Monday, December 30, 2013

New Year's Haircut

Philip hates getting his hair cut.  I have written about this in the past (click here for old post).  It has still been a struggle to get his hair cut.  My sister Kit, his barber, had been waiting for him to come around since before Thanksgiving.  We no longer want to force Philip by wrestling him down with a mob of relatives.  We wanted him to come on his own free will, but it was starting to look like he was never going to come.  Philip was looking like his favorite musicians, the Beatles of the 60s.  I was beginning to think I was going to have to get used to the idea of having him look like the Beatles of the 70s.  

I was determined we would have Philip’s hair cut in time for Christmas.  We spent practically the whole of Dec. 23 coaxing Philip to get his hair cut and following him around the house.  He kept spelling that he wanted his hair cut, but as he approached the stool in kitchen, he would suddenly turn around and bolt the opposite direction.  We then tried to get him to sit comfortably anywhere, but if my sister approached him with the scissors, he suddenly got up and ran.  Finally it was time for my sister to leave.  About a half hour after Kit left that day, Philip started crying inconsolably.  After he calmed down, I asked him why he was crying.  “I am sad because I didn’t get my hair cut,” he spelled.  I asked why he wouldn’t let Kit cut his hair.  He explained, “I am scared I will lose control.”  I realized that Philip had the desire to get his haircut, but for some reason, he became overly anxious and his body was rebelling against the idea of getting it done.

Today, we spent much of the day at my mom and dad’s house.  Again we tried to get Philip’s haircut for the New Year.  I even tried giving Philip Benadryl.  Philip looked a bit drowsy 10 minutes after taking it but he still would not allow us to touch his hair.  I was hoping Philip might fall asleep, but the effect of the Benadryl was very short-lived and he was back to his running and jumping self within 30 minutes.  It was looking hopeless.  By 5 o’clock, Philip was running laps around my parent’s staircases.  They have 2 sets of stairs so he was literally doing loops.  I tried to stop him on the stairs and coax him to sit on the stairs so Kit could cut his hair.  Finally around 5:30, my sister gave a “last chance” warning because she had to get dinner ready.  Even though Kit was patient through all of this, my patience was wearing thin and I was on the verge of yelling.  I was about to get everyone ready to go home when finally Philip walked out to the kitchen stool all on his own.  He sat down and my sister began cutting his hair as soon as she got the chance.  I let Philip grab onto me for support.  He was whimpering, but sitting mostly still.  Kit and I encouraged him saying how well he was sitting and how proud we were for him overcoming his fear- because we really were!  It took Kit quite awhile because Philip had so much hair, but finally she was done and Philip looked so handsome and happy!   
Tonight after dinner, I asked Philip about getting his haircut.

Lisa (Me):  Do you like to get your hair cut?
Philip:  I like to get my hair cut bc (because) I want to look good.

L:  What happens to you when it is time to get your haircut?  Why is it so hard?
P:  I get anxious bc I am scared of losing control of myself.  I am scared to hurt myself by not sitting still.

L:  What helps you not be as anxious?
P:  It helps me when you let me sit in my own time.

L:  How did you finally decide to sit and have your haircut?
P:  I told myself to calm down and silently prayed to God.

L:  Was there anything me and Auntie Kit did to help?
P:  A lot of patience and love.

L:  Anything we didn’t do well?
P (smiling, as if to say, “I'm so glad you asked”):  I am sad when you keep yelling at me.

L:  What can I do better in the future?
P:  Let me come when I am ready.

L:  I think I would still have to encourage you.  How can I be more encouraging?
P:  In each case, keep tons of stairs.

L:  Huh?  What do you mean?
P:  My will to rest tons is broken by running stairs.

L:  I still don’t get it.
P:  It relaxes me to get my hair cut.  

(Ahaa moment for me!)

L:  How did it feel to get your hair cut?
P:  It felt pressure (stressful) but I am happy I did it.

L:  What do you think of your haircut?
P:  I love it.

L:  What do you want to say to Auntie Kit?
P:  Thank you for cutting my hair.  You did great each time you cut my hair.  You are the best Aunt.  So much love to you.  Love, Philip.

