• Skip to primary navigation
  • Skip to content
  • Skip to primary sidebar
  • Skip to footer

FACT Oregon

Empowering families experiencing disability.

  • Home
  • Need help?
    • Comprehensive Distance Learning
    • COVID-19 Response and Resources
    • Community Building
    • Developmental Disability Services
    • Just for Youth
    • New to Disability
    • Preparing for Adulthood
    • Special Education
    • Support Line
  • What we do
    • All Ability Tri4Youth
    • Feature Stories
    • Dream To Go Far Storybook
    • Newsletters
    • Person-centered One Page Profiles
    • Professional Development
    • Regional Learning Summits
    • Support Line
    • Upcoming Trainings
    • Online Trainings
  • Who we are
    • Accessibility Statement
    • Board
    • Diversity, Equity, and Inclusion
    • Mission, Vision & Values
    • Reach & Impact
    • Staff
  • Get involved
    • Become a Monthly Donor
    • Corporate and Foundation Support
    • Log in to your Account
    • Special Events
      • All Ability Tri4Youth
      • Dream Big Dreams
      • Regional Learning Summits
    • Subscribe to our Newsletter
    • Volunteer
      • Apply to be a volunteer!
  • Donate
  • En Español
    • Reportajes en Español
    • Boletín Informativo

christyreese

Utilizing Your Personal Support Worker This Summer!

May 19, 2017 by christyreese

By Nicole Silverman, Program Coordinator

My son recently attended a community event with his personal support worker [PSW]. I arrived later, and walked in to see my son surrounded by several other children throwing a ball around with him. His PSW was standing several feet behind Benjamin, and when one of the children would ask a question about Benjamin, she would rephrase the question to him.

Child: “How come Benjamin doesn’t talk?”

PSW: “Benjamin, do you talk? Do you like playing ball with your new friends?” Benjamin clapped and waved his arms and legs in excitement.

PSW, to the child: “He is talking to you; he just uses his voice and body instead of words.”

Child: “Can Benjamin go down the slide with us?

PSW: “Why don’t you ask Benjamin?”

Child: “Benjamin, would you like to go down the slide with us?”

Benjamin claps and yells with excitement, and reaches his hands up to his PSW so she can assist him to the slide.

Next thing you know, Benjamin’s PSW is standing near the slide for safety, but Benjamin’s friends are helping him access the slide.

It hasn’t and won’t always go so smoothly…It’s taken all of us time to learn our roles and how we can best support Benjamin. Here is what I have learned and would share with other parents:

  • The ultimate goal of a PSW is to work themselves out of a job. For example, when you’re out with friends and walking into the movie theater, your child’s friends can push his wheelchair or go find seats together. You don’t need a PSW in that moment because all the kids are riding/rolling into the movies together.
  • No “helicopter” PSW’ing, please! It’s normal to want your child’s experience to be the best possible and avoid awkward or hurtful situations, but the truth is, letting your child figure it out as independently as possible will stretch and grow you, them, and your PSW! You will not be there for every awkward situation: start teaching your child now how they can navigate all of this on their own.
  • Model how to talk to the child you are supporting. When people ask you questions instead of the person experiencing disability, it reinforces an attitude of not presuming their competence. This is a great opportunity to model the respect and dignity they deserve in being asked questions directly. (Yes, even if they cannot verbally give you an answer! Presume that they understand everything that’s being said to them.) Redirecting or rephrasing the question can take a little practice, but soon it will become habit!
  • Role play with your PSW. What is their role in helping your child in community? When should they jump in, and when should they let things play out? This is an individual decision based on your child’s individual needs.
  • Blend in. Even when an individual experiencing disability requires significant support, a PSW should play the role of being almost invisible. They are there to assist with support needs, but everyone should see and interact with the person experiencing disability, not the other way around.
  • Ask your child. Get their input on how they would like their PSW to support them.
  • Find a good fit. Whether or not they experience disability, all kids just want to belong. What does that look like for your child? What kind of PSW will help your child fit in with their peer group and naturally support them?
  • It doesn’t have to be expensive. Many community places will let a PSW access the event for free: gym, movie theater, amusement park, or dance. It never hurts to ask! Remind your PSW that they are there to support your child as naturally as possible!

