Tuesday, September 10, 2013

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


  1. Our writing prompt for the day, if you woke up one day and found to have pink hair what would you do?
    Sanjay"If I woke up and found that I have pink hair I would call the doctor and question him."

    This communication stuff high degree of addictive potential for moms.

    1. That is too cute! I totally agree that this communication is highly addictive. In the beginning there was definitely a big learning curve to get over and it was tough to work with Philip, but now that we have our groove, I love having our talk times and finding out what's in his head! RPM is the most rewarding thing we ever did with Philip.

  2. I loved Ellen pauls comment on the halo forum. I totally feel that early intervention for autism is over rated at least in children with apraxia/dyspraxia. And now that the scientific community understands neuroplasticity and ongoing brain adaptation and learning it is obvious that learning can happen at any time and sometimes early is not that good. For example, we started RPM when Sanjay was barely 5 years old. Although, we started early, a child such as Sanjay with severe apraxia can only do so much and he also did not have the maturity to understand the significance of communication and why I am being such a lunatic about it. Sanjay is now 6.5 years old and he is only slowly understanding that his voice has power but I see the eagerness and relief in discovering RPM when children about 10-12 years old discover it. They not only move through the stencils faster, but they are also mature to enough to understand the power of communication and are motivated to do it. We are still in the three stencils stage and I am enjoying the ride.
    I hope we- all RPM moms/parents can form a facebook page/blog groups I don't know what but somewhere where all of us can troubleshoot etc, the halo forum is just not cutting it, it is not active at all and after a year, if you don't pay, its gone. and so many active parents/teachers although they continue with teaching with RPM are not posting there at all.