By Executive Director, Roberta Dunn
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 20th 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!
In thinking about preparing for adulthood as your child nears the end of high school, Portland State University’s Career and Community Studies program provides an inclusive, four-year college experience that fosters meaningful employment, independent living skills and self determination.
Learn more about the program, and what current students and parents have to say:
College student Massoud Beardsley is a sophomore in Career and Community Studies at Portland State University. Side-by-side with other PSU students, Massoud has completed courses such as Health, Happiness and Human Rights; Creative Writing; Popular Culture; and Introduction to Acting. Massoud also works part-time at the PSU Recreation Center along with other PSU students. He loves baseball and belongs to the PSU Baseball Club, competing with teams from other NW colleges. In his spare time, he hangs out with friends, and they enjoy a variety of activities on and off campus.
Currently, there are 20 college students in the CCS program. The first group of five students will graduate this year, receiving their certificates and participating in commencement.
Employment. The CCS faculty and staff have supported every student to gain inclusive competitive wage employment within their first year of the program. Students receive individualized job development and job coaching. Students work alongside other PSU students in jobs such as campus child care, groundskeeping and facilities maintenance, the Recreation Center, the Vikings Pavilion, the bookstore, and the library. Some students also work for off-campus employers, such as Target, Smith Tea, Moda Center, and Northwest Disability Support. During their third and fourth years, CCS students focus on achieving employment prior to graduation in a career-focused job that matches their interests, outside of PSU.
Academic Courses. Every student is supported by the CCS staff, academic coaches (who are graduate students in education), the PSU Disability Resource Center, and the faculty, to complete academic courses with other PSU students. These academic courses are selected by the student, based upon their interests and career goals. CCS students complete one or more courses in University Studies along with other PSU students, such as Portland; Immigration, Migration and Belonging; Families and Society; and others. Students have also selected courses offered by a variety of other PSU departments, such as Public Speaking, Introduction to Acting, and Introduction to Child and Family Studies. Additionally, students enjoy classes such as Salsa Dancing, Weight Training, and University Choir.
Independent Living. CCS students learn independent living skills as they navigate the campus, manage their individual schedules, and use email and text messaging to communicate. As Maddy Schumacher, a CCS junior, described her activities for one term, “I took Immigration, Migration, and Belonging,..I worked at the PSU Rec Center! …I prepared for meetings and class and work and [got to my appointments] on time.”
Campus Life Activities. CCS encourages students to become involved in campus life, including social, athletic, recreational and volunteer service activities. Each CCS student can choose to have a “peer navigator”, a PSU student who joins the CCS student in exploring and engaging in campus activities. Here is how Maddy outlined some of her campus life activities, “I hang out with [my peer navigator] and eat lunch and play games with [friends]. I went snowshoeing and kayaking with PSU Outdoor trips!”
Asya Beardsley, mother of CCS sophomore Massoud Beardsley, described his activities with his peer navigator, “Massoud and his peer navigator have volunteered at the food bank together, they got massages together…they’ve gone to PSU basketball games, they went to a Trailblazers game… they’ve gone to yoga…They don’t end up always doing the same thing. They’ve really intended to do something really fun and different, something she would like or something he would like.”
Outcomes. Parents have observed positive outcomes for their sons and daughters who are participating in CCS. Conrad Schumacher, Maddy’s father, explained, “Almost everyone that sees Madeliene says, ‘Oh my gosh, what has happened?’ The growth that she’s made is just phenomenal. I can see this as a…father…, but when I see old friends that haven’t seen her for a while or my mom who sees her every once in a while, [they see] these great strides…, that’s that sign of high expectations – that sort of high, reasonable expectations [of the PSU CCS Program] and she is really responding to those…This constant growth in really all ways, but especially in her ability to sort of navigate the complexities of the world.”
Rachel’s mother, Ann Esteve, remarked, “…it hasn’t just been an experiment, it’s been a genuine college experience. In the past we thought maybe community college or some classes, and it’s kind of a mind-blower that she’s here at PSU.”
Advice for new CCS students. In recent presentations, two CCS seniors, who will graduate in 2020, gave advice for beginning CCS students.
Will Larson remarked, “My advice to a first year student is don’t give up. College might be difficult at times but we are all smart, you can do anything you put your mind to it. If something’s hard use support like teachers and mentors, but more importantly the CCS Program always can help.”
Rachel Esteve exclaimed, “My advice for you is to be yourself. And have fun with it.”
Not ready to apply? You can learn more by attending an upcoming INFO NIGHT!
Have you ever struggled to participate in an activity that was inaccessible to you? Have you felt or seen the tears, frustration, and sadness that result?
At FACT Oregon, we interact with families every day whose children are told they can’t participate. Or only in a limited way. Or only in a certain place. Or only if it’s not “too hard.”
FACT Oregon created the All Ability Tri4Youth to provide youth with and without disabilities an opportunity to compete together in a triathlon open and accessible to all. Participation in community sports and recreation is a key aspect of pursuing a whole life for many families. All our kids deserve to participate in a way that celebrates their effort, recognizes barriers, and addresses their needs so that they can be successful.
Read this story from Angie Sims about her daughter’s experience:
“It is often difficult for Ruby to participate in organized sports or events. She has a hard time following concepts and directions. Ruby has several diagnoses that help explain why Ruby “does life” a bit differently — epilepsy, autism, ADHD…but for us, it’s just Ruby! This year Ruby, participated for the first time in FACT Oregon’s All Ability Tri4Youth. She had fun, and so did we!
Ruby succeeds best when she can watch and then do and when she is familiar with a venue. Thankfully, FACT Oregon allowed participants to come the day before to drop off bikes, see the facilities, and look at the course. They shared a social story and communication board, and we watched a video about the event. We talked about how everyone participates differently. Ruby felt very independent and empowered participating with her teammate and caregiver Dawn while we cheered her on from the sidelines. Although she was nervous, she was also excited, and with everyone cheering for her, Ruby felt like a star! She was able to take that energy and stay focused through the finish line.
At the All Ability Tri4Youth, everyone is a winner. Every participant is genuinely supported, and the event is relaxed, sensory friendly, and with no expectations except to have FUN. And really, that is our main focus in life. At other events, we feel the need to explain Ruby’s behaviors or teach her social norms she doesn’t fully grasp. But at FACT Oregon, we just see acceptance.
For us, the All Ability Tri4Youth is a fun way to be a part of something bigger. It is truly magical to be involved in a community that allows us all to recognize life for what it really is. I give thanks for Ruby leading me to this place in life and thank FACT Oregon for the ongoing education, support, and unique events to allow us to come together and witness greatness in all of its forms!”
But FACT Oregon needs your help. The All Ability Tri4Youth is one of many ways we support families and connect them to resources and community. Our trainings and peer support line help families get information and guidance on special education, disability services, behavior, assistive technology, visioning, community access, planning for adulthood, and more. This year, we are traveling across the state with our free day-long Regional Learning Summits. And our support team is busy connecting with families by phone and email in English and Spanish, and working through interpreters in other languages.
If you value being part of a community that, as Angie says, “allows us to come together,” 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 1:1 match of new and increased gifts!
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:
“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!
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.
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.