Thursday, November 28, 2013

Philip's Thanksgiving Letter

Dear Family,
I am thankful for autism.  I am not depressed about it much. Autism is an ear for God's word and an appreciation of nature and a rational thinking pattern.  I am thankful for Soma.  I am thankful for having a voice.  I am thankful for each of you for rare support of me.  I am thankful for my mom and dad.  I am thankful to God for opening me up to the world.  Your saving me from silence is more ropes to heaven.  I am each day thankful God answers one's prayers.  I am only a teacher to ones that accept me as I am.  I am thankful for more attention to each day satisfy my one aim to teach others about autism.  

*Philip spoke this with his iPad voice before our Thanksgiving meal as people shared what they were thankful for this year.


Wednesday, November 27, 2013

Thankfulness



This Thanksgiving I give thanks for the amazing PRIVILEGE I have in raising Philip.  I get to be a witness to miracles each and every day.  I feel immense joy in seeing my son being able to do what most kids his age do so simply- ordering at a restaurant, conversing with a brother or sister, telling people what he wants for Christmas.  Over and over I am awestruck by my son as he displays how much he has learned from the world despite being in special education all his life, demonstrates compassion for others, and reveals the special relationship he has with God.  All these things I once considered an impossible dream, but now they have all come true!  I seriously have to remind myself I am not dreaming!

My in-laws are visiting for the week of Thanksgiving.  They have been amazed at Philip’s progress.  My father-in-law reminded me of the poem, Heaven's Very Special Child, I received when Philip was pretty newly diagnosed.  It is framed on my mantle but I hadn’t read it in awhile.  My father-in-law remarked about how God made the right choice in sending Philip to me.  He knew I’d not give up on Philip and would have the patience and persistence to be the right mom for him.  I also believe God sent me the right kid in Philip.  He is the one teaching me everyday to see with eyes of faith when everything seems contrary.  He is teaching me to set my hopes high and trust in God’s deliverance.  He is teaching me how to truly love unconditionally.

Today (the day before Thanksgiving) was a fun day.  We took my in-laws to see Niagara Falls on the first day of freshly fallen snow.  It was beautiful!  They later took the kids to get their Christmas presents.  I used the letterboard to let Philip tell his grandparents what he wanted.  He spelled, “I WANT A TOY THAT LET’S YOU EAT.”  We were a bit confused at first.  Knowing Philip likes food, we thought maybe he wanted a type of food.  I asked Philip to be more specific.  He spelled, “A TOY THAT LETS YOU EAT SLUSHIES.”  I was so excited.  He wanted a slushie maker!  That made a lot of sense because one of his favorite things to do is to get a Slurpee with his Dad at 7-11.  After dinner, Philip’s grandparents got him a kid’s Slurpee Maker.  Philip was so excited he was practically bouncing off the walls and kept hugging his grandparents.  Philip then got to pour the juice into the contraption, spin the handle, and eat his own slushie creation made from his favorite Capri Sun juice.  

Happy Thanksgiving!  Stay tuned later for Philip’s Thanksgiving letter……

HEAVEN'S VERY SPECIAL CHILD

A meeting was held quite far from Earth!
It's time again for another birth.
Said the Angels to the LORD above,
This Special Child will need much love.

His progress may be very slow,
Accomplishments he may not show.
And he'll require extra care
From the folks he meets down there.

He may not run or laugh or play,
His thoughts may seem quite far away,
In many ways he won't adapt,
And he'll be known as handicapped.

So let's be careful where he's sent,
We want his life to be content.
Please LORD, find the parents who
Will do a special job for you.

They will not realize right away
The leading role they're asked to play,
But with this child sent from above
Comes stronger faith and richer love.

