Empowering families experiencing disability.
Join us for a virtual inclusive afternoon of programming designed for our disability community over Zoom. Sept. 12: Stories & Songs; Oct. 10: Bingo & Trivia. This program is open to all! Register to receive Zoom link (all ages welcome).
www.BeavertonLibrary.org/Register
By Executive Director, Roberta Dunn
It was in a college psychology class that I was first introduced to Maslow’s Hierarchy of Needs, the five tier triangle that identified the meeting of individual needs to the ability to experience individual growth; the idea that one built upon another in a hierarchy. It sat well with me then and still does, but all these years later, I can’t help but apply this to the experience of the many people in my life that experience disability, including my own son. Too often, in our journey in disability, the emphasis of needs as being “special needs” somehow diverts pursuit of Maslow’s five basic needs. It launches us in focused pursuit, and possible acquisition, of meeting one’s physiological and safety needs, but often stops there. And while advocacy efforts have made strides in securing access – to school, community, etc., simply being able to access something falls short of belonging. Is that the end of growth for friends and family members experiencing disability – basic needs met in a safe place that they are able to access? No way!
Let’s change the narrative, let’s flip this scenario on its head. January 20th is the MLK National Day of Service, a great opportunity for you and your child/young adult to plug into community; a great opportunity to celebrate what makes us unique – our strengths, our gifts and our talents. Visit the website and find a site near you where your family can shine!
Remember a time when you felt esteem, pride, success – a time you felt your personal best. Wasn’t it amazing?! Everyone, including our children experiencing disability, deserve opportunities to experience that. Let’s make it happen this MLK Day of Service.
We look forward to hearing your stories. And remember, our communities are stronger and more vibrant when they are inclusive!
https://www.nationalservice.gov/serve-your-community/mlk-day-service
¿Alguna vez ha tenido problemas para participar en una actividad que no era accesible para usted? ¿Ha sentido o visto las lágrimas, la frustración y la tristeza como resultado de esto?
En FACT Oregon, interactuamos con familias todos los días a cuyos hijos se les dice que no pueden participar en actividades, o que pueden pero solo de forma limitada, en un lugar determinado, o si es que no es “demasiado difícil”.
FACT Oregon creó el Triatlón de Todas las Habilidades Tri4Youth para brindar a los jóvenes con y sin discapacidades la oportunidad de competir juntos en un triatlón abierto y accesible para todos. La participación en deportes y recreación en la comunidad son una parte clave para tener una vida plena, para muchas familias. Todos nuestros niños merecen participar de una manera que celebre su esfuerzo, reconozca las barreras y también sus necesidades para que puedan tener éxito.
Lea esta historia de Angie Sims acerca de la experiencia de su hija:
“A menudo es difícil para Ruby participar en deportes o eventos organizados. Le cuesta mucho seguir conceptos e instrucciones. Ruby tiene varios diagnósticos que pueden explicar por qué ella”se comporta un poco diferente en la vida” – epilepsia, autismo, ADHD … ¡pero para nosotros, es solo Ruby! Este año, Ruby participó por primera vez en el Triatlón de Todas las Habilidades Tri4Youth de FACT Oregon. Ella se divirtió, ¡y nosotros también!
Ruby tiene más éxito cuando puede mirar y luego hacer las cosas y cuando está familiarizada con un lugar. Afortunadamente, FACT Oregon permitió que los participantes vinieran el día anterior a dejar las bicicletas, ver las instalaciones y mirar el curso. También compartieron una historia social y un tablero de comunicación, y vimos un video sobre el evento y hablamos sobre cómo todos participan de manera diferente. Ruby se sintió muy independiente y empoderada al participar con su compañera de equipo y cuidadora Dawn mientras nosotros la animábamos desde un costado. Aunque estaba nerviosa, también estaba emocionada, y con todos animándola, ¡Ruby se sintió como una estrella! Pudo tomar esa energía y mantenerse enfocada a cruzar la línea de meta.
En el triatlón de Todas las Habilidades Tri4Youth, todos son ganadores. Todos los participantes reciben apoyo y es un evento sin presión, y con la única expectativa de divertirse. Y realmente, ese es nuestro enfoque principal en la vida. En otros eventos, sentimos la necesidad de explicar los comportamientos de Ruby o enseñarle las normas sociales que no comprende completamente. Pero en FACT Oregon, solo vimos aceptación.
