Through Ryan's Eyes | Teen Ink

Through Ryan's Eyes

May 3, 2014
By Lowellandme, Greenfield, Massachusetts
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Lowellandme, Greenfield, Massachusetts
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Author's note: I have cerebral palsy, so I was hoping to give people an idea of just how challenging it is to live with the disability.

In almost every way Ryan Collins seems like your normal teenage boy. He loves sports of all kinds and plays games on a special computer but he's not. You see, Ryan has cerebral palsy he cannot walk or care for himself.
Ryan resides in Iowa with his mother father and 22-year-old brother Caleb. Ryan was born ten weeks premature on December 15, 1995 weighing a mere two and a half pounds. At 5 months old his family began to notice he wasn't meeting developmental milestones after seeing a number of different specialists they received a diagnosis of spastic quadriplegia cerebral palsy. His father Michael and mother Anne were shocked at Ryan's disability and they had never heard of cerebral palsy before. Despite the fact they had a child without special needs and one with special needs they treated Ryan like they did Caleb. Ryan is very intelligent but up until he was ten he could only be understood by those who knew him well. Ryan is fed through a gastronomy tube which is in his stomach and he typically gets three feedings over a 24-hour period. Ryan is fed formula. He has never tasted real food in his life and he never will. He also wears AFOS on his feet and uses a wheelchair and sleeps in a hospital bed.





One of Ryan's favorite things to do is watch his brother do Tae Kwon Do a Korean style of martial arts. Caleb who started training at the age of three is currently a second degree black belt. "Ryan loves to watch me train and comes with me whenever he can” says Caleb Caleb's belt is black as asphalt with two little blue stripes and his name is engraved in English and on the opposing side it says ''tae kwon do'' in Korean

In this next paragraph Ryan's brother gives us a summary of what a typical day in the home is like.



"Normally I wake Ryan up around 4:00 in the morning and get his feeding started. At 5:00 I start running a bath for him and for the next ten to thirteen minutes I bathe him. By 6:15 I have him dressed and he watches television. At 7:00 I put together his backpack and he is waiting for me to get ready . Finally at 7:20 I load him into the minivan and he heads to school. School starts at 7:45 AM For the next six hours Ryan attends classes at Washington High School he is in the transitions program for teens with disabilities, At 1:45 I return to the school to pick Ryan up At 7:00 I take Ryan to my martial arts school where he watches me for the next hour Then at 8:30 I get him cleaned up and ready for bed". "That is a condensed typical day in our home."



‘’Three weeks ago we added a new member to our family Ryan's service dog Jewel. A 3 year old yellow lab. Jewel can perform over sixty tasks all designed for Ryan’’. ‘’These tasks include carrying items in a special backpack pulling Ryan in his wheelchair or pushing an emergency button to let his caregivers know that he is in trouble’’. ‘’ Jewel and Ryan are already inseparable they go everywhere together including school and the comic book store.’’



(Ryan's POV)



I am a skinny 5’’6 seventeen year old who is normal in almost every respect. The only thing I think is different about me is that I have a medical condition known as cerebral palsy.

Living with cerebral palsy is very difficult but I try to make the best out of it. It is awful because sometimes I can't get into buildings because of my cumbersome wheelchair. My least favorite place to go is Iowa Children's Hospital because I get poked and prodded for hours on end or I have to go through painful physical therapies or surgeries that leave me in pain for weeks. My favorite place to go is to the movies. I enjoy all sorts of movies but I love biographical movies and I don't have one exact favorite. The first time I went to a movie I must have been around five years old so more than a decade ago. My parents had taken Caleb and I to see "Toy Story 2:" I really didn't like it that much neither did Caleb.





Now let me talk about my struggles and triumphs in life I have a mix of both triumphs and struggles. First I'll talk about struggles because there are more of those than there are triumphs". "I struggle with things most people find easy like forming a sentence I can say words but I can only be understood by those who know me well which is why I need my augmentative communication device whenever I'm in public. Tasks such as getting dressed are impossible for me to do without assistance from somebody such as Caleb or my mother or father. "Sometimes I feel like giving up but I know I can't" "I just have to accept the fact that I have cerebral palsy" so I try my best to roll with the punches". "I also don't feel understood or accepted and that's why I hardly have any friends at school". "I'm a normal teenager in a not normal body".

Now it turns into a positive story as I talk about my successes in life. One of my successes came just about three months ago when finally after eighteen months of waiting. I flew with my big brother to Santa Rosa California to Canine Companions For Independence where I received my service dog Jewel. "That was the best two weeks of my life. I did feel quite nervous the first day like anybody would" "But once I got familiar with the CCI training center I felt at home" "The most fun I had was when they let us meet the dogs when I met Jewel I knew that he was the dog for me!" "The feeling of having my very own dog was incredibly rewarding".

"I dream about what it'd be like to walk and I don't want that dream to end".

My brother says "I wish I could switch lives with my brother for a week just so he could experience the feeling of being able to walk eat and use his limbs".

"I'm going to Florida to visit my grandparents I haven't seen them in about a year." Hopefully I can see cousin Aaron because he was just born and I love little kids. A lot of my family doesn't live in Iowa." But hopefully Caleb can take me swimming in my grandparent's pool.





Well the big day has arrived it is time for me to go to Florida on vacation it's currently 4:00 AM and Caleb is shaking me to wake me up he brings over my wheelchair and says "How you doing sport?" while putting a can of liquid into my feeding pump and pressing the button.