Filed Under: General

Nature has no Labels

May 12, 2017 by christyreese

By Karen Houston, Program Coordinator

Nature has no labels. Nature demands your attention to the slow and subtle details of life. It removes you from the hectic, overstimulating chaos of daily life, and delivers you to a slower, rhythmic hum where your thoughts slow and your body relaxes. I only learned the importance of this lesson in the past five years; ironic, as I was a park ranger for 13 years before joining FACT Oregon as a program coordinator. I spent nearly all day, every day, outside: along ocean beaches, deep in the forest, hiking, and camping.

However, because I myself don’t experience disability, I never realized how accepting and inclusive the natural world was until I experienced it through a child’s eyes.  Sam is my six-year-old son, and he experiences autism. Sam has difficulty engaging in social play, and has limited verbal communication. Like many people with autism, his repetitive behaviors and sensory processing disorder are distracting for us and especially for him.  More important for you to know about Sam, though, is that he is just a boy who loves to be outside. He loves to be dirty, fresh air, rain or shine, maple tree seeds, wind, and turning his beautiful face up to the sun and smiling with his whole heart.

boy lifting his blue shirt and touching his tummy to the tree's barkElla, my nine-year-old, and my son have always spent a great deal of time outdoors since they were born. Having two park rangers for parents, we didn’t leave them much choice! We took them camping and hiking as infants. It wasn’t until Sam was diagnosed at age two that I began to notice something very interesting about him when he was outside: He becomes calmer, and his repetitive behaviors slow.  His eye contact increases. He uses more verbal language. He is so very happy! He notices every tiny detail, and forces me to slow down and see the beauty through his eyes. Like the shadows of leaves dancing in the breeze, or the way moss feels under my bare feet. Or my favorite: lifting up our shirts so we can feel the bark of different tree species on our tummies.

The world slows down for Sam in nature. The sensory overload decreases, and suddenly, things begin to make sense because they move at a pace that isn’t rushed, loud, artificial, or frantic.  Sam has taught me that nature is one of his favorite places to be. Sam just gets to be Sam: no goals and objectives, no right or wrong – just a boy in nature.  Nature doesn’t care if you have a label. In fact, she’d prefer you leave it at home!boy sitting on a big log in the forest looking up at the sky

It wasn’t until after my years as a park ranger that I noticed how even going to a neighborhood park or in our backyard could reset Sam’s general sense of well-being. We began to visit more parks, fitting in a quick afternoon hike or playground visit after school or in between indoor activities and errands. I noticed the difference between the days when we get outdoors and days we did not.

I began working for FACT Oregon in November 2016, and was excited to be assigned community projects and partnerships that had a recreational focus. With my years of parks experience and Sam’s lessons, I am excited to connect families with Oregon’s beautiful outdoors. There are many reasons families don’t feel comfortable visiting natural spaces. Concerns regarding safety, accessibility, and inclusion abound and are often valid. I am working hard with several partners on making new playground, natural spaces, and outdoor recreation opportunities available to families so they try some outdoor experiences in a safe and supportive environment.

One of those opportunities has been with Metro’s Connect with Nature project. I sent out surveys asking families to give their input regarding their current outdoor experiences, and where they’d like to see improvements. If you haven’t had a chance to give your input, please share your thoughts here. We need your valuable insight to ensure that new natural areas are not only accessible, but inclusive for all children. Metro is also looking for families to share their stories of how they connect with nature and why it matters to them. Please let me know if you are interested in participating in Metro’s story corner project.

Another project I am working on is with Oregon Parks and Recreation Department. FACT Oregon is working in partnership to bring inclusive day use and overnight experiences to families this summer – stay tuned! Let’s leave the labels at home, and discover new experiences that our children can take with them far into the future.


