Support

Today Philip chose to talk about autism again. 

Lisa (me): What aspect of autism do you want to talk about today?  More on stims?  Something else?

Philip: SUPPORT

L: What would you like to say about support?

P: IT IS SOMETHING EACH AUTISTIC NEEDS.

L: What kinds of things do you need support for?

P: AT TALKING.  STOPPING STIMS.

L: Why is it important to stop stims?

P: EXTREME ATTACHMENT

L: Is that good or bad?

P: BAD

L: Why?

P: IT KEEPS ME AWAY FROM EVERYBODY

L: Any other ways you need support?

P: EDUCATION

I love reflecting on the things I learn about Philip everyday.  It impresses me how self aware he is.  Philip knows he needs support.  It is not optional.  It is vital.  I now recall something Soma said to me during our visit to Austin.  "We all need support.  There is nothing wrong with it.  I need someone to cut my hair and do different things for me all the time."  It is true.  Do we take time to humbly acknowledge it for ourselves?  We all need support.  I talked about my need for support here. 

Philip listed the three main needs he has for support.

1) Talking.  For Philip to communicate, he needs someone to help him.  This is due to a variety of things.  Poor control over the muscles in his mouth make it hard to speak.  Poor fine motor skills make it hard to write, gesture, or sign.  Problems with initiating action and reflexive automatics also interfere.  Philip needs to be prodded to get things done.  Philip also acts without thinking it through a lot and as a result answers wrongly.  For example, i f I give him 2 verbal choices, he would always pick the last one said.  Somehow Soma was able to find a small window in which real and effective communication can begin.  When someone Philip trusts and is experienced with holds a letterboard in front of him,  he is able point to the letters to spell his thoughts.  I believe with practice, he will eventually be able to write more independently on a keyboard.

2) Stopping Stims.  Philip has told me quite a bit about stims.  He has told me it is his favorite thing to do and it is hard to stop.  It is a "time to relax" from "tons of stress."  For Philip, stress seems to be generated a lot by sounds.  I know new experiences and very busy places can also set him off.  But Philip knows too much stimming is not good because of the isolation it causes.  Many people, including myself in the past, have concluded autistics want to be left alone.  But Philip has communicated many times he likes being with people and enjoys the company of his family and friends.  It is our job to keep him from stimming too much because the power of stims is so great.  It easily overpowers better desires.  I can equate this to an addict and his drug.  In my own life, I can equate this to needing a trusted friend who lovingly keeps me in check so I don't overindulge in complaining, feeling sorry for myself, laziness, or any other thing that is not good in too large doses. 

3) Education.  The service announcement I grew up with as a kid keeps playing in my head.  "A mind is a terrible thing to waste."  I am fascinated with what Philip's mind is capable of.  Finding out how smart he is is like unearthing buried treasure.  You can read about Philip's penchant for math here.  During our talk sessions Philip sometimes spells A-E-I-O-U when he doesn't have a ready response.  I like to say  it's his equivalent of us stuttering or saying "uh..um..I'm thinking."  Usually I might say, "Philip.  That doesn't make sense.  Try again."  This time I asked , "What is A-E-I-O-U?" 

P: VOWELS

L: What are the other letters then?

P: CONSONANTS

L: How did you know that?  Who taught you?

P: SOMA SAID TO ME. (I am amazed he is soaking up everything)

L:How did you learn to read?

P: ALWAYS KNEW HOW TO READ

L: But how did you start?  From school?

P: MY FAVORITE BOOKS

L: Which was your favorite?

P: LOVE YOU FOREVER

We need to support our child's learning by giving him new things to learn, not the same things over and over. We need to speak to them at their age level.  We need to advocate for their education at school and go the extra mile to train and educate their teachers. 

Support, support, support.  Our child needs it.  We need it too.

