An inclusive playgroup for children on the autism spectrum, their caregivers, and friends. Join us for sensory toys, socialization and a safe space to play. Ages 3-8 with family and friends. This program is drop-in with no registration required.
An inclusive playgroup for children on the autism spectrum, their caregivers, and their friends. Join us for sensory toys, socialization and a safe space to play. Ages 3-8 with family and friends. This program is drop-in with no registration required.
By Whitnie Trost
My son Chris is a young man who experiences Down Syndrome. We noticed early on that Chris was a bit different than other kids we had met who experienced Down Syndrome, but we couldn’t put our finger on why. We knew when he was born that there would be some challenges, but anyone who knows me at all would never have imagined that talking and communicating would be Chris’s challenge. I pretty much have a black-belt in talking and I have six kids who talked all the time, mostly at the same time, so there were plenty of opportunities for Chris to “pick up some tips” if you will, but still vocalization alluded him. We also began to notice that he was not super engaged and often, to be honest, seemed like the grumpiest kid with Down Syndrome we had ever met. He did not seem to have a desire to engage with other people or be involved in the way other kids wanted to be involved. He hated loud, abrupt, unfamiliar noises, and his most hated sound has always been a baby crying or screaming. At first, I thought it was just a deep compassion for the sad child, but I soon realized that nope, he was just in pain from the annoyance and would have done anything to have the sound stop.
Chris started school off okay considering. As his parents, we knew him best, so we shared as much information with the school team and troubleshot as much as possible when new things arose. But still, with all of that, Chris still had never spoken a word.
Now when I said Chris had never spoken a word, it definitely did not mean that he was not able to communicate. You only had to pay attention to all that Chris did to realize that he was communicating through his body language and certain behaviors. For example, one time my parents were watching Chris while my husband and I went on a quick trip. They said that Chris went to the trash and got a fruit leather wrapper and gave it to grandpa. That is how Chris showed that he wanted some fruit leather. Now before you call DHS on me, let me make it clear that I don’t expect Chris to be required to use trash as a means to communicate, it was just one of the first times that he let us know what he wanted by communicating …. with trash….. OK moving on.
We then started to really watch him to see if he was communicating in other ways. And of course, he was. There was the basic sign language, ‘more, eat, all done’. But beyond that, sign language never really connected with him. He would bring me his shoes when he wanted to go somewhere, grunt really loud, throw his glasses or drop to the ground when he did not want to do something. We were amazed to see how much he really was engaged and aware of some basic communication skills. He just did not have a huge library to draw from so he stayed with those basics for a while.
Halfway through first grade, we got his progress notes from the school. Up until this time, he was in a gen ed. class for most of the day with push-in supports. But after this progress report, it was clear that the discussion of moving him to a more segregated setting was on the agenda. The progress note said things like, “he just does not feel comfortable with the other kids. He just doesn’t understand. We are afraid, his attention span is troublesome.” Long story short, for these reasons and many more, the school wanted him in a self-contained classroom so that his “extensive needs” could be met.
Something just did not sit right with me, so I asked the school to do evaluations and we went ahead and did our own private evaluation. This changed everything. We found a woman who not only had her own private practice but was a speech therapist in the Portland Public School system, so she understood what the school would and should be looking for. She said that she specialized in communication devices. I said, “you mean like a walkie talkie?” “No,” she said, “a language system for people who struggle with Communication.”
She started her evaluation process by showing Chris a ball that he would throw in a very small room. Anyone who has known Chris knows that when he was younger, he had a huge desire to throw anything he could get his hands on, so this was a dream come true for him. She gave him the ball and then when he threw it to her she put it on the shelf and waited for his eyes to move or give some indication that he was wanting or looking for the ball. She then got out an aug comm device that had several words on it and she found the word ball and pushed it and it said…. You guessed it….“ball”. Chris’s eyes lit up. We were so excited. After a few times modeling this action and giving him the ball once he said the word, he would get the ball. He used his first Aug com device about 30 times that day and our world began to open.