As a former park ranger, Karen Houston created a training manual and resource guide for Oregon State Parks and Recreation Department called Creating Memorable Oregon State Park Experiences For Families with Children Experiencing Disability.

Filed Under: General

Dear Past Me

April 18, 2017 by christyreese

By Loreta Boskovic, Communication Specialist

little boy jumping on a trampoline

I remember when my son Niko was diagnosed with autism by MECP. He was 3.5 years old, and his label consumed my thoughts. I was flooded with emotions of guilt, fear, and frustration. In particular, I remember the sense of relief I felt when he was deemed eligible for early intervention services; as if all-knowing specialists would swoop in and magically make everything all better. Experience quickly made me wiser, and I armed myself with information, talked to other moms, and eventually found my way to working for FACT Oregon.

Fast forward to today: Niko is nearly 16, and fully included in 10th grade. He relies on a letterboard to communicate, and around 20 school staff and students have been trained on how to use it. He is proudly autistic, and regularly blogs about disability rights. While he remains one of most impacted kids I know, his life is so beautifully ordinary. Girls, hanging with friends, going out to eat… These interests are universal, it seems, to most 10th grade boys. We’ve created a definition of what’s normal for our family, and embrace it as it leads us into the future.

If I could tell my 30-something self what to expect, here’s what I would write:

Dear younger me,

Right now, you’re consumed with questions. How did I miss the signs? Which therapy will help Niko the most? Where are we going to find the money to pay it? Will he ever be able to talk, write, have friends? Will I ever have my life back?

All of this seems important, but none of it matters. What matters is this: you will make amazing connections with other people who “get” it, and lose touch with those for whom you are just a little too intense. You’ll come across therapies that promise to fix his autism, but in fact they do little besides reinforce the misconceptions that he is “less than,” and that there is a small window of opportunity during which he has to make gains (or else). You’ll become active in advocacy, working with other families to change the health insurance system. You’ll be constantly tired but energized, and you won’t remember what it was like when things were “boring.”

You’ll stop taking things for granted, and start seeing the amazing gifts that your child is capable of – the ones that parents of neurotypical kids take for granted or worse, don’t get to experience. You’ll come to see that his challenges are only one small facet of his personality, and that without them, he wouldn’t be the loving, sensitive, beautiful person he will become. This insight will influence the way you parent his not-yet-born sister, and prepare you for things that challenge her too.

two teens sitting on a skateboard using a letterboard to communicateOne day you’ll stumble across a communication method that will completely Change. His. Life. You’ll think that you had presumed his competence, when, in fact, you hadn’t. He’ll tell you this, and it will break your heart a little to think that you were *this* close to throwing in the towel. Don’t worry – he’ll tell you he loves you all the more for trying. He will take over the reins of planning for his future, whether you agree or not. You’ll be so incredibly proud of him!

You’ll meet adults with autism who have forged the path for him, and want to support him in doing the same. You’ll help him present at a conference, testify before the school board, and be interviewed by the local newspaper. Most of all, you’ll see that his journey started back when he was little, and everything you did helped pave the way for the incredible life he will experience.

What would you write to your younger you? Would you have done anything different? Feel free to share your thoughts and insights in the comments below.

Filed Under: General

A ‘Non-political’ Person gets Political

March 21, 2017 by christyreese

FACT Oregon would like to share a story from an Oregon mom who recently traveled to Salem to meet with her legislator for the first time. Heidi is a self-described “non-political person,” but with recent proposed budget cuts hitting the news, she felt motivated and empowered to share her family’s experience with early intervention and special education with her state senator.

Mom Heidi and her daughter IzzyMy name is Heidi Robinson, and my two children attend elementary school in Hillsboro. My daughter Izzy is seven, and was born with Kabuki Syndrome. She experiences intellectual and developmental disabilities as a result of this syndrome, as well as many medical issues. As a parent, I’m concerned about our $1.8 billion dollar deficit and how that shortfall will affect public education. Early Intervention/Early Childhood Special Education [EI/ECSE] programs are already seriously underfunded, and with the proposed cuts, our district’s K-12 program would be $12 million dollars short for the 2017-18 school year! That’s why it’s so important to advocate in support of continued funding levels for EI/ECSE services and public education.

