All Reports

Achieving Goals

by Christina Mills

This month I managed to catch up with retired 1996 Paraolymic athlete Eric Nitzel from San Diego California. Eric has been a long time track and road racing athlete in his community for many years and when I finally caught up to him this is what he had to say.

Q: How old were you when you first began your track and road racing athletic career?
A: I first began my track career when I was thirteen years old and shortly after that was when I began to get involved in road racing.

Q: What inspired you to get involved in just track and road racing?
A: I chose to get involved with the whole racing thing because I enjoyed the adrenaline of racing and really like the speed of the whole sport.

Q: What track and road racing teams have you trained with?
A: First I started with the San Diego Road Runners team, but then got involved with other team during the same time. I was on Team Shadow, Team Fortress, Team Cannodiale. I also trained by myself daily.

Q: How often were you training before you made it to the Paraolympics vs. When you actually made the Paraolymic team?
A: When I first began doing the sport I started training 10 – 15 miles a day five to six days a week, but after I knew I made it onto the Paraolymic team I started training 20 – 25 miles six days a week.

Q: When you first began sports did you have a goal in mind of what you wanted to do as a disabled athlete?
A: I had two goals, my first goal was short-term one that was to win each and every road race I competed in. Long- term I knew I eventually wanted to make the Paraolympic team

Q: What has been your highest achievement as an athlete with spina bifida?
A: I would have to say winning third place in the Boston Marathon would have to be one of my highest achievements besides making it to the Paraolympics because of the level of competition that is involved in that race.

Q: At the 1996 Paraolympics, what events did you compete in?
A: I was in the one, two, four, and eight hundred meter races. I was also in a couple relays with some friends of mine that had also made the Paraolymic team.

Q: I know that while you were racing you were sponsored by wheelchair manufacturing company, Quickie, how did that happen for you?
A: After racing for a couple of years and getting to know the sport, I got to know many people and by that point it was word of mouth that got my name out to the public. Soon enough I was getting phone calls from Quickie.

Q: If you could do it all over gain what would would you do differently, if anything?
A: I would train much harder for starters and would have pushed a lot more miles.

Q: Final question, What advice would you give to an aspiring disabled athlete that is looking into being as successful as yourself?
A: If you want to be an athlete the first piece of advice I’d give is to be dedicated do whatever sport it is you do. Secondly, stay focused on what you plan to get accomplished and make sure you treat your body well with what you eat and what other activities you choose to get yourself involved in. Stay true to yourself.

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Report from AMCHP

by Janell Wells

On Saturday, March 4 through Tuesday, March 7, I participated in the AMCHP [Association of Maternal and Child Health Programs) Conference. I was asked to give a speech on transitioning from pediatric to adult health care services.

I went with my mom and we got there on Saturday and I went to register. This was in a huge hotel like I had never seen before. I went down to register and it seemed like there was millions of people. I had asked mom if that was all that was going to be here and she said no that there where about 200 more missing. At first I felt like a little ant. All those grown ups and one kid. I mean there where other kids there but not teenagers. Most of them where younger kids that where 6 and 7 years old. But then I met allot of people while I was there. Some were my moms friends but some were just friendly and wanted to learn more about our point of view.

I gave my speech on Sunday to a full room of more than 100 people, many people were standing up. I was the only teen on the speaking panel. I was nervous at first but then it got to me and I just relaxed and went through it. Other people on the panel where really nice to me, Josie Woll (parent leader from Hawaii) who presented after me included me in her speech using what I had just said as examples.

When I was done and the meeting was all over, many of the people walked up and was said what a great job I did and how well I knew this topic and how proud my mom must be of me. For the rest of the conference I couldn’t walk around in the hotel and have some one not stop me and say what a great job I did on my speech. I really liked that because its not everyday that you get to give a speech that will help more generations of teens to come behind us. By giving that speech I helped more then 100 people understand what it was like to go through transitioning.

Many of the parents asked me questions like, what age do you think I should start talking with my kid about what he or she is going to go through when he or she transitions into the adult heath care. It felt really good to know that I helped them understand what its like from a teens point of view not from and adult going through a teen to tell the story.

And that’s why others need to do the same thing. It is hard at first, but afterwards you are thinking about the next time and what you would say or do different to help them understand even more.

AMCHP is a large organization that works very heard on national and state program and policies that impact women, children and families in key public health issues. Janell was invited to speak as a representatives of young people with special health care needs “transitioning” out of high school and into work or school.

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How To Be On A Conference Call

by Katie Beckett

Being asked to be on a conference call for the first time is really intimidating for a lot of people. Will you call the right number? What should you say? Will you say something stupid? Will people criticize you? I will try to guide you step by step on how to make your first conference call as painless as possible.

When you are first asked to be on a call get the name and telephone number of the person hosting that call and their assistant’s name and number if they have one. Be sure to ask if the conference call is a free call and if not who is going to pay for it (and how!). Write down the conference call number and the pin number needed for the call right by your phone or in another place where you can easily find it

Call the morning of the phone call the contact person you have been given to make sure the call is taking place and check the number and pin number you have been given.

Be on the call at least five minutes early because that way you will not be late. Introduce yourself and ask how people are doing. There should be a moderator of the call who might set some ground rules for the call. Some ground rules you might set for yourself are:

  • Say your name before speaking – the more people on the call the harder it is to keep track of voices – if you say your name before you speak this helps the moderator and everyone else a great deal.
  • Be conscious of how much you speak – make sure you are not dominating the conversation. If you notice that people aren’t talking ask them what they think – the moderator should do this but it never hurts to help.
  • Don’t be afraid to ask questions someone might have the same question.
  • If you are late apologize to the group.
  • Say goodbye before you hang up (not a rule set in stone but some people think it’s rude if you don’t)
  • Don’t be bashful about your ideas if they didn’t want them they wouldn’t have asked you to be on the call.

A follow up call later in the day or the day after to the moderator is helpful because then you can share how you think the call went and other ideas you might have thought of.

I hope this has taken the scare out of the conference call process. The only other advice I can give is have fun.

If you have additional tips you would like to share, send them to
info@fvkasa.org. Feel free to distribute widely, with attribution. Thanks.

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Children with Disabilities Deserve Equality

by Christina Mills

Playing with peers and meeting your first childhood friend often comes from that weekend trip to the playground at the park, but what happens when you’re a child that uses a wheelchair or you’re a parent with a child that uses a wheelchair? Up until recently there was nothing universally accessible about playground. Instead, children with disabilities were forced to watch their peers because of the inaccessibility.

