Philip's Schoolmate

There was an article in last Sunday's paper about the Greenans, a family in West Seneca , NY with 5 children, all with autism.  You can read the article here.  The Buffalo News follows the family one year after it introduced them to our area for being unique in having so many children on the spectrum.  The article talks about triumphs in the past year, including oldest son Joe Jr. being mainstreamed in a public high school and landing a main role in a local musical as well as another son Quinn who participated in the Special Olympics.  However, the main part of the article focuses on their son Sam, age 11, who is severely autistic.  Sam was expelled from his special education school for severe behavior issues, forcing his parents to look for another placement or possibly send him to an institution.  Presently he remains at home with them all day.

I talked to Philip about this.  Philip knew Sam from his school.  I asked Philip what he knew about Sam and he replied (Philip's words will be in CAPS), “HE IS A TOUGH KID.”  “What was tough about him?”  “HE HIT TEACHERS.”  “Did he hit kids too?”  “Y.”  “What can the teachers do to help him?” “THE TEACHERS SHOULD NOT ATTACK HIM.”  

I thought that was an interesting response.  I have seen teachers restraining kids at school.  I know they have done it with Philip too.  From our perspective, we see it necessary to keep others from getting hurt.  But in my son’s eyes, a kid is getting attacked by an adult, sometimes more than one.  That has to be scary.

I then asked Philip, “Why is Sam a tough kid?”  “HE A EYE ATTENTION ONE.”  “Are you an eye attention kid too?”  “Y.”  “What is eye attention?”  “EYE ATTENTION IS WHEN YOU IN WORLD OF YOUR OWN.”  “Why do you think he gets so upset?”  “DEPRESSED.”  “Why?  “LONELY.”  “What do you think depressed means?”  “SAD ONE.”  “Do you think Soma can help Sam?”  “Y.”  “How?”  “SHE CAN ATTACH YOU TO A TEACHER.  A TEACHER THAT CAN BRING A THOUGHT OUT.”

This idea of a child trapped in his own world is heartbreaking.  The saddest part is that he does not choose it to be this way.  Because he cannot express his thoughts and feelings, there is immense loneliness and frustration.  Frustration that comes out as tantrums, violence, and self-injury.  Please click here to read this first hand account of non-verbal autism from Ido Kedar in his speech “Imagine Having Autism.”  He tells it much better than I ever could.  And to Sam, Philip, and all the other “Eye Attention Autistics,” here is Ido’s letter to you. 

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My original post was going to end here, but after Philip reviewed it this morning, he spelled, “ADDRESS COMMUNICATION.”  I will add another link that explains the importance of communication from a first hand perspective.  This is an interview with a non-verbal autistic adult Tracy Thresher who describes the liberation of his soul from learning to type to communicate.  

Learning to communicate has to be the key in improving the standard of living for autistic individuals.  It is not enough to control behavior using rewards and behavioral techniques.  If a person can communicate, they can join the human race which is what they, and we as his family, really want.  To be known for who you truly are is one of our most basic needs.  Give a person the means to do that, and bad behavior from frustration will come less and less.  I can attest to seeing the overall improvement in Philip’s life.  Since learning to communicate, Philip is visibly happier.  Though he still does his own thing in his world of stims, his time there is becoming less and less.  He joins us more in “conversation.”  He sits longer with the family.  He is less like the Tasmanian devil who used to blaze through the house leaving destruction in his wake.  Even his teachers at school and at church notice a difference.  He is sitting and paying attention longer and joining in with the kids more.  He is more aware of what is going on in our collective world.  For me, as his mom, the world is a much brighter and hopeful place now that Philip can communicate and I can get to know him.

The “proof is in the pudding” when it comes to communication.  As a parent, I see the obvious results of teaching real communication to Philip.  I cannot wait for a school board to approve it or for double blind studies to give it the thumbs up.  Sadly, most autistics are still not learning to communicate in the most effective way they can.  Some people will never be able to produce speech even if they have speech therapy 24 hours a day for the rest of their lives.  Picture exchange communication will only get a person so far.  You try talking with only pictures and see if you can express your deepest thoughts with just pictures.  Often those who do communicate by typing or spelling on a letterboard are dismissed as frauds or manipulated by a facilitator.  That is just not true the majority of the time.  We cannot let fear of what other people think, or what experts debunk, keep us from giving our kids true communication.  

