FACT Oregon

Empowering families experiencing disability.

personal story

“It always seems impossible, until it’s done” Nelson Mandela

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By Lucia Alonso

Image is of four athletes standing on grass surrounded by a running track. The athletes hold white signs with blue writting that read Team Alex and Team Tony! Athlete Alex is wearing a blue shirt and Athlete Tony is wearing a red shirt and a black hat. The other two athletes are wearing a green shirt and black pants and a red shirt and black pants

 

Alex and Tony share a diagnosis that many believe would prevent them from doing many things. While this is somewhat true, the people who surround these boys make sure to help them achieve all they CAN do. Autism doesn’t define them, it makes them unique. These boys have taught us so many things with their pure existence. Tony has autism like Alex and is also legally blind. Today, he rode a bike all by himself for the first time ever. This, this is huge, it’s something his family and ours feel blessed to have witnessed. When these boys do something, it’s celebrated because at one point, we were told they could/would never be able to. Alex and Tony are the reason we celebrate today, they have taught us more than we ever imagined, and today and everyday, they are our heroes!
“It always seems impossible, until it’s done” Nelson Mandela
Two athletes standing on grass, surrounded by a running track giving high fives after they completed their race. Both Athletes are wearing medals, one athlete has on a red shirt and black hat and the other has on a blue shirt and glasses. Two athletes standing on grass surrounded by a runnign track. Both athletes are doing stretches while standing. One athlete wears a red shirt and black hat, the other athlete is wearing a blue shirt and bike helmetTwo athletes, in the distance, running and riding a three wheel bike on a running track. Both athletes are wearing blue shirts. Two athletes, running on running track, both wearing red shirts and black hats, one uses a mobility aide

 

¡Esto es para tí, Christopher!

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Por Whitnie Trost

Bueno, soy una madre de 6 niños, 5 niños y una niña. Hace 30 años, comencé mi viaje de ser madre y seguí adelante. Vengo de una gran familia y mi esposo también, así que cuando encuentras algo en lo que eres bueno, lo haces, fortaleciendo tus talentos y todo eso. Cuando tuve a mi hijo menor, Christopher, a la edad de 34 años, tenía una casa llena y hubo muchos días en que pensé que mi vida era un día interminable. A menudo no podía recordar qué día era. Si no fuera porque mis otros hijos iban a la escuela y tenían un horario, los pantalones y el maquillaje probablemente habrían sido una opción de la que hubiese optado no usar. Realmente me encantó ser madre y estaba totalmente acostumbrada y muy buena con el caos, pero no voy a mentir, hubo días en que pensé en pisar Cheerios y puré de manzana y ser mediador entre mi hijo de 14 años y mi hijo de 5 años por los juegos de Nintendo me iba a ayudar. A menudo me preguntaba si mi algún día sería más glamorosa de lo que era en ese momento.

Increíblemente pasó el tiempo y sobreviví cada día. Mi hijo mayor comenzó la escuela secundaria, luego el siguiente y luego el siguiente. Mientras esto sucedía, mi hijo Christopher, que tiene síndrome de Down y autismo, avanzaba en la escuela. Trabajamos muy duro para conseguir apoyo para que él tuviera éxito y fuera incluido en la escuela y obtuviera el apoyo adecuado para poder experimentar la carrera escolar más adecuada, aprender a ser un niño y luego un adolescente al estar con otros niños y adolescentes. A veces fue un proceso largo, estresante e incluso doloroso, pero, admitámoslo, he criado a un millón de niños. Soy buena con procesos largos, pesados ​​y a menudo molestos.

Christopher caminó con decisión en la escuela secundaria y lo llevó a la preparatoria. Esto no fue sin intentos y frustraciones, sino con una comunicación constante con la escuela y un equipo que probablemente aprendió a escuchar y actuar porque yo era una madre colaborativa y que compartía muchas ideas y también una madre leona.

