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communication needs

My Distance Learning “Secret”

April 21, 2020 by Molly Williamson

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.

Filed Under: General Tagged With: AAC Device, Assistive technology, autism, Behavior, communication needs, Community, Community Building, Covid 19, crossing the street, disability, Distance Learning, Dream Big Dreams, family, meaningful participation, online school, OT, personal story, safety, school, sensory needs, siblings, SLP, visual schedule, whole life

Historia del Equipo de Ruby

December 1, 2019 by Molly Williamson

¿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!

 

Filed Under: Blog en Español Tagged With: advocacy, communication needs, dignity of risk, Dream Big Dreams, inclusion, personal story, special needs, support FACT, Tri4Youth, Volunteer, whole life

Team Ruby’s Story

November 21, 2019 by Molly Williamson

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!

 

Filed Under: General Tagged With: Acceptence, advocacy, Assistive technology, Athlete, Belonging, Building Community, communication needs, Community, Community Building, dignity of risk, donate, Dream Big Dreams, inclusion, Independence, Letter board, personal story, Rock Star, special needs, support FACT, Tri4Youth, Volunteer, whole life, Winner

Making Sense of Sensory Showings

April 16, 2019 by Molly Williamson

By Nicole Silverman

“There’s no adult special needs grocery store, restaurant, or post office.”

I’ve heard this phrase several times and it used to HAUNT me! Especially at a time in my life when I already felt like we couldn’t leave the house for ANYTHING because of my son’s behaviors and medical issues. I remember the day my husband and I called “being out in society” quits! It was summer, we had just moved into a new neighborhood and my son was 3 years old.  We were walking a few blocks to a neighborhood picnic… our first one! My son, Benjamin was in the wagon and as soon as we got to the small park with all the people – his screaming began… and didn’t stop. It felt like all 50 some people fell completely silent and were just watching us. I remember sweat literally pouring down my face and so were the tears. Nobody said hi, nobody came over to see if they could help, we were like weird aliens coming to earth for the first time. But what happened next, really sealed the “never leaving our house again” for both of us. Benjamin had severe acid reflux and when he became really upset, he would throw up! And he did… loud and lots and all three of us were covered in it. We could not leave the park soon enough. Walking quickly back to our house we decided we were done going out in public. We’d just stay home… FOREVER!

This is such a bad place to be… and if you are in this place right now in your journey you are not alone. But do not give up hope! Although it’s not for the faint of heart and it’s certainly not easy, COMMUNITY is worth it! Living a WHOLE life is worth it and your child learning to do hard things to be included in society is worth it the most!  

One of the reasons I LOVE working at FACT Oregon is how we partner with communities to provide what we call “soft landings”.  Our next one is April 28th at Northwest Children’s Theatre, for their sensory showing of Tenali, the Royal Trickster. What is a sensory showing? Basically, the lights are dimmed, the sound turned down, often times it’s a shorter time frame and ANYTHING goes. Seriously. It’s the perfect place to come and do something that might be very hard and I promise, you will not have 50 strangers looking at you like aliens! I remember our first time going to a sensory showing… just coming into the doors and taking a seat was a success for us. Literally, we left after 10 minutes. Now, we can come to the shorter plays and stay the entire time. We invite friends to go with us and practice keeping our shoes on the ENTIRE time. (my kid is still the loudest one there!)

Benjamin and our family at a sensory showing

So what happens for our family at those events that aren’t sensory? Sometimes we’re successful, and sometimes it’s really hard, dare I say disastrous.  But we are working daily towards getting to all events through many avenues. Does society need to be more accepting of those who need different supports to be involved in community? Absolutely! And I will continue to advocate and educate in every way possible. My goal as Benjamin’s mom is to never stop trying, learning, exploring ways to help him overcome some of his own obstacles and keep moving him forward with the right supports to be as successful as possible in the future.

My biggest encouragement to all families, especially with those who deal with big behaviors like we do… Don’t give up! Keep moving forward! Try it! And when it goes terribly wrong, take a break, call us here at FACT, investigate and rethink strategy… and try it again from a different angle.

p.s. My son’s 10 now… last summer at our neighborhood picnic we walked there with our neighbors/friends we now know, stayed and ate dinner and had a blast! Don’t give up! Want to join us on April 28th for NWCT’s sensory showing of Tenali, the Royal Trickster? Click for free tickets and details!

