What an amazing day we had! The first annual All Ability Tri4Youth, which was also the first EVER all inclusive triathlon in Oregon and the only the second in the country, was a huge success! On Saturday, August 12th, 95 athletes raced their hearts out and showcased their athleticism, enthusiasm and spirit! This event had it all- wonderful athletes, 75 incredible volunteers, good weather, and a family fun party!  We here at FACT Oregon left the day feeling inspired and excited for next year’s Tri4Youth!

We want to give a very special thanks to Tualatin Hills Parks and Recreation Districtfor partnering with us on this event and to our sponsors, Minuteman Press of Beaverton, The Portland Trailblazers Foundation, Nike, OnPoint Community Credit Union, and Salem Health Hospitals & Clinics. We also want to give a HUGE shout-out to the incredibly talented photographers, Paloma Ayala and Ken Rumbaugh, who captured so many special moments during the tri featured in this email.

We will be posting more Tri4Youth photos and athlete race times on our FACT Oregon Facebook page throughout the week, so stay tuned!

Tri4Youth Award Winners

Spirit Award: Amanda Ankeny
Amanda supported two teams and completed the tri twice, not an easy feat! Go Amanda!

Fundraising Award: Team Minions
Team Minions fundraised $1,665.40! Bravo to Captain Benjamin Silverman, Ella Houston and Gordon Thomas!

July 25, 2016

By Nicole Silverman, Field Program Assistant

My one and only child just turned 8! His recent antics have included turning on the light switch in his bedroom at all hours of the night. My husband and I are exhausted. But it’s hard to get too upset with my son who wasn’t even supposed to be able to sit up, let alone crawl over to the wall, pull himself up to a stand, AND flip on the light switch!

“Maybe we need a social story on when it’s appropriate to use light switches?” I asked.

“I can build a special guard that we can put over the light switch at night,” my husband offered.

What great ideas – if only we weren’t so tired! Then it happened… it got really, really hot here in Portland. One evening, when I was putting Benjamin to bed, I decided I wanted the light to be off but his ceiling fan to be on. And that, my friends, is when I had my “AHA!” moment.

You see those two strings hanging from the ceiling fan? That would be my answer to 6 months of missed sleep, getting up multiple times a night, putting my kid back in bed, and turning off the dang light. With one pull of that string, the light goes off, and until I pull that string again, no matter how many times my son flips the light switch… no light will come on. I started hysterically laughing. I called my husband up to the bedroom. “You are not going to believe this!” as I’m pulling the string with the light going off and on. We died laughing. I think there’s a label for this – something like, “Overwhelmed, Tired Parent Syndrome.”

That night as I was lying in bed still flabbergasted at what we didn’t see right in front of our faces for 6 months, I started thinking about other things we probably weren’t seeing. OKAY. Okay! Perhaps it is time to take some deep breaths, maybe a little more self-care, and just a remind myself to slow down and look at things differently from time to time.

I know you’re all thinking: who really has time or money for self-care? I recently attended a self-care session where the facilitator told us that sometimes the first step of self-care is the 5-minute list. In reality, most days that is all the time we have. The facilitator had us write a 5-minute list, a 30-minute list, and an all-day, dream-come-true list. My 5 minute list includes:

• Taking a minute to put good-smelling lotion on my hands
• Smacking on some bubble gum
• Sitting down with my golden retriever for some snuggles
• Taking a fun snapchat with my son
• Stretching a few times a day
• Sipping on hot (not reheated three times) coffee

This list might sound ridiculous, but some of these small things make me so happy. They reset me. The tension in my neck and shoulders reduces a few notches. I’m going to start integrating them into my day! This instantly reminded me of my son’s sensory diet. He needs sensory support throughout the day to help keep him regulated, and it seems I do too! Guess we are all more alike than we are different. But we all know that already, don’t we?

So what’s going on your 5-minute self-care list? Jot some things down right now! I have to go clean the bathrooms, tell my son to quit touching the TV for the 10^th time, and call our insurance and figure out why they stopped covering my son’s medication. But first, I’m going to smack on some bubble gum, pet my golden retriever,  and take some deep breaths… then I’ll conquer the world!

The facilitator who got me started on my 5 minute list: Mara B’s website: www.belavidahealth.com

May 23, 2016

By Loreta Boskovic, Information Specialist

An incident made its way around the Portland Metro region last week which caught the attention of a state senator. Jade, a middle school student who experiences disability, was physically sidelined from the rest of the school choir as it practiced for a performance (shown here in a photo).  To make matters worse, even her name was sidelined in one version of the program; later school staff corrected it, but from the layout of the revised program, it was clearly added as a second thought (i.e., out of alphabetical order and the line spacing was off). The message? You may be here, but you’re not a part of this group.