Christopher lo logró, teniendo muchos de los mismos maestros que todos mis otros hijos tuvieron cuando fueron a la misma escuela e hizo algunas muy buenas amistades y relaciones que han moldeado su independencia y propósito en la vida. Poder asistir a todas las clases a las que también asistieron sus amigos del vecindario y de la iglesia lo ayudó a trabajar duro y no solo a recibir, sino también a obtener y ganar su Diploma Extendido.

Boy smiling wearing checkered shirt, tie, and glasses outside on a basketball court

Sabíamos cuando nació que era único. Sabíamos que iba a tener que ser más fuerte y más decidido que nadie para tener éxito, y sabíamos que nos haría, como familia, mejores personas de las que hubiéramos sido por nuestra cuenta. Sin embargo, creo que no estábamos preparados para darnos cuenta de que Chris sería más divertido que todos nosotros, más inteligente de muchas maneras que todos nosotros, más fuerte y más decidido que todos nosotros, sin miedo a decirnos las cosas que no tienen sentido, no tiene miedo de mostrar amor, compasión y amistad con un simple choque de puños, dame cinco (high five) y un suave toque en la frente para mostrar que, aunque su rostro y sus gestos no lo demuestren, te ama y aprecia profundamente y genuinamente hasta el fondo de su corazón.

Christopher, estamos muy orgullosos de ti. Felicitaciones, y aquí vamos por un futuro ambicioso, emocionante y enriquecedor y otros 18 grandes años. ¡Te amamos!

Here’s to you, Christopher!

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By Whitnie Trost

So I am a mom of 6 kids- 5 boys and one girl. 30 years ago, I began my journey of being a mom and just kept going. I come from a big family and so does my husband, so when you find something you are good at, you go with it, strengthening your talents and all that. When I had my youngest son, Christopher, at the age of 34,  I had a house-full and there were many days when I thought my life was one never ending day. I often could not remember what day it was.  If it weren’t for my other kids going to school and having a schedule, pants and make up probably would have been an option I opted out of. I truly loved being a mom and I was totally used to, and really good at, chaos, but I am not going to lie, there were days when I thought stepping on Cheerios and squished applesauce, and being a mediator between my 14 year old and my 5 year old over Nintendo games was going to do me in.  I often wondered if my life would ever be more glamorous than what it was at that time.

Amazingly time went on and I survived each crazy day, and my oldest started high school, then my next one and then the next.  As this was going on my son Christopher, who experiences Down syndrome and Autism, was advancing in school.  We worked so hard to get him support in being successful and included in school and getting the right support in place to be able to experience the most appropriate school career, learning to be a kid and then a teenager by being with other kids and teenagers.  This was sometimes a long, stressful and even painful process, but, let’s face it, I have raised a million kids.  I am good with long, taxing and often annoying processes.

Christopher hit his stride in middle school and carried that stride on into high school.  This was not without trials,  and frustrations, but with constant communication with the school and a team that probably learned to just listen and do because I was a collaborative, brainstorming tiger mom.

Christopher made it through, having a ton of the same teachers all my other kids had when they went there and he made some really great friendships and relationships that have shaped his independence and purpose in life. Being able to attend all the classes that his friends from the neighborhood and church also attended helped him to work hard and not only receive but earn and achieve his Extended Diploma.

Boy smiling wearing checkered shirt, tie, and glasses outside on a basketball court

We knew when he was born that he was unique. We knew he was going to have to be stronger and more determined than anyone else to succeed, and we knew he would make us, as a family, better people than we ever would have been on our own. I think we were unprepared though, to realize that Chris would be funnier than all of us, smarter in so many ways than all of us, stronger and more determined than all of us, not afraid to call you out on things that don’t make sense, not afraid to show love, compassion and friendship with a simple fist bump, high five, and a gentle forehead touch to show that even though his face and mannerisms may not show it, he deeply and genuinely loves and appreciates you to his core.

Christopher we are so proud of you! Congratulations, and here’s to an ambitious, exciting and empowering future and another 18 great years. We love you bud!

