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

            

 

Changing Attitudes

Today Philip had another playdate with his friend Kaylie.  This time we met at her house.  Philip was a bit timid about coming in at first, but when he finally got up the nerve, he came in and presented Kaylie with a new laminated letterboard.  I decided to come prepared with a game this time.  When kids are first learning to communicate, they do best answering close-ended questions before venturing into the wide open field of expressing original thoughts and feelings.  I came up with Trivia Bingo, modeled after the Bible Bingo we played the night before at Stockade.  I placed 16 index cards in a 4x4 grid with the numbers 1-16 on them.  I had prepared questions corresponding to each number for the kids to answer.  Some of the questions were 'what season is Christmas in?' and 'what TV show features Big Bird?'  Philip breezed through his questions, even knowing the President lives in Washington DC.  Kaylie, being newer to this, had a tougher time.  I could tell Kaylie was completely understanding the questions and probably knew the answers as well, but she was having trouble initiating her responses.  When asked what animal lives on both water and land, once she got the first letter F after some hesitation, she picked up steam and spelled F-R-O-G.  As I asked Kaylie the question, “What is the name of the band that has four members who wear different colored shirts: red, yellow, blue, and purple?” her eyes lit up and a big smile spread across her face.  Again she needed prompting to get her initial start, but then very easily and quickly spelled WIGGLES, this time even on her iPad.  Her mom Lisa and I cheered.  You could tell Kaylie was proud of herself too.  After the kids finished their game, Lisa invited the kids to jump on the trampoline in the backyard.  Lisa and I pondered about how wonderful it was for our kids to finally have real friends. 

At the end of the playdate, Lisa wanted to know if Philip had any words of wisdom for Kaylie like he did last time.  Philip sat down and started, “I AM E. ”  But he didn’t get to finish because the next door neighbor’s dog started barking and by all the commotion, we knew we were done for the day at Kaylie’s.  When we got home I asked Philip to finish his words to Kaylie and told him I’d text her mom what he spelled.  Philip spelled, “I AM EXCITED ABOUT ALL THE ATTITUDES ARE ALL CHANGING ABOUT US.”  I asked Philip to tell me how attitudes were changing.  He replied, “I AM SMART.  I AM TALKING.  ADDRESS THE REEL ME.  I AM LOTS OF USE.”

A change in attitude goes a long way.  Before I knew the “real” Philip, I treated him as a toddler who did not understand and could not be trusted in much of anything.  Philip did not progress beyond what I thought of him.  Now that I see Philip as smart, capable, and trustworthy, he is rising even beyond my expectations.  Like all of us, we need someone to believe in us to believe in ourselves and fulfill our true potential.  Philip is still autistic, by all means, but he is showing he is a lot more than his label.  He is a complete person with ideas, thoughts, feelings, and desires. 

It is now my hope and Philip’s hope to change people’s attitudes about autistic people one person at a time.  Know that your attitude and the way you treat each person makes a huge difference.   

 Finally pooped out!

The Girl On the Bus

Ever since we’ve been in Buffalo, Philip has ridden on the bus to and from school.  There has been only one girl on this busload of boys.  Her name is Kaylie.  I wonder what a bus ride is like for Philip.  I remember when I was little how the bus was like its own world run by kids.  The cool kids ruled from the back and it was usually noisy as kids could finally let loose after a day listening to teachers.  I imagine the bus ride to and from Philip’s school is a lot quieter, but I wonder if the kids think about each other and imagine what they might say to one another if they could talk.

Today Philip had a playdate with Kaylie.  Kaylie’s mom Lisa has become a good friend of mine from our support group.  She and Kaylie also took part in the Soma-RPM workshop in Buffalo last May.  Lisa and her husband Tim have worked with Kaylie regularly and she has just started to answer some open-ended questions.  We wanted to get the kids together to have the experience of using their letterboards to communicate with one another and perhaps motivate each other to keep getting better.

Philip was looking forward to his day with Kaylie.  Before she arrived, I told Philip to be thinking of a question he wanted to ask Kaylie as well as some advice for communicating.  Philip has been doing RPM 7 months longer than Kaylie.  When Lisa and Kaylie arrived, Kaylie was all smiles.  I was reminded of the beginnings of puberty.  Kaylie was almost a head taller than Philip though they are the same age.  We all sat at my dining room table where I do most of my communicating with Philip.  Each child had their black letterboard stencil with their mom, each named Lisa, to their side.  I started :

LR(me): How do you know Kaylie?