And soon they'll know the privilege given
In caring for their gift from Heaven.
Their precious charge, so meek and mild,
Is HEAVEN'S VERY SPECIAL CHILD.


by Edna Massionilla

 Philip enjoying his Slurpee Maker
 Grandpa Dave and Grandma Peggy
 A view of the Canadian Horseshoe Falls
A view of the American Falls from Canada
   

Monday, November 25, 2013

Positive Affirmation




This past week Philip did lessons on various animals, from ants to walruses.  He also learned about John F. Kennedy last Friday as the coverage of the 50th anniversary of Kennedy’s assassination was all over the news.  Besides academic lessons, Philip and I would sometimes just talk.  

One day I decided to talk about our good attributes.  As I look back on Philip’s life, I believe he has mostly been defined by his disabilities.  People with autism, Down’s syndrome, cerebral palsy, and other such diagnoses get this all the time.  “He doesn’t speak.”  “She can’t walk.”  “He doesn’t understand much.”  “He cries a lot.”  Many times these become defining markers for such kids.  It becomes easy to live up to their labels and no more.  How unfair is that!  I tend to be forgetful, but I don’t go around being attached to this deficit.  I am not introduced as Lisa, the forgetful one.  I would certainly get a complex if that were the case.

To make this fair, Philip and I went back and forth naming 4 things we thought were positive about ourselves and then 4 things that were positive about each other.   

Here is Philip’s list of his own positive attributes:
     1)  A LOT OF CHARM
     2)  I AM EASY GOING
     3)  HANDSOME
     4)  SMART

This was my list for myself:
1)      Patient
2)      Easy to please
3)      Understanding
4)      A good teacher

This was my list for Philip
1)      Wise
2)      Good writer
3)      Affectionate
4)      Good memory

Here is Philip’s list for me:
1)      CALM
2)      GOOD WRITER TOO
3)      YOU ARE GOOD AT PIANO
4)      I AM ELATED TO HAVE A MOM LIKE YOU

I love that last one!  Yes, my son is a charmer and apparently he knows it too!  

It has been a revolutionary year in our household.  Brand new ways of thinking have been replacing outmoded  patterns of thought.  Presuming intelligence instead of assuming incompetence has allowed Philip to reach beyond what we previously thought he was capable of.  Michelangelo’s quote rings true in our case:  “The greater danger for most of us lies not in setting our aim too high and falling short; but in setting our aim too low, and achieving our mark.”  Once we began showing Philip we believed he was smart, he began to show us how smart he was and it was far and away beyond what we expected.  Another thing we began to change was the idea that Philip had to conform to the way “normal” people do things.  Instead of speech, we found an alternative way for Philip to communicate that is its equal- the written word.  Since then he has flourished in expressing himself and has found a new sense of happiness.  Instead of expecting Philip to endure situations which cause him undue stress and sensory overload, we try to understand him and compromise.  An example is how our family now watches the beginning of the church service, when the band is playing too loudly for Philip, from a TV in a room across the sanctuary.  We no longer believe professionals and others know better about Philip and his needs than us.  While we still value the input of professionals, Sam and I know Philip best.  We know that besides himself,  we are the most competent in advocating for Philip.  Lastly, we have learned to appreciate Philip for all he is, just as he is.  While we acknowledge his disabilities (and as humans we all have our own challenges), we choose to focus on and celebrate Philip’s positive attributes.  Philip is charming and has a sense of humor.  Yesterday our family got together to watch the Pacquiao vs. Rios boxing match.  Of course with my side of the family being Filipino, we are all huge Pacquiao fans.  My mom said to Philip, kidding of course, “I am cheering for Rios.”  Philip spelled back to her while smiling, “YOU ARE A TRAITOR.”   Everyone laughed.  Philip is easy going.  I have had to apologize numerous times to Philip and every time he has freely forgiven me and even reaffirmed his love by hugging me and telling me “I LOVE YOU.”  Philip doesn’t seem to get hung up on himself.  When he has expressed sadness, it has been for other people.  He isn’t attached to material stuff, but is happy with what he has.  Philip is smart and wise.  Not only does he have a great memory for what he has been taught, he knows how lessons apply to his life.  He often displays a maturity way beyond his years.