“As a child I can remember my Mom always having a hard time explaining why I couldn’t play on the playground with my peers, eventually we just stopped going there,” says Megan Brooks, a college student born with cerebral palsy.

“As if facing the beach inaccessibility wasn’t bad enough, there was just one thing after another that I was not able to demonstrate my abilities at,” explains Brooks.

Watching the kool-aid smiles on children’s faces as they raced down the slide or built sandcastle was not only difficult, but also one of the first times Brooks can remember feeling like she was different from the rest of the children. “Children with disabilities have the right to equality!” says Maria Garcia, a High School student who has been faced with accessibility challenges most of her life. Children with disabilities are faced with the same struggles everyday.

Here in San Diego County we’re working to eliminate the number of children feeling unempowered by inaccessibility. The City of Escondido City Council just last month decided to be the first in the northern part of the County to build a “Boundless Playground”. The location of the Boundless Playground will be located at Kit Carson Park.

Boundless Playgrounds were first thought of by a Connecticut couple who had not only seen a young wheelchair user in a local park staring at the other children while playing, but also because they had a son that past away due to Spinal Muscular Atrophy.

What began, as inspiration was soon a reality. The first, Boundless Playground was completed in 1996 and was named “Jonathon’s Dream”, after the couple’s son. Since then, Boundless Playgrounds have been the ways of our future. As the disabled community continues to advocate for equality, not only will Boundless Playgrounds be universally accessible, but so will our society as a whole community.

For further information on Boundless Playgrounds please go to, www.boundlessplaygrounds.org .

If you have questions concerning the up and coming Boundless Playground in The City of Escondido you can contact, Joyce Materson of The City of Escondido Americans with Disabilities team at (760) 839-4621.

 

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Dreaming About Driving
By Jennifer Thomas

  I have always imagined myself riding through Montgomery, Alabama on I-65 in my very own Alero Oldsmobile. Luther Vandross’s Superstar is playing on the radio. All of the windows are down, and my hair is blowing in the wind under the summer night’s sky. Fortunately, I do not have to dream any longer; I am an official licensed driver!
            Just like any other 16-year-old, I wanted to drive more than anything. While in high school and before turning 16, I took Driver Education as an elective and learned the rules of the road. My teacher was the first person who had enough faith to let me drive. She accommodated me by placing a cushion behind my back since the seats didn’t go up far enough. She also operated the emergency brake and cranked the car. The fact that I took and passed this class and got my permit was enough to convince a few other people to help me practice driving.
            My aunt Diane was one of those people. She rode shotgun as I drove her blue Corsica on several occasions. I also practiced with my father from time-to-time. Once when he came to visit, he rented an Alero Oldsmobile and let me practice driving in it. We learned that I could operate everything in this car on my own. I was able to start the engine, change gears, and apply the emergency brake. “Alero, here I come,” I thought. This was the car I wanted.
            Shortly after I turned 16 and had become a better driver, my father rented an Alero and came to town to take me to get my driver license. While waiting at the DMV, I was so excited. When it was my turn, my dad drove the car around, and I went out to meet him. We waited for a while. Finally two state troopers, one male and one female, came out, and both of them got into the car with me. My excitement turned into nervousness. The female trooper, seated in the front passenger seat said, “At the end of the drive, make a left.” I proceeded with caution. I did my very best to follow all of her commands. When we returned, the female trooper asked me to come inside and have a seat, and she went to another part of the building. This was odd; everyone else found out whether or not they passed while still in the car. The trooper came back with another gentleman, and they asked my father and me to come outside. I knew then that there was definitely a problem. The female trooper told me that my three-point turns and other driving skills were great. She further explained that they could not give me my license because my vehicle had to “have equipment on it and be modified.”  I was outraged but I managed to contain myself as I asked her what modifications I would need. She was unable to answer my question. She was also unable to tell me whom to contact about getting these modifications.
            After being highly upset, wanting to sue somebody, and crying many tears, I contacted my Vocational Rehabilitation (VR) Counselor. She connected me to the Adaptive Driving Program and arranged a driving evaluation. My mother, father, and I drove a little over an hour north to Birmingham for the evaluation. The results were that I needed a minivan that was no more than four years old. This is what the equipment had to be installed in. I had two problems with this. First I was not a soccer mom and did not want to drive around in a van. Secondly, there was no way I could afford a car this new. I asked if there were any other options. The other options that I was offered were that I could either get a Lincoln Towncar or a Grand Marquis. “I am four feet, 10 inches tall. Are you serious?” I thought. I was upset all over again.
            Eventually I calmed down and partially accepted the news. During my 12th grade year of school, I took part in co-op; I was in school for half of the school day and at work the other half. I was having a really hard time. I had to dish out gas money to whomever I could get to take me to work. Before long I was working just to be able to afford to get there. One of the teachers heard about it. She made some contacts and asked the other teachers to donate money to United Way on my behalf. Even with their support, I was still unable to make payments on such a new vehicle.
            I went on to college and had no choice but to rely on the para transit system and friends for four years. I was thankful, but relying on the bus was definitely not the easiest thing I have ever had to do. It was late quite often and sometimes didn’t show up at all. I practically had to call everyday to schedule appointments for the next week. I had to ride the bus from home to school, from school to work, and from work to home.
About a year and a half to two years after graduating college, I had a full-time teaching job and felt stable enough to take on car payments. I called my VR Counselor and let her know that I was ready to get the process started. I also contacted the United Way to see if the money that the teachers from my high school had donated was still available. Fortunately it was, and I was able to use it as a down payment on a new car.
            The process that it took to get my car modified was quite lengthy, but it was so worth it. I had to be re-evaluated and found out that the equipment that was suggested for me could now be placed on an SUV. Yes! When my counselor received approval to cover my modifications, I contacted the United Way again. The United Way cut the check for my down payment, and I went to get my car. On June 26, 2006, my uncle and my mother accompanied me to the dealership to give me advice as I asked for it. I asked questions and completed all of the paperwork. Since I did not have a license, my mother drove my Hyundai Santa Fe off the lot, but I rode shotgun.
            In November of 2006, I received a call from a gentleman in Wetumpka, Alabama saying he would be the person handling the modification process of my vehicle. He explained that I would need to bring my vehicle to his shop in Wetumpka, and he was going to personally take it to Texas. He said that it would be there for about six weeks. At that point, he would pick up my vehicle and return it to his shop in Wetumpka. His company would then finish the modifications. When that was all done, he said he would call me in for a fitting, and we would take it from there. My dream was becoming more real as the weeks went by. I was finally getting there!
            At the very start of January, I got a call from Wetumpka. The lady on the other line was calling to inform me that my car was back, and that it was time for me to come in for a fitting. I went for the fitting, and all of the adjustments were made. In mid January, my family and I made the 30-minute, or less, drive to Wetumpka. We were given a crash course on how everything worked and were told to call if there were any problems. I was also advised to get in it and practice with the controls as much as possible.
            I did just what the people in Wetumpka told me to do. I played with the controls and eventually got brave enough to drive around the neighborhood. Time went on, and I was beginning to wonder if I was ever going to have any official training and how I need to go about getting my driver license. I contacted my VR Counselor to express my concerns, and she contacted the Adaptive Driving Program. The trainer/evaluator came to my area a few times during the month of June. I had the opportunity to get more practice in, and he gave me several driving tips. On June 21, 2007, I was awarded my driver license.
Yes! I don’t have to dream about driving anymore! I can come and go when I’m ready, just as long as I have gas that is. I don’t have to worry as much about being late, and I don’t have to give three to four people gas money during the course of a week. So maybe it all worked out a little differently from how I dreamed. I have a Santa Fe instead of an Alero, and I am not fully comfortable driving on I-65 just yet; however I am driving, comfortably on I-85, and Luther Vandross’s Superstar does play on my radio. Most important of all, I don’t have to dream anymore: I just drive.