I process his question meanwhile Caleb says "Take your time bro" and slowly one letter at a time comes my response g-o-o-d. "Well we better get you bathed buddy". He lifts me out of the bed and into the chair “Gosh, did you gain ten pounds overnight?!Caleb says laughing." He pushes me down the hall to the bathroom while my legs and arms jerk uncontrollably. Caleb takes off my chest support and seatbelt and lifts me out of the chair and places me on the towel and gets me undressed. After he places me into the steaming hot bath and cleans me and puts shampoo in my hair. He gets me out of the tub and dries me off while I spasm and jerk uncontrollably and he places me in the chair and brings me to my room and says "What clothes do you want to wear today man"?



Slowly I say “y-o-u p-i-c-k" Caleb picks out my favorite grey long-sleeve t-shirt with a snowboarder on the front. Along with my tan sweatpants. Caleb dresses me and then puts my iPad in front of me and puts on a movie. "Watch this while I wake up mom & dad" Caleb says sprinting down the hall towards my parent's room.

Caleb knocks on my parent's door and my father says "come in" "Ryan is awake I gave him a bath he's dressed and he's had his feeding already. Caleb comes out and pushes me into the living room while he makes himself some scrambled eggs and sausage. I've always wondered what it would be like to eat real food instead of just liquid A few minutes later Caleb brings his breakfast out to the table on wheels and sits next to me while I watch TV. I start to jerk and Caleb says to me "something tells me you want the channel changed Ryan'' I blink rapidly which is my way of saying ''yes'' because it is very difficult for me to say ''yes'' verbally. Caleb says "Jewel bring Ryan the remote" Jewel grabs the remote off the coffee table and runs over with the remote in his jaws and drops it into my lap. And Caleb helps me push the buttons for channel 225. Caleb says ''Our flight leaves at 3:00 PM sharp'' I smile because I am so excited ''w-h-a-t t-i-me i-s i-t n-o-w?" I ask ''7:15 A.M'' he replies. Caleb walks over to my wheelchair and bends over and opens my backpack and says "you need a new cloth that thing is soaked!" That's one thing I forgot to mention I can't control my jaw therefore I drool and I don't realize it. He takes the spit-covered cloth off and replaces it with a new fresh one and puts the old cloth into the hamper. "C-a-l-e-b c-a-n y-o-u t-a-k-e m-e o-u-t o-f m-y chair I ask "Sure sport" Caleb replies I jerk as he moves me from my chair to the blanket on the floor "try to relax" Caleb says. He places me ever-so-gently on the blanket. "on your side good man?" Caleb asked me "y-e-s" I say. My mother comes out and kisses me on the forehead "morning Ryan" she says sleepily. "are you excited for the trip to see grandpa & grandma"? My mom asks I blink my eyes which is my way of saying yes. My mother turns on the coffee pot and says "Caleb do you want some coffee?" "No, thank you" Caleb replies. I start laughing and Caleb says "what are you laughing about now sport? He comes at my side to discover I'm laughing at a funny part in one of my favorite movies." My father comes in and says "morning Ryan" and gives me a kiss. He starts making himself an English muffin when he asks my brother "is Ryan all set?. "yeah he's set" my brother says.



Caleb comes and lifts me up into my wheelchair and places my iPad onto my tray. It is now 9 AM and Caleb says "Okay let’s get your stander out" he leaves me in the hall while he walks down the hall to my room and wheels my stander into the living room "here it is" he exclaims. He swings my tray away and he lifts me into the stander and straps everything in. And he places the iPad on my tray and says "You good now man?" I blink "I'll assume that means yes" he smiles and heads off into the kitchen. I hear the clattering of pots and pans in the distance I think that means mom is going to cook. Caleb comes out "How you doing man"? "g-o-o-d" I say.

Caleb says "I've think you've had enough man" he has me in a hold and says "would you like to get on the floor"? "s-u-r-e" I reply he puts me on the floor.



Caleb just starts talking to me and asks me lots of questions "let's see what's on T.V" Caleb says he scrolls up and down the guide when I start drooling he looks over and takes my cloth and wipes the drool from my face "t-h-a-n-k y-o-u" I say "anytime man" Caleb says he finally puts on the movie "Dolphin Tale. Midway through the film Caleb says "It's time for your second feeding" he reaches into my backpack pulls out a can of liquid pours it in and presses the button. Caleb checks his watch and says "its 1:40 Ryan". My mother and father are running around like crazy trying to make sure everything is packed in suitcases. Caleb has already packed all of my medical supplies and personal belongings into my backpack. I honestly don't know what I'd do without Caleb. He knows what I need without me having to tell him. He was helpful to my parents even when he was young. My mother had to explain to him what cerebral palsy is when he was a toddler. I can remember how proud he was to be seen with me and he'd say "this is my brother Ryan"! He was and still is protective of me.



