Thursday, June 27, 2013

Dealing With Challenges

Autism is definitely the most challenging thing I have ever dealt with.  Not a day goes by without a myriad of challenges that greatly test my patience, character, and endurance.  It’s easy to see how autism is a challenge for parents and caregivers.  Lately my mind has been switching things around.  How much more challenging must it be for an autistic person to function in a world where most people are “neurotypical” and the world revolves around expectations and rules made by us “normal” people. What can I equate this to?  Imagine going to bed in America and waking up the next day in the jungle of the Amazon among its native people.  Your mind is still completely intact and you have all these thoughts and feelings, but everything about this culture is foreign to you.  You cannot communicate because their language is different.  Even their gestures have different meanings.  You do not understand their rules and expectations.  You are fearful and anxious because you are not of these people.  There is misunderstanding on both sides.  Perhaps you try to keep to yourself for safety or because it is just too hard to become like them.  More on this analogy later…    

One difficulty we have been having for several months is having Philip sit up with us in the church sanctuary during the worship, or music, time.  He is completely fine in Sunday school and Children’s Church, which are in smaller rooms downstairs.  In fact he runs into his classroom with a big smile on his face each week.  However, it all changes once we pick him up and transition him to the “big” church.  He starts to whine and we often have to drag him upstairs like a sack of sand.  Either that or he takes off running in any direction but the sanctuary.  We’ve had to chase him down the hall, in the flower garden, the gym, you name it.  He is so quick and stealthy (like a Ninja!) we cannot take our attention off him for even a second.  My husband Sam and I have tried many things to get Philip into the sanctuary- bribing him with his favorite fruit and candy, going up a different stairwell, getting him in early before the room has had a chance to fill.  We’ve had very limited success.  He either cries or we end up keeping him in the lobby or another room until it’s time for Children’s Church. 

Until recently, I have mostly looked at this situation from my perspective.  I was frustrated and tired. I could not relax and talk with friends.  We could not sit together and worship as a family.  Why couldn’t my child sit like the other kids in church?  We must be causing a disturbance.

Philip’s ability to communicate has helped me understand him like never before.  His communication is still emerging and is difficult and labored, but I know it will only get better in time and with practice.  I have tried in the past to have Philip explain why he didn’t want to go to church, but he was not able to tell me until tonight.  We were discussing another challenge from the night before in which I reacted strongly to a mess Philip had made.  This had escalated to a full blown tantrum with Philip crying, screaming, and pulling at my hair and clothes.  It resolved itself eventually, but I wanted for both of us to understand it so we could avoid such an interaction in the future.

Me: Do you remember what happened last night?
Philip: You were mad.
Me: Yes, I was mad because of the mess you made, but I should have controlled my temper.  How were you feeling about what happened?
Philip: Sorry.
Me:  I am sorry too for how I reacted.  How do you think I could do better next time?
Philip: You should not yell.
Me: How did it make you feel when I yelled?
Philip: tense
(continuing conversation a little later)
Me: What are some things that make you upset?
Philip: I do not know
Me: What about church?  Why don’t you like to go upstairs to the big church?
Philip: The room is too loud
Me: Would it be ok to keep trying to go?  Maybe you will get used to it.
 Philip: N (for no)
Me: Should we just sit in a different room?
Philip: Y
Me:  Would you try the big church in the distant future?
Philip: Y

So let’s go back to my analogy above.  It would obviously be scary to find yourself among an unknown Amazon tribe.  But what if this tribe went out of its way to welcome you, take you in, and protect you?  What if they accepted you and really worked hard to help you learn their language and ways?  What if they met you half way if you couldn’t quite adapt?  Maybe, just maybe, you would no longer fear them.  Maybe you’d want to try harder to connect.  Maybe you could live among them with purpose, peace, and great satisfaction.  Maybe that tribe would be better because of you.  Maybe….    


Tuesday, June 25, 2013

A Friend for Philip

Philip made a friend today!  Today is a landmark moment because it is the first time Philip exchanged original dialogue with a peer.  I say original because I wasn’t the one telling him, “say hi” or “say bye, “ which is a common social exchange all our kids are rehearsed to say.  The words were all generated from Philip, even though I did have to hold his board for him and be his physical voice as he spelled. 

