Molly Williamson

Here’s to you, Christopher!

May 29, 2020 by Molly Williamson

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!

Mi “Secreto” de Aprendizaje a Distancia

May 1, 2020 by Molly Williamson

Por Karen Houston

¿Qué es una participación significativa en la escuela a distancia para su hijo/a con una discapacidad en estos días? Tal vez tenga un/a hijo/a que pueda participar en videollamadas con su maestro/a y luego completar hojas de trabajo y otras tareas con su ayuda. Puede ser más como mi hijo, que le cuesta participar en un entorno regular de cuatro paredes con asistencia personalizada y ahora se espera que complete la escuela en línea. Quizás su historia se encuentre en algún punto intermedio de estos ejemplos. Dondequiera que se encuentre en el espectro del aprendizaje en línea, para los niños con discapacidades, lo único que todos los padres tienen en común es que de repente nos hemos convertido en el único maestro para nuestros hijos/as. Mi hijo tiene diez adultos en su equipo de IEP en la escuela, si DIEZ. En casa, con mi esposo trabajando, soy solo yo; una persona. Me he convertido en SLP (patóloga del habla), OT (terapeuta ocupacional), especialista en comportamiento, maestra de educación general y especialista del aprendizaje, solo por nombrar algunos. ¿Cómo cumplo todos estos roles y me aseguro de que mi hijo participe significativamente en la escuela en línea junto a sus compañeros? Bueno, le contaré mi secreto:

“No lo hago.”

Simplemente no puedo. Me alejé de mi trabajo en FACT Oregon durante este período de tiempo sin precedentes, para concentrarme en mis hijos y asegurarme de que estén seguros, alimentados, saludables y también educados. Tengo la suerte de poder aprovechar este momento con ellos. Mi hija se mete a su clase de Google, hace sus tareas y maneja su propio tiempo. Mi hijo toma cada segundo de mi día y todo el tiempo que tengo. Tuve que decidir desde el principio cómo manejar todas las videollamadas, correos electrónicos y tele-terapias que llegaban hacia mí desde todas las direcciones. Todos querían ayudar. Todos querían asegurarse de que no se quedara atrás. Mi corazón se llenó con todas las ideas y la atención que la gente estaba dándole a mi hijo y a mi familia, pero sentía que mi cabeza iba a explotar.

Así es que, leo los correos electrónicos, asistimos a su clase en línea todos los días y luego simplemente hacemos nuestras propias actividades. Él escucha libros y yo le leo todos los días, algunos días son 10 minutos en total y en un buen día una hora. Escribimos en su teclado adaptado cuando está de buen ánimo. No tengo idea de cómo abordar las matemáticas de una manera significativa. Seguimos un horario visual, pero en los días difíciles lo seguimos con más libertad. No me cuestiono porque él no participa significativamente en la escuela en línea, porque estoy demasiado ocupada celebrando las otras cosas en las que estamos trabajando que no tienen nada que ver con la escuela.

woman and boy at kitchen table looking at laptop computer and using AAC device

Un ejemplo son los paseos por el vecindario. Antes del COVID-19, cada vez que mi hijo salía por la puerta, solo quería subir al automóvil e ir a algún lado. Si intentábamos dar un paseo por el vecindario, gritaba y se tiraba al suelo. Cuando salió la orden de quedarse en casa, supe que ambos tendríamos que salir de la casa, incluso si era solo para dar una vuelta a la manzana, si es que queríamos mantener la cordura. Las dos primeras caminatas no fueron muy buenas, pero en la tercera caminata ya se estaba divirtiendo. Trabajamos para que él llevara su dispositivo de comunicación (AAC), deteniéndose y mirando antes de cruzar la calle y saludando a los vecinos (a 6 pies de distancia). También estamos aprendiendo cómo hacer las cosas de la casa, vestirse y cepillarse los dientes de forma independiente, usar y llevar su dispositivo de comunicación (AAC) todo el día y andar en bicicleta. Nuestra familia comenzó una cena de Dispositivo de Comunicación (AAC) donde todos tienen que usar un dispositivo y un programa para comunicarse, ¡sin hablar! Tantas cosas que siempre hemos hecho por él en vez de hacerlas él, porque teníamos prisa y no teníamos tiempo. Ahora lo que más tenemos es tiempo.

Family outside on sidewalk, father holding son as he rides a bike, daughter walking behind them.

Tener un hijo con necesidades de comunicación y necesidades sensoriales significativas hace que la escuela en línea sea extremadamente difícil. Sin embargo, la situación de estadía en casa en la que nos encontramos actualmente también nos brinda oportunidades que nunca antes habíamos tenido. Estamos haciendo nuestro mejor esfuerzo para participar en la escuela en línea de manera significativa, pero estoy mucho más entusiasmada de su gran participación como familia.

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.

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.

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.

Let’s change the narrative this year for MLK Day of Service!

January 13, 2020 by Molly Williamson

By Executive Director, Roberta Dunn

Maslow's Hierarchy of Needs pyramid: Self-actualization, esteem, love/belonging, safety, physiological — Maslow’s Hierarchy of Needs

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 20^th 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

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Molly Williamson

Here’s to you, Christopher!

Mi “Secreto” de Aprendizaje a Distancia

My Distance Learning “Secret”

Let’s change the narrative this year for MLK Day of Service!

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