The local disability community was, as one might imagine, outraged. Parents who know Jade’s mom, a long-time activist in the Retts syndrome community, felt her hurt. Families with children who rely on wheelchairs voiced their practical suggestions on how easily Jade could have been included with her peers. Oregon Senator Sara Gelser contacted the school board and superintendent, noting her concern and citing other cases she is working on in which students experiencing disability are being pushed out of their school community. In other words, a village rallied.

While it may be easy to focus on Jade’s wheelchair and make assumptions about her ability to participate, let’s not forget that wheelchair dancesport has been around for many decades, with the first competition held in 1975. Paralympians pack stadiums every four years, second only to the Olympics as the most popular world sporting event. And performance artist Sue Austin mesmerized millions with her piece “Creating the Spectacle!” where she choreographed deep sea diving in her powerchair. Strictly speaking, Jade was not pushing boundaries by expecting to be an active participant in her school’s choir.

How did the community at large respond?

• Even though Senator Gelser contacted the district’s school board and superintendent, the only person to contact Jade’s mother after the incident was the head of special education. Again, this event was an extracurricular activity open to all middle school students. The message? It is up to the special education department to create inclusive settings, not school staff.
• The story made the local news. Here the message was conflicted. For every comment like this one: “Awful. Put all the kids TOGETHER on a surface each of the kids can access. If they have to perform on the floor, in front of the stage, so be it. That picture makes my heart hurt”, there were twice as many opposite viewpoints: “so what, not like she could dance … come on … seriously …. everybodies (sic) life doesnt (sic) have to change to adjust for one … life is hard … stop being a bunch of whining pansies and deal with the hand life left you.”

Was Jade blatantly excluded, or was her family expecting too much inclusion?

According to a district spokesperson, “For any kid whether they have a disability or not, we want them to feel welcome and invited.” Likewise, neither the parents nor Senator Gelser believe school staff intentionally sidelined Jade out of malice – rather, they believe it was out of ignorance about inclusive practices and a reliance on long-held beliefs about the lack of competence in people experiencing disability.

Let’s take another example of how attitudes about inclusion are messaged to a child’s community.

At FACT Oregon’s recent Dream Big Dreams fundraising event on May 19, event organizer and board member Coleen Carey shared a photo she snapped last fall at her daughter Julia’s elementary school open house. Coleen was disheartened to discover that Julia, who is in a general education classroom, was separated from every single one of her typical peers both literally and geographically (Hello, Team Antarctica??) for a class reading program. Instead, she and her educational assistant, a middle-aged woman, were their own team.

Would it really have been that difficult to include Julia on one of the other teams? More importantly, what is the message her classmates are learning about their peer who happens to have a disability?

Basically, it all comes down to one thing: how is one’s attitude about inclusion messaged? 

As many families have experienced firsthand, it’s not enough that a child experiencing disability is in a general education classroom. Inclusion is not just physical proximity to typical peers, but a philosophy that shapes one’s attitude about that person’s intrinsic right to have a place in their community. And attitude, as they say, is everything.

Clearly, we have a ways to go before inclusion of children experiencing disabilities is a natural practice successfully implemented by general education teachers and special education staff. “Can you imagine,” wrote Senator Gelser in response to the school district, “if the student in the photos was a student with a hijab or a student of color instead of a student with a disability? I imagine the response would be more vigorous and more appropriate. Exclusion of a student with a disability is as shocking and immoral as exclusion of a student of color.”

Evidently, many in the community at large continue to believe that disabled means different/less than, and that families shouldn’t expect their children to be fully included because that means the status quo would have to change. Sadly, these sentiments have been around for decades, and were aimed at students of color. It wasn’t until Brown v Board of Education that the disability rights movement found its footing and started to initiate change.

We have a ways to go still. FACT Oregon will continue to work relentlessly to educate, empower, and equip families and caregivers to change the world around them. Thankfully, there are many who seethe value of transformative change:

I can’t imagine the pain of seeing my child this marginalized, literally – on the very margin of the action frame– when there is so much that could be done to bring her into the group while enlarging the humanity of the other students, the teacher, and the audience for whom they performed.

Let’s keep finding each other in the crowd and transform attitudes about disability together! We’d love to hear your stories of inclusion below in the comments.