Tuesday, January 21, 2014

Hanging Out With The Real Boys

A wonderful thing has been happening to Philip.  He is making friends with people like himself.  Most of us enjoy the benefits of friendship quite easily.  Although we can make friends with people very different from ourselves, we tend to drift towards people we have something in common with, like those who like to read joining a book club, or moms with kids on the same sports team yakking it up on the sidelines.  Put me in a room with another mother of an autistic child, and I will find her like a magnet.  In the neurotypical world there is no shortage in finding “like” people.   Bonding over our commonness, be it interests, background, or outlook on life, is the stuff best friendships and soul mates are made of. 

Philip has told me on several occasions he is lonely.  You wouldn’t think it could be possible with 3 siblings, parents, aunts and uncles, cousins, his Lolo and Lola (grandparents), and church family doting over him.  But the more I think about it, the more I can understand how lonely it must be to not have someone who can truly relate to his autistic experience.  As much as we love Philip and can empathize with him, we cannot say to him, “I’ve been there.”

Non-speaking autistics have it especially hard in making friends with others like themselves for obvious reasons- the communication piece.  In ABA school, Philip was taught to communicate with his other non-speaking peers in a rote manner of pressing  icons on his device which would speak, “Hi, I’m Philip,” “What’s your name?”, “I am 10 years old,” and “I am _____ (fill in the blank with happy, sad, angry, etc.) There were not enough icons on his device to have a true conversation to explain your inner thoughts and why you felt a certain way.  No “I am lonely” button existed.  Teaching Philip to communicate by spelling on a letterboard through RPM was a process that took time to learn and make proficient for communicating.  But once he got it, it has opened his world and opportunity for expression wide open. Unfortunately, open forms of communication such as RPM and assistive typing are not commonly learned and used by most autistics whom it would benefit.  This is because certain ideologies still have a monopoly on those who provide education and services to most autistic people.

By a stroke of good fortune (divine intervention I'm sure) and Facebook, Philip has been able to find other non-speaking kids who communicate by letterboard or typing.  One boy Philip has befriended is Josiah.  He is 8 and from Minnesota.  The boys exchange messages over Facebook.  The depth of their letters is astounding.  I will most likely devote a separate post to this beautiful friendship soon.  
Another boy Philip has befriended is Michael Conti.  I have written about their first meeting communicating with each other back in the summer here.  Michael is 14 and was our catalyst for seeing Soma after meeting him and his mom Susan at a Lose the Training Wheels bike camp in the summer of 2012.  Michael and Susan are the original RPM trailblazers in our area.  Philip and I are just following in their path.  Michael goes to public middle school, excels in his core academic subjects with typical classmates, and even participates in track and stage crew.  Don’t forget- he is non-speaking, just like Philip.        

Since last summer, Philip has improved in his ability to communicate.  Susan and I decided to make what I have termed ‘playdates’ (as you will see, we will be persuaded to change the name in the end) more regular.  As Monday was the MLK holiday, we made our first date at Susan’s house.  I brought Philip’s iPad to show them how Philip has started typing a little.  When we first arrived both boys sat at the table with their iPads and some snacks.  Philip is still shadowing his responses from letterboard to iPad while Michael types on a little hand-held bluetooth keyboard which his mom holds up for him.

Philip began:  Are you typing pretty well?
Michael (as I recall- may not be exact wording):  Not so much.
(As I watched Michael, he was quickly and independently typing both on his Bluetooth and ipad to google videos and search for various things on the internet.  Susan explained he was very good at typing automatics, kind of like stim-words, by himself, but still needed improvement in staying focused in using typing to communicate purposefully.)
P:  I plan to look good for school and typing pleases people.  

The boys didn’t stay at the table too long.  As moms do, Susan and I got to talking.  We talked about everything from typing, videos to help with technique, conferences, schools, and inclusion.   The boys wandered into the family room to lounge amidst the couches, blankets, and bean bags.  We eventually let them communicate there with their letterboards.  Here are more snippets of the conversation:

M: What is your favorite subject?
P:  Math.  What is your favorite interest?
M: Certain technology.

P:  Do you get teased at school? 
(Susan and I both remarked what a good question that was.  Philip’s thought about teasing could greatly affect his anxiety about going to public school.)
M:  No because actually I am popular at school.  They know I am smart like you are. 
(Susan asked Michael some clarifying questions to show Philip he would be accepted there as well.)
P:  I am really happy I am feeling good about mainstreaming.

As Susan and I scheduled the next playdate, I wondered out loud, “Maybe they are too old to be having a playdate.  What should we call it?”  Susan said, “Why don’t we ask them?”

P:  Each time we are hanging out.
M:  Real Boys 2 

Susan mentioned she has met several parents like us at different conferences and there is a small group of families in Maryland who bring their boys together weekly to communicate like Philip and Michael.  They call themselves “Real Boys.”

I like the sound of it- Real Boys hanging out.

Tonight at bedtime I asked Philip about his impressions of the day.  He spelled, “I like Michael.  He is teaching me I should be excited for mainstream school.  You (Mom) are getting certified in autism kids daring to save the reaching-out world."      

*  Susan and Michael have given me permission to use their names to blog about today.  Michael spelled he "wants to be famous haha."  Gotta love this kid! 

 Philip's friend Michael

Philip getting better at typing

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