P: AT SCHOOL

LR: Is there a question you’ve wanted to ask Kaylie?

P: Y

LR: What is it? 

P:  (haltingly) ARE YOU ATTRACTED TO ME?

Lisa and I tried to suppress our giggles.  I double checked to make sure that’s what he wanted to ask and felt slightly flushed at my son’s boldness.

K: NO

LR:  That’s good.  You’re too young for that stuff anyway!  

LC (Kaylie’s Mom): Do you like Philip as a friend?

K: YES 

LR: Philip, do you have any advice for Kaylie to help her get better with spelling and communicating?

P: EACH DAY ATTEND TO EDOCATION

LC: Kaylie is having a birthday this weekend.

LR: How old will you be?

K: TEN

LC: How old are you Philip?

P: (on number stencil) 10

LR: Kaylie, what do you want for your birthday?

K: HAPPY BIRTHDAY

Kaylie spelled quickly with hardly a pause between each letter.

LC: Philip, who is your teacher this year?

P: MARINA

LR: Kaylie, who is your teacher?

K: MISSHEL

By now the kids were getting a bit restless.  They had moments when both were acting silly and laughing, but now Philip was escaping his chair and Kaylie was reaching for her iPad to play a video.  It was our cue that the playdate was over.

I did want to show Lisa and Kaylie one more thing before they left.  I am teaching Philip reading (actually I didn’t teach him, he picked it up on his own), answering on his stencilboard, and then shadowing to typing on a bluetooth keyboard on the table synched to an iPad.  

After bringing Philip back to the table, I wrote down, “What is your friend’s name?”  I showed it to Philip without reading it out loud.  He then alternately pointed to the letters and typed them: 

K-A-Y-L-I-E

As we said our goodbyes, I wondered about Philip’s crush with a smile.  

I asked Philip later about his day with Kaylie. “AN EXELENT IDEA.”  “What do you think of Kaylie?  “SHE IS NICE.”  “Do you think she is cute?” “Y”  “Do you want to have another playdate?” “Y” “When?” “AS SOON AS WE CAN.”

 At the annual school T-ball game (Kaylie was in his class that year)

 Kaylie

Miracles and Answers to Prayer

I cannot recall a day without a struggle or frustration of some sort.  Most days, they are not too bad, but some days they can be so overwhelming and seem so insurmountable all you can do is cry.  I’ve had days I’ve broken down to the ladies in my Bible study so overcome with grief about Philip never improving, frustration that he’d never be toilet trained, and many other things.  I’d wonder if God would ever answer my prayers.  When you are in the midst of a struggle, it is hard to see an end.  It is hard to see how any good can come of it. 

I’ve learned to just pray.  I can’t say I understand the mechanism behind it or how God chooses to answer or what His time frame is, but I can say I HAVE SEEN GOD ANSWER PRAYER AND I HAVE SEEN HIS MIRACLES.  This doesn’t mean that life is now problem free.  But when I am facing another challenge or struggle, I can be encouraged by looking back at how God has carried me through in the past and blessed me over and over again. 

Today my friend Ellie and her son Nelson came over again.  Philip and Nelson played a couple games of UNO and Philip even spelled “CONGRATS” to Nelson after he won.  They chatted a little and then went outside to join Carlos on the trampoline and play soccer.  Ellie told me she was doing some back-to-school shopping and we got on the topic of schooling.  She told me she spent much time praying about where she should send the kids and how Christian Central Academy kept entering her mind daily as well as the scripture, “You do not have because you do not ask.”  When they finally met with the school and asked for help so their three children could attend, they were granted it- a prayer answered!

