FACT Oregon

Empowering families experiencing disability.

personal story

Rae Lyn Jones’ Story

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Did you feel nervous on your child’s first day of school? Do you struggle to articulate a vision for the future while attending to your child’s day-to-day needs?

You’re not alone. Read Rae Lyn Jones’ story:

Family standing together and posing for a photo
Rae Lyn Jones and her family

“FACT Oregon has been an important part of our life since Liam started kindergarten. Liam has complex disabilities associated with cerebral palsy, including quadriplegia, a brain injury, and a long list of complex health complications. 

My anxiety level was through the roof when I imagined what Liam’s school day might look like. Thankfully, I attended FACT Oregon’s class on Transition to Kindergarten. It gave me insight on how to talk to Liam’s school team. I felt empowered to advocate for the desires we have for our son’s school experience. We wanted Liam to be in a general education classroom with his non-disabled peers. 

At our first school meeting, we got pushback. The school team suggested Liam be in a medically fragile classroom with the nurses. But Liam is just like any other boy his age. He feels the same. He has the same interests and desires. I couldn’t think of any good reason to exclude him from his peers. I called FACT Oregon and spoke to an encouraging Family Support Specialist. She helped me understand and better articulate that our desire for Liam to be included in general education was in line with the intent of IDEA (The Individuals with Disabilities Education Act.)

Flash forward to today. Liam is in 5th grade and included in a general education classroom with his non-disabled peers. He has a nurse with him during the school day to meet his medical needs. Most importantly, he is thriving. Liam’s classmates are growing into compassionate, kind, empathetic kids by being with Liam. They want to help him be part of it all. They push his wheelchair, help him access things in the classroom, read with him, watch out for him, include him. Liam is by all definitions just one of the guys! Thank you, FACT Oregon for providing me with the tools to help my son succeed in his school environment.”

 

FACT Oregon’s Family Support Specialists are highly trained to support families and connect them to resources and information on special education, disability services, behavior, assistive technology, visioning, planning for adulthood, and more. Our staff are parents of youth experiencing disability. We support families in English and Spanish every day and work through interpreters in many other languages.

In 2018-19, FACT Oregon connected with families like Liam’s 9,480 times to address their unique and individual situations, a 31% increase over last year!

If you value peer-to-peer support and believe that every family should be able to reach other parents for knowledgeable, empathetic support, 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 special 1:1 match of first-time and increased gifts!

 

It’s the Little Things

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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.

The Next Chapter

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By Melissa Fisher

With Ben’s permission, I want to share a little backstory on parenting a kid with a high IQ, diagnosed with ADHD at the age of 6. I’m doing so because I want to convey a message of hope to parents who are in the thick of managing a kid who in their atypical being, have a very hard time conforming to the structure and expectations of the public school system.

Last night I watched my son walk across the auditorium stage to receive the President’s Education Award, Honors stole, National Honor Society blue and gold cord, and OSAA Activities Scholar award. As I watched, inside me a wave of memories and emotions swelled up. I recalled every test at the Children’s Program, every meeting with the child psychologist, every conversation with a teacher, principal and school counselor to coordinate how we could ensure Ben would be successful. And by success, I articulated early on to all of the professionals, I meant that Ben would enjoy his school experience.

That goal was NOT easy to achieve— especially in grade school. He was disruptive, argumentative, non compliant, and would not sit still. Ben did not thrive in that structure and struggled to maintain interest in what was being taught. He took Adderall and I felt horrible about it, but without it, he couldn’t complete tasks and his handwriting illegible. In one parent/student/teacher meeting in 5th grade, his teacher shared with me that his handwriting had to improve, to which Ben confronted, “Why? There are keyboards and smartphones and I don’t need that skill to write.” Mic drop. The next week, Ben received a sort of laptop that he used until his sophomore year of high school.

Ben was on an IEP all through school. It was vital to his success, but it was critical that I was persistent and advocated for my son’s ongoing needs. I routinely scheduled with his newly assigned grade school teachers a week before school started a “Get to know Ben meeting.” I shared what worked at home and encouraged them to tell me what they discover works for them.” We were all a team and we would succeed together.