So there you have it!  A handsome haircut for Philip and a new lesson learned for me.

 Kit cutting Philip's hair
 All done!

See the resemblance! (Philip's favorite Beatle)


Saturday, December 28, 2013

Empathy in Autism

We all need empathy and support.  Last July, I wrote of my own need for support which I have graciously received from my support group (click here to read).  Last week, Philip was able to receive some much needed support himself.  As I learn more about autism from my son and other autistics, I am realizing over and over again how much more similar we are than different.  The common ideas that autistics lack empathy and do not desire relationships are just not true.  The problems with socialization do not stem from a lack of desire, but rather from the impairments that come from the different neural wiring that is autism.  These include lack of effective speech or communication, poor motor and impulse control, difficulty regulating emotions, and sensory overload.  In Philip’s case, his self-consciousness of his disabilities compound to make socializing even more difficult.  But even though socializing is a challenge, Philip has expressed how much he enjoys other people and longs for relationships.

This year has been a landmark year in so many ways.  Philip has been making connections with people like never before.  He has playdates with both autistic and neurotypical peers,  participates in activities such as gymnastics and Stockade (scouts) with other kids,  converses with family and people in the community, shares his ideas on his blog and responds to people’s emails, and even writes letters to his pen pal from our church.

A couple weeks ago, Philip wrote this post on Autism and Trials (click here for the complete post).  It read:

I am in pain all the time. 
I hear every sound at one volume.
I see people’s taunts and I am fearful.  (When asked what he meant by taunts, he spelled “angry faces.”)
I am each day made to feel like I am not intelligent.
I am each day made to feel I do not matter.
Often I am so terrified of senses too aroused.
I am tired of attacking stims all the time.
I each day have strong emotions that affect my relationship with each person.
I each day need someone so patient to work with me.
Each day is so hard.  
The end.
By sharing his heart, Philip was able to be the recipient of amazing empathy and support.  I post our blog on Facebook and many people commented with words of understanding, encouragement, and kindness.  I shared these comments with Philip and they made him so happy.  

One particular response was especially moving and remarkable.  I have obtained permission from the family to blog about it.  A 15-year old boy from England named Christopher has also been using RPM as a method for communication.  Like Philip, he is non-verbal.  His mother Sue shared Philip’s words with Christopher.   Letter-by-letter, Christopher then spelled out a response just for Philip.  All of this was video recorded and posted on facebook for us.  In the morning, Philip and I watched the video as we ate breakfast.  Here is Christopher’s response:

Click here if video does not show.


Sue:  And what should his mum do? 


Sue noted how it was interesting that during their conversation Christopher was having difficulty controlling his body, biting his hand, bouncing against his ball, getting up, and grabbing her.  Philip had similarly been upset as he wrote his post about his trials.  I believe Christopher’s actions were a sign of empathy.  As I watched the video, I could clearly see he was upset for Philip, that he knew what it felt like too.  

Philip silently watched the video as he ate his breakfast.  You could see he was connecting to this boy who was literally an ocean away, yet seemed so close.  After the video, I asked Philip what he thought.  He replied in spelling, “I AM EXCITED THAT SOMEONE UNDERSTANDS ME.” 

It is an exciting time to see how communication through RPM has opened the doors for relationships and understanding in so many ways.  As a mother, it makes my heart soar to see Philip becoming more and more embraced by a community who accepts, loves, and supports him.  To see Philip making friends and connecting with others near and far is a joy I could never have imagined before RPM.  It is my hope that all autistic people may have this same opportunity that Philip and Christopher have.   

* Philip's addendum- "I am each day part of a coming-together community of non-verbal autistics.  I am excited about activism.  I want to change the way we are taught.  I want to make RPM the standard."  

 Philip and his friend Kaylie making cookies

Friday, December 27, 2013

The Miracle Worker

Yesterday our family watched the classic 1962 movie The Miracle Worker starring Anne Bancroft as Anne Sullivan and Patty Duke as a young Helen Keller.  Both actresses won Oscars for their performances.  It was the first time I saw the movie and it was a revelation.  I saw many parallels between the relationship between Helen and Anne and that of an autistic person (especially one who has no reliable communication) and his or her teacher.  