We go to the minivan and take off for the airport. And I must've fallen asleep on the flight because my brother shakes me and says "Come on buddy we're here” My father goes to the desk to inquire about renting a car. We head for Grandma's house and when we get there the first thing I say is "c-a-n -I g-o s-w-i-m-m-ing"? not yet sport we have to get settled first". My grandma says "Caleb Samuel look how big you've gotten" while my grandfather says "Ryan Lucas you've gotten so old" he says teasing me. Caleb says "Ryan I'm going to change you into your swimsuit now" Caleb is already wearing his. He changes me into my fire swim trunks and puts on sunblock and sunglasses. And tells my mom "I'm going to take Ryan for a swim" "have fun" my mom says. Caleb wheels me out and takes me out of my wheelchair and lowers me into the pool. The water was so cold you'd think you were in Alaska. I sink to the bottom and Caleb brings me back up. "very funny sport" Caleb says laughing. Caleb says "here's your ball Ryan." He helps me place my hands on my favorite soccer ball. I start to jerk I'll often jerk if I'm excited so Caleb says "I think somebody's excited"! I start to blink and my legs spasm Caleb says "I think it's time to go inside Ryan". He lifts me into my chair and dries me off. He brings me into my room and takes off my wet suit and gets my green sweatshirt and black t-shirt on and then gets on my grey sweatpants. In the distance I hear my grandpa telling my father about some regional fishing championship My grandfather pursed an interest in fishing when he was nine. So he's loved fishing for over sixty years. My grandma loves to scrapbook so she spends her days at local craft stores.



My grandmother comes in the doorway and says "supper's ready meatloaf mashed potatoes and peas". "one of my favorites" says Caleb but the truth is he'll eat anything. He puts me in my chair and says "Let's go" he says I start jerking and drooling.

Caleb leans over and stops in his tracks and takes out a new cloth. My head drops and Caleb picks my head up. Caleb sits down and eats his dinner all that good food is making my mouth water. After Caleb gets himself a bowl of vanilla ice cream with raspberries on top. "Ryan you want a bite?" "y-e-a-h" I say. He lets me have two bites and it's delicious.

After supper Caleb says "let’s go into our room Ryan". He takes me into the guest room and gets me undressed and into my pajamas. He puts on a movie and starts flipping through a Sports Illustrated magazine. "Ryan and Caleb we have a surprise for you" my mother calls we go into the living room. "Tomorrow we're going to the Florida Aquarium" my grandfather says. We go back to our room and Caleb puts me into the bed and pours a can of liquid into my pump and presses the button. "good night sport see you in the morning". I fall asleep very quickly and Caleb wakes me up bright and early right on schedule. He kisses me on the forehead and gets me out of the bed and walks across the room and puts me over his shoulder and places me on the bathroom floor gets me undressed and places me into the tub and cleans me up. He places me into my chair and dries me off and gets me dressed. He puts my "medical alert" wristband on and turns on the TV. Ever since I was little my family makes me wear a wristband telling people my name and that I have cerebral palsy and my brother's cell phone number is engraved on the band in case of an emergency. My band has army camouflage on it. It's a lot like the bands they give you at the hospital. My mom comes in "good morning boys" she says. My grandma is already cooking pancakes and fried eggs in the kitchen she always needs to be doing something she visits the soup kitchen and meets once a week at the local senior center . My grandfather is a member of lots of fishing clubs and he frequents the Bass Pro Shop. After brunch we're going to go to the aquarium.





I haven't been to an aquarium since I was nine so I'm excited. Each time we visit we explore a different attraction last year we went to the Kennedy Space Center I am a big astronomy guy so I loved every minute of it. I have NASA posters all over my room and when I was eight I was an astronaut for Halloween my father even created a space shuttle to go over my chair.
I could go on and on about how fun it was! While I watch TV my family eats breakfast and talks about what we're going to do at the aquarium. A little over fifteen minutes later my brother finishes his last bite of pancake and joins me in the living room and says "everything good man"? I blink "alright I'm going to shower and then we'll get going" he says he heads to the bathroom and showers ten minutes later he comes out and says "Okay I'll get you in the van". He opens the door and pushes me down the ramp and slides open the car door and puts me in the car seat that he bought for me. He folds up my wheelchair and tosses it into the trunk. He climbs over into the seat next to me. Five minutes later the rest of the family piles into the van and we are off! I watch "War Eagle Arkansas" on the iPad and twenty long minutes later we arrive. We park and Caleb takes my chair out of the trunk and puts me in it. All of my family enters the main entrance and I say "c-a-n w-e v-i-s-i-t t-h-e t-u-r-t-l-e-s"? "Yeah we can" Caleb says "okay around noon we'll meet back here for lunch" my grandfather announces. Caleb and I go off to the turtles and Caleb says "look at this Ryan it says "this turtle is two hundred pounds and his name is Lucky" I am fascinated. Caleb says "it is 10:30 now Ryan" Caleb looks at the booklet he grabbed on the way in he says "there is an IMAX movie about dolphins playing in about ten minutes I'd love to see it!" "o-k-a-y" I reply we take the elevator up to the IMAX theatre and Caleb shows his member pass. The attendant hands him two pairs of 3D glasses and says "enjoy the show"! Caleb parks my chair in front of the screen and sits next to me. The movie looks magnificent and I get squirted with water. An hour and ten minutes later the film ends and we go down to the main lobby. All of my family is already there. We head to the cafeteria and my brother gets a mac and cheese meal with fries. My mother and father each get a slice of pizza. My grandfather gets a cheeseburger. My grandma gets a baked potato and a side of fries. I sit and talk to Caleb Everyone gets up and throws away their trash. Caleb brings me to the dolphin exhibit he puts a quarter into the machine and out comes three treats and Caleb says "you want to feed them man"? "y-e-s" I say he puts the treats into my palm and the dolphin comes and sucks them out of my hand like a vacuum. "Let's go to the gift shop I'll let you pick out a toy "o-k-ay" I say. Caleb wheels me into the gift shop I say "I w-a-n-t -t-hat" I say eying a stuffed dolphin. "Gosh you made your decision quick" says Caleb he picks up the grey dolphin and flips it over and says "$9.95 okay" he brings my stuffed animal up to the counter and takes out a ten dollar bill the person at the cash register hands him a few coins.



