Never Too Late

Blogging has been a neat experience for me.  Not only have I been able to reflect on the many things Philip is teaching me, I have been making many new friends who share the experience of having a loved one with autism.  I have never met them in person.  They live in far off places like California, Louisiana, and the other side of the state I live in.  Yet with each person, I feel an immediate bond and kinship.  We are part of a special club that is uniquely blessed.  They tell me my blog inspires them.  They in turn inspire me with their stories, ideas, and love for their kids.

I have asked permission from Ellen to post her story here: 

“I too enjoyed reading your blog. It is never too late to start learning about our autistic children. RPM, Soma and Brianne have changed our son’s life for the better. He will be 45 years old next month. The first time he worked with Soma was 4 years ago. These last 4 years we have found out all about the total person that lives inside a "locked body". He is bright, thoughtful, funny, inquisitive and frustrated. We view him differently and treat him differently now. He is still autistic, but he is also a full person. Since he lives in a group home and we spend the winter out of state we have very little opportunity to work with him using RPM. However soon we will return to Austin to see how Soma can help him to move along to become more independent. He currently says each letter and then the word as he touches the letter board. He then types three words he just spelled on the iPad. This still requires someone with RPM training to help guide him. His progress is amazing. We have so many wonderful quotes from him. One of my favorites is, "I want to thank my parents for never giving up on me."”

My desire is that more people will find these stories of hope.  When I read Ellen’s son’s words of thanks for never giving up on him, it struck a chord in me.  It’s never too late.  It’s never too late.  I think a lot of parents out there need to hear that.  I needed to hear that when I was going through the years Philip was showing no progress, when the nagging thoughts “it’s too late, it will never change, you’ve failed your son” replayed in my head and brought me to the brink of despair.  People need to hear that even at age 41, it is not too late.  I love Ellen’s words describing their discovery of the “total person” that lived behind her son’s locked body.  As a society, we need to see autistic people as being as complete as anyone else.  They are not less than or deficient.  When we start viewing them as such, we run the risk of seeing them as a burden, a nuisance, something less than human.  It is scary to think about the repercussions of this thinking.  I believe every person born on this earth is a total person, worthy of respect, dignity, and love.  Our kids, no matter what the age, are worth fighting for.  

If you are reading this and are a parent who is despairing because of their child, feel free to comment or message me on FB.  If you want to contact Soma to teach you how to more effectively communicate with your child, please visit www.Halo-Soma.org . 

It is never too late.     

 Philip at the Lose the Training Wheels Camp 2012

Savior

Today I decided to review what Philip learned in church today.  I asked him a very open ended question to start, “What did you learn in church today?”  “ABOUT COURAGE”  “What did you learn about courage?” “ATTENDING TO THINGS EVEN WHEN YOU ARE SCARED.”  I looked at the take home paper from church and asked him about the memory verse.  He pointed on his stencil that it came from Psalm 56:3.  He even spoke the verse when I started, “When I’m afraid”  “I WILL TRUST IN YOU,” he continued in his quick quiet voice.  We went over the story of Moses leading the Israelites through the Red Sea as the Egyptians pursued them.  He answered several factual questions about the story.  We talked about what it meant that God would gain glory by delivering the Israelites from the Egyptians.  “SEE HIS HEROICS,” explained Philip. 

Talking about Philip’s lesson made me want to find out how much he knew about the Gospel, the story of Jesus’s rescue of us from sin.  I asked, “Do you know what the Gospel  is?”  “GOOD NEWS,” he spelled.  We often sing a song I learned during my days in Catholic elementary school which has a chorus that goes, “Good news, good news, the Gospel is good news.”  I then asked him to explain the Gospel to me, not knowing if he really knew it or not.  This is what he spelled.

ALL SIN

ALL SHOULD DIE FOR THEIR SIN

“Are you a sinner?” I interjected.

Y

BUT JESUS DIED AT CROSS

AND FORGAVE UAR SINS

WOULD BELIEVE IS SAVED

“You mean those who would believe in Jesus are saved?

Y

“Do you believe in Jesus?”

Y

I know my son has heard the Gospel at home and at church, in storybooks and Sunday school.  But I never knew he understood.  Now I know he does!  He probably understands more deeply than I know.  I rejoice in this knowledge!  

As I look at Philip’s take home lesson from church, I see that this month they are studying courage.  This week’s lesson of Moses and the Red Sea has this take home message: I can be brave even when things seem impossible.

How applicable this is to Philip's life!  At one time everything for him seemed impossible: progress in school, a conversation, inclusion with normal kids his age, a play date with a friend.  How must Philip have felt all these years stuck in silence and misunderstood?  How achingly frustrating it must have been.  

I give God the glory for showing us all things are possible with Him!  He is leading us out of the bondage caused by autism (and ironically showing us a way to appreciate autism at the same time).  Just as He opened a path through the sea for the Israelites to walk through, He has marked a path for us to walk through with prayer partners, supportive friends and family, and Soma who taught us a way to communicate through RPM and the letterboard.  And just as the Israelites demonstrated courage by walking along the dry path formed by God, we demonstrate courage with each step we make in our daily lessons and efforts to communicate and get better at it.  

God saves us in so many ways!  He saves us from the death we deserved because of our sin.  He sent Jesus to die in our place so that those who believe would have everlasting life with our resurrected Lord and Savior.  He also rescues us from impossible, difficult circumstances and redeems them for good so that He may be glorified in them.  If you think this is impossible, just look to Philip’s life.

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

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.