I am excited to see more and more autistics speaking out in their writing and seeing their souls being set free.  I pray this would be just the beginning of a new movement in education and “treatment” for autistics.  The world is a much better place because of the perspective they lend us and the lessons they teach us.   

Philip's first day of school

What Makes You Happy

The last two days, Philip came up with a list of “What Makes You Happy?”  Here is his list:

1.       CAN APPEAR IN A BLOG

2.       KIDS AROUND ME

3.       EACH DAY I LEARN THINGS ABOUT THE WORLD

4.       BEING SMART

5.       A DAY EATING OUT AT A RESTAURANT

6.       ANY MUSIC (favorite music artist is BEATLES)

7.       A DAY AT OUTER BANKS

8.       ASKING A QUESTION

9.       A DAY AT THE BEACH

10.   A DAY AT (of) SANETY (When asked what he meant by that, he replied NO STRESS.  I asked him to give an example of how this could be achieved.  He replied, BEING LOOKED AT AS YOU (look) AT ME

Not to be outdone by Philip, I decided to come up with my own list of what makes me happy:

1.       Writing a blog and seeing people care about what I write

2.       Hanging out with friends

3.       Learning new things, especially about Philip and autism in general

4.       Discovering my talents and purpose

5.       A great meal, especially if it is on a date with my husband at a nice restaurant

6.       Art that moves me, whether it be in the form of writing, music, dance, or visual art

7.       A day in a new place, vacation

8.       A heart to heart talk, especially with my kids, Sam, and my best friends

9.       A fun day with the family

10.   A day when things go right (Seeing your kids make good decisions, watching your favorite team or athlete win- my kids or the Bills, being amazed at God’s blessings)

I have to admit, I kind of cheated.  Philip’s answers were so good, I modeled my answers after his.  It really does summarize what makes me happy!  It just goes to show that we are more alike than not.  I also noticed that what makes Philip happy isn’t necessarily what he is drawn to doing- namely stims.  He has told me he enjoys stims (pacing, flapping, tapping objects), but that he needs help stopping because it keeps him away from everybody.  He has said too much stimming is bad.  I am again reminded of how similar we are.  In our human nature we are all drawn to things we ought not to follow to extreme though they may provide us temporary pleasure but no real happiness.  Here’s a short list, but many other things can be added: materialism, gluttony, fame/notoriety, substance abuse, lust, self-absorption.  My hope for both of us, in fact for all mankind, is that as we focus on what truly makes us happy, all the other things we are drawn to but don’t give real satisfaction, will become less important and lose their hold on us. 

 Philip enjoying the calm beach.

 Labor Day 2013- A Day at Beaver Island State Park with Friends

Music

Philip has always loved music.  In fact I think his first real words were to music.  I would sing him, “Twinkle, twinkle, little ___”  Philip would fill in “stah.”  Throughout the years, even if we did not have conversation, we would enjoy this tag-team singing together, always filling in where the other left off, but not singing simultaneously.  Eventually Philip could sing the whole song by himself.  Philip’s helpers at church tell me often that he sings praise and worship songs very well.  Once, a teacher at school asked if we listened to Kiss 98.5 in the car, which we often do.  Apparently Philip was singing some of those songs at school.  

When we saw Soma last October, Philip answered his first open ended questions.  Really, it was the first time we ever knew what his desires were aside from what he wanted to eat or drink for a snack on a daily basis.  It was during our very last session of our 4 day stay in Austin.  I remember Soma leading the path of communication from something we could all answer to more and more only what Philip could answer.  She began, “What color is your shirt?”  At that time Philip was using three stencil boards which limited the number of letters that could be picked.  Soma even made him pick which stencil to use.  She ripped three pieces of paper onto which were written, “A-I,” “J-R,” and “S-Z.”  Slowly the process began with Philip picking the paper of the stencil he needed and then pointing to the letter, then repeating the process for each letter one by one.  “GREEN,” he finally spelled.  Then Soma said, “I am thinking about Christmas.  What color would you like to wear for Christmas?”  Again, Philip went through the process and spelled, “RED.”  Finally Soma asked, “Now I am thinking about a Christmas present.  What present do you want for Christmas?”  As Philip chose his stencil and picked his letter, we all sat at the edge of our seats.  I never knew what to get Philip for presents for any occasion.  Usually it was a toy that never got played with.  Another year it was a pack of straws that Philip loved to use to stim.  Now he slowly spelled, “R-A-D-I-O.”  It made complete sense!  I have always known Philip loved music.  Tears were streaming down my face.  I knew he was going to get lots of radios for Christmas.  He did- 2 from each set of grandparents and 2 from us!