He hands me "Lionel" I've already named him and everything. Caleb brings me to the entrance where the rest of the family is waiting. We all walk to the car and Caleb tries to lift me into my car seat when I start jerking "take it easy, man" he says He gets me into the seat and buckles me in and climbs in. "It's 2:00 Ryan when we get home I'll get your feeding started" Caleb says. I wonder how Jewel is doing back at Grandma's home. We get into the house and I find my dog asleep on top of my bed. Caleb goes to my room he pulls a can of liquid out of my backpack pours it in and presses the button. He takes out his latest book, sits beside me and begins reading. My brother loves fantasy books and murder mysteries. I'll tell you those murder books give me nightmares! After 30 minutes the alarm on my pump goes off to let Caleb know my feeding is done. He shuts off my pump and he's still engrossed in his novel. Caleb has always had a knack for reading and I'm pretty sure he gets that from my father. My father has published numerous books on caring for children with cerebral palsy. My mother is a nurse at UOI Hospitals & Clinics and she works a very long shift. My father works the night shift at the bookstore. This means that Caleb takes care of me during the week. When I'm in school at WHS Caleb heads to the UNI campus to go to school.



In three weeks I begin twelfth grade at WHS. I will have the same aide Luke I've had Luke as an aide since the sixth grade. I attended Jefferson Middle School and Bayshore elementary school. Although I loved each school I attended Washington High School is my favorite mainly because I enjoy the curriculum that WHS offers even for special education students such as me. I spend about 60% of my day in the "special ed" class while the other 40% is spent in a class with all the rest of my peers. I receive physical therapy four days a week and occupational therapy twice a week. The physical therapists stretch me out as if I was a rubber band and not a teenage boy! My brother says "We're going to visit cousin Aaron on Tuesday". "A-w-e-s-o-m-e!" I say. Right around January 12 Aaron's birth announcement arrived in the mail he was a beautiful blond haired green eyed miracle! He was Uncle Jason and Aunt Sherry's second child they have a son named Sean who is six months younger than me. Sean and I have similar interests he loves astronomy and the Miami Heat just like I do. Caleb closes his book and says "Would you like to go for a swim sport? "N-o t-h-an-k-s"" I say "okay what would you like do?”W-a-t-c-h -a v-i-d-e-o." "Alright" he says he wheels me into the living room and says "Let’s look through your movies" I decide to watch "A Christmas Story" After the film ends I say "C-a-n -I s-w-i-m n-o-w?!" "I had a feeling you'd ask that sport" Caleb says smiling. He opens my backpack and pulls out my swimsuit and he shuts the door while he changes me. He pushes me out to the pool and puts me in the water. He puts me on the mat while he does quite a few laps around the pool. After about twenty laps he decides to stop. He gets a football out of the bin and tosses it to me and lets me feel it. I love to touch things feeling if things are soft hard squishy or lots of other textures. The football seems hard and bumpy Caleb helps guide my spastic hands over the ball. I'm loving this experience I feel as if my cerebral palsy magically goes away when I am in the water. I realize that there are lots of things that "typical" seventeen year olds can do that I can't like drive I struggle to even pick my head up let alone operate an automobile. I feel kind of embarrassed to be seventeen drooling and wearing pull-ups but I guess I can't help it.



Caleb says "It's 5:00 I think we need to go inside." He takes me out of the pool and dries me off. He wheels me inside and I can smell hamburgers cooking on the grill. My mother is on the couch watching a film about World War II. My father is reading a magazine out on the deck I'm assuming it's about sports of some kind. My grandfather is out cooking supper. My grandmother is reading a book on her e-reader that my father got her for her birthday. He gets into our room and gets me undressed and gets me out of my wet swimsuit and into my dirt bike t-shirt tan slacks and white sneakers with my AFOS. He brings me out into the living room and gives me my iPad and puts on a movie. When my grandfather calls "dinner's ready hamburgers French fries and a salad." "I'm starving" everybody says at once. Caleb wheels me out to the pool where everyone eats. I talk to my grandmother she asks "How's summer so far Ryan"? "O-k-a-y" I say.

Everyone finishes up dinner and throws away their rubbish. Caleb says "You're very sweaty Ryan I think you need a bath" "o-k-ay I say. He takes me to the bathroom and runs a hot bath for me and lifts me in and cleans me up. Then we go into the bedroom. He gets me into my pajamas and turns on the TV set and says "The Blind Side one of your favorite movies sport". I start coughing and Caleb says "you sound like you need to be suctioned" he picks up my suction machine and comes and turns it on suctions me. He turns off the TV and shuts off the lights and does the routine for my feeding pump and tucks me in. "Night Ryan" he says.