I then told Ellie some prayers God answered for me- and now I will tell them to you.  These are just a few of the many…

When we were in Miami, during the first year of Philip’s diagnosis, we had a home ABA (Applied Behavioral Analysis) Program.  We had a staff of students trained by a licensed behaviorist named Andrea Holladay.  There were 2 students from the University of Miami and 3 from Miami Springs High School.  The kids took turns coming to our house teaching Philip the basics of learning- sitting at a table, answering to his name, colors, shapes, letters, numbers, imitating, identifying objects and actions, categorizing, the beginnings of speech.  They worked tirelessly with Philip 6 days a week.  Philip learned a lot, but at times it was exhausting managing and training that many people.  At the end of the first year, all my students were graduating and moving on.  I couldn’t bear to think of finding another group of kids, training them again, and starting over.  I prayed and asked God what we should do next.  This is what His answer was:

At the end of the year, not only were my students graduating, but Andrea, our behaviorist, was moving to Lakeland, a town in central Florida.  She told me her friend Juliana Hunt who was also a BCBA (licensed behaviorist) was starting a school.  She gave me Juliana’s card, we hugged, said our goodbyes, and never saw each other again.  Then I dialed Juliana’s number.  It turned out she was starting her school called ISMILE (Institute of Special Minds Interacting in a Learning Environment) at Poinciana United Methodist Church in Miami Springs.  This church was located exactly next door to our house!  We literally would walk 50 ft from our front door and there we were!   Not only that, but the school was affordable and had trained BCBAs as teachers.  Philip had a great 3 years at ISMILE.

Our next miracle took longer in the making.  Who understands God’s timing?  In the Bible God brought about His promise of a son to Abraham many years after he and his wife were of childbearing age.  Abraham was more than 100 years old.  I wonder how agonizing that must have been to have to wait that long.  Yet, in another instance, God answered the prayer of Abraham’s servant to find Isaac a wife even before he finished praying!  

I remember immediately after Philip was diagnosed I told Pastor Van in Miami to please pray for Philip.  He did right then.   During Sunday services, he would often remember to pray for Philip and our family, among other requests, in front of our church body.  I also sent my church in Buffalo a request for Philip to be on the prayer chain.  I included a video that showed what autism was like so they could get a feel of what to pray for.     

It took many years of praying by many people before we got our next miracle- one I had never thought we’d ever get.  My Aunt Maricel is a true prayer warrior.  She has probably prayed even more fervently than me and with stronger faith than me.  She told me she was praying for Philip daily and knew God would heal him.  I would say things like “maybe God is using Philip to teach me patience and maybe he is choosing to answer no to somehow bring me closer to God.”   “No,” Maricel would say, “God will bring Philip good too.  You will see.”

I have had others who have specially prayed for us.  My friend Jean and I have a habit of emailing each other on a regular basis to exchange prayer requests and praises.  At one lunch meeting she told me that as much as she can pray and empathize, perhaps I need to find a support group with other parents going through the same thing.  Her advice, given in love, is what spurred me on to start my current autism support group.  

My Wednesday morning ladies’ Bible study has been instrumental in lifting us up in prayer.  Nichole, Deb, Connie, Paula, and Maricel have been my front line of prayer.  Kit, Lena, Jen, Janette, Amanda, Eun Kyoung, Betty, Kim, and Leigh have also prayed for us.  Our Bible study meets and prays every week.  There are so many requests we have brought to God and seen remarkable answers.  We have prayed people through cancer, job searches, adoption, tragedies, deaths in the family, and for God’s peace, among many other things.  We’ve seen God answer over and over in ways He is glorified by His amazing grace and goodness to us.  I believe the many prayers for Philip is what lead us on our path to Soma.  During the time of waiting God was teaching me many things: trusting in Him, patience, perseverance, mercy, and compassion.  He was also building a large support network for us and training me to eventually help others like Philip and our family.  

I have mentioned before how instrumental my autism support group has been in helping me discover Soma.  You can read about it here.  In the days leading up to our trip to Austin to see Soma for the first time, I emailed as many people as I knew, who knew about Philip, to pray for us.  I sent them a video link of Soma's segment on 60 Minutes and asked for prayer that Philip would respond to this method.  I myself was so nervous it wouldn’t work, but hopeful that it would.  Even though I felt doubt that it would work, I knew in my whole being that God could do as He pleased.  He could help Philip through Soma.  So I, along with countless others, prayed and prayed.  I know my Bible study met the Wednesday without me and spent a long time praying for us while we were in Austin.  I literally could feel their prayers as Philip went from tantrumming the previous day (Tuesday), his first time with Soma, to sitting through his lessons and amazing us with his knowledge that was tucked away from us all these years and just now releasing itself for the first time.  I came away with tears of joy each day.  

As you know, our lives have been changed for the better through God’s answers to prayer.  In the next few days I will post our letters of prayer and praise during our first trip to see Soma.

    Philip and his teachers from ISMILE