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All About Erin: Diabetes? Not Me!

by Erin

Hi! My name is Erin. I am currently a fifteen year old sophomore in high school. I have dealt with Diabetes for nearly four years and Chronic Fatigue Syndrome for nearly a year now also. Writing is my passion and I am happy to hold writing positions at both FVKASA.org and DisabilityCentral.com’s ActivTeen Ezine. Besides writing, I also love volunteering at my church, hanging out with my friends, reading my Bible, listening to music, and creating web pages. I hope to major in Journalism and minor in Sociology in college and eventually freelance for a living eventually.

I can remember the day almost perfectly. After eating a chocolate-frosted doughnut for breakfast as bright morning sunlight danced on the table on the morning of September 16th, 1998, I had trudged to my room to get dressed. It was one of the first days off of school in my junior high career and luck would have it that I would have an eye appointment that day also. Squinting as I walked out the door, I jumped into the car and prepared myself for the short drive to my “eye doctor”. It was just another day of feeling dumpy, sick, and down (or so I thought).

Truth be told, I had been more than a little “off” for more than a few months. After getting new glasses just the month before to correct my eyesight to near perfect, I was again in need of a stronger prescription. For months I had been wavering between stuffing my face and loosing my appetite, all while maintaining a weight of about sixty-some pounds at age twelve. My school days were a blur of passing periods and heavy gulping at the water fountains, only to come home in the afternoon to glass after glass of pop, water, and milk. My emotions were heaving from the adjustment to junior high and I often joked with my mom about my new “best-friend”, the water fountain. My grandparents lived in a house right behind our family at the time. Both, having Type-Two Diabetes, had always nagged on me about eating my infamous “sugar and strawberries”. “Eat too much of that and you’ll be Diabetic before you know it!” my grandma would always scold me. Disregarding the comment, my parents were concerned about my weight and new-found love for all things liquid. Diabetes had crossed my mom’s mind several times after realizing I couldn’t read the menus at Subway from a short distance away. Both of my parents had fought to test my blood sugar with my grandparent’s meter several mornings in a row, only to loose the battle to a kicking, screaming me. I didn’t have Diabetes. I couldn’t. I didn’t even really know what the disease entailed . . . but whatever it was, I wasn’t old and I certainly wasn’t overweight. Besides, needles weren’t my style.

The day would turn out to prove me wrong. That evening I sat disheveled, dizzy, and confused on the couch. The whole day had been an unreal nightmare, and I was pretty sure if I pinched myself hard enough I’d wake up as I had from the nightmares that had been haunting me for awhile. After taking a look at the drastic change in my eyesight, my Ophthalmologist had suggested that I arrange for a test for Diabetes that day. He offered his own aged, metal glucose monitor for me to test my sugar with. I decided to pass. Frankly, I was upset at the man. His dry sense of humor always annoyed me and here he was shipping me off for a doctor to poke and prod at me. Coming home, I had sat on the couch and bawled while my mom made an arrangement for some tests at the doctor. I just didn’t feel right and I was purely sick of it. About fifteen minutes later, I was in the car for yet another drive to my doctor’s office. The tests were a blur. I know I ended up giving a urine sample and I’m pretty sure they drew some blood for tests. My regular doctor was out of town, but several minutes later another doctor on call came in and delivered the news. I had Diabetes. At the sound of the word tears began to stream from my face and everyone seemed to be in a rush. “Stop crying. This isn’t a disease for wimps . . .” the doctor stated. She informed my mom to take me out for lunch and to report to the University of Nebraska Medical Center’s Pediatric Endocrinology unit at five in the evening.

My parents had dealt with my grandparent’s diabetes for several years by this time. Type Two Diabetes, which my grandparents had, is in many cases a lot more passive. In short, my parents and I really had no clue what we were dealing with. Off my mom, sister, and I drove to a pizza restaurant where I ordered (get this) a large Sprite (not the diet kind, mind you) and a piece of broccoli pizza. I barely nibbled on the pizza but I drank several refills of the Sprite. Later in the evening my mom, dad, and I ended up at the clinic on time only to be hounded by questions and instructions. It took several doctors and nurses to hold me down as the endocrinologist inspected me and gave me my first shot of insulin. My blood sugar when I arrive at the clinic? An astonishing 600 that more than warranted a diagnosis of Type One (often called Juvenile) Diabetes. After being instructed to eat dinner fairly quickly and report back the next morning, my dad and I visited Fazoli’s and devoured spaghetti plates before heading home. Or, should I say, I devoured my plate, half of his, and countless breadsticks. My appetite was finally back and I was feeling as if a weight had been lifted from my shoulders. Feeling more normal than I had in months, “I’ll never get Type Two Diabetes now!” I exclaimed. My energy had been restored. By the end of the night, however, my whole family was home reeling at the news while I sunk into my dizzying first low blood sugar. Life was a seemingly uncontrollable roller coaster.