Para nosotros, el triatlón de todas las habilidades Tri4Youth es una forma divertida de ser parte de algo más grande. Es realmente mágico estar involucrado en una comunidad que nos permite a todos reconocer la vida por lo que realmente es. ¡Doy gracias por Ruby por que me llevó a estar en este lugar en la vida y agradezco a FACT Oregon por la educación continua, el apoyo y los eventos únicos que nos permiten unirnos y ser testigos de la grandeza en todas sus formas!”
Pero FACT Oregon necesita su ayuda. El triatlón de Todas las Habilidades Tri4Youth es una de las muchas formas en que apoyamos a las familias y las conectamos con los recursos y con la comunidad. Nuestros entrenamientos y nuestra línea de apoyo de familias para familias ayuda a las familias a obtener información y orientación sobre educación especial, servicios de discapacidad, comportamiento, tecnología de asistencia, visión, acceso a la comunidad, planificación para la edad adulta y más. Este año hemos estado viajando por todo el estado con nuestras Cumbres Regionales de Aprendizaje gratuitas de un día. Y nuestro equipo de apoyo ha estado ocupado comunicándose con las familias por teléfono y correo electrónico en inglés y español, y con el uso de intérpretes en otros idiomas.
Su generosidad garantiza nuestra capacidad continua de apoyar a las familias que viven con discapacidad.
Estamos agradecidas/os de la fundación The Collins Foundation POR EL DESAFÍO 1: 1 MATCH.
Have you ever struggled to participate in an activity that was inaccessible to you? Have you felt or seen the tears, frustration, and sadness that result?
At FACT Oregon, we interact with families every day whose children are told they can’t participate. Or only in a limited way. Or only in a certain place. Or only if it’s not “too hard.”
FACT Oregon created the All Ability Tri4Youth to provide youth with and without disabilities an opportunity to compete together in a triathlon open and accessible to all. Participation in community sports and recreation is a key aspect of pursuing a whole life for many families. All our kids deserve to participate in a way that celebrates their effort, recognizes barriers, and addresses their needs so that they can be successful.
Read this story from Angie Sims about her daughter’s experience:
“It is often difficult for Ruby to participate in organized sports or events. She has a hard time following concepts and directions. Ruby has several diagnoses that help explain why Ruby “does life” a bit differently — epilepsy, autism, ADHD…but for us, it’s just Ruby! This year Ruby, participated for the first time in FACT Oregon’s All Ability Tri4Youth. She had fun, and so did we!
Ruby succeeds best when she can watch and then do and when she is familiar with a venue. Thankfully, FACT Oregon allowed participants to come the day before to drop off bikes, see the facilities, and look at the course. They shared a social story and communication board, and we watched a video about the event. We talked about how everyone participates differently. Ruby felt very independent and empowered participating with her teammate and caregiver Dawn while we cheered her on from the sidelines. Although she was nervous, she was also excited, and with everyone cheering for her, Ruby felt like a star! She was able to take that energy and stay focused through the finish line.
At the All Ability Tri4Youth, everyone is a winner. Every participant is genuinely supported, and the event is relaxed, sensory friendly, and with no expectations except to have FUN. And really, that is our main focus in life. At other events, we feel the need to explain Ruby’s behaviors or teach her social norms she doesn’t fully grasp. But at FACT Oregon, we just see acceptance.
For us, the All Ability Tri4Youth is a fun way to be a part of something bigger. It is truly magical to be involved in a community that allows us all to recognize life for what it really is. I give thanks for Ruby leading me to this place in life and thank FACT Oregon for the ongoing education, support, and unique events to allow us to come together and witness greatness in all of its forms!”
But FACT Oregon needs your help. The All Ability Tri4Youth is one of many ways we support families and connect them to resources and community. Our trainings and peer support line help families get information and guidance on special education, disability services, behavior, assistive technology, visioning, community access, planning for adulthood, and more. This year, we are traveling across the state with our free day-long Regional Learning Summits. And our support team is busy connecting with families by phone and email in English and Spanish, and working through interpreters in other languages.
Your generosity ensures our ongoing ability to support families experiencing disability.
We are grateful to The Collins Foundation for a 1:1 CHALLENGE MATCH.
Donate today to take advantage of this 1:1 match of new and increased gifts!