 

Filed Under: General Tagged With: Acceptence, advocacy, advocate, autism, Behavior, Belonging, Building Community, Cerebral Palsy, communication needs, Community, dignity of risk, Event, FACT Oregon, family, friends, Future, inclusion, meaningful participation, Northwest Childrens theater, personal story, sensory needs, Sensory Shows, support FACT, Supports, try hard things, When we stretch we grow, whole life, you can do hard things

The Journey to Communicate

February 18, 2019 by Molly Williamson

By Whitnie Trost

My son Chris is a young man who experiences Down Syndrome. We noticed early on that Chris was a bit different than other kids we had met who experienced Down Syndrome, but we couldn’t put our finger on why. We knew when he was born that there would be some challenges, but anyone who knows me at all would never have imagined that talking and communicating would be Chris’s challenge. I pretty much have a black-belt in talking and I have six kids who talked all the time, mostly at the same time, so there were plenty of opportunities for Chris to “pick up some tips” if you will, but still vocalization alluded him. We also began to notice that he was not super engaged and often, to be honest, seemed like the grumpiest kid with Down Syndrome we had ever met. He did not seem to have a desire to engage with other people or be involved in the way other kids wanted to be involved. He hated loud, abrupt, unfamiliar noises, and his most hated sound has always been a baby crying or screaming. At first, I thought it was just a deep compassion for the sad child, but I soon realized that nope, he was just in pain from the annoyance and would have done anything to have the sound stop.

Chris started school off okay considering. As his parents, we knew him best, so we shared as much information with the school team and troubleshot as much as possible when new things arose. But still, with all of that, Chris still had never spoken a word.

Now when I said Chris had never spoken a word, it definitely did not mean that he was not able to communicate. You only had to pay attention to all that Chris did to realize that he was communicating through his body language and certain behaviors. For example, one time my parents were watching Chris while my husband and I went on a quick trip. They said that Chris went to the trash and got a fruit leather wrapper and gave it to grandpa. That is how Chris showed that he wanted some fruit leather. Now before you call DHS on me, let me make it clear that I don’t expect Chris to be required to use trash as a means to communicate, it was just one of the first times that he let us know what he wanted by communicating …. with trash….. OK moving on.

We then started to really watch him to see if he was communicating in other ways. And of course, he was. There was the basic sign language, ‘more, eat, all done’. But beyond that, sign language never really connected with him.  He would bring me his shoes when he wanted to go somewhere, grunt really loud, throw his glasses or drop to the ground when he did not want to do something. We were amazed to see how much he really was engaged and aware of some basic communication skills. He just did not have a huge library to draw from so he stayed with those basics for a while.

Halfway through first grade, we got his progress notes from the school. Up until this time, he was in a gen ed. class for most of the day with push-in supports. But after this progress report, it was clear that the discussion of moving him to a more segregated setting was on the agenda. The progress note said things like, “he just does not feel comfortable with the other kids. He just doesn’t understand. We are afraid, his attention span is troublesome.” Long story short, for these reasons and many more, the school wanted him in a self-contained classroom so that his “extensive needs” could be met.

Something just did not sit right with me, so I asked the school to do evaluations and we went ahead and did our own private evaluation. This changed everything. We found a woman who not only had her own private practice but was a speech therapist in the Portland Public School system, so she understood what the school would and should be looking for. She said that she specialized in communication devices. I said, “you mean like a walkie talkie?” “No,” she said, “a language system for people who struggle with Communication.”

She started her evaluation process by showing Chris a ball that he would throw in a very small room. Anyone who has known Chris knows that when he was younger, he had a huge desire to throw anything he could get his hands on, so this was a dream come true for him. She gave him the ball and then when he threw it to her she put it on the shelf and waited for his eyes to move or give some indication that he was wanting or looking for the ball. She then got out an aug comm device that had several words on it and she found the word ball and pushed it and it said…. You guessed it….“ball”.  Chris’s eyes lit up. We were so excited.  After a few times modeling this action and giving him the ball once he said the word, he would get the ball.  He used his first Aug com device about 30 times that day and our world began to open.

I wish I could say that things changed overnight, but of course, they didn’t. We did many trials using different devices and ended up with a Vantage Lite. We started using it at home and were so excited to bring it to school and help them start using it. That did not go quite as planned and I believe it became a doorstop or a really heavy paperweight at school because no one knew how to use it, and you can’t use it if you don’t know it, and Chris needs support in using it so if the team did not train, they could not teach with it. So, it just sat.

We had several challenges with the school and ended up needing to do some legal things to get the school to have any sort of positive expectations for Chris. Long story short, we had an Independent education evaluation done and Chris was officially diagnosed with Autism, which is …wait for it…a communication disorder. My son was not and will never be “too dumb to learn” and he will not “suck the resources out of the room”. He needs, just like the rest of us, a way to express his wants needs, likes, dislikes, feelings, etc.

As we moved into Middle school things got a bit better with the change to a new SLP. The first month of school she said, “I really think Chris has so much to say, and he is so smart. I really want to work this year to help him have a voice.” I had never had anyone at school say something like that. Well, changes happen and of course, she got transferred to a different school. The IA’s who worked with Chris really did try but because the school pushed back on any formal training (and I must note that the company who makes Chris’s device provides free trainings to school, staff, and families as many times as you need) so the words that were focused on were the ones that Chris knew and liked most, which were food, specifically “pretzel”. So basically, it was a very expensive way for Chris to order food.

