Empowering families experiencing disability.
By Lucia Alonso
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.
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!
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.
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!
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.