Recently, Philip has been into the Beatles.  When we are in the car, he always asks for “music” and will say it out loud over and over if there is no music turned on.  A couple of times Philip has had the opportunity to put a CD in and has picked the Beatles CD over and over again.  Today Sam and I did a Beatles lesson for Philip.  They actually had a short movie on them on Brain Pop.  Philip was able to answer the names of some songs.  He spelled out “HEY JUDE, PAPERBACK WRITER, LET IT BE.”  When asked which one was his favorite, Philip, always being the diplomatic one, spelled, “ANY.”  We asked Philip where the Beatles were from.  Expecting England to be the answer, Philip went even further and spelled “LIVERPOOL  ENGLAND.”  He knew they were a band in the 1960s.  He was able to name “JOHN LENNON” and “PAUL MCCARTNEY”, but needed help figuring out the other two.  I gave him clues by showing my ring and saying the last name is something out in space.  “RINGO STAR,” he produced.  Then a king’s name who was the son of Harry was figured to be “GEORGE HARRISON.”  At the end of the night, Philip chose “Strawberry Fields Forever” on Sam’s iPhone and we danced.    

 Philip wears red and gets one of his radios for Christmas in Albuquerque 2012

Soma Videos and The Lord's Prayer

Here is a small portion of one of Philip's sessions with Soma back in May.  I hope it will be of help for anyone working with him.  Click here.

You can see how far he has come from his first time meeting Soma.  Here is some video from Philip's first visit to Soma in October 2012.  Click here.

A couple weeks back, Lia and Philip had a lesson on The Lord's Prayer in Sunday school.  My daughter filled out her own version of it so beautifully that I wanted to see how Philip would do.  Here's what he came up with tonight (I wrote out the words as he spelled).

At the Movies

One of the reasons I blog is so I can cherish simple pleasures and someday look back at them with fondness.  Today was such a day.  I took in a movie with the guys in my life- my husband Sam and sons Carlos and Philip (the girls were with their friends).  We watched the newest Disney Pixar movie Planes. It was the first time we took advantage of AMC Theater’s “sensory friendly films.”  At these showings the volume is not ear blastingly loud, the lights are kept dimly on, and the silence is golden rule is suspended.  They show these films once a month.

I have to say, I think I will patronize AMC more often!  I will have to send the company a thank you note and hope other establishments will follow in making accommodations.  It was a wonderful experience to be among families with special needs.  For the first time, I could completely relax at a movie with Philip.  I didn’t have to worry about him making too much noise or getting up from his seat.  I didn't have to worry about other people's discomfort or judgement.  Actually, Philip was amazing!  He would have even done well in a regular movie (but you bet I’d be more anxious).  It could have been that the theater was so comfortable.  The chairs were large recliners you could put your feet up in.  The volume was just right.  Philip sat quietly watching the movie intently.  I kept nudging Sam to look at Philip as he was so cute watching the movie with his popcorn.  The audience was a little louder than usual, but it didn’t bother me one bit.  Some parents were following their children through the aisles the whole time.  One kid got excited at parts of the movie and would shout something out loud.  There was crying here and there.  I actually felt happy that the families could be so free.  Despite it all, I was able to concentrate on the movie and really enjoy it.  I must be used to blocking out background distractions!

When we got home I asked Philip about the movie.  I admit I was quizzing him a little.  I wanted to see how much he really took in.  Here’s how our conversation went.

L: What movie did we see?

P: PLANES

L: Who was the main character?

P: DUSTY

Philip was pretty hyper with a big smile on his face.  He got into fits of laughter that made it a bit hard to engage him at first.  Finally I asked, “How are you feeling?”

P: I AM HAPPY

L: What are you happy about?

P: YOU CARE.  YOU ASK ME HOW I FEEL.

L: I am happy too!  I really enjoyed the movie.  Did you?

P: Y

L: What did you like about the movie?

P: EASY TO UNDERSTAND

L: What part did you like in the movie?

P: AT ONE TIME DUSTY ASKED THAT SAME QUESTION I ASK

L: What is that?

P: CAN I PLACE IN THE COMPETITION?

At bedtime I asked Philip what he was thankful for today.  “MOVIE,” he replied.

I am thankful for the joy I had in seeing Philip enjoy the movie.   I am also thankful each day to hear each of his words.