I know Philip is a lot happier now than he was a year ago.  He has a voice.  He can connect with others in a way that was not possible before.  He has a purpose.  He wants to help his friends learn to communicate too.  He says he wants to open doors for autistics to go to normal schools and lead more satisfying lives in the community. Today he spelled, “RPM is the best thing that has happened to me.”   I believe it is one of the best things that has happened to me too.   

 Seeing Soma at HALO for the first time Oct. 2012

Wednesday, November 20, 2013

Learning from History



I love teaching Philip history.  I have a much better appreciation for it now than I did when I was growing up.  There are so many life lessons to be learned in history as well as people to admire for their character, accomplishments, and place in history.  

One such man was Frederick Douglass, the subject of our lesson today.  Douglass was an African-American born into slavery around 1818.  As a baby he was separated from his mother and worked on a plantation.  When he was around 11 or 12 he was sent to serve in the house of Hugh Auld in Baltimore.  Auld's wife Sophia started teaching Douglass to read at age 12.  Douglass fondly described her as kind-hearted and treating him the way humans ought to treat one another.  However, when Mr. Auld found out about it, he quickly put an end to it, knowing that education would ignite the embers of discontent and flame the desire for freedom.  Despite this, Douglass continued to teach himself to read secretly by reading discarded newspapers and observing the writings of the people he worked with.  Douglass is quoted as saying "knowledge is the pathway from slavery to freedom."  

When Douglass was a teen he was returned to the plantation where he taught the other slaves to read the New Testament in Sunday school.  Eventually he was found out and was sent to work for a farmer with the reputation of being a "slave-breaker."  Douglass was regularly whipped and beaten.  Finally in 1838, Douglass was able to escape by boarding a train, disguised as a sailor.  

Douglass settled and married in Massachusetts.  There he met William Lloyd Garrison, a white abolitionist with whom he would work closely with, writing anti-slavery publications and giving lectures.  Douglass was a gifted orator who moved audiences with his personal account of slavery.  Douglass wrote his autobiography which became a best seller and furthered sympathy for the abolitionist movement.  However, skeptics doubted such eloquent literature could be produced by man of a supposedly lesser race.

Douglass championed equal rights for all.  He actively supported women's suffrage.  He said, "I would unite with anybody to do right and with nobody to do wrong."  Douglass strongly believed education was the key for African Americans to improve their lives.  He was an early advocate for desegregating schools.  During the Civil War, President Lincoln regularly conferred with Douglass  regarding the treatment of black soldiers and the emancipation of slaves in all the nation.  

I go through this history of Frederick Douglass' life and work because I see so many parallels between his life and my son's.  I see parallels in the Abolitionist and Civil Rights Movements of the past and the Disability Rights Movement of today.  I am touched at how a caring woman who treated young Frederick Douglass with kindness and respect, even though she was the wife of a slaveholder, made such a difference in his life and affected the freedom of countless others.  I'm amazed at Douglass' resiliency that despite countless beatings, he would not stop from securing freedom not only for himself, but for others too.  I'm impressed he told his story again and again despite skeptics saying a black man could not be intelligent.  He could not be denied his own story and because he was an insider, it was the most powerful.  Douglass partnered with people who did what was right and stayed away from those who did wrong.  He would not ally himself with radical abolitionists who espoused violence to justify its goals.  Douglass understood the importance of education and inclusion in helping all people be most successful in their lives.  

After learning about Frederick Douglass, Philip composed this essay.

Frederick Douglass

I can relate to Frederick Douglass except I am autistic not a slave. I tried talking but it did not work and I was mute.  I appreciate talking so much.  Frederick Douglass was active in fighting for freedom of slaves.  He wrote his autobiography and he attracted rallies for antislavery and support of abolitionism.  He attracted statesmen to join his cause.  As a liaison to the president every African American was represented.  He helped other slaves obtain freedom liberally.  I ask for the same freedom for my autistic friends.  I will fight for them.


 Philip's essay written on the iPad