 

Stories That Matter Most

I am looking forward to receiving a new book in the mail soon called The Reason I Jump by Naoki Higashida.  A fascinating excerpt from the book can be read in Parade magazine here.  I first learned of Higashida from the wonderful film Wretches and Jabberers.  You can see the trailer here.  The Reason I Jump was written by a Japanese autistic boy when he was 13.  It has only recently been translated to Engilsh by KA Yoshida and David Mitchell, a husband and wife with an autistic son of their own (Higashida is now in his 20s).  According to early reviews, this book was eloquently and painstakingly written letter by letter on a letterboard, much like the one Philip uses.  (Higashida now types and can even read back verbally what he has written).  The book answers 50 questions about autism such as "why do you jump?" and explodes common views about autism, such as autistics are not interested in people, they do not understand feelings, and they are lost in their own world.  Society has come up with a misguided view of autism largely based on fictional accounts like Rain Man and from the medical establishment (DSM criteria).  It has been hard to get a first-hand account of what autism is like because of the communication problems caused by neurology.  However, in recent years I have started to see non-verbal autistic voices more and more.  The book Ido in Autismland is my favorite to date.  Ido got his start with Soma and has written a collection of essays that deeply resonate with what I believe Philip experiences similarly.  Tito Mukhopadhyay has also written about his life and his perceptions through beautiful poetry.  These autistic voices (who speak through the written language rather than spoken) have shattered my preconceived notions of what autism is. 

Of course now I have my own son to tell me what autism is like.  Philip is only 10 and has been communicating just a short time, so he is not yet as eloquent as Ido, Tito, or Naoki.  But even so, he has been amazing me with his story.  The more I discover who Philip is, the more I realize how wrong my perceptions of him were in the past.

Philip actually wants to talk about autism.  A couple days ago, I was ready to teach Philip a lesson from Brain Pop.  I asked him what animal he would like to learn about.  Instead of choosing, Philip became upset and started to cry and hit his head.  I didn’t know why.  After awhile he calmed down and I asked, “Why were you upset?”  He answered, “I KEEP SAYING I NEED TO TALK ABOUT MY AUTISM.”

So we started the conversation, which also lead me to the idea of having Philip co-blog with me. 

 

Lisa (me): What do you want to talk about?

P: STIMS

L: What can you tell me about stims?

P: A LOT OF STIMS ARE NEEDED TO CONTROL THE AKING (aching).  OFTEN I AM NEEDING STRESS RELIEF.

L: What kind of stress do you have?

P: STRESS CAUSED BY EVERY SOUND.

L: What else can you tell me about stims?

P: A LOT OF STIMS ARE TIME CONSUMING.  I LIKE TO KILL TIME BY WALKING AND THINKING.

L: What do you think about?

P: I THINK ABOUT ANYTHING

L: What are some things you think about?

P: AS YOU ASK I AM EYEING A HAPPY FUTURE.

L: What do you see in your future?

P: I AM TALKING

L: How?  With your voice?  Typing?

P: WITH A PERSON HELPING

Today I also shed tears about a discovery I made about Philip’s ability to use his hands.  In my dining room I have 2 paintings made by Philip when he was just 2 and a half.  I am so glad my mom saved them because at one time his paintings became so numerous I used to throw them away.  I finally had two of them framed when we moved to Buffalo 4 years ago.  They look like paintings of the sky at different times of the day.  Philip also used to color and could draw a face.  For some reason we saw those skills vanish in time to where to this day he cannot even draw a straight line.

Ana and I talked to Philip and Ana asked, “Do you remember when you used to paint and draw?”  Philip replied, “Y.”  “Why don’t you do that anymore?” Ana asked.

P: AT THE TIME I STILL COULD HOLD A PENCIL.

A: What happened?

P: I CAN’T CONTROL EYE AND HAND ANYMORE.

Autism is such a mysterious condition.  I think there is still so much to discover in the future.  Perhaps whole paradigm shifts of viewing it and treating it will come about from all these autistic voices speaking out.  It is a good thing.  Their stories matter most.  Philip reminds me that even though he deals with such hardships, he has his eyes open to a happy future.

 Philip's paintings at 2 and a half years old

 Drawing at age 2

 

Philip the Blogger

Ever since I began this blog, I have tried to be sensitive to what Philip would allow me to talk about.  He knows I have a blog about him, but I haven’t always told him specifically what I was writing about.  I decided today that from now on I would discuss the blog with him and make sure everything I write is ok’d by him.  Eventually I would like this to be Philip’s blog as he is the expert on himself, but for now we will settle on being blogging partners. 

   

Today I gave Philip a little overview on blogs and explained how it is like a journal so we can look back and see the progress that has been made.  I also explained how it is good for others to see it because it glorifies God to see His answers to prayer and hopefully we can help other families find a way to communicate with their children.  I asked Philip what he thought of the blog.  (Philip often has a unique way of saying things.)  This is what Philip spelled: “IT WOULD EYE YOU TO YOUR WORK WITH SOMEONE WITH AUTISM. “  In response to glorifying God, he spelled that it would help people “SEE THE THINGS HE HAS DONE ANY DAY TO SHOW HOW GREAT HE IS.”  I then asked if he wanted to blog himself.  He spelled “Y (for yes)- I AM AN AUTISTIC.  TELL THE STORY OF MINE.”