Helen Keller was born healthy in Tuscumbia, Alabama in 1880.  At 19 months old, she contracted a disease, believed to be scarlet fever or meningitis, which left her both deaf and blind.  Anne Sullivan was born in Massachusetts to a poor and illiterate Irish immigrant family.  She lived in an almshouse with her brother for 7 years as a child.  She became blind from an untreated trachoma and was sent to Perkins School for the Blind.  A series of surgeries restored some of Anne’s vision but she was seriously visually impaired for the rest of her life.  Anne graduated valedictorian of her class at age 20 and was recommended to the Keller family as a tutor for young Helen in 1887.  For 49 years, Anne was a teacher, governess, and constant companion to Helen.  Helen went on to be the first deafblind person to earn a bachelor’s degree and became a famous author, lecturer, and activist for women and people with disabilities.

Today I taught Philip a little more about Helen Keller and Anne Sullivan from Wikipedia.  Philip answered a few factual questions.  Then I asked him some more probing questions.  He answered by spelling each response on his letterboard.

L (Me):  What did you think of the movie Miracle Worker?
Philip:  I liked it a lot.

L:  What did you think of Helen Keller?
P:  She was tough to teach.

L:  Why do you think so?
P:  She attacked Anne bc (because) she awakened a hope in her.  Each time Anne taught her, she expected a lot from her.  Each time Anne was tested a lot.  Helen wanted Anne to peace (piece) together a plan to rescue her from her silence.

L:  Do you think Helen wanted to work with Anne even if it was hard?
P: Y (for yes)

L:  Then why was Helen so aggressive with her and beat her up?
P:  She was aggressive bc she needed control over her life.  Each day she dared Anne to quit to see if she loved her enough to stay.

L:  Why was control so important to Helen?
P:  She needed to be addressed as an intelligent person.  

L:  What made Anne such a good teacher for Helen?
P:  She was each time persistent and meaning well.

L:  How do you think Anne’s disability helped her be a good teacher?
P:  She was a teacher and advocate and she knew what it was like to be disabled.

L:  When did Helen have her breakthrough?
P:  At the well, Helen finally understood the sign for water.

L:  What did Helen need to do to learn from Anne?
P:  Each day she had to trust Anne and only then could she learn. 

L:  What can you learn from Helen Keller?
P:  I am needing to search for others who accept me as I am and trust them to teach me.

L:  Anything else?
P:  A lot of good awaits me.

L:  What can you learn from Anne Sullivan? 
P:  I am helpful to autistics bc I live a similar experience as them.

L:  Anything else you want to say?
P:  I am thankful to Helen and Anne for showing the world that a disability can be overcome. 

As I read through Philip's responses again I am amazed at his insight.  His responses weren't exactly what I expected.  I expected Philip to address the frustration of being kept silent.  Instead he talks of the universal need each person has to be accepted as they are, to be seen as intelligent and worthy, to be in control of one's own life, and to be loved enough to trust in others.        

* After going through the post with Philip, Philip said he liked it, but wanted to add, "I am not Helen Keller.  I am autistic.  Each person's story is their own."

 Breakthrough moment at the well.

Tuesday, December 24, 2013

Christmas 2013 Letter

Merry Christmas from our family to yours!  It has been awhile since I haven’t sent out Christmas cards in the mail.  This season just seemed to spring upon us faster than I could get ready!  I know it is a poor excuse as the shortened time between Thanksgiving and Christmas still didn’t stop many of you from sending your holiday greetings.  I truly appreciate each one!

This year was special in many ways.  Two of our kids will be graduating in 2014.  Carlos is graduating from middle school and Ana from high school.  It’s been bittersweet attending Ana’s gymnastics meets and orchestra concerts, knowing they will be the last ones.  We are so proud of her.  She has made the most of her high school years.  This past weekend she was in the Buffalo News as a super senior scholar-athlete.  At the high school Section 6 gymnastics meet she placed 3rd All-Around and made the state team for a 5th time in a row.  Ana wants to study engineering and apply her work in the field of autism.  At this writing she has been accepted into 3 schools with University of Michigan at the forefront but still a lot of schools to hear from still.  

