This is the story of a boy who could not talk, but learned to make his thoughts known by spelling on a letterboard and typing. This is his path from silence to communication.
Showing posts with label changing perceptions. Show all posts
Showing posts with label changing perceptions. Show all posts
I am peaceful today because people are
treating me a lot differently than they used to. Today I went bowling with my
friend Max. I was happy because Max's dad made conversation with me and made me
feel I am important. He said I helped him see Max in a new light. I am doing my
best to make a difference. I am pleased when I can see how I have helped.
I have heard of an interesting idea
called Neurodiversity. I think it should be the new way of seeing autism. Neurodiversity
is the idea that autistics have a different neurology and shouldn't be expected
to become a person with a neurotypical neurology. No one can be cured of
autism. Therefore we should stop making cure a goal. Instead let's try to
accommodate our difficulties in communication. To continue to use therapies
that don't respect our neurology such as ABA is like trying to beat a dead
horse. They don't allow us to grow how a person should. Peace comes when I can
see meaningful changes in my life. This year I have been able to join regular
classes at school. I am proud to be able to attend because last year I couldn't
because of my behaviors. Now I can handle myself much better. I love learning
new and interesting things. I also can do things without as much anxiety as I
used to have. I can go to crowded arenas, meet new people, and try new
activities like biking and ice skating. I am still autistic 100%. But I am
making progress like a human being should.
This is a letter from Philip to parents who have contacted him to address their fears and worries about
their children diagnosed with autism.
Dear Parents,
As an autistic boy, I want you to know I
am happy. My autistic neurology makes me think very differently than most
people. I can sense the world keenly, making me a very observant person. People
make wrong assumptions about people who don't act like a typical person. Making
assumptions about something as important as your child is dangerous if you make
the wrong conclusions. I have lived the consequences of my parents' wrong
assumptions. Being thought as retarded and in need of remedial education assigned
me to many years of ABA and useless therapies based on neurotypical assumptions
of autism. Man assumes many things they don't really know. The best way to know
someone is to hear from them personally. The only way to hear from me has been
through RPM (Rapid Prompting Method). I think most autistic people can make use
of assistive means to communicate. Parents should look into learning more
communication methods. Body awareness programs would also help a lot. My
parents have done a lot of therapies. Making life as normal as possible and
helping us to communicate is what makes the biggest difference in our lives. Please teach
us interesting things. Don’t just address the things you want to fix. Accept
us the same way you want to be accepted yourself. Mainly, maintain an attitude
of love and patience towards us. Making us feel loved is an essential part of
helping us meet the challenges of living in this world.
I am empathetic. I can feel
people's moods. I am too sensitive. I mean to not be affected sometimes
but I cannot help it. For example if someone cries by me, I cannot help but
feel sad too. I have lots of anxiety when people around me are upset. It can be
a burden because I feel the weight of their sadness too. I am trying to give this burden
to God more. In prayer I look to God to help those who need help.
I am loving too. Opportunities to make
people happy and blessed are very welcome. I look back at the times people were
nice to me. I am thankful for those good memories. People need meaningful
personal interactions to help them feel good about themselves. I am happy
when I can help. I now blog and meet with people to light the way for others so
they don't live being misunderstood by their family and community.
I am still struggling mightily. My
impulses get the best of me and I hate it. Meaningless actions my body
does when I am stressed leave me embarrassed and ashamed. I try to understand
inside my mind firing neurons from impulses and trying to stop them with other neurons
in a thinking part of my brain. Peace laces pain of real magnified mistakes
from popular misconceptions of autism. Popular misconceptions cause lasting
callouses that ache. I plan to break old ideas that autism means I am diseased
or defective. Because of these ideas I was made to think I am not deserving of good
things or meaning in my life. I became hardened to not care about my life. I am
now just starting to heal. Peace comes from walking with God and making a
difference in the lives of others. I am caring that others like me live free
from being misunderstood. Making search for autism causes is not helpful
to those living with autism. Empathy and making communication a priority are
the most important things you can give us.