By Whitnie Trost
My name is Whitnie Trost and I am a mother of 6 kids. My youngest, Christopher experiences Down syndrome and Autism. Anyone who knows Christopher, knows that he is an amazing and funny young man but he struggles with many sensory processing issues, especially around the face area. When he was just a little guy, we could still brush his teeth and brush and cut his hair pretty easily because he was small and we could distract him. Once he got a bit older we realized that cutting his hair was going to continue to be a problem. One of the biggest problems besides him getting bigger was the fact that having Down syndrome, Christopher has low muscle tone, which I have interpreted to mean his body can bend and move in directions and ways that only Playdoh can move. So we began to realize that just holding his hands was not enough, we had to secure his legs as well. If we didn’t, the person using the clippers would unexpectedly find a stray foot squeeze through and whack them in the face at an angle that left us baffled. So we needed to problem solve.
There was one thing we could not compromise on: Not cutting his hair on a regular basis was not an option, we had to keep trying. I knew that if we didn’t, his struggles with sensory issues around his face were more than likely going to get worse not better. We also made a commitment to always help Christopher look his best. He was not super keen on letting us gel and style his hair so a buzz cut was easiest, clean and current. When he was between 5-7 years old, I had a friend who cut hair and we would make private appointments at her house. I would sit in the chair and after making it VERY CLEAR that she had about 4 mins tops to cut his hair, I would take a deep breath, count to three and then quickly wrap my legs over his legs and hug him around the middle while holding down his arms as well. She would maneuver his head the best she could and after about 4 mins she was done. It worked pretty well and we got the job done. I was exhausted and sweaty afterwards and had to end the appointment with candy and a soda in order to complete the rest of my mom day. Eventually the problem became that, dang it, Chris kept growing and getting bigger. So after about the age of 7 we had to come up with a different approach. My oldest son Cooper, at the time was 17 and about 6 ft tall so we made our first attempt at cutting Chris’ hair at home. I was super excited to have this opportunity. Cooper would do a few stretches to prepare for the job at hand, and once stretched he sat on the floor while Chris sat beside him oblivious of what was to come. I would grease the clippers, we would both look at Chris and say “Buddy we love you, count to three” and then Cooper would scoop him up in a big brother bear hug. I had cut my other kids’ hair before so I was familiar with clippers but this was a sort of experience that left me feeling like I had been to the gym….PS I hate the gym! In the end we got it cut and so began the ritual of cutting Chris’s hair at home. For a few years this worked great! Of course, there came a time when my oldest son grew and left home so the bear hug ritual was passed on to my husband. From the age of 11 to about 13 we did this all while giving words of encouragement and letting Chris know how handsome he looked and how well he did even though he would not have won any awards for bravery.
One day, the day of my oldest son’s wedding, we wanted to have Chris’ hair newly cut. I was in a rush and bumped his head with the clippers and long story short I ended up shaving the crown of his head totally bald! Luckily, you couldn’t see it in the pictures but anyone above the height of 4 feet had a full view. By the time he was 13/14, we knew that forcing him to comply was just not going to work forever. I like to be prepared for things, so I knew it was time to test his ability to do it without being held. So began the practice of turning on the clippers and setting them by him, sometimes for up to 5 mins. Then we would move it to his arm for a few minutes, and then we would get him to hold the clippers. He would then begin to let us do a few strips without a huge fight but still several tears and it would often end with us still bear hugging him. Finally at about age 15 and still with some sensory prep he would let me cut his hair without too much push back. Now I will say that by the time we let him hold the clippers he realized that Mom was going to get her way so eventually he would bow his head, as if to place it in a guillotine and allow me to cut quickly. This was huge. I worked quickly and trimmed as much as I could. My kids say that my trademark when cutting their hair is to leave a few random strands just for effect. So I did not disappoint and for the most part it looked pretty good.
To this day, it can be a struggle, but I have come to realize that with a little bribery of chocolate ice cream and a lot of patience, we have come to the point that Chris realizes he will live and his mom is the most stubborn and determined person alive. I know that if we did not continue to try, if we did not have the definite idea that he needed to have his hair cut every three months or so and that it was never an option to give up, we would never be to the place now at age 17 that we can cut his hair, without any bodily injury to either party, and with the minimal cost of chocolate ice cream and a short visit to my local See’s candy shop.