Carlos has been growing fast- literally!  He is now taller than Ana and it seems we are buying him new shoes and pants every three months.  He has shown an increased seriousness in his studies, seeing how some of the courses he is taking this year will be on his high school transcript.  His passion for soccer keeps growing.  He played forward on his school team and has been moved up to our town’s A-team.  

The biggest growth we have seen over the past year has been in Philip, now 10.  At this time last year, we were still new to Philip’s now primary mode of communication called RPM.  We began teaching Philip at home (in addition to his regular school), interesting lessons at his grade level.  He would learn American history, geography, animals and their habitats, fairy tales, and adding and subtracting.  In the beginning, it was difficult.  Little by little, Philip improved from pointing to choices of written words to spelling one word responses to lessons to spelling one word open-ended responses (to personal questions such as his favorite color) to writing sentences and even full essays and stories.  Though he takes long to respond as he has to spell out everything on his letterboard, we have conversations with Philip like any other person.  As I look back at this year, it is incredible how much he has progressed in such a short time!  We have learned so much about Philip and have had our understanding about autism turned on its head!  This blog is dedicated to our amazing journey in discovering who Philip is beyond what meets the eye.

Lia is now 8 and in 3rd grade.  She is our most easy –going child.  She started competing in both gymnastics and soccer, but mostly has fun with it.  She is everyone’s best friend.  Lia never fails to bring good cheer wherever she goes.  She loves to dote over Philip.  

I (Lisa) continue to prioritize my time at home with Sam and the kids.  I have become a fourth grade teacher, relearning curriculum so I can teach Philip daily.  It is hugely rewarding and I enjoy learning alongside Philip.  I have organized 2 Soma-RPM Workshops in Buffalo in which Soma Mukhopadhyay worked with area kids ages 8-27 and taught RPM to people in the community.  The workshops have been amazing successes and we now have a growing number of RPM users in Buffalo.  The families have continued to meet and support one another with a monthly support group.  Philip and I have found a new mission to help others understand autism, to teach communication to those not able to communicate yet, and to self-advocate and advocate for others.   I continue to meet with my faithful Bible study and enjoy cheering on my kids at their games, meets, and performances.  

Sam continues working at Buffalo ENT Specialists.  He likes to tinker around the house and the hunting property in Shelby, NY.  In July we took a family trip to Outer Banks, NC, where we rented a beach house with family from Virginia Beach and Chicago.  It was a blast as the kids learned to surf, jet ski, and just hang out with cousins on the beach.  We drove down, making stops in Philadelphia, Baltimore, and Chapel Hill to look at colleges on the way.  The only problem is that our van AC was beyond repair and there were record high temperatures.   Instead of getting a new car, Sam thought he would remedy the situation by building his own air conditioner with a fan and Igloo cooler which had to be refilled with ice every few hours.  It worked great…if your face was 2 inches from it. Unfortunately the rest of the people got no benefit whatsoever and we ended up doing the old fashioned roll-down-the-windows cooling system.  It was kind of miserable, but at least we all lived to tell about it!  Sam and Lolo (Lisa’s Dad) enjoy hunting and went high tech this year, but that doesn’t necessarily mean better.  They caught lots of deer on the deer cams but didn’t bring any home for the freezer.

May God bless you this Christmas and throughout 2014!
                                                                                    Lisa, Sam, Ana, Carlos, Philip, & Lia

 In New Mexico Christmas 2012
 Level 9 NY State Meet
 Entertaining Soma at Niagara Falls May 2013
 Arsenal wins Odenbach Tournament
 NYC in April- first college trip
 Surfing lessons at Outer Banks
 Cousin Reunion Outer Banks
 Ana getting ready to go to Haiti for a missions trip with our church
 Lia's spirited soccer team
 Carlos now taller than Ana
 Merry Christmas 2013!