At 4:00 I feel somebody shaking me sure enough it is Caleb he lifts me up and showers me and takes me into the living room. He makes himself some cereal and a tall glass of orange juice he sits and eats his breakfast. Jewel is under the table looking for scraps "leave it, boy" Caleb says Jewel runs out from underneath the table and sits next to me. He is licking my face and I'm enjoying each second of it. I hear a shuffle of feet coming downstairs one by one everyone comes down. My grandma goes straight to the kitchen to start cooking. My mother is looking at the newspaper and quietly drinking her coffee. My father is reading a book about the civil war. My grandfather is looking at his massive collection of fishing trophies polishing each one with a sponge. My grandmother calls from the kitchen "French toast is ready" everyone except Caleb and I rush to the table my grandma brings out a plate piled a

mile high with French toast that looks like grandma drowned it in maple syrup. Everyone gobbles up the French toast and clears their plates. My brother takes me outside and takes me for a morning swim. He places me into the pool and tosses the football at me "catch it Ryan" he says The football lands in my lap and Jewel chews the football "I guess Jewel likes your ball more than you do"! Caleb says laughing. He lifts me into my chair and gets me dressed and performs a weekly cleaning procedure to my g-tube first he pours some rubbing alcohol on a wipe and it stings but just for a second. After he says "in about 30 minutes we'll leave for Uncle Jason's. He picks me up and says "I'm going to put you on the floor for the time being" he puts me on the floor and says "Here's your computer Ryan" he puts my MacBook on the floor and my switch by my side I press my head up against my switch and the onscreen keyboard comes up I slowly navigate to the "program" menu looking for my e-mail client I find it and start composing an e-mail to my friend Adam creating an e-mail is something most people think is effortless but if you can't use your hands it takes a lot of effort, time, and determination. After fifteen long minutes I finally highlight the "send" button. The way my AT software works is my switch has mouse directions on it I press the button for left, right, up down etc. Then it starts scanning the icons and the list of programs and I double tap when I want to select an item. Assistive technology plays a huge role in the lives of people with disabilities. Now I'll explain how my augmentative communication device works and what role it plays. I began using a augmentative communication device at the age of four because like I previously mentioned I can only be understood by my immediate family. I use a switch attached to the back of my wheelchair to operate and control the device. It operates just like the software I use to operate my computer. The neat thing about my communication device it also functions as an ECU (environment control unit) which means that I can operate the television, microwave, lights, and just about everything else in the house. My device cost over $1000 so it wasn't cheap. My parents opted for the ECU model because it increases my independence. My independence is incredibly important to me which is why when I'm an adult I am going to live in my own house with the help of personal care assistants. I am also going to attend a college I'd like to study to receive my degree in special education when I finish high school. My brother says "Ryan can do whatever he'd like as long as he sets his mind to it"!

My brother comes in and says "It is time to go to see Aaron" he lifts me into my chair and zips up my sweatshirt and takes me out to the van and puts me in my car seat and buckles me in. Everyone climbs into the car and we are off just about fifteen minutes later we arrive Uncle Jason and Aunt Sherry's home is a pale yellow color that looks like it hasn't been painted in ten years with grey curtains.



My cousin Sean runs out and says "Ryan want to come and see my new NASA posters"?! "o-k-a-y" I say he takes me into his room and says "Laka the first dog to ever go into space". "And my new favorite Mars Rover" "w-o-w" I say my Uncle Jason comes in and says "I hate to interrupt your fun boys but lunch is ready" Sean goes and pushes me out to the dining room. My brother is already enjoying a plate full of macaroni & cheese along with a glass of fruit punch. My cousin Aaron is sitting in his bouncy chair with a big grin on his face. Everybody finishes lunch and my aunt brings out a plate that is as tall as Mount Everest with sugar cookies along with banana bread for the grownups. The cookies look so good I wish I could eat just one. After everyone is finished with the cookies and banana bread my father says "It's time to hit the road guys!" Everyone goes out to the car to head back to the house we get in the front door and I am back to my computer. A little over three years ago I received my MacBook as a birthday present along with my special software. I loved the fact that I could now use a computer independently. I also run my own website where you can find out more about me cerebral palsy and see some of my original works such as short films stories and pieces of artwork. I go to the updates section of my site and start posting a new story this one is about how I think others see me in society. I start creating this post and I finally hit the "publish" button. We're leaving on Thursday to head back to Iowa but we're coming back next summer. Caleb comes in and says "Let's go swimming'' "o-k-a-y" I reply he takes my swimsuit out and changes me into it. He lifts me into my wheelchair and says "I'm glad you're going to see Dr. Silverstein on Friday to get your new chair because this is getting small". He pushes me out to the pool and lowers me into it. He does a couple of laps around and then throws a tennis ball at Jewel and says "fetch it, boy" Jewel takes off and quickly comes back fetch is his favorite game he'll play it for hours on end. Caleb notices that I'm getting cold and decides to take me out of the pool. He dries me off and takes me inside he gets me changed. He glances at the clock on the wall and says "4:00 you're due for a feeding Ryan". He takes a can of liquid and does the typical routine. My grandfather comes in and says "we're going out for supper tonight" everyone piles up into the van and we head out to a fancy pizza place and everyone eats dinner while I just sit in my wheelchair. Although I may appear lifeless there is plenty going on inside of me. Everybody is already eating ice cream and I feel very drowsy that is because of my medication that is used to help relax my body so sometimes I'm asleep when everybody else is awake. I drift off and Caleb shakes me to wake me up "come on Ryan it's time to head home" he says