It’s been almost four years living with diabetes now. Since then I’ve acquired Chronic Fatigue Syndrome, probably due to a bout of Mono mixed with my suppressed immune system from Diabetes. Four years ago I could have never picture being where I am now. I simply couldn’t see past my disability as I attempted to hurdle obstacles that I’d never been confronted with before.

My challenges haven’t all been strictly health related, however. Besides battling the strange but frequent “Why are you pricking yourself?” and “Are your toes going to fall off?”, I have surprisingly had more trouble with adults than with people my age. Although school is currently going quasi-smoothly, I have had problems in both my junior high and high schools regarding absences due to illness, awareness, and the ability to test my blood sugar in the class room.

According to our school district’s policy, blood sugar testing is only allowed in the nurses office (although I was allowed to test in class in eighth grade, an issue the junior high now denies). I have had extremely negligent teachers make rude comments, question my need to test my blood sugar, and even threaten to send me to the principal’s office due to it. Through all this I’ve had both the junior high and high school call meetings regarding these issues. I have had to “do my research” as they say in defending myself with my rights under the ADA and the law. This information has helped me in both personal confrontations and the meetings the schools have called.

My battles with disabilities have been numerous, but I’m happy to say the situation is getting better every day. I will be a junior in high school in the Fall and will be involved in backstage drama and honors academic decathlon. I currently enjoy writing for both FVKASA.org and DisabilityCentral.com’s ActivTeen Ezine. It’s wonderful to finally be in a position where I have some knowledge to share about disabilities. I hope to major in Journalism and minor in Sociology in college.

Life is a journey, and if I could somehow turn back the hands of time and erase my disabilities, I wouldn’t. Along with the heartache and trouble have come a lot of good experiences, relationships, and situations. In the end, I believe dealing with Diabetes actually makes life a little sweeter. I’ve finally found the silver lining in the cloud that loomed over my head for such a long time. I hope to help others find their silver lining also.

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Going To the Genetic Alliance Conference

by Liz MacDonald

In July (2003), I went to a Genetic Alliance Conference. It was held in Arlington, VA. This was a three day conference that they had. I was very interested in the conference. This was because there were kids with disabilities there.

The reason why I was asked to go to the conference was because Genetic Alliance wanted to speak to the children about KASA. They also wanted me to tell the kids who were there and the parents who were there at the meeting how I advocate for myself.

The kids spoke mostly about their accommodations in their schools. These kids didn’t have physical disabilities, such as being in a wheelchair or not being able to walk. It wasn’t like if you saw them on the street you could tell that they looked different and had a disability. They mostly had a disease that could not be cured.

The kids also had an IEP that they talked about. This meant that they would have accommodations made for them for school, such as getting extra time to finish Tests and Quizzes that they did not get done in class or out of the class in that period. I know this because they talked about it when I spoke at my presentation.

There was a special part in the conference for the youth. We met and we talked about ourselves. We also had our own special dinner meeting with pizza. During the conference large group sessions most of the youth sat together.

I had to do some advocating for myself while I was at his conference. This was because the room that we had ordered was not big enough for my electric wheelchair. So this meant that we had to ask the manager if he had any more assessable rooms left that had room for my electric wheelchair to move around. It just so happens that there was one left.

I enjoyed this conference so much. This was because I got to learn about what Genetic Alliance was about and to meet people with disabilities. I hope that the people at Genetic Alliance let me come back and speak again at next year’s conference.

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Inclusion & Advocacy–According to Micah:
Definitions in Pictures

by Micah Fialka-Feldman

Micah, a longtime youth advocate, shows us what inclusion and advocacy means to him, in pictures. Travel with him as he navigates his college campus and his after school activities.

This is me at college. I am trying not to get lost. Right now I am with some friends and we are trying to read the map and figure it out.

This is me trying to get to the recreation center. I am alone now and it is different than trying to get somewhere with friends. I feel different and I felt better when I was “lost” with my friends.

This is me shooting baskets with some friends. I have been shooting hoops with them every since college started-about 6 weeks.

This is me putting up a flyer about needing a driver to get to school and back home. I am taking responsibility to find myself a driver so I don’t have to rely on family or the bus.

I did get a driver and he is cool

This is me in front of a mural for Detroit Summer. This is aprogram that I am involved in. We fix up the city, paint things and teach others about inclusion. We try to help others understand how people like me can be in regular classes and regular activities.

This is me with my teacher. She and I are working together to make sure there is a good program at college for other kids like me.

This is me at the college ID office. Here I am, just like any other college kid who needs an ID.

This is me with another teacher in the program. We all are working together to make sure this is a good program.

This is me in the weight room at college. I am trying to work hard to be healthy.

And, even advocates need a break!

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KASA Articles

These articles have been written by our members. Each one is on a topic designed to share an experience.

Bryan’s Odyssey: The Story of a Journey
By Bryan Dooley
November 2010
Join Bryan as he shares about his travels to New Mexico.

Using Interdependence
By Micah Fialka-Feldman
November 2010
Interdependence simply means depending on each other. Read Micah’s story about how he uses interdependence to get things done!

My Story About Surviving A Hospital Stay
By Sunjay Smith
March 2010
This article is about Sunjay’s experience in the hospital, what he wished doctors understood, and about transitioning back to the community.

Dreaming About Driving
By Jennifer Thomas
June 2008
It was always Jennifer’s dream to drive. Read about her experience and the steps she took to make her dream come true.

Going to the Genetic Alliance Conference
By Liz MacDonald
July 2003
In July 2003, Liz attended the Genetic Alliance Conference on behalf of KASA. Read about her experience here.

My Second Story of Scott
By Micah
August 14, 2003
Almost two years ago, Micah introduced us to his friend Scott who “had a good mind and a good smile”. Micah has some new reflections on his friendship with Scott, which has entered a new chapter.

Inclusion & Advocacy–According to Micah
By Micah December 15, 2003
Micah, a longtime youth advocate, shows us what inclusion and advocacy means to him, in pictures. Travel with him as he navigates his college campus and his after school activities.

Welcome to… A Typical Life (and I have a disability!)
By Torrie
July 25, 2002
Torrie shares her feelings about the popular story of one parent’s take on raising a child with a disability, Welcome to Holland. This has been widely shared and used to describe what life is like as a parent learns of their child’s diagnosis, and Torrie disagrees…strongly.

I Heave Heard the Wind
By Torrie
July 25, 2002
Torrie is a deaf and disability rights advocate, as well as her many other interests. Read about her story, of missing the wind, and hearing it again.

School in a Small Town
By Dezirae
July 25, 2002
Dez lives in a small town in Ohio. She loves to write and is currently working on her first novel, and she has a poem that is soon to be published in an anthology.

