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
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