He pushes me out to the car and he says "you seem incredibly tired Ryan I think I'll shower you and you can watch television we don't have to watch the movie that the rest of the family's going to watch". He lifts me up into my car seat I think that Caleb is as strong as a wrestler. He buckles me in and climbs over and sits in the seat next to me ''are you excited about going to the clinic to receive your new chair''? he asks "y-e-s'' I say flashing a giant grin. Two weeks ago I went to the clinic at ICH to choose my new chair the person in charge of all of my equipment is Dr. Max Silverstein everyone else comes into the car and my grandpa drives when I start having spasms "are you okay Ryan"? Caleb asks "y-e-s" I reply. We pull in the driveway and Caleb unfolds my chair and gets my seat attachments off. He lifts me into my chair and pushes me up the ramp and we go to our room. He showers me and gets me in my pajamas. He turns on the TV and reads a book while I watch an Animal Planet special. After about an hour he says "time to get some shut eye Ryan" he tucks me in and puts me in my splints the splints prevent my hands and feet from moving involuntarily the only part of my body I can move on my own is my head and I can blink. At 4:00 Caleb wakes me up and does my normal morning routine. Everything I brought is already packed in my backpack. Caleb brings me to the kitchen table and makes himself some eggs along with a glass of apple juice. He eats his breakfast while I just stare into space. After he finishes his breakfast he says "Ryan do you want to get on the floor?" "ye-s" I say he lifts me up and puts me on the floor. Jewel curls up right next to me and gives me some kisses Caleb is reading a book as I try to roll over. "Ryan you want to change positions"? Caleb asks "y-e-s" I say he puts me on my stomach he gives me my iPad and says "that better Ryan?" "o-k-a-y" I say. It is now two weeks before my senior year begins I'm very excited! It has been a wonderful summer vacation filled with lots of new activities like visiting the science museum and receiving my very first gait trainer. I must say I love school so I can't wait to return.





Everybody else comes down the steps and I start coughing and Caleb says "I think it's time for you to be suctioned Ryan" He comes on the floor and suctions me and then all of the sudden Caleb starts hearing a quiet humming noise which is coming from the suction machine. He picks me up and says "I think I should put on your braces now". He picks up my AFOS that have the planets all over them. He puts my braces on and he says "okay now what"? "All of the suitcases are in the car” my father says and Caleb pushes me out the door and gets me in the car and all of the family takes off for the airport. We go through what seems like the longest security check ever and then we board the plane. I fall asleep because I don't know what else to do. We land and then take a bus back to our house. It feels really good to be back home but I had a lot of fun in Florida. Caleb lifts me into my wheelchair and puts his key in the lock to let us in the house my brother puts me on the couch and takes out the jar of peanut butter to put it in Jewel's KONG. I can smell the peanut butter it smells so good. Jewel grabs a hold of his toy and sucks the filling out of it like a vacuum takes up dirt. I start having spasms but Caleb holds me down.

My mother and father come in the door with the suitcases and set them down on the bed. Caleb glances at his watch and says "You're due for a feeding Ryan'' he says he connects all the tubes and takes the can and puts it in. I am starring at my computer screen watching a movie about baseball. Caleb says "want to go outside Ryan?'' ''s-u-r-e'' I say he wheels me to the front door as the wind howls and I shiver. He takes his book out and sits in the chair and reads while my legs move involuntarily ''I forgot to strap your feet in'' Caleb says he leans over and straps my feet in.



I stare at the sky and it looks like it's going to rain any second now. Caleb hears a clap of thunder and slowly raindrops begin to fall. He brings me back inside but not before I am soaked from head to toe. Jewel is at the foot of my bed whining "quiet Jewel'' Caleb exclaims. He unbuckles me and places me on my hospital bed. Jewel licks me and I begin to smile. Caleb puts his hand on my back and helps me sit up I start drooling and Caleb wipes me. He lets me fall back onto the bed. He says "I'm going to get you changed because it's 7:00" he takes my pajamas and gets them on me. He puts on the TV and says "you may watch a 20 minute show then it is time for bed" he turns on the TV and lets me watch the sports highlights. I fall asleep and he does my feeding process and puts my splints on. At 4:00 he wakes me up and does my normal morning routine. I'm in my chair and I watch TV while my brother eats breakfast. Caleb finishes his breakfast and takes me out for my morning walk. My brother decides to stop at the drugstore to pick up my medication and then we go back home. My dog makes a beeline for the backyard and grabs his favorite tennis ball and plays a few rounds of fetch. He comes in and says "it's time to go to the clinic Ryan" he says he puts me in the car seat and gets in the driver seat and takes off I am so quiet in the backseat that Caleb says "are you okay sport?! "y-e-s" I reply I'm just staring out the window. We arrive at ICH and enter the front door and we head for the wheelchair clinic Dr. Sliverstein is out in the lobby and says "Ryan's new chair is in clinic room number four". Caleb takes me to the room and there is new glittering black wheelchairCaleb carries me over to the new chair and straps me in "do you like it Ryan"? Caleb asks I blink "he likes it" Caleb tells Dr. Silverstein “He looks wonderful in it" Dr. Silverstein comments. Caleb fills out some paperwork and then we go back home. Caleb takes both of my chairs and puts them in the trunk he puts me in the car and we head home. I am nodding off and my brother wakes me up when we arrive home. He takes me out of the car and wheels me inside. He puts me on my bed while he goes to make some lunch. He eats his lunch while I lay in bed. Caleb comes in and says "I'm going to put you in the walker" He lifts me up and puts me in the walker and says "come on Ryan you can do it" one by one I take steps toward my brother after I run around and my brother says "you're going to sleep well tonight". My brother looks at the clock and says "6:40 I'd better get my uniform on" he goes to his closet and gets his uniform on and then lifts me in my chair and brings me to the car. We drive to his martial arts school and he takes me out of the car he goes in the foyer and slips off his sneakers and everybody salutes him "Sah Bum Caleb" Sah Bum James says. "Where's Sah Bum Nim?" Caleb asks "He's at his other school" James answers They bow everyone in and do the typical warm-ups. "Everybody go put your sparring gear on" James says my brother opens his backpack and takes out all of his gear and puts it on. James and Caleb fight twice and they stop. Everyone else sparred at least four times. James asks "Caleb did you bring your weapons"? "yes sir" Caleb replies he takes his bo staff and nunchakus out of his backpack. The two black belts do a weapons demonstration I'm amazed at what the two of them can do. James says "rest" in Korean and my brother takes a big gulp of water from his water bottle. Then all of the students do some World Tae Kwon Do Federation drills. They look extremely difficult but my brother does them anyway. He'll do pretty much anything my parents ask him to so I think that's just part of him. The students close class and then my brother gets changed while I chat with James he tells me all about a new RPG he received. My brother comes out and takes me out to the car and lifts me into the seat. We go home and he makes himself a bowl of chicken noodle soup and a tuna sandwich for his dinner. After he finishes every last bite of his sandwich he takes a shower and then gets me dressed. He does my normal routine and I fall asleep. He wakes me up at 4 AM does everything he normally does when he hears the phone ring it's my father he says that he'll be home soon.