I wish I could say that things changed overnight, but of course, they didn’t. We did many trials using different devices and ended up with a Vantage Lite. We started using it at home and were so excited to bring it to school and help them start using it. That did not go quite as planned and I believe it became a doorstop or a really heavy paperweight at school because no one knew how to use it, and you can’t use it if you don’t know it, and Chris needs support in using it so if the team did not train, they could not teach with it. So, it just sat.
We had several challenges with the school and ended up needing to do some legal things to get the school to have any sort of positive expectations for Chris. Long story short, we had an Independent education evaluation done and Chris was officially diagnosed with Autism, which is …wait for it…a communication disorder. My son was not and will never be “too dumb to learn” and he will not “suck the resources out of the room”. He needs, just like the rest of us, a way to express his wants needs, likes, dislikes, feelings, etc.
As we moved into Middle school things got a bit better with the change to a new SLP. The first month of school she said, “I really think Chris has so much to say, and he is so smart. I really want to work this year to help him have a voice.” I had never had anyone at school say something like that. Well, changes happen and of course, she got transferred to a different school. The IA’s who worked with Chris really did try but because the school pushed back on any formal training (and I must note that the company who makes Chris’s device provides free trainings to school, staff, and families as many times as you need) so the words that were focused on were the ones that Chris knew and liked most, which were food, specifically “pretzel”. So basically, it was a very expensive way for Chris to order food.
It wasn’t until we got to high school that we recommitted to strategically using Chris’s device again. The SLP at the Highschool loved working with Chris’s device and actually really knew the program and arranged not only for the IA’s to be trained but also some of the actual teachers. I was so amazed. The trainer put us in contact with a private SLP who not only specialized in training families and kids on the device Chris now has, which is an updated model an Accent 8000, but comes to the house so she can work with Chris in his own environment. He has grown so much. What I loved most is that the trainer, the school SLP and our private SLP focused on modeling with the device, which essentially means, we talked with Chris using his device over and over again all throughout the day and then help him respond, or correct when he needs. Just like a toddler learns to talk by listening and watching over and over several hundreds of times, Chris needs to do the same, so we model, model, model. If he uses his body or points to something or uses the one sign language motion that he created to mean every word in the English language, we say “say that out loud” or tell me about that” or can you use your talker”? Then we respond back using the device to talk as well as our voice.
A few examples of the amazing changes that have happened are Chris was watching a movie and as a commercial came on, my husband began channel switching. Chris got up and got his device and pushed the words “television Help”. In other words, he was saying “dad change it back to my show”. He, of course, loves to use it to request food all the time, but now it is not just the word pretzel or milk, it is “want eat make eggs.” Then I can model “ok, do you want 1 or 2 eggs” using the device. The school has been awesome as well. Jeff, our learning specialist, worked with our school SLP to create a functional communication goal as well as including his device use in all of his goals. He is included in gen ed for 70 % of his day and his device now give him a way to understand the modified curriculum better. We also use it at Church. We trained his youth group and created a page with easy to find “church words “so that they can be easily modeled.
Chris is more engaged and now he looks into our eyes more and acknowledges that we get it. When we use the device to explain that we know what he wants or does not want, or to ask a question, he lights up. He is trusting that we will try, that we will validate, and that we may not agree but we will let him know we understand. When we don’t agree, he is much more patient and with modeling on the device, he will change directions and be willingly redirected. Sometimes I get discouraged and think this is all taking so long, but then the other day, I modeled I love you. He leaned over and typed in “Thank you.” He then leaned forward and let me kiss his forehead. I mean what else do you need, right?!
A playgroup for children on the autism spectrum and their caregivers. Join us for sensory toys, socialization and a safe space to play. Ages 3-8 with family and friends. This program is drop-in with no registration required.
By Cori Mielke
Today, I have so many things on my mind. As a parent of children who experience disability I often think about what community means to our family. This afternoon, we decided to go have a little fun. For some families, there is not much prepping before heading to a movie, arcade, or dinner. For our family it isn’t always that simple. Scarlet is not a fan of public restrooms, loud games, or robots (or animatronic type toys). Lola can get a little heavy with anxiety, and Aidan has his own set of needs. In the past community has looked very different for us. Fear that we will be judged, that we won’t be accepted, or that our child(ren) won’t handle it well lead us to self isolation and we limit our access to community.