Today was a very happy day for me.  In the morning Philip and I visited some of my friends, one who was visiting from out of town.  There were a lot of kids there, six kids ranging from age 8 to 17.  Several were playing Nintendo Wii and were laughing and having a fun time.  While Philip didn’t join them, he seemed to be observing them, sitting quietly on the couch behind them (an improvement from stimming  alone in the corner with a pop bottle as he did the last time we all got together) .  At one point my friend asked about my new communication with Philip.  I wasn’t sure if Philip would demonstrate his new skills with them, but I decided to try.  I brought him over to my friends with his stencil board and introduced him to my friends, telling him how we met and how long we’ve known each other.  Then I asked him, “Would you like to say anything to Miss C and Miss J?”  Philip spelled, “Real nice to meet you.”   My friends had tears in their eyes as he spelled and my heart was bursting with pride.  

Later that day we visited my friend Susan and her son Michael who is 13.  Michael first learned to communicate with Soma when he was 8.  He is now able to type on a keyboard and iPad.  He goes to public middle school and with the help of an aide, has been able to take regular classes with his peers.  His mom even proudly showed me his social studies final exam in which he got an 87%.  We have been so blessed to have them as our mentors and role models as they are blazing a trail for a lot of families like ours in Buffalo to follow in their footsteps. 

Philip has expressed an interest in learning to type, so Susan showed us various things we could try.  There are a range of keyboards you can hold up like a stencil board and eventually lie on the table as less support is needed.  Michael uses a bluetooth keyboard the size of a cell phone to type onto an iPad program called Proloquo.  It then reads his text out loud.  Susan was good about explaining things to Philip and assumed he was intelligent and listening even though he would walk around and look off into the distance as if he were not paying attention.  

We then got our boys together to “talk”, Philip using his stencil board and Michael using his iPad.  This is how it went:

Philip: Do you like school?
Michael: Yes.  I am very popular at my school.  Do you want to learn grade level stuff?
Philip: Yes.
Susan: What are your favorite subjects?
Philip:  I am interested in math.
Michael: The brain and neuroscience. 
Susan: Is there anything else you want to tell Philip about your school?
Michael: The teachers are great.

The boys then had fun jumping on the trampoline together.  It was such a happy visit.  Susan and I vowed to make it a regular routine to get together with the boys.

Tonight I asked Philip what his favorite part of the day was.  He spelled, “Talking to Mical.”

I think this is the beginning of a beautiful friendship!

Monday, June 24, 2013

Learning From Autistics

In this past year, there has been a major shift in my thinking about Philip and about autism in general.  I am in the process of doing a complete 180 in thinking about autism.  Before, autism was something tragic, something to be eradicated, and a hardship.  More and more I am seeing autism as a special blessing, something to be accepted and supported, and an exciting challenge.  I do not believe I am being too idealistic.  These ideas come from autistic people themselves, including my son!  I will always keep in my heart and mind Philip’s words last night regarding his thankfulness for autism:  Anything is good if you seek God.  He was saying AUTISM CAN BE GOOD!  Now that’s a revolutionary thought, one I am still in the process of fully embracing, but I will get there.

The title of my post is “Learning from Autistics.”  Many so-called autism experts who do not have autism would say the proper term is “People with autism.”  But if you ask most people with autism, including the most recognizable one Temple Grandin, they would say they are “autistic.”  This is because they cannot separate autism from who they are.  Unlike a person who has cancer, autism cannot be operated on or taken out of a person.  Autism affects everything- the way one sees the world and interacts with it.  

Lately I have been reading blogs written by autistic people, some who can talk and some, like my son, who cannot.  Reading their stories has been most helpful in understanding Philip and giving me real hope for his future.  How I wish I would have picked up these readings over Jenny McCarthy and memoirs written by parents of so called “recovered” children during the first few years after Philip’s diagnosis.  I might have saved myself and my family from some heartache.

Don't Mourn For Us, a letter written to parents by an autistic man Jim Sinclair, should be required reading for all parents.  Another blog I love is written by a teen named Ido Kedar who learned to communicate through Soma’s method.  His blog Ido in Autismland and book by the same name show a highly intellectual and philosophical mind coexisting with a sensory and nervous system very different from most people.  Ido also talks of his deep spiritual connection to God in his post The Hope-Fulfiller.  

I’ve also come across some movies which have helped me in this journey.  The documentary A Mother's Courage gave me my first look at Soma and helped spur me on take Philip to see her.  Wretches and Jabberers, a documentary following two autistic adults as they took their message of presuming competence and self-advocacy around the world, was very moving and eye-opening about the fact that autistic individuals are more like us than not.

So I am learning like crazy.  Autism has opened up a whole new world to me, full of adventure, discovery, and growth.  I look forward each day to what I will learn next!       

                                               On our trip to Austin, TX to learn RPM

Sunday, June 23, 2013

An Awesome Talk With Philip

I was not going to blog tonight since it is the weekend and weekends are for relaxing and being lazy, but after my evening lesson and talk time with Philip, I just had to write.  