Caleb makes himself some breakfast while I'm in the living room. After he takes a shower and does some exercises with me. Then he lifts me in my chair and asks "want to play a game on your computer Ryan"? "y-e-s" I say he gets my computer out I use my head switch to navigate to my games and I choose checkers and I beat Caleb all three games. "No fair I want a rematch" Caleb says I smile and say "o-k-ay" again I beat him all games! "man you're good" Caleb says. He glances at his watch "it's that time Ryan you're due for a feeding" he does the routine. We go to the school supply store to get some other supplies He gets me a new notebook for Luke to write notes in and he gets me a pack of ballpoint pens. We go home and he puts my name on my notebook. My father walks in the door and hugs my brother and he walks up to his room to go to bed. My brother looks at the clock and says "2:00 plenty of time till martial arts" my brother is testing for his third dan this evening he's testing at 4:30. The head instructor is a fifth dan and Caleb's friend James is a first dan. Caleb makes himself a bowl of macaroni and cheese along with a fruit salad. Once he finishes that up he goes in his room and for the next hour he practices his material everything from forms to weapons to endurance.

He comes out of his room around 3:00 and he is dripping with sweat. He showers and then gets on his dobok and black belt. "I'm excited" he says grabbing his lunch bag from the refrigerator and making himself a peanut butter sandwich along with a granola bar and a yogurt everything he has packed in that lunchbox is going to be his dinner because he'll be testing for the next three hours and then some. He fills his water bottle to the brim and puts the lid on that. "Let’s go" Caleb says excitedly. He puts me in the car and takes off. We arrive at the academy and he removes his sneakers he bows and Sah Bum Nim says "good to see you sir" James says "good to see you Caleb and I see you brought your trusty sidekick with you". Caleb parks me over on the sidelines so I can see all of the action. "We don't have any time to waste" Sah Bum Nim says they first begin with kicks Caleb must've done thirty kicks on each leg. Then they do sparring. And then they do forms and James says "you can eat and drink now" Caleb sits on the chair and takes out his dinner and takes a big bite out of his sandwich then he eats his granola bar and yogurt. He throws away his rubbish and James says "time for the endurance test" "100 sit-ups and push-ups" "yes sir" Caleb replies he does them in about fifteen minutes. It's now 6:30 and I have another 90 minutes to wait he says "may I suction Ryan"? "Yes" James says he comes and suctions me and says "that better sport"? I nod he goes back in line and this portion is an oral test where he must recite all of the Korean terminology perfectly that takes about ten minutes. Lastly he breaks a thick board. "Caleb Samuel Collins it's my pleasure to promote you to third dan" he gives him his new belt and he puts it on. He shakes the master's hand and shakes James's hand ''congratulations man'' James says James takes a picture of Caleb with his new belt.

We head home and Caleb gets me into bed. ''g-o-o-d w-o-r-k'' I say ''thanks Ryan’’ he says. He tucks me in and puts my splints on and gets all the tubes ready for my overnight feeding. He kisses me goodnight and gets into bed. Bright and early my brother shakes me violently to wake me up. ''come on get up already"' he says he finally picks me up and forces me out of bed. He showers me and dresses me. He says ''I am going to put you in your stander'' he says he lifts me up and straps everything in. He is reading an article on sports related injuries and enjoying a mountain of warm and fluffy buttermilk pancakes topped off with a smiley face made out of chocolate chips. Unlike the rest of my family Caleb only consumes sweets and sugary treats about once each month where the rest of my family probably drinks about one caffeinated beverage a day. He has never had much of a sweet tooth, when he was little if my family was going out for ice cream he would refuse to eat ice cream my grandpa has always said "wow I've never seen a child pass up a hot fudge sundae!'' I'm lucky if I can snatch a bite of someone's ice cream cone. He does the dishes and gets me out of my stander and I lie on my side and my legs move.