Scott Has a Good Mind and a Good Smile
By Micah Fialka-Feldman
June 13, 2002
Micah made a good friend and learned some valuable lessons about friendship from the Summer Inclusion Institute 2001.

All About Erin: Diabetes? Not Me!
By Erin
May 17, 2002
Contributor Erin talks about the discovery of her diabetes, and later the added diagnosis of Chronic Fatigue Syndrome. Erin’s story is very honest and descriptive.

Children with Disabilities Deserve Equality
By Christina Mills
June 1, 2001
Christina explains accessible playgrounds.

Nobody is the Same
By Lizzie MacDonald
January 10, 2001

A Sister’s Story
By Samantha Via
December 27, 2000 Samantha has TWO brothers with special health care needs. Read about what life is like for her here.

Proud of My “Disability”
By Katie Beckett
November 28, 2000

Job Discrimination
By Katie Beckett
July 20, 2000

The Katie Beckett Story
By Katie Beckett
June 28, 2000

Helping Others
By Katie Beckett
April 24, 2000

Report from AMCHP
By Janell Wells
April 24, 2000

Achieving Goals
By Christina Mills
April 24, 2000
An interview with 1996 Paraolympic athlete Eric Nitzel from San Diego California.

Living with a Disability 24-7-365
By Joe MacDonald
What it’s like to be a big brother to someone with special health care needs. Click here to read about Joe!

Youth Track at a Conference
By Maia Wroblewski
May 5, 2002
Maia, a college student, was instrumental in the success of the development of a “youth track” at a state families conference. Maia explains what happened and why it was good! Read about what to do, how to be prepared.

How to Involve Youth in a Conference
By Naomi Ortiz
March 7, 2001 Read about how to involve youth at a conference. This is also good for adults who want to include youth on a task force or advisory board.

How to Be on a Conference Call
By Katie Beckett
Katie gives helpful tips about being on a conference call and to participate in a meaningful way.

Guidelines For Reporting and Writing about People with Disabilities
By RTC/IL Publications, University of Kansas 1996

Attention: LATEX ALLERGY
By Maia Wroblewski
January 15, 2002
I am sure that everyone who has ever had a latex allergy is used to seeing this warning: “Caution: this product may contain latex which can lead to serious allergic reactions for some people.” But do you know it all?

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Checklist for Youth Participation

by Naomi Ortiz

1) Get a group of youth together.

2) The more diverse group of youth to participate, the better (diverse in race, sexual orientation, gender, class and disability).

3) Have one or more specific adult as a contact for them to talk about any problems with logistics, feeling uncomfortable, etc.

4) Make sure there are clear expectations about what you may expect from the youth. For example, “We want your opinions & ideas and the appropriate time to express them is at the board meeting.”

5) Make sure you are as consistent as possible in everything you do with the youth.

6) Watch out for using big words or acronyms (if you do, make sure you explain).

7) Make sure youth understand that they have a right to challenge and their opinions are as important as the adults.

8) Don’t put the youth on the spot; they will contribute if they feel comfortable.

9) Realize that this is a learning experience for all involved, don’t freak out over mistakes in protocol, etc.

If you have additional tips you would like to share, send them to Julie@fvkasa.org. Feel free to distribute widely, with attribution. Thanks.

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Job Discrimination

by Katie Beckett

One of the biggest issues facing young people with disabilities is job discrimination. The discrimination becomes subtler because of the threat of litigation. Instead of being blunt by saying that this job is not open to people with disabilities, people at the job can make the workplace unbearable to the point the person with the disability usually quits out of frustration. Many people within the disability community would think that a life long advocate would recognize discrimination and fight but I didn’t recognize it. I took it for much to long. This is my story.

I started working at the music store I the local mall when I was 16. I loved going to the mall and spending hours in the music store. I knew all the artists and songs. I always knew the new release dates. One day, the manager of the store offered me a job. I was ecstatic. I loved working there. Then, my manager and the assistant manager left to pursue other interests. This is when the problems started. The new assistant manager cut my hours drastically and was very hard on me. It was apparent to the new manager that he was much harder on me than everyone else but she couldn’t get through to him.

I never called in sick unless I was very sick most of the time. When I wasn’t at work, I was in the hospital or close to it. He started getting on me about my sick days. He also asked me to lift boxes and do other things he knew I could not do because I had always been upfront about my limitations. Still I stuck it out and took it.

I truly thought that it was my fault and that something was wrong with me. I came home from work crying most of the time. But I was torn because I loved listening to music and helping people find the music they loved. Despite what my assistant manger thought I was very good at my job. People knew to come to me when they had questions. I was known to know the answers.

It was not until my mother went to talk with the manager that I spoke up. When I did, I was scared. I didn’t want to lose my job. Speaking up did have its price because I was treated differently by the other employees. The manager was supportive and helpful but was very scared of litigation and losing her job. Finally, there was a meeting between the assistant manager, the manager and myself—without my mother present. He apologized but it was apparent he didn’t get it. He told me that “I was in the Navy and I fought for people. People just like you.” I won’t tell you what I wanted to say to that. He made me sign a paper saying he had apologized because litigation was threatened. I did end up quitting the job I did love but the story has a happy conclusion. The Navy man was being considered for his own store when my manager left shortly after I did; Before she left, she let the woman in charge of making the decision know a bit about my case. My case, along with his interview, helped her to decide against giving him his own store. She reportedly said that she thought he was a “schmuck”. I couldn’t have said it better myself.

Now I work as a receptionist at the local YWCA. People tell me what a good job I am doing, even the Executive Director. I am making more money than I did working at the national music chain. I got cards and flowers in Secretary’s Day and we even have Employee Appreciation Day here.

  • Keep talking about the discrimination until someone listens.
  • Don’t get discouraged—good things come out of bad things.
  • You are strong, not weak. If you were weak you would not have come this far.
  • The only limitations are the ones you let people put on you and the ones you put on yourself.
  • There are jobs out there with people who will respect your talents and uniqueness.
  • Don’t be afraid to ask people to help you find that job.
  • Keep your head up.

“Till next time, take care of yourself and each other.”

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The Katie Beckett Story

by Katie Beckett

There seems to be a lot of misconceptions about my life. I do not live the glamorous, exciting life that many people may believe I lead. I did not get a birthday present from the Reagan’s this year. I do not have a standing invitation at the White House. I do not hang out with the Kennedy family. I am not good friends with Chelsea Clinton; the only Chelsea I know is my stepsister.