Early Childhood Special Education [ECSE] services in our state are not meeting recommended service levels. We moved here from Arizona in January of 2015. My daughter has been receiving either Early Intervention [EI] or ECSE services in AZ since she was three months old. When she turned three, she began going to ECSE preschool for 12 hours a week. During those 12 hours, she would meet with physical, occupational, and speech therapists on a 1:1 basis for an hour each week. When we moved to Oregon, however, she had five months left in ECSE before entering Kindergarten. In contrast to the robust services she received in AZ, here she received only four hours a week of ECSE preschool; PT, OT, and ST services were given on an observation and consult method. This was discouraging and meager, particularly when compared to the amount of services we had been receiving. These programs need more funding so they can provide children with the recommended levels of service now to reduce the need for intervention later in a child’s life.

Izzy is now in first grade, and we love her school and teachers. However, we are very concerned about budget cuts to education and the impact that would have on special education [SPED]. These services are already running on a budget that is too small. Current SPED teachers have a caseload of 38:1, and with more budget cuts, these caseloads will only increase. Hillsboro is an inclusion school district, which means that it generally provides special education services, supports, and accommodations to students in the general education setting. Izzy began school last year in a general education Kindergarten classroom with SPED support and services pushed in. It was an amazing year for her! She made friendships with her peers, grew academically, and loved going to school every day. There was one paraeducator in the classroom who supported two students experiencing disability.

This year, due to budget cuts, the school had to cut back on SPED support services, and Izzy entered a general education first grade classroom with one paraprofessional supporting three students. It is frightening to see what a difference that 3:1 ratio made: Izzy and her SPED peers were pulled out of their typical class for hours at a time because it was easier to group the SPED kids in a special education classroom — and they didn’t have enough paraeducators to adequately support the students in their general education classrooms. Friendships made with her typical peers last year were lost, and she only spoke about her SPED peers. Class time became less about education and more about classroom management. School began to be a glorified daycare for Izzy.

My daughter deserves a real education. School time should not be daycare where Izzy sits in the back of the room and colors. However, without an adequate budget, special education services cannot be as robust as they should be, and vulnerable students will not receive a free and appropriate education that they are entitled to under law.

To the other families of young children out there, I would encourage you to speak up and fight to protect the budgets for EI/ECSE services when your children are young and for the K-12 budgets for our schools so that they have the resources to create welcoming school communities that appreciate and embrace people with disabilities as valued members of their school communities.

screen shot of Sara Sampson and Heidi Robinson testifying in Hillsboro

Watch Heidi testify to the Hillsboro School Board, followed by Sara Sampson, FACT Oregon board member and fellow parent.

Filed Under: General

A Whole Life that is Beautifully Ordinary

March 1, 2017 by christyreese

March 1, 2017

By Roberta Dunn, Executive Director

A whole life that is beautifully ordinary:

This is language we are beginning to use more and more at FACT Oregon, so I thought I would share my thoughts on why.

For far too long, families raising a son or daughter experiencing disability have been lulled into believing that their child was special, experienced special needs, and was entitled to a special life. That often resulted in “special” programs: educations provided in segregated classrooms, placement in institutions for adulthood, and limited connection to one’s community.

I will be frank: this is a falsehood. When we buy into this false belief, our children are compartmentalized and recognized as nothing but bundles of disability. They are taught to be grateful for the little slice of a whole life they are exposed to versus the opportunity to design, develop, and pursue what you and I take for granted every day: a whole life!

Jimmy and Karen Staley (man and his mother hugging)I share this with you today to honor a woman who did so much for Oregon parents raising a child experiencing disability. Karen Staley dreamed big dreams for her son Jimmy, and pursued a life that would be beautifully ordinary. She aspired for Jimmy, who experiences disability, to have what every parent wants for their child: health, housing, employment, and a strong sense of community and belonging. To this end, with unfaltering determination, Karen advocated for there to be services available to support individuals in their pursuit of a full life in community.