My brother lifts me up into my chair and I fuss as if to say "can I get out of this thing"! Caleb seems to read my mind and says "you can't Ryan maybe later" He goes and makes my bed. He connects my AAC device and I go to the ECU function and use the TV function to change the channel. My brother comes out and says ‘‘Ryan you need to use your walker for at least fifteen minutes a day'' He takes me out of my chair and transfers me to the walker. I give him the ''evil eye'' and he says ''I know you don't like this sport but we have to do it after I'll play chess with you'' I run around and chase Jewel around the house. After about forty minutes he says "you've worked hard enough man". Like almost everything else in my life simple tasks are difficult for a teenager with cerebral palsy. Caleb lifts me out while I have spasms. He takes me to my room and I use my special computer to play chess with him. I have always liked board games but my favorite is chess because I'm really good at it. I beat Caleb two out of three games. After we finish playing chess Caleb decides to make himself something to eat because it is just about lunchtime.

While he eats his sandwich I am checking my e-mail and see that my friend Adam has replied to the message I sent him ten days ago. He says "I hope you're having fun in Florida". "I am not looking forward to going back to school". "Tell everyone I said hello". Sincerely, Adam Baker. I reply and write "I had lots of fun I am looking forward to twelfth grade.” I highlight the send button and double hit my head switch. Caleb finishes his cream cheese and jelly sandwich and does the dishes and picks me up off the floor. He puts me back in my wheelchair and Jewel licks him which means he needs to relieve himself and he says ‘’I am going to take your dog out because I think he needs to use the bathroom you okay here’’? I blink and Caleb attaches Jewel’s leash to his collar and Jewel drags my brother down the front steps and out the front door.

Five minutes later my brother comes inside and Jewel jumps into my lap. ‘’2:30’’ Caleb says to nobody in particular. I feel as if I’ve run a marathon when I really haven’t done anything at all. I fall asleep and I feel Caleb shaking me ‘’W-h-a-t t-m-e i-s i-t?’’ I mutter ‘’4:30 my brother says I woke you up because the alarm for your feeding went off’’. Caleb lifts me up and says ‘’what do you want to do now’’? I mull it over and finally say ‘’p-l-a-y c-h-e-s-s’’ ‘’okay’’ he says. He walks over to my wheelchair and takes my device off of its mount and brings it over. He brings my switch over and says ‘’now you can go to the games menu’’. I go to the games menu while Caleb says ‘’this place looks whiter than snow’’ my room is white but I’d like to get it painted soon it is in dire need of a fresh new look so I’ve spent the last couple of months deciding what new decorations I should put up maybe some extreme sports décor since I love the X- Games.

When I was younger I wanted a bike but my mom said ‘’well Ryan how would you ride one you can’t use your hands’’. I only wanted one because all of the other children my age seemed to have one. I have always wanted to fit in but it has always been a struggle. I remember when I was little all of the kids would get invited to parties except for me. I think that it was because of my physical disability most kids don’t know how to interact with me but I’m no different than any other teenager other than the fact that I have cerebral palsy. My brother and I are playing chess and once again I beat him all three games in a row! Caleb glances at his watch and says ‘’gosh, I didn’t know it was that late it’s almost 6:00 I should go fix myself something to eat’’.

He hurries into the kitchen and heats up some spaghetti and meatballs from the night before. He gets his dobok on and heads out and grabs me and puts me in my chair and we head to the academy. James is standing in the doorway and my brother asks “Where’s Sah Bum Nim’’? ‘’He is sick’’ James replies. They spent the whole hour focusing on forms and one-steps. After half an hour Caleb comes over to check on me ‘’are you doing okay’’? He asks taking a moment to catch his breath ‘’y-e-a-h’’ I reply He takes a big drink and then he gets back in line. He does basic form III with the younger students. I hear him yell on the third punch which you are supposed to do. He is very quiet and soft-spoken most of the time but once he’s at ATA school #1270 he changes from quiet to very loud. He does his bo staff form and that is my favorite because it looks wonderful. When he was ten he had just achieved first dan and head master Eric had just given Caleb his first bo staff and he went to spin around and almost made a dent in the wall! Since then he’s gotten much better at his weapons. Once they close class he drives home and does my typical nighttime routine. Then I go right to bed because I am exhausted. Caleb wakes me up and does my typical routine. ‘’you’re nothing but dead weight man’’ he says while he lifts me out of bed and into my wheelchair. My machines make a rapid whirring noise which means critical ‘’just what I needed’’ Caleb mutters he walks over to my wheelchair and shuts off my monitor ‘’your vitals are okay your oxygen is a bit low’’ he says. He walks into the kitchen and takes out a fresh box of Lucky Charms and comes and eats his cereal. After he cleans up and I start coughing "good job Ryan" Caleb says the reason he said that is because it's very hard for me to cough indpendently as a result I use a machine known as a cough assist to help with that. I have various machines that keep me happy, heathy, and out of the hospital! I have been hospitalized at least two dozen times. The first time being when I was ten weeks old because of an infection that resulted in a fever that led to me having cerebral palsy. My brother says "Ryan you're drooling like crazy" he takes my cloth off and replaces it with a cloth that's clean. I also suffer from epilepsy and I have as many as ten seizures a day and increased secretions can mean I'm having seizures. I sit and my head drops and Caleb says "great Ryan more work for me" he says laughing. I do know for a fact that Caleb would do anything for me and I'd do anything for him. He's more of a father than a brother although I love my parents a lot. Caleb asks "you want to play Xbox"? I blink and he puts the controller into my lap and he is doing hand over hand motion while playing NBA 2K11 and I'm loosing to my brother "r-e-m-a-t-c-h?! I say laughing "not right now" he says. I cannot wait till the rematch because I am certain I'll beat him that time.



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