I do not unusually have fancy, expensive diners with politicians when I go to Washington. I do not live the glamorous life when I go there. A typical visit would have me running through O’Hare airport in Chicago to make my connection flight at the other end of the airport. The gate always has to be the furthest from the one I land at. While on the plane I will be listening to my favorite music and the attendant will tell me to turn off the CD player in the middle of my favorite song. Once we land we’ll wait to leave until after all the pother passengers leave because of all the medical equipment we have to haul. We’ll wait forever to get a taxi and find out we won’t, make the dinner because our plane was late.

The hotel rooms do not usually have three televisions or TV’s in the bathroom. Exhausted, my mother and I will order room service and sleep. The day on Capitol Hill will involve short meetings with Congressmen’s (Congresspersons) assistants rarely the Congressmen themselves, and their offices will be in different buildings that are far away from each other. This is why I always remember to bring comfortable shoes and wear layers because you will get hot from all that walking.

After a day of walking we again return to the hotel room to go to sleep and go home if we do not go on a plane the same day of the meetings. Do I enjoy these trips? I do because I know that I am making a difference and usually I get to see other advocates that I respect and admire.

There are some things that are true: I do have mothers and some fathers who come up to me crying because they are on the Katie Beckett waiver* or they have been helped by Family Voices and I do get invitations to speak or appear from politicians and highly respected groups like the Robert Wood Johnson Foundation, Children’s Hospital of Boston and the Princess Diana Foundation. These are pretty heady things for a 22 year old, but like Kid Rock says in my favorite song, “Only God Knows Why”, “…somehow I know there is more to life than this”. What I mean by that is that I know there is more to my life than all the attention that I receive. The most important thing I want people to know is that I am really just a girl who loves concerts, basketball and wrestling. I am just a girl who got very, very lucky.

“Till next time, take care of yourself and each other.”

* Medicaid Waivers are state-run programs that use federal and state funds to pay for health care for people with certain health conditions. Without Medicaid Waivers, thousands of children with special health care needs would either go without health care (because of their health condition and/or financial situation), or would be institutionalized in order to qualify for Medicaid. Medicaid Waivers permit states to use flexibility to design publicly financed health care systems outside of certain federal Medicaid statutory and regulatory requirements. Each state has different Waivers with different eligibility requirements or services. Two Medicaid statutes are currently waivered: 1915 and 1115.

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Latex Precautions

by Maia Wrobelski

I am sure that everyone who has ever had a latex allergy is used to seeing this warning: “Caution this product may contain latex which can lead to serious allergic reactions for some people.” Of course, the consumer always has the question of how serious the manufacturer is about the warning. Are they talking about the packaging process, the plant in which in was package, the actual product, or the possibility of the product causing a reaction? The reason manufacturers do this is because they don’t want to be held responsible for a reaction caused by any part of the manufacturing process. Unfortunately, for people with latex allergies this can become a problem. I am one of those lucky few that has to play the guessing game every time I go to the store, and if that wasn’t bad enough; it has now become necessary to watch for these problems at the doctor’s office. Some medications are mixed using latex rubber balls, or stoppers. I recently went to receive a mennegincoccal vaccine and an influenza (flu) shot. I was unable to receive the mennegincoccal shot because the label indicated that it might contain components that may have come in contact with latex. Although the shot was not required, I was being denied a vaccination that I had a right to be receiving.

The flu shot was a little different. I was lucky to have a great pharmacist that looked through all of the packaging and was able to assure me that the shot medication, and the needle did not come in contact with latex. It was only the packaging, and the nurse was careful not to touch the latex when removing the shot. I don’t think that this is a type of problem a person should have to worry about when going to the doctor for a shot. This is also very important information that is not really public. Although they may publish it on paper, it is not widely known. I was lucky to have wonderful doctors who were watching out for me, but it is a problem that needs to be addressed. I have included the address of a specific manufacturer of the mennegincoccal vaccination. I wrote to them to let them know the concern I have because I couldn’t protect myself with a vaccine because of their manufacturing process. Please feel free to let them know how you feel about this issue.

If you have additional tips you would like to share, send them to Julie@fvkasa.org. Feel free to distribute widely, with attribution. Thanks.

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Living with Disability 24-7-365

by Joe MacDonald, 9th grade, Delaware

Some people still dont understand about kids with special needs but many are catching on. I myself, have lived with my sister who has a disability for 11 years. My sister, Lizzy who adapts well to her size and everyone else takes a liking to her special size. I have seen many important things happen over the years in this house that have involved my mom and my sister. My mom , who is a Family Voices Coordinator of Delaware has been a fighter for disabled people for many years. My mom has traveled all within the Delmarva area and some areas outside that region. She has fought long and hard for those with disabilities and has achieved many of those battles. My mom has worked side by side with many famous politicians such as former senator Bill Roth, Senator Tom Carper (former Governor of DE), Collin Bonini, and Jerry Buckworth. Without these people many of her achievements would not be possible. These politicians have helped the public know that equal rights are for everyone no matter what.

My sister who has followed in my moms footsteps goes to conferences and meetings involving issues about disabled people. Many years ago, disabled children did not have equal rights like everyone else. Anyone disabled in general could not have the same job as everyone else, either due to racism among coworkers and there chairman above them or because there were no access ramps or elevators and no handicap parking. Children had to go to special schools and did not have equal opportunities as other children did. But in this day and age, disabled people are heading major corporations and receiving scholarships to Harvard. Children go to regular elementaries and graduate with the needed skills. Disabled men and women of the world must be recognized by everyone and treated equally. With your help one day everyone will be realized as an equal race.

I have seen many things in my life that not many people get to see. When i was just 3 years old my sister had been home from the hospital only 18 hours, when she started gasping for air but could not breath. My mother picked her up from her crib and held her to see what was wrong. Then my sister vomited all over. I know that may sound disturbing, but this meant she was breathing. She was rushed to the hospital where she stayed until she was almost one year old. She has been in two halos, once when she was young and once when she was in the 4th grade. I guess I never realized it, but my mom has always told me stories of when I was younger when i did all that I could to help my sister. I always was at the hospital for her with my family. I have seen alot of changes over the years. For instance, my mom always fighting to get my sister the technology and help she needed in school or my grandparents helping out when they could to watch me when my sister was sick. Being disabled is not a crime. It is a gift that God gave to you. Have you ever heard of the crippled lamb in the stable the night Jesus was born? The little lamb wondered why he was different and why God made him that way. But the night that Jesus was born, little lamb crawled over to Jesus and baby Jesus held tight to the little lamb to keep warm. Then it struck him ,this was why God made him like this and this is what he was put on this earth to do. So, if anything ever happens to you or your friends and you become disabled or you are born disabled, think of that little lamb.

