FACT Oregon

Empowering families experiencing disability.

autism

¡Esto es para tí, Christopher!

by

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!

by

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”

by

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.

It’s the Little Things

by

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.  

Two men, one with glasses, smiling and posing for a selfie together in front of a fence
My sons Cooper and Chris, post-haircut

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.

Alex, our Hero!

by

By Lucia A.

When Alex was diagnosed with autism back in March of 2009, our whole world came crashing down on us. With his diagnosis came a lot of no’s, closed doors, never’s and many people walked away. But regardless of who was by our side, we always had thing for sure, our will to keep fighting for our son. We knew we couldn’t give up, we kept knocking on doors until one opened. Alex has so much potential, we just needed to find people who believed in him as much as we did. FACT Oregon did just that, last summer we attended their triathlon (the All Ability Tri4Youth) and one of our biggest dreams for Alex came true.

Alex was so happy and excited to be a part of it, he had it saved in his calendar for months since he found out about it. He counted down the days until it was time to be part of the big event. As his mother I truly didn’t know what to expect, all I knew was that I was immensely happy and grateful that we were part of such a beautiful event who welcomed our son and saw him as the amazing soul that he is. Our best friends and immediate family were there to cheer Alex on, which meant the world to me. Alex and his sister were both participating, our daughter was so proud to be running along side her brother. Seeing her supporting him in such a way warmed our hearts and reminded us that all of the pain we have been through has made us that much closer.

We swam, we biked and ran as a family, we supported each other along the way and at each end point, we knew we were that much closer to the finish line. As we moved along in the race, seeing so many volunteers cheering us on gave us such an amazing feeling, we felt we were accepted and supported. Which in our world, means more than anything money could buy. The FACT Oregon All Ability Tri4Youth gave us a day to remember, gave us hope, gave us a day to celebrate our son. It reminded us that he is so worthy and capable of so much if given the chance to prove his skills. We are so grateful to FACT Oregon for hosting such a beautiful, inspiring event, we can not wait for the 2019 All Ability Tri4Youth where we will make more unforgettable memories.
Mother, father, son, and daughters standing in front of FACT Oregon banner at the All Ability Tri4Youth finish line
Alex and our family at the finish line!

 

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

(503) 786-6082 or 1 (888)-988-3228