My name is LS and I'm the mother
to a wonderful 3.5 year old autistic boy who is nonverbal. I have been reading
through your blog for a week or so and love learning from you! 8 months ago we
discovered Augmentative and alternative communication (AAC) and bought my son
the app "Speak for Yourself". He is doing amazingly communicating
with it! He has stunned his school staff and they have been inspired to try to
incorporate the app with as many other children in his school as possible. I am
so proud of him for showing that a 3 year old can use a robust communication
device and shouldn't be limited to one with only a few words, as they
previously assumed. He is showing the world what we already knew - that he is a
very bright boy with a huge desire to share his thoughts, feelings, and sense
of humor with everyone around him.
Philip, my question to you is
whether you have had any introduction to high-tech AAC or whether you have
friends or classmates who use these devices? My son does love letters and has a
keyboard built into the app and I am sure he will love typing someday but right
now he is able to use motor planning to remember where approximately 600 words
are on his device and we are constantly adding more. I am new to the world of
communication for nonverbal people and have been eager to see if anyone who
uses RPM also uses AAC devices instead of or in addition to a letterboard or
keyboard?
Thank you for your time! I hope
you have a wonderful day!
Sincerely,
LS
Philip writes:
My experience with AAC began when I was
6. I started on Go-Talk. It had only a few icons. It was good for requesting
but not much else. Then I got an Alt-Chat. It became my voice at school.
However I was not able to communicate with it with my family. They did not know
how to use it. I kind of tried but I could not express my thoughts with the
pictures. I could only make requests for food. I do best with a keyboard. I am
able to express myself best making use of a good vocabulary. I am most happy
using letters. The words I spell are what I think. Good communication systems
let you say what you really mean. The AAC programs are often geared to me
making a practiced response. I have to navigate the pages to find what I am
looking for. I can't always find the right picture. It makes it harder to communicate
for me. At school, I use Proloquo2go. I use some icons for shortcuts like
bathroom and break. I like the combination of icons and text. I am for AAC with
a text option. At home I use a paper letterboard or iPad with the Assistive
Express app. My app allows me to have an actual voice to what I type.
In making my thoughts known I can be
free to live my life how I choose because people can understand me. I am
peaceful knowing I am free to really speak my mind. I speak to save my Autistic
friends from an established philosophy that is not true. Demeaning treatment of
Autistic people must stop. ABA (Applied
Behavioral Analysis) treats us like animals to be trained.The lack of understanding of autism guides
the philosophy that Autistics cannot learn normally or make friends.Autism is not lack of intelligence or
empathy. It is mind-body disconnect and sensory differences. Good accommodations
are what is needed. Doing the research on Autistic people who communicate
should help professionals in the autism field. I think they should meet us to
learn from us.I want to teach others.
Will you listen?
High-Tech AAC iPad
Low-Tech AAC Letterboard
(made on computer and laminated on card stock for stability)
Philip, tell me more about how you
worship God in your spirit. What is your relationship with God like?
My answer:
I have worshipped God since I was very
young. God is everywhere. I question those who do not see God. I see God in
nature. He paints the world in a splendor of brilliant colors. He makes
everything grow. God puts the sun, moon, planets, and stars in their orbits. He
makes laws of physics, motion, and chemistry to govern nature. He makes things
come to life. God very much loves me. He helps me by giving me the philosophy
of life that He is always with me. He made me autistic. He didn't make a
mistake. People are never mistakes. Autism is a peaceful life for me. He
created me for a mission to bring peace to autistics. By telling of my story to
be accepted, included, and given a means to communicate, I aim to change
society. Upholding the philosophy that all men are created equal, I champion
autistic people's rights to education and full inclusion in society.
I always praise God for His love and
might. My spirit worships God by praising Him inwardly and outwardly through my
writing. Inwardly I make songs and pray to God. I am peaceful in my relationship
with God. I talk to Him moment by moment. He makes me think about
life. He teaches me a lot about my questions on autism and my
philosophies on love. God doesn't love me based on how I perform or how
close to normal I appear. He loves me because I am His child. God can't stop
loving anyone. He is all peace and love. People have a choice to love God back
or not. God knows me best. He loves me best. I love him.