Joe is in the 9th grade. In his spare time, he likes to ride his bike and learn and talk about hot rods. He also likes rock bands like Aerosmith, Led Zeppelin, and the Rolling Stones. He hopes to get an electric guitar soon cause he thinks they are cool.

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Nobody is the Same

by Lizzy MacDonald, age 11, Delaware

Nobody is the same. Everybody is different in their own little way. Some people may not have legs. Maybe twins may be conjoined, but that doesn’t mean that you are not part of the regular size people or children or maybe even twin group. Nobody should make fun of anybody. Just because you look different, doesn’t always mean that they act different. If someone is in a wheelchair, and they want to play in a play, they can play a special part in the play that no one else has, they can play that scene. In fact, my mom and I know someone whose son is in a wheelchair, and every year his school has a play, and he joins in on the fun in the play. Our friend has a head injury. He is in a regular high school. I on the other hand, have a rare type of dwarfism called S.E.D. congenita. I am 30in. tall, and I use crutches to walk. I am also in the band. You know what I do when people or children stare at me when I am in a store, I look at them and smile. Sometimes they will smile back.

Or they will look away. They are usually surprised that I’m talking because I’m so small.

Remember, you’re the one that is special.

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Proud of My “Disability”

by Katie Beckett

I had a rather unusual experience yesterday while shopping for back to school items. I was in a store looking for school clothes. I noticed the sales associate was staring at my neck. It doesn’t bother me when people stare at my tracheotomy tube in my throat. It happens a lot and I ignore it. I wasn’t prepared, however, for her to say to me, “You want turtlenecks, don’t you?”

It took me aback. I go shopping a lot and I have not had anyone say that to me EVER. I wasn’t sure how to handle it so I ignored it. I wasn’t going to cause a scene. It’s not really her fault because she probably wasn’t thinking what she said was going to offend me. In addition, she was African-American and I was worried that in this race conscious society that I might be accused of being racist if I did say something about it. I wished I hadn’t been afraid and said something to her but I think I did the best I could at that time.

Some people over the years have encouraged me to cover up my neck because “it is intimidating”. They say, “Even if you don’t want to wear a turtleneck, you could put pretty ribbons instead of the white one to hide your (trach*) cap.” Doctor’s have suggested clear trachs or other models. I decided to stick with my trusty white trach with a white ribbon.

This trach has kept me alive since I was six months old. Covering it up would be like covering up my nose. It isn’t just another body part to me. It saved my life. I wear it proudly. And if some people have that much of a problem with a little piece of plastic then they aren’t the kind of people I want to associate with anyway. My hope is that other people with disabilities will be proud instead of ashamed or embarrassed by the physical symptoms of their disability.

“Till next time, take care of yourself and each other.”

“Only shooting stars break the mold.”—Smashmouth, “All Star”

*Trach is short for tracheotomy (pronounced “tray-kee-ot’-o-mee”) tube. A tracheotomy is a surgical procedure in which an incision is made in the front of the neck and a breathing tube is placed into the trachea, also called the windpipe. The tube that is placed into the trachea is called a tracheotomy tube.

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School in a Small Town

by Dezirae

Dez lives in a small town in Ohio. She has many intrests and hobbies such as singing, collecting angels, riding her bike, swimming, and spending time w/her family and friends. She also loves to write and is currently working on her first novel, and she has a poem that is soon to be published in an anthology. Dez also finds time to write the education and careers column at disabilitycentral.com. Oh yeah, and Dez is 15 years old and has Cerebral Palsy.

Small towns are great for raising families in my opinion but they’re certainly not ideal for the education of the handicapped student. How would I know? I’m coming from that exact situation. Hi, my name is Dezirae Kolmerten. I’m a 15-year-old sophomore with Cerebral Palsy. I’m the only student in my small High school, where the average class size is 120, with a physical disability. I consider myself to be intelligent and I have big dreams for my future. My physical condition didn’t really start to interfere with school until seventh grade when I began to switch classes. My jr. high (which has recently been torn down because it was falling apart) was very old and had two upper floors which you could only get to and from by using a steep staircase. Legally my parents could’ve forced the school to put in an elevator, but since the school was going to be coming down within a few years and a new one was to be built, my parents agreed that the money would serve a better purpose if it were put towards the new building. I can’t say that I disagree with my parents’ decision, but I would also be lying if I said that my life wouldn’t have been any easier with the installation of an elevator…

As any jr. high or high school student knows classes go from bell to bell. Being late for a class means missing out on preparation instructions/time and leaving a class early means forfeiting last minute homework reminders or tips. In seventh grade my school’s solution to getting me to class on time and safely was providing me with an aid that would come and help me down the stairs slightly before the ending bell sounded so that I could avoid the “mad rush”. Sounds helpful right? Not exactly. The truth is, I was embarrassed by the fact that I needed any help. I’d always been “the girl who did it all herself and never let her disability stop her”. To me, using the help of an aid illustrated my defeat. I admit I was a lot of the problem but I wasn’t all of it. Since I was the only student who needed an aid the principal didn’t hire a separate person for just this type of responsibility; he had the LDHD aid help me on top of her original duties. This would’ve worked except that the students in a LDHD class often have totally different schedules from day to day and they have to be “escorted” to each of their classes. If you haven’t quite guessed yet this scattered schedule meant that I was forgotten on more then one occasion. I could get in trouble if I went up or down the stairs myself so I was often late for class or lunch. The problem of being late or leaving early is impossible for me to avoid 100% of the time because I am slower then average, but having an aid that already has too many responsibilities certainly doesn’t help the situation!

Eighth grade was much easier as far as getting to classes on time but as in many situations like mine in order to get rid of one “bug” you have to create another, it may be a smaller one but never the less it still exists. In order to get rid of the aid issue Mr. Raach (principal) had the upper floor teachers come to me. This was good except that the three teachers that came to me all taught me in the same room, a room with gray brick walls and no windows. As you can imagine, my peers weren’t too happy with the wonderfully dull room. On top of that, teachers often forgot a supply or two causing class to be delayed. Delayed class might seem cool but all it means is that you eventually have to catch up and do more work in less time. To be perfectly honest I didn’t help my physical health much that year. None of the students were permitted to use backpacks because of all the school shootings, but I was. That doesn’t mean I did. I absolutely refused! I carried my books by hand with my back arched to the max every step of the way, screwing up my spine alignment more every second. Then again, if I were to use a backpack wouldn’t that be yet another example of me openly admitting that I couldn’t do it on my own like everyone else? That I wasn’t “normal”?