Today, before we headed for the arcade, we practiced our skills, grabbed our tools (Scarlet’s headphones & and Lola’s calming slime), and watched a video to introduce us to the building. When we got there, we found the perfect table away from the game room. I then took each kid individually and we walked around the building while our pizza was being cooked. We touched the games, we practiced flushing the toilet, and we familiarized ourselves with our environment. I went in a little nervous (more so when I saw the packed parking lot!) and left with more than full heart!
While we there, Aidan connected with another boy and played two rounds of air hockey. He was a teenager playing an aggressive game with his peer! He went 3-0 today after kicking my butt! Lola, during a frustrating experience used her tools, talked it out, and found a different option she could be equally excited about! Scarlet said hello to the storm trooper (costume that could be close to robot like). She also used the restroom and ran into a little girl from her school who ran over and hugged her.
So why am I sharing this with you? I am sharing because it is not always easy, most of the time we go out, we’ve done some practice runs, visuals, and social stories before leaving. I try to prepare the best I can in hopes that the kids will feel safe, supported, and have fun.
Most of the time though, we are still stepping out of our comfort zone and trusting in humanity. Trusting that our community wants us. That we belong to our community and that our family enhances and contributes to it. So does your family! This is dignity of risk. Without risk we don’t gain.
We all deserve to be loved and accepted. We all want friendship and compassion. We ALL want to belong. So how does that happen? How do we create a community? We dream big, we make a plan, and we set forth. We accept the fear and we acknowledge the risk. We step out the front door. Parents, sometimes our fear holds our children back. As challenging as it feels in a world that is sometimes aggressive, overwhelming, and difficult to understand, we must continue to believe in others. To trust the community around us. To try again.
Today, I wasn’t a mom of a child sitting at the IEP table, talking to a PSW about skill building, or doing a needs assessment at DD Services.
Today, I was a mom with three kids eating pizza and playing in the arcade. Today, I saw my kids in their community. Community matters.
By Elliott Dale
Elliott Dale is a FACT Oregon Board Member who lives in Lake Oswego, Oregon and is a business attorney. He shared a version of these remarks at the 2017 FACT Oregon Annual Breakfast.
At the heart of what we do, FACT Oregon is about families. As a board member, I wanted to share a little about my family. We are not unique; we are one of thousands of families in Oregon that walk a little different path, because we have a family member that experiences disability.
In this photo you will see my wife, Jennifer, a CPA and currently the controller of a local non-profit and adjunct accounting professor, as well as our daughters Maddie (age 9, 4th grade), and Lizzie (age 5, Kindergarten) and our son Charlie (age 4, pre-K).
I like to think about being a parent of child with special needs as being part of a “club.” My ticket into this club was the birth of Lizzie, who was born with Down Syndrome. The price of admission is pretty steep – constant learning curve, seemingly never-ending series of navigating new bureaucracies and new acronyms, and a new set of challenges everyday. This is not too different from typical parenting, but also, really different.
There are very few experts you can turn to, because even though certain disabilities share some characteristics – all our kids are unique, and it’s this special parenting that creates expertise. In this club, you can’t turn in your membership or simply walk away. There is no option to quit. But it is immensely rewarding, incredibly enriching, totally humbling, and none of us would trade places with another family for anything – like all parents.
In this club, you tend to rely on the senior members to help you navigate your path, people who have already walked the path you are about to. For most new members of the club, you don’t have access to these people before you join. You don’t already know them. But you start finding them quickly. As you go about raising your kid, the knowledge you must accumulate as a parent of a child experiencing disability is mind-boggling. And the complexity and the stakes for your child greatly increase when they start school.
This word cloud is a list naming acronyms you might encounter for disability services. To be honest, I don’t know all of these, and this is barely a start. I maybe know half of them, and I try to pay attention to these things. To effectively navigate through services and programs for their child, parents need to learn dozens of new acronyms, arcane administrative rules and program requirements, constantly fill out paperwork, and coordinate a litany of appointments and meetings. Most often, the meetings and appointments are with people in bureaucracies who are very experienced in the processes and procedures they are administering, and part of their job is to use the process to allocate scarce resources.
Starting out, the parent does not have the preparation, experience, skillset, knowledge base, or tools to effectively navigