Video: Philip Typing About News in Iraq

Transcription:
Lisa: What is going on in Iraq?
Philip: In Iraq there is fighting because Muslim terrorists are openly persecuting the minorities.
L: What should we, as the US, do?
P: I think we should fight to help them.

Philip also typed today:  I want to type well because it is utilized in many situations.  Real world uses the typed word all the time.  For we come to communicate by texts, facebook, and emails.  I am now part of the digital age.

Yes you are Philip!  How exciting it is to see Philip progressing in his knowledge and skills, and becoming more and more included in the greater world.  Philip is the first to tell me he is not exceptional.  He has had the opportunity to learn to communicate because of Soma.  He now wants to make sure all those who cannot effectively speak can have the same chance to communicate through spelling and typing.  Philip wrote on his Facebook page last week:  I am not being notable being a learned kid with autism. There are many like me.  Heading to mean to rescue them from their silence.

*  For those of you wondering, Philip uses the iPad app called Assistive Express and the Apple Bluetooth Keyboard.

I Am Listening

As parents we need to monitor what we say around our kids, whether they have typical neurology or not.  A classic example of this is not to swear in front of the kids or else we may hear the same kind of language coming out of their mouths.  Aside from this, we should make sure we are not discussing in front of them things our kids are not mature enough to handle.  It is a bad habit of mine to be lax in what I say around Philip.  It comes from years of assuming that because Philip didn’t talk, he wasn’t listening. 

I now know that this line of reasoning is completely wrong, but I still have not completely overcome the habit of talking as if he were not there.  This is extremely important for me and others to get right because what our kids hear us say about them or what relates to them can greatly impact how they perceive and feel about themselves.

Yesterday a few of us adults were discussing Finley Boyle and Jahi McMath, two children ages 3 and 13, who became brain dead after routine dental and surgical procedures.  In the case of Jahi McMath, there is controversy over what constitutes death.  The hospital would no longer treat the girl who was pronounced dead after she went into cardiac arrest and showed no brain activity after a procedure for sleep apnea.  However, the girl’s family fought in court to keep their daughter on the ventilator because they said she showed signs of improving such as moving to her mother’s voice or touch and indications on a hospital monitor suggesting the girl tried to breathe on her own.  I am not going to weigh in on the ethical debate but will say it is a very sensitive topic.  A few of us postulated under what circumstances we would want to be kept on a ventilator or be allowed to die. 

As we were having this discussion, Philip was in the room and began crying.  I tried to get Philip to tell me what was wrong on his letterboard.  He managed to spell a few things which I can no longer exactly recall, but he was clearly upset about the conversation he was hearing.

 

Today after school and his home lesson, I asked him what he wanted to talk about.  “Death and Acceptance,” he spelled.  “Is this related to the conversation the adults were having yesterday?” I asked.  “Y,” he pointed.  “Do you want to write this for your blog?” I asked.  “Y,” he indicated again. 

As you read Philip’s response, try to see it not from the viewpoint of a medical ethicist or even an adult, but in the light of an autistic child who cannot speak, gesture, or write on his own, and who has been presumed unthinking for much of his life (and continues to be seen in that light by those who don’t recognize his communication).   

Philip’s words:

The right thing to do is always accept life.  I am sad when tons of people doubt me.  I am sad when tons of people wish I was dead.  (To which I responded, “Nobody wishes you dead.  I love you!  Lots of people do.  What do you mean by people wishing you dead?”)  People single us autistics out to not understand.  I was sad when (person) said it was not worth living if she could not communicate.  I think it is wrong to think that people who don’t communicate don’t feel.  Really upset that letterboard is easy to dismiss as utter nonsense.  I am sad each autistic must prove his worth.  Sometimes I wish I talked.  I am happy to be Mom’s kid.  I am outside normal.  I am one lonely boy.  Each day is a daring one and I will each day in each way stop you and stop the world each time it gets us wrong.

A part of me wishes Philip did not have to concern himself with such heavy and mature topics.  Shouldn’t he be talking about sports, hobbies, and the latest video games?  But I also realize autism is Philip's life.  The things he talks about he must deal with every day.  I am grateful for Philip’s ability and willingness to tell me how he feels.  I cannot imagine if I were him and had to keep all this sorrow to myself.  I think I might die in my soul.  I tell Philip to keep expressing himself to me and to the world.  Using Philip’s term, I tell him to keep “daring” the world’s perception of autism until it gets it right.  

* Philip was happy with the post this morning, spelling "I love it.  I am having interesting conversations."  Indeed you are Philip and your voice is an important one.  

**  Addendum- There are definitely good things to come out of this heavy topic.  One of the people involved in the conversation read his blog and contacted me expressing sympathy and wanting to clarify and make amends.  Since Philip was home from school for a snow day, they were able to converse over text messages and have a wonderful dialogue with a happy understanding of one another. 

Typhoon Haiyan

With the devastating news of Typhoon Haiyan causing widespread death and destruction in the Philippines, I thought it would be good to discuss it with Philip.  I am of Filipino ancestry and still have relatives, including my grandmother, living there.  Fortunately they live north of where the typhoon hit and were not immediately affected.  Still, it was hard to see the images of destruction and despair coming from a place close to my heart.

Philip and I read some news articles about what happened and discussed ways we could help.  "Donate money," he spelled.  We proceeded to go to the computer and make a donation towards the relief efforts in that area through Food For the Hungry, an organization we have been intimately involved in for a few years.  We also learned about hurricanes (which are called typhoons in the Indian and Pacific Oceans) in a Brain Pop lesson.  Philip recalled experiencing hurricanes when we were living in Miami.  "We developed a plan to evacuate," he recalled.  "We boarded them (the windows) up."

