and feelings, but everything about this culture is foreign to you.  You cannot communicate because their language is different.  Even their gestures have different meanings.  You do not understand their rules and expectations.  You are fearful and anxious because you are not of these people.  There is misunderstanding on both sides.  Perhaps you try to keep to yourself for safety or because it is just too hard to become like them.  More on this analogy later…    

One difficulty we have been having for several months is having Philip sit up with us in the church sanctuary during the worship, or music, time.  He is completely fine in Sunday school and Children’s Church, which are in smaller rooms downstairs.  In fact he runs into his classroom with a big smile on his face each week.  However, it all changes once we pick him up and transition him to the “big” church.  He starts to whine and we often have to drag him upstairs like a sack of sand.  Either that or he takes off running in any direction but the sanctuary.  We’ve had to chase him down the hall, in the flower garden, the gym, you name it.  He is so quick and stealthy (like a Ninja!) we cannot take our attention off him for even a second.  My husband Sam and I have tried many things to get Philip into the sanctuary- bribing him with his favorite fruit and candy, going up a different stairwell, getting him in early before the room has had a chance to fill.  We’ve had very limited success.  He either cries or we end up keeping him in the lobby or another room until it’s time for Children’s Church. 

Until recently, I have mostly looked at this situation from my perspective.  I was frustrated and tired. I could not relax and talk with friends.  We could not sit together and worship as a family.  Why couldn’t my child sit like the other kids in church?  We must be causing a disturbance.

Philip’s ability to communicate has helped me understand him like never before.  His communication is still emerging and is difficult and labored, but I know it will only get better in time and with practice.  I have tried in the past to have Philip explain why he didn’t want to go to church, but he was not able to tell me until tonight.  We were discussing another challenge from the night before in which I reacted strongly to a mess Philip had made.  This had escalated to a full blown tantrum with Philip crying, screaming, and pulling at my hair and clothes.  It resolved itself eventually, but I wanted for both of us to understand it so we could avoid such an interaction in the future.

Me: Do you remember what happened last night?

Philip: You were mad.

Me: Yes, I was mad because of the mess you made, but I should have controlled my temper.  How were you feeling about what happened?

Philip: Sorry.

Me:  I am sorry too for how I reacted.  How do you think I could do better next time?

Philip: You should not yell.

Me: How did it make you feel when I yelled?

Philip: tense

(continuing conversation a little later)

Me: What are some things that make you upset?

Philip: I do not know

Me: What about church?  Why don’t you like to go upstairs to the big church?

Philip: The room is too loud

Me: Would it be ok to keep trying to go?  Maybe you will get used to it.
 Philip: N (for no)

Me: Should we just sit in a different room?

Philip: Y

Me:  Would you try the big church in the distant future?

Philip: Y

So let’s go back to my analogy above.  It would obviously be scary to find yourself among an unknown Amazon tribe.  But what if this tribe went out of its way to welcome you, take you in, and protect you?  What if they accepted you and really worked hard to help you learn their language and ways?  What if they met you half way if you couldn’t quite adapt?  Maybe, just maybe, you would no longer fear them.  Maybe you’d want to try harder to connect.  Maybe you could live among them with purpose, peace, and great satisfaction.  Maybe that tribe would be better because of you.  Maybe….    

         

A Friend for Philip

Philip made a friend today!  Today is a landmark moment because it is the first time Philip exchanged original dialogue with a peer.  I say original because I wasn’t the one telling him, “say hi” or “say bye, “ which is a common social exchange all our kids are rehearsed to say.  The words were all generated from Philip, even though I did have to hold his board for him and be his physical voice as he spelled. 

Today was a very happy day for me.  In the morning Philip and I visited some of my friends, one who was visiting from out of town.  There were a lot of kids there, six kids ranging from age 8 to 17.  Several were playing Nintendo Wii and were laughing and having a fun time.  While Philip didn’t join them, he seemed to be observing them, sitting quietly on the couch behind them (an improvement from stimming  alone in the corner with a pop bottle as he did the last time we all got together) .  At one point my friend asked about my new communication with Philip.  I wasn’t sure if Philip would demonstrate his new skills with them, but I decided to try.  I brought him over to my friends with his stencil board and introduced him to my friends, telling him how we met and how long we’ve known each other.  Then I asked him, “Would you like to say anything to Miss C and Miss J?”  Philip spelled, “Real nice to meet you.”   My friends had tears in their eyes as he spelled and my heart was bursting with pride.  

Later that day we visited my friend Susan and her son Michael who is 13.  Michael first learned to communicate with Soma when he was 8.  He is now able to type on a keyboard and iPad.  He goes to public middle school and with the help of an aide, has been able to take regular classes with his peers.  His mom even proudly showed me his social studies final exam in which he got an 87%.  We have been so blessed to have them as our mentors and role models as they are blazing a trail for a lot of families like ours in Buffalo to follow in their footsteps. 

Philip has expressed an interest in learning to type, so Susan showed us various things we could try.  There are a range of keyboards you can hold up like a stencil board and eventually lie on the table as less support is needed.  Michael uses a bluetooth keyboard the size of a cell phone to type onto an iPad program called Proloquo.  It then reads his text out loud.  Susan was good about explaining things to Philip and assumed he was intelligent and listening even though he would walk around and look off into the distance as if he were not paying attention.  

We then got our boys together to “talk”, Philip using his stencil board and Michael using his iPad.  This is how it went:

Philip: Do you like school?

Michael: Yes.  I am very popular at my school.  Do you want to learn grade level stuff?

Philip: Yes.

Susan: What are your favorite subjects?

Philip:  I am interested in math.

Michael: The brain and neuroscience. 

Susan: Is there anything else you want to tell Philip about your school?

Michael: The teachers are great.

The boys then had fun jumping on the trampoline together.  It was such a happy visit.  Susan and I vowed to make it a regular routine to get together with the boys.

Tonight I asked Philip what his favorite part of the day was.  He spelled, “Talking to Mical.”

I think this is the beginning of a beautiful friendship!