Young man holding diplomas and honors at graduation and wear graduation robes
Ben at his graduation

But I must give credit where credit is due, IT’S ALL BEN. HE made incredible progress and HE worked extremely hard. He wasn’t being defiant to be disrespectful, he needed something different than was being offered and challenged and changed us all. I learned how to parent because of him, and in some ways I wish I had received a set of cords last night to represent my own parenting achievement. Thank you Ben. Thank you for applying yourself. Thank you for staying true to WHO YOU ARE. Thank you for not giving up and working so incredibly hard. You said it aptly last night, “This is just the end of a chapter and I’m on to the next one.” Yes you are my dear boy, and I cannot wait to see it unfold. I love you with all my heart and soul.

Son and mother standing together for a photo
Ben and his Mom Melissa

Alex, our Hero!

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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!

 

The Sweet Taste of Victory

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By Carol Bunten

Raising 2 children who experience disability has its challenges. Swim lessons were a particularly Sisyphean task for us. We spent weekend mornings watching my children roll their boulders of fear up the mountain, only to have them roll back down again, year after year, with little progress and an ever-changing cast of befuddled instructors.

Because 71% of the Earth is covered with water, however, quitting wasn’t an option. In my heart, I believe that my kids can do anything with enough encouragement. So we signed them up for a triathlon, even though swimming features prominently and had been a source of anxiety and frustration for years.

The FACT website suggested that there would be a “wide range of options for supporting athletes as they complete the course,” including flotation devices, different types of bikes, and competing on a team with family and friends. I figured that with a lot of options we would find some way to get my kids 50 meters across the pool, hopefully without tantrums. Then, somehow, on a bike and then jogging. No problem! What could go wrong? Little did I know how much could go right!

I spent the first Tri for Youth on the bike course, first aid kit in hand in case any mishaps arose, while my husband supported my son and daughter. Despite my emergency preparedness, I was unprepared for the overwhelming sense of pride I felt watching the athletes and the battalion of volunteers cheering them on. My heart exploded, and tears poured from my eyes for three hours, witnessing successes of the athletes, all morning long. Somewhere in the middle of it all, my slightly damp 7 year old son raced by, alone on his bike, all smiles. He was so delighted by his accomplishments , and the freedom to speed ahead amidst all of the supporters, that he tried to joyfully tell me all about it as he whizzed by and promptly hit a curb, falling and scraping his knee.

He was still so proud of himself that he gamely got up, dusted himself off, got some first aid, and pushed through. He couldn’t wait to get to the finish line. So many previous obstacles had been met with frustration (and intolerance of his frustration). This time, magically, he just keep going without a fuss — even though he needed a pretty big bandaid.  My tears doubled. Fortunately the first aid kit spent the rest of the day neatly tucked at my side, minus a few Kleenexes.

Boy riding a bike
Note the big smile (and big bandaid)

At the end of that first All Ability Tri4Youth, my whole family felt like we had accomplished something major. We all felt a new sense of confidence. The kids tried something that felt impossible, and found it to be possible, with the right support. They built on this success, and were motivated to get themselves across the pool in the next triathlon just with the power of their own bodies (and maybe one kickboard and a noodle, just in case, but GREAT PROGRESS WAS MADE!)

These past 2 triathlons will be something I remember for the rest of my life.  I know that these experiences have provided a sense of accomplishment for my children, who don’t always feel capable and secure in themselves in the world. Two years later, they have built on these successes and lessened their fears enough to demand a trip to Great Wolf Lodge to try out the waterslides, of all things.

The mission of FACT Oregon is to empower families experiencing disability in their pursuit of a whole life. I’d say: Mission accomplished.

Register for the 2019 All Ability Tri4Youth!

 

Family posing for a photograph
My family and I at the finish line!

Making Sense of Sensory Showings

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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!

 

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

(503) 786-6082 or 1 (888)-988-3228