Then Philip decided to write a story about the typhoon.

Typhoon

I am living in the Philippines during the typhoon.  No one in my family survived but me.  A hole replaces a house.  An entrance remains.  There is no food or water to drink.  At such a time I need people to help us.  I am stranded.  I am going into madness.  I am not stopping, not giving away hope, until it gets better.  The End.

Boarding up for our first hurricane, Frances, in 2004

Typhoon's destruction

   

Sports

We have a little sports rivalry in our household: soccer vs. gymnastics.  We started as a gymnastics family after my oldest, Ana, picked it out after dabbling in soccer, tennis, and figure skating.  She progressed rather quickly since being on the competition team starting in 2^nd grade.  Gymnastics took up a significant portion of our lives when we lived in Miami.  Ana had practice 6 days a week and we often traveled to Orlando, Tampa, and Ft. Lauderdale for meets.  Because Ana was the oldest, her younger 3 siblings were always in tow watching her meets.  Carlos would occupy his time with his game boy, but Philip took in many hours watching gymnastics.  When we moved back to Buffalo in 2009, Ana continued with gymnastics while Carlos started playing soccer in grade 4.  Though he was relatively late to start compared to most of his teammates, he easily caught on due to his natural athleticism.  He now plays for his middle school as well as our town’s travel team.  Lia, the youngest, does both gymnastics and soccer.  She can’t decide which one she likes better, but her brother and sister like to try to sway her to their respective sports.  In addition to gymnastics meets, Philip has also taken in countless hours of his siblings’ soccer games.  

Over the past few months, I have discovered Philip considers himself a sports fan, though not as avid as Carlos (he communicated this on his letterboard).  He will watch Sports Nation and Sports Center with Carlos.  It’s no wonder he is familiar with Tom Brady and other famous sports figures.  He has had sports conversations with Carlos and his Uncle Mike.  Once when asked if he liked football or hockey better, Philip replied, “I LIKE HOCKEY BETTER BECAUSE UNCLE MIKE PLAYS HOCKEY.”  When Uncle Mike asked how he thought the Bills would do this year, he answered with a reasonable “OK.”  This goes along with Philip’s even keeled nature.  He doesn’t buy into the bipolarness of most Buffalo sports fans. 

I’ve been interested in finding out what sport Philip might like to try.  In my own mind, I thought swimming or track would be ideal because he enjoys the water and he runs very fast.  Once I did a lesson on Special Olympics and competitions.  Then I asked him, would you like to compete someday?  To my dismay he replied, “N.”  Would you like me to enroll you in swimming?  “N.”  “How about track?” “N.”  “Would you like to try any sport?”  “Y”  “Which one?”

“GYMNASTICS”

To prove to myself it wasn’t a fluke, I asked him several times and even once in front of his social worker.  His answer has consistently been gymnastics.  The only problem was there were no “adaptive” or special needs gymnastics classes in the area.  What to do?  My sister has her 3 year old son at a local kids’ gym called Rolly Pollies.  She suggested I check it out as it is a non-competitive program that takes kids up to 12 years old.  I called the owner and explained my situation.  He was very supportive saying they had had special needs kids in the past and did their best to accommodate them.  I decided to let Philip try a free class.

Yesterday was Philip’s first day at gymnastics.  I was a little nervous upon arrival.  Philip was full of energy and wanting to explore the place as soon as we got there.  His class of all neurotypical kids was arriving.  How would this go?  I went to class as Philip’s shadow.  The first thing they did was “follow the leader” around the gym.  I made sure Philip stayed on track following the kids’ path.  Then they got in a circle and did stretches and exercises.  It was a huge deal that Philip was imitating their actions!  He wasn’t perfect at it, but you could tell he was really trying!  He also had to suppress the urge to get up and run to the tumble track to jump.  He did do that a couple times, but I easily got him back in the circle.  Philip did all sorts of stretches, swimming kicks, push-ups, sit-ups, and jumping jacks.  Finally they had free time.  Philip loved the tumble track and foam pit.  He even stayed among the kids as they played around him.  One of the kids, who picked up Philip’s name, came and introduced himself as Luke.  It was very sweet.  I love seeing kids who have a natural sense of compassion for Philip.  All-in-all I was so happy and pleased with how it went.  I had never seen Philip so cooperative and working so hard to be part of the group.   

When we got home, I asked Philip how it went.  “IT WAS FUN.  I AT EASE.”  “What did you think of the stretches and exercises?”  “PAINFUL”  “Do you want to keep going back?  “Y.  I AM TASTING NATIONAL AFFIRMATION.”  “Do you mean natural affirmation?  Like you are proud of yourself?”  “Y.”  “What do you think of the kids?”  “THEY NICE.”  “Do you know any of their names?”  “LUKE.”  “Do you want me to explain to the kids next time about your autism or should we keep quiet about it?”  “TALK ABOUT AUTISM.”

Self-determination is a wonderful thing.  To see Philip’s happiness for making his own choices and achieving his goals makes my heart swell with joy!

*******

(Written the evening of 9/11)

Today I asked Philip if he knew what today was significant for.  He spelled “NINE ELEVEN.”  “What do you know about it?”  “YESTERDAY AT SCHOOL ANYONE NOT WRITING YOU (probably in reference to his teachers writing their daily progress notes that go home to the parents) WAS TALKING ABOUT NINE ELEVEN.”  “You mean the teachers?” “Y”  “Do you know what happened on 9/11 twelve years ago?  “N”

We then watched a Brain Pop video on 9/11, did the quiz, and talked about it.  Philip was able to answer questions about terrorism, where the attacks took place, the twin tours, President Bush, and the heroes who died saving lives.  It is very nice to finally be able to talk to Philip about the things most people talk about.

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. 

****

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