Friday, March 27, 2015

For Cerebral Palsy Awareness Month by Guest Blogger Ila

The Disability Community is diverse and proud.  One of the blessings I have had as a mother of an autistic child is getting to know this community more.  Many amazing characteristics emanate from the people and families I have met who live with Autism, Down Syndrome, Cerebral Palsy, Rett's Syndrome, Tourette's Syndrome, and other disabilities.  They are appreciation for things often taken for granted, thankfulness, resilience, perseverance, friendship, humility, strength, compassion, faith, and in many cases, unexpected joy.

Ila is one such person who exudes all these qualities.  I have had the pleasure to get to know her through the blogging world.  She first reached out to us, finding Philip's blog and asking him a question.  She recently asked Philip to be a guest blogger for World Autism Awareness Day on April 2, so stay tuned! Ila lives a happy and adventurous life with Cerebral Palsy (CP).  She has an excellent blog called Ila's Crazy Thoughts.  I invite you to check it out and catch some of her refreshing exuberance!  She has returned the favor by guest blogging for us for Cerebral Palsy Awareness Month which is March.  So without further ado, I introduce you to 21-year old Ila from Italy!

Cerebral Palsy Awareness Day: Thank you CP!




WARNING: this post is extremely crazy and revolutionary.

Today I want to thank my disability for several reasons.

CP made me who I am, it is a part of me and the challenges I face make me a stronger person. The days in the hospital and the hours of therapy taught me to appreciate the small things in life. Without my disability, learning to put my shoes and braces on by myself wouldn't have been such a big accomplishment. I think that is one of the reasons why I am always so happy.

My disability is the reason why I have met many of my best friends and the awesome people in my life. If I didn't have a disability, I wouldn't have been part of this great big family, and I am so thankful for all the people from the special needs community who love me and support me everyday.
It is also a good filter: the people who don't like me because I am different are not good enough to be part of my awesome life.

Because of Cerebral Palsy, I see the world from a different perspective. I think if we all put our points of view together, we can all learn something from each other.

I can adapt: when something doesn't work for me, I find a different way to make it work. This applies to so many different things that range from brushing my hair to going on a trip with my friends.

I don't care about what people think: I have been picked on because of the way I walk, yelled at because it takes me more time to do some things, made believe I am worth less because of my disability. I don't care. I know what I'm worth, and I know that I can accomplish more than people think.

I love my life, even when it is hard. Without obstacles, I wouldn't be able to fully appreciate it.
I don't want a cure, I am happy with the person I am. I do want awareness. I want people to know what CP is, but I also want them to know that it is not a big deal and that I'm not so different from anyone else.


This post was originally posted on Ila's Crazy Thoughts.   

Wednesday, March 25, 2015

More Toileting Tips

A mother writes:
My son is 9 years old. He will do all the bathroom steps (may need prompting at times) but doesn't void in the toilet. We have him in pull-ups. Has Philip communicated his thoughts to you about using the toilet, like what might have been the thing or things that made this challenging? Thanks, S

To S,
Toileting academics help in searching the mind to make connections on how my body functions and how I can gain control over my body. He should learn about the body in an academic way, explaining the blood, kidneys, and bladder. The challenge is I could not feel when I had to go.  I still can't feel it well but I am able to guess and I can relax my bladder when I go.

The toilet makes a loud sound. I used to be defensive of going but now I’m not. Have him flush only if he wants.
From,
Philip

(The following is a repost from before, but I wanted to include it here for new readers.)

Hi Philip!
I have an 8 YO son with autism too. His name is E. E is non-verbal. And he is still not able to communicate. You inspire me to encourage him to communicate with me. Btw, are you half Filipino? I am just starting to read your blog and could not find the answer yet. But I am so excited about the things that I can learn from you. A bunch of Thank you’s for having this blog. You renewed my passion to help E communicate and all the Autism kids. Here is my question for now.
E is not potty trained yet; do you have any advice how he can learn to do it? Again, thank you.

EM
Renton, WA


To EM,
I am half Filipino and half Mexican-American. I mean to tell you some toilet training tips. To make E try to use the bathroom, treat him like his age. I could not stand being treated like a toddler and made to pee for prizes. I did not want attention on me when I used the toilet. My mom used to do a potty song. I hated it because everyone knew I was in the bathroom. No person could train me. I did not want to be like an animal to train. Peace made a giant improvement in my toilet training. Learning going to the toilet happened for me when I was 9. Mom had started RPM lessons. She taught me about the body and how it works. I felt respected as smart and my parents loved me. I really made up my own mind to go on my own. I am the same Philip before and after communication, but I can meet my heard goals now. I wish E and you the best.
From,