The result was the Staley Agreement (2000) which secured the availability of services that supported integrated lives in community without languishing on never-ending wait list. Fairview Training Center, Oregon’s institution for individuals experiencing developmental disability, closed for good the same year that the Staley agreement was reached. You and I owe Karen and other tenacious parent leaders like her a debt of gratitude, for it was their desire to dream big dreams for their children that changed the lives of our children experiencing disability.

Karen passed away in 2013 having lived a life that was beautifully ordinary, doing what I understand she enjoyed immensely. Today I learned of her son Jimmy’s passing, and while my heart is heavy, I write this celebrating that he too, passed away have lived a life that was everything his family hoped for. He owned a home of his own, enjoyed working in community, and was embraced by many in his community. Jimmy’s life shaped the dreams I have for my son Todd. All told, Karen’s life demonstrated like nothing else that we must be the change we want to see in the world.

In loving memory of Karen Staley and Jimmy Staley.

Filed Under: General, News Tagged With: inclusion, Staley Agreement, whole life

Dear Legislator

February 21, 2017 by christyreese

Last updated February 14, 2019

Dear Legislator,

I wanted to write you to express my concern about an issue that my family…

Dear Legislator,

Recently I found out that Oregon is considering a law that would affect the special education services of my student…

Dear Legislator,

Thank you from the bottom of my heart for supporting the needs of people experiencing disability…

However you start your letter, you have a story to tell. Moreover, legislators want to hear from their constituents – it’s their job! (You can look up who your legislators are here.)

But putting your family’s story into words can be challenging – what angle should you take? What tone? What’s your underlying message?

First of all, there are also many forms a letter can take. For example, it can be written from the perspective of your child:

A letter written to a legislator from the perspective of a child experiencing disability

Such letters are highly effective, tell a story that is engaging (not to mention cute!), and put a face to an issue.

Image of a girl smiling and holding her letter to a legislatorAnother method is to help your young person draft a letter. This can be an incredibly empowering act of advocacy for a person experiencing disability!

Finally, parents and professionals who work with people experiencing disability can put their words into a story and share their unique perspective on an issue. It helps if you can break it down into manageable steps:

  1. Identify the piece of legislation, proposed budget cut, or issue that would affect your family
  2. Give a short history about your family’s experience with disability and how it is tied to the identified issue
  3. Propose a solution that would positively impact your family
  4. Thank the legislator for their time and service to their community.

Whatever form your letter takes, keep it real, be polite, and know that your words are powerful. You can make a difference!

Filed Under: General Tagged With: advocacy, self-advocates

Next Page »

Primary Sidebar

Comprehensive Distance Learning Resources

FACT Oregon is here for you. Please visit our Comprehensive Distance Learning page for resources during the 2020-21 school year.


Email your Support Request


Call the Support Line
(503) 786-6082


Register for
Trainings & Events


Order Dream To Go Far Books


Donate


Login


Subscribe to our Newsletter

FACT Oregon empowers families experiencing disability in their pursuit of a whole life by expanding awareness, growing community, and equipping families.

Follow FACT Oregon

  • Facebook
  • Twitter
  • Instagram

Footer

Expand Awareness

  • Disability is natural
  • Self-determination
  • High expectations

 

Grow Community

  • Access activities
  • Engage neighborhoods
  • Develop relationships
  • Signup for our Newsletter

 

Equip Families

  • Prepare and inform
  • Support and advise
  • Provide resources

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

(503) 786-6082 or 1 (888)-988-3228

FacebookTwitterInstagram

  • Contact
  • Accessibility
  • Terms of Use
  • Privacy

FACT Oregon is a 501(c)(3) nonprofit in good standing with the State of Oregon, EIN 36-4533809.
Copyright © 2014-2018 FACT Oregon · Site by Bozz Media