Another big issue my eighth grade year was P.E. I think it’s safe to say that most of the student body didn’t consider co-ed P.E. to be one of the most thrilling classes they’ll ever take. Most people dream of being able to sit and do nothing all period and I basically had that. Sorry to disappoint you but it’s only ideal for a few days and then; to put it quite bluntly, it sucks! My P.E. teacher had me take attendance, which I could never seem to do quite right, and keep score. On the days that there was no scoring I sat. Don’t ask me why, but my teacher never understood why I would want to read or do homework instead of just sitting. So, I never did read or do homework he told me I had to watch. To top it all off, I got a “B” both nine weeks. I never could figure out why. My only guess is he knew my opinion of his theory “Just sit” and what else did he have to grade me on? We went to Mr. Raach and his response was “You are not the only one to complain about his grading system.” How supportive huh?

Freshman year was great as far as P.E. was concerned. Mrs. Tedrick was extremely understanding and I got an “A” both nine weeks! Only one slight problem: mods. Let me explain. Remember when I told you we were getting a new high school? Okay, the new high school was being built during the school year and the high school that I was in was being remodeled, one half at a time, so that it could be in tiptop shape for the middle school students come next fall. With one half of the school off limits all year we were short a few classrooms; three modules (trailers) known by the students and staff of RHS as “mods” were placed out side about 100yrds from the building. As you can imagine I was late for eighth period history often. As it happened though I got smart and started using a backpack!

My school does its best to make life and education easy for me, and yes, there are still a few “bugs” to work out but we’ll get there. I just wish that schools with a very small percentage of students with disabilities would realize that they need to make an effort ahead of time. Life’s hard for everyone. Take my advice and don’t make it any tougher then it has to be, I did and I regret it! I know it’s hard but sometimes you have to nag the school board to get what you need. Don’t be ashamed, my grades dropped because I was embarrassed. That’s something that I’m not too proud of now! Let me leave you with a quote from my boyfriend (who is able bodied). I was discussing this issue of embarrassment and being “normal’ with him less then a week ago. He said something to me that really makes sense, “BEING NORMAL MEANS NEVER BEING NOTICED”!

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A Sister’s Story

by Samantha Via

Hi, my name is Samantha Via I am 14 years old. I am a sibling with two brothers who have special needs. For those of you who don’t know what special needs are, it is people who need extra help and attention with there everyday needs.

My older brothers name is Rudy he is 15 years old. He has Cerebral Palsy and uses a power wheelchair because his muscles are not as strong as ours. He also uses a communication board because he cannot talk but believe me he can communicate and has no problem making his needs known. He needs help with dressing, and some of his other necessities. But he can still do a lot for himself. He can feed himself, rides horses independently, play video games, and is on a competitive wheelchair team. I think he could do more my mom and dad are always making up excuses for him. When I’m home alone with him I make him do everything and he can, it just takes him a bit longer. My younger brothers name is Brandon he is 10 years old and has Down Syndrome which is where he has an extra 21st chromosome and its makes him a little slower to learn. So you have to be patient and have to show him things over and over but he is eager to learn. He is always happy and makes us laugh all the time and he doesn’t need as much help as my other brother. I feel that having two brothers with special needs is fun but still harder. I have to help my parents out a lot more with my brothers and stuff. Sometimes being in a family with two brothers with special needs gets a little bit more crazy and harder but I will always love them and my family is perfect just the way it is.

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Youth Track at a Conference

by Naomi Ortiz

Every year Wisconsin holds the Circles of Life conference. It is a time when families, and children with disabilities can come together and share stories, and experiences. There was a suggestion to add a youth track, where youth above the age of 13 could come together to share their own stories, and experiences.

At first it was like most conferences, no one knew anyone else, and everyone was a little shy. However, we took care of that. Some of the sessions we had planned were known as “get to know you” sessions, where every person had a chance to introduce themselves. As the conference continued everyone began to really open up. The youth had a chance to learn about opportunities after high school, resources around Wisconsin, as well as nationally, that would help them to advocate for themselves, and helping them to realize that they are not alone. It was their time to be heard. They could share stories about their school, their family, and ask any questions they had to others who had already gone through middle and high school transitions. The youth had a chance to try out technology geared towards youth with disabilities, and give suggestions about future items that would be useful.

At one point during the conference the youth were able to “kick out the adults” and just hang out. After that everyone was really comfortable talking. At all times during the conference youth were allowed to get up and walk around, no one was forced to stay seated, if it helped a person to think or get involved it was encouraged. On the first night of the two-day conference, there was “Family Fun Night”. Bucky badger was there; we had pizza, face painting, movies, and an auction.

It was great to have youth from around the state come together and have some fun, while also learning about their future options. Everyone shared their hopes and dreams for the future and had a chance to feel independent!

If you have additional tips you would like to share, send them to Julie@fvkasa.org. Feel free to distribute widely, with attribution. Thanks.

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Helping Others to Help Others

by Katie Beckett

In February, I had the honor of being one of the grant reviewers for the Diana, Princess of Wales Memorial Fund (U.S.) As many of you know, KASA received our first major grant from the Fund.

KASA was chosen to receive a grant last year because it is a youth centered organization that has youth involved in every stage of development. The fact that it was a national organization that would reach kids with many kinds of disabilities to teach them how to become more independent were also important factors in the Fund’s decision.

I was honored to represent KASA and Family Voices on the review panel. The reviewers were very excited to have a person representing an organization that received funding on the panel.

Even though I am young and have never reviewed a grant before, I was treated as an equal and my opinions were taken very seriously especially on programs concerning youth with disabilities. I focused on programs that were national, would reach kids with all sorts of disabilities and would bring them together with kids without disabilities.

I think people with disabilities have a natural tendency to stick with other people who have the same or similar disability. While there is nothing wrong with that, I be;live it is important to get to know people who have other disabilities as well as people without disabilities,. The reason we call it a “disability community” is that we are all here to support each other. How can we support each other when we don’t know each other?

As advocates, we always think about tomorrow, next month or next year but while planning, remember there is no day but today.

“Till next time, take care of yourself and each other.”

 

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