I will leave you with 2 stories Philip gave me permission to share.  This first one was based on a picture we found on a catalog that looks a lot like Philip’s brother Carlos.  Interestingly enough, Carlos learned how to surf in North Carolina and is pretty good at it too!  The second story (in photos) was the first story Philip ever wrote.  He wrote it with Soma last May after a lesson on a Greek myth.  Soma illustrated the story in response to Philip’s spelled request, “DRAW IT.”  Soma is quite the artist and a good sport!

SURFER

ONCE UPON A TIME THERE WAS A SURFER.

THE SURFER’S NAME WAS CARLOS.

HE WAS THE STRONGEST SURFER YET SHY.

ONE DAY HE RODE A TIDAL WAVE.

HE LASTED AN HOUR.

HE RODE TO SHORE.

THE END.

8/17/13

Another Family

I would like to give a shout out to my home church Randall Baptist.  As a church family they have been extremely supportive of Philip and our family.  When we first came back from Miami, I wanted to put Philip in the toddler room because even though he was 7 at the time, to me he seemed like he was on the developmental level of the toddlers.  Besides I was very self-conscious that he would be disruptive to the regular children’s class and a problem for the teachers.  

Our children’s church director Diane and a special education teacher Morgan took it upon themselves to start a ministry just for Philip.  They knew better that Philip did not belong with the toddlers, but with kids his own age.  Diane called me and explained what they wanted to do.  She and Morgan assembled a team of volunteers who would be Philip’s one-to-one aids on a rotating basis for Children’s church.  In addition, Kathy, the Sunday school teacher for grades 1-4 also found helpers for Philip.  

Just about everyone at my church knows Philip.  They are friendly and take time to interact with him.  They want to be a blessing to him.  Last week Daryl invited Philip to be part of his Stockade troop (similar to Boy Scouts).  He said I could come and assist him with his letterboard.  Kianne comes over to play and help with Philip’s lessons.  She also gives him her old favorite Choose Your Own Adventure Books.  Ellie brings her kids over to play with Philip and Nelson has become one of Philip’s first real friends.

Randall also let us use their building to host Soma during our first RPM Autism Workshop.  For three days last May, Soma worked with 5 kids and their families there.  People came from the community to witness Soma’s work with the kids and then hear her lecture in the afternoons.  People from Randall volunteered as caregivers for Soma’s son Tito while she worked and also as volunteers to watch our kids during Soma’s lectures.  Randall will again open its doors to Soma and Tito, a new group of children, and the autism community in October.  

Last Sunday I had the opportunity to teach Philip’s helpers how to communicate with him using the letterboard.  7 of us, Philip included, sat at a round table in the Fellowship hall as I went over the “training manual” I came up with which explained the theory behind RPM and how to proceed up the ladder of communication.  Philip was very cooperative and showed his helpers how to work through a sample Sunday school lesson.  I was very impressed he was able to do it, as it was one of the first times he showed his skills to so many people at once (this was before our family dinner conversation I blogged about yesterday).  Philip’s helpers had lots of questions and I did my best to answer.  I explained it would be a process and that it will take time for Philip to get used to communicating with them in this way, but that it will be rewarding.  His helpers were excited about Philip’s progress and their chance to help him.

My church family paints a beautiful picture of serving the “least of these.”  

Matthew 25:34-40 reads “Then the King will say to those on his right, ‘Come, you who are blessed by my Father; take your inheritance, the kingdom prepared for you since the creation of the world.  For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, I was a stranger and you invited me in, I needed clothes and you clothed me, I was sick and you looked after me, I was in prison and you came to visit me.’

“Then the righteous will answer him, ‘Lord, when did we see you hungry and feed you, or thirsty and give you something to drink? When did we see you a stranger and invite you in, or needing clothes and clothe you? When did we see you sick or in prison and go to visit you?’

“The King will reply, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.’

 Philip caroling with his Sunday school class at a local nursing home

 Passing out cookies to the residents with Big Sis Ana

 Participating in the Church Christmas Pageant