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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!

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.

Ella, 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!

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.

By Loreta Boskovic, Communication Specialist

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 10^th 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 10^th 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.

One 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.

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.

My 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.

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