It wasn’t until we got to high school that we recommitted to strategically using Chris’s device again. The SLP at the Highschool loved working with Chris’s device and actually really knew the program and arranged not only for the IA’s to be trained but also some of the actual teachers. I was so amazed. The trainer put us in contact with a private SLP who not only specialized in training families and kids on the device Chris now has, which is an updated model an Accent 8000, but comes to the house so she can work with Chris in his own environment. He has grown so much. What I loved most is that the trainer, the school SLP and our private SLP focused on modeling with the device, which essentially means, we talked with Chris using his device over and over again all throughout the day and then help him respond, or correct when he needs. Just like a toddler learns to talk by listening and watching over and over several hundreds of times, Chris needs to do the same, so we model, model, model. If he uses his body or points to something or uses the one sign language motion that he created to mean every word in the English language, we say “say that out loud” or tell me about that” or can you use your talker”? Then we respond back using the device to talk as well as our voice.

A few examples of the amazing changes that have happened are Chris was watching a movie and as a commercial came on, my husband began channel switching. Chris got up and got his device and pushed the words “television Help”. In other words, he was saying “dad change it back to my show”. He, of course, loves to use it to request food all the time, but now it is not just the word pretzel or milk, it is “want eat make eggs.” Then I can model “ok, do you want 1 or 2 eggs” using the device.  The school has been awesome as well. Jeff, our learning specialist, worked with our school SLP to create a functional communication goal as well as including his device use in all of his goals. He is included in gen ed for 70 % of his day and his device now give him a way to understand the modified curriculum better. We also use it at Church. We trained his youth group and created a page with easy to find “church words “so that they can be easily modeled.

Chris is more engaged and now he looks into our eyes more and acknowledges that we get it. When we use the device to explain that we know what he wants or does not want, or to ask a question, he lights up. He is trusting that we will try, that we will validate, and that we may not agree but we will let him know we understand. When we don’t agree, he is much more patient and with modeling on the device, he will change directions and be willingly redirected.  Sometimes I get discouraged and think this is all taking so long, but then the other day, I modeled I love you. He leaned over and typed in “Thank you.” He then leaned forward and let me kiss his forehead.  I mean what else do you need, right?!

Filed Under: General Tagged With: AAC Device, advocacy, Assistive technology, autism, Belonging, Better together, Communication, communication needs, Community, Complex Communication, dignity of risk, down syndrome, Dream Big Dreams, effective communication, General Education, have a voice, IEP, inclusion, non verbal, One Page Profile, person centered, personal story, Program Classroom, sensory needs, sign language, Special Education, Vantage Lite, When we stretch we grow, whole life

The Northwest Access Fund

February 18, 2019 by Molly Williamson

Looking for Affordable Financing for Assistive Technology or Home & Vehicle Adaptions? The Northwest Access Fund is here to help!

Nationally, it is estimated that more than 50% of all purchases of assistive technology (“AT”) are funded by individuals using their own resources.  If you are an individual with a disability or you have a family member with a disability, this comes as no surprise! It is so frustrating to find something that seems “perfect” for you or your child but you have no way to pay for it – or the agency or program that “should” pay for it is dragging its feet.

The Northwest Access Fund was established by and for individuals with disabilities to address such issues. Our goal is to provide an affordable and time sensitive option for paying for assistive technologies.  It has been active in Washington since 2004 and recently expanded to Oregon.

The Fund offers low-interest loans for all types of assistive technology and home and vehicle accessibility modifications. Loans of up to $25,000 are available for assistive technology, including modified vehicles, and up to $35,000 for home modifications. The interest rate is 5% for the lifetime of the loan. Eligible applicants include individuals of all ages with disabilities of all types  — and their families.  A majority of our clients are low income.

Assistive Technology is broadly defined to include any device that maintains or enhances the functional capabilities of a person with a disability — whether it is specially designed for a person with a disability or off the shelf.  Examples include (but are not limited to) hearing aids, wheelchairs, ipads, iphones, computers, and recreational equipment such as adaptive and tandem bikes (the latter being a great option for folks who are visually impaired or need mobility assistance).  Loans also can be used for related services such as evaluations, training, maintenance, and repairs.

Loan applications are available online or by calling the Access Fund.  Loans are generally processed within two weeks from the time the application is completed.  Smaller loans (less than $1500) are typically processed in a few days.

Questions? Call us! We’d love to talk. 1-877-428-5116

Filed Under: General Tagged With: Adaptive equipment, affordable, Assistive technology, AT, Building Community, communication needs, financial help, Home accommodations, meaningful participation, Nothwest Access Fund, self-advocates, special needs, travel accommodations, Vehicle accessibility, whole life

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