Philip



Friday, March 20, 2015

Writing

I write for pain relief. Pain comes in many forms. My senses make lots of trouble for me. Tons of minute details pull for my attention. Meaningful things compete each day for my focus.  They must compete against my impulse to be drawn to insignificant things such as a napkin to shred or a glass bottle to tap. I am panicked to leave my stims because I get overwhelmed by sounds and sights coming at me all at once. In school in PE I must keep moving to take my focus off the loud echoes from the gym. I must move in my seat to not be bothered by the seat's metallic hardness. I must allow myself to tap objects to find myself amidst all the chaos. I hope I cease being hindered by stims. I am compelled to stim so much it gets in the way of meeting my goals to be included in my regular classes. I am smart enough to do the work. But my teachers say it's not enough. I have to sit well. I have to be a little more focused. I have to be more quiet. I like to write to try to think about my life and how I can improve. I am peaceful when I can explain my thoughts and feelings. It relieves my anxieties more than stims. I care to replace some annoying stims with smart decisions. I forget to use my thinking brain when my senses get overloaded or I feel nervous by people's expectations. I can remember mom's words that people like me. I can learn not to be too anxious about many things that don't really hurt me. I can reason about situations. I can peacefully breathe to slow my body. Writing is my outlet for teaching myself each day and contributing to society. I love writing. It is my passion. I mean to be a writer. I like to imitate people I am admiring. I like Malala, potent authors, my friend Ryan, and my mom. I hope to learn to be more like them. I mean to write to make my thoughts be always remembered. Each day I try to write to be peaceful in my soul. I write to heal. In writing I find my joy.

Love,

Philip


Philip's 12th Birthday

Tuesday, March 17, 2015

Many Thanks to Soma

By Philip


Each day when I type I am thankful to Soma. Putting together RPM is the best invention for non-speaking people. I remember that I was nine questioning myself if I would ever be understood. One day my mom met Mrs. Conti and learned about Michael going to Heim because he could communicate.  So impressed was she about her son Michael who learned and left (his old school) because he could communicate by RPM that she sought to try RPM too. Perhaps God led us to meet them so we would meet Soma. Meeting Soma was the top moment in my life. Nothing I had experienced in the past had prepared me for learning from Soma. When I arrived at HALO where I first met Soma, I was nervous I would not be able to perform as people expected. This happened to me all the time. I did not think it would be different. I hoped my parents wouldn't be disappointed.  I went into a perfectly small room, which managed to keep me mentally acute and calm so I could do my best. Soma was a tiny woman. She didn't talk like most anyone I worked with before. Nobody had talked to me like I was smart or understanding. Soma was the first. She talked conversing with me. Out-of-the box was her focus. A lot of people miss me because they see my outward behaviors and not the intelligence. Soma saw through my exterior and into who I really am. She allowed my stims but told me how my hurtful behaviors were momentarily troublesome to her.  I respected her to work hard for. I was so exhausted after our first session.  I answered a lot of questions Soma asked by pointing to choices she wrote on paper. I was made to feel smart and inquisitive. People never thought that about me before. Soma told me how Pilgrims made their home in the new world. She taught me how to spell on the stencils. I opined how interested I was in learning. I became interested in achieving some say in my life. I realized I needed to participate in conversation. I decided to answer for myself what I wanted my life to look like. I placed myself in Soma's care. I wanted to learn from her as much as possible. I didn't want to leave. Moments came over me when I couldn't control the anxiety from disappointing myself from not answering correctly. I sometimes grabbed at Soma's shirt in frustration that making my body move correctly was so tiring. I wanted to peacefully apologize for hurting her. Soma was so patient that my anxiety almost melted away. I was seeing what I was able to do for the first time. In meeting Soma, my life moved away from despair and toward the hope of new life. I am preparing to write my biography. More stories will be shared there. I am forever thankful to Soma for giving me my voice. 

Philip meeting Soma for the first time Oct. 2012 (age 9)

Philip today on his 12th Birthday- 3/17/15

Tuesday, March 10, 2015

Acoustics- A Music Teacher's Question

A writes:
I am going to be graduating with a music education degree in May and I am hoping to get a job at a middle school teaching beginning band. My question is what could I as a teacher do in that environment to help autistic kids who want to learn instruments, but may get overwhelmed by all of the stimuli going on in the room? What do you think would help you in that situation? Love your blog! Just discovered it yesterday and have been reading it nonstop. It helped me understand some of the autistic students I have had in the past better.
A

Philip writes:
I am a lover of music. Music plays a mighty role in my life. I am moved by a beautiful song. I am moved by melodies and good lyrics. Music is loved but sometimes it can be too loud. I am very sensitive to sound. Acoustics play a role. I have apprehension when I enter a room with hard floors and walls.  Loud sounds bounce piercing frequencies. They kill my peaceful enjoyment of music.  I feel like a glass man easily shattered by active waves of giant sound. However, I do not want to be this fearful. I toughen up by facing my fears. I am losing my sensitivity to loud places by going to them more often. I can go in church. I can go in a gym and to movies.  To face a hard environment, I am mindful of me wanting to participate. I tell myself that man attains nothing by allowing his surroundings real power to stop him from what he wants to do. I try to withstand the sensory torment by stimming to calm my nerves. In my quest to socialize I make my stims try to blend in.  I cover my stims by whispering to myself my own song to try to calm down. My advice to kids who want to learn an instrument but get overloaded is to master his fear by telling himself peace will be limited if you avoid everything that brings apprehension. To put fear to rest, address the job of meeting his goal. Make a plan to get there. Get help if needed. Learn to adapt.  And when you conquer your fear, and achieve your goal, you will achieve true peace.


You can help your students by asking them if they can tolerate auditoriums. If they can't but still want to learn, may they wear noise-cancelling headphones? You can also try to gradually expose them to the auditorium. I am peaceful in the auditorium after a year of trying little by little. Patient teachers are the best.

Philip's favorite instrument is the piano.  He can't play yet, but maybe in the future...