My daily lesson and talk time with Philip is something I try never to miss, even on weekends.  It is something that had to become a daily habit or discipline.  It wasn’t easy at first.  In the past, I would try very hard to work with Philip, only to eventually give up because we would both get so frustrated at each other.  This time it had to be different.  During our initial RPM learning times, Philip would often try to escape from his chair.  He’d stand on the table and I would wrestle him down all the while saying, “sit down,” over and over till my voice was the loudest thing in the house.  My son would pick the wrong choice as if he were doing it on purpose just to get me to give up.  In the beginning, there were days I dreaded this learning time because I knew it was going to be the most challenging and grueling part of my day.

But something happened as we kept on going.  Things were starting to click.  I was getting into a rhythm about how to teach and ask questions.  Philip broke out of his resistance and started responding and answering correctly.  At first it was from choices I wrote down.  Then it was from spelling when given a portion of the alphabet to spell a predictable answer that I had in mind.  From there it was from a 26 letter stencil.  Then I started asking open ended questions.  Again, there was a roadblock and he couldn’t do it for many months, even though he could for Soma.  Again, we’d push through, trying a little each day.  Eventually there was a one word answer.  One of the earliest open ended responses he gave me was on Valentine’s Day.  I said, “On Valentine’s Day we celebrate love.  Who do you love?”  Hoping he would spell Mom, he instead spelled S-U-G-A-R.  Oh well, I was just so happy he could answer something original and from himself!  

After Soma came to Buffalo in May, Philip demonstrated he could spell in sentences, even paragraphs, and stories with Soma.  We came home and built on his previous skills, till eventually, he started expressing himself to me in sentences and in complex thought!

Here’s what we did tonight.  We started with a lesson on energy from Philip’s Science workbook for 4th grade.  He answered factual questions about electricity, fossil fuels, and different types of energy.  He even got 100% on the True/False quiz at the end of the chapter.  We then read a poem Tito Mukhopadhyay (Soma’s son) wrote about the Niagara Falls.  I asked Philip if he wanted to write a poem, to which he responded N for no.  I asked his impression on his visit to the Falls and he spelled “I enjoy it.”  We then did some multiplication.

We finished with my favorite part of our talk time: open ended discussion.  I asked Philip, “What are you thankful to God for?”  His answer: AUTISM.  I could not believe it.  I asked, “Did you mean to say you are thankful for having autism?”  Y (for yes), he pointed to.  “Tell me in what way you are thankful for autism," I implored. 

This is what Philip spelled:  ANYTHING IS GOOD IF YOU SEEK GOD.

I have much to ponder about tonight and will blog about it tomorrow.  I am so thankful for Philip and for him teaching me so much.    
                                       Philip at Niagara Falls.  He wouldn't get too close.

                                         Soma and Tito with the RPM Buffalo Families.

Friday, June 21, 2013


It is pretty much a given that all parents love their children.  I think the greater difficulty is making sure our kids can feel our love.  This goes for all our kids, neurotypical or not.  The other day, I overheard my 8 year old daughter’s conversation with her best friend because she likes to put her phone on speaker.  “My mom hates me!” her friend cried.  Lia consoled her friend, “Of course she doesn’t hate you.  All parents love their children.”  It was a proud moment for me to hear my daughter’s concern and wisdom, but it also illustrated that our love for our kids doesn’t always come across to them. 
Knowing what I know now about Philip’s comprehension and intelligence makes me wonder how my love came across to him.  Of course I love my son to pieces and want the best possible life for him, but did he feel my love?  I didn’t know my son could understand me, so I talked about him in front of him- every frustration, every perceived deficit.  I couldn’t understand him because he couldn’t talk or gesture, so I’d get impatient and yell at him.  Philip didn’t fit into the image of my dreams, so I tried to mold him to my image.  I wonder how that all made him feel.  Did he know how much I love him?  It scares me now to realize how easily we can treat those who have no voice with lesser dignity even if we have the best intentions.  If that could happen in my own home, how much more does it happen to the many disabled individuals out in the world?  How do they feel?  Do they feel loved?   

There is a famous passage in the Bible that is often spoken at weddings.  It is a picture of how I want to show my love to all my kids, as well as my husband.  It will take extra practice with Philip, but I am determined it is the only way he will feel my love. 

Love is patient, love is kind.  It does not envy, it does not boast, it is not proud.  It is not rude, it is not self-seeking, it is not easily angered, it keeps no record of wrongs.  Love does not delight in evil but rejoices in the truth.  It always protects, always trusts, always hopes, always perseveres.  Love never fails.   (1 Corinthians 13:4-8a)

                                                 Hiking a trail in the Grand Canyon 2009