My Distance Learning “Secret”

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By Karen Houston

What does meaningful participation in online school look like for your child with a disability these days?  Perhaps you have a child that can attend to video calls with their teacher and then complete worksheets and other assignments with your guidance. You may be more like my child, who struggled with participation in a brick and mortar setting with one-on-one assistance and now is expected to complete school online. Maybe your story lies somewhere in between.  Wherever you fall along the spectrum of online learning, for kids with a disability, the one thing we parents all do have in common is that we have suddenly become the one and only teacher for our child. My son has ten adults on his IEP team at school. TEN. At home, with my husband working, it is just me; one person. I have become the SLP, OT, behavior specialist, general education teacher and learning specialist, just to name a few. How do I wear all these hats and make sure my child is meaningfully participating in online school alongside his peers? Well, I will tell you my secret. 

I don’t.

I simply can’t. I stepped away from my job at FACT Oregon during these unprecedented times to focus on my children and make sure they are safe, fed, healthy and yes, educated. I am lucky to be able to take this time with them. My daughter just logs on to her Google classroom and does her assignments and manages her own time. My son takes every second of every day and everything I’ve got. I had to decide early on how to manage all the video calls and emails and tele-therapies that were coming flying at me from every direction. Everyone wanted to help.  Everyone wanted to make sure he wasn’t left behind. My heart swelled with all the thought and care people were pouring into my son and my family, but my head felt like it was going to explode.

So, I read the emails, we attend his online classroom meeting each day and then we just kinda do our own thing. He listens to books and I read to him every day, some days that is 10 minutes total and on a good day an hour. We type on his adapted keyboard when he’s in a good space. I have no idea how to approach math in a meaningful way. We follow a visual schedule, on hard days we follow it loosely.  I am not hard on myself about him not meaningfully participating in online school because I am too busy celebrating the other things we are working on that have nothing to do with school.

woman and boy at kitchen table looking at laptop computer and using AAC device
My son and I working through one of his assignments.

One example is neighborhood walks. Pre-COVID-19, whenever my son would go out our front door he just wanted to load up into the car and go somewhere. If you tried to go for a walk around the neighborhood he would scream and fall to the ground. When the stay at home orders came through I knew that we’d both need to get out of the house, even just for a walk around the block, if we were going to maintain our sanity. The first two walks were not pretty, but by the third walk he was having fun. We work on him carrying his AAC device, stopping and looking before crossing the street and saying hi to neighbors (from 6 feet away). We are also learning how to do chores, get dressed and brush teeth independently, use and carry his AAC device all day and ride a bike. Our family started an AAC only dinner time where everyone has to use his program on a device to communicate, no talking! So many things we have always just done for him because we were in a rush and had no time.  Now all we have is time.

Family outside on sidewalk, father holding son as he rides a bike, daughter walking behind them.
My daughter, son, and husband out for a walk/bike ride around the neighborhood!

Having a child with significant communication and sensory needs makes online school extremely difficult. However, the stay at home conditions we currently find ourselves in also gives us opportunities we have never had before. We are doing our best to participate in online school in a meaningful way, but I’m much more excited about his meaningful participation in our family.

Historia del Equipo de Ruby

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¿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!

Woman and girl running together at the All Ability Tri4Youth

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.

 

Si valora ser parte de una comunidad que, como dice Angie, “nos permite unirnos”, entonces es el momento de donar.

 

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.

¡Done hoy para aprovechar esta ayuda extra 1: 1 para donaciones nuevas y las que hayan aumentado comparado al año pasado!

 

Team Ruby’s Story

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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!  

Woman and girl running together at the All Ability Tri4Youth
Ruby and her caregiver Dawn

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.

 

If you value being part of a community that, as Angie says, “allows us to come together,” then the time to donate is now.

 

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!

 

FACT Oregon
2475 SE Ladd Ave. Suite 430
Portland, OR 97214

(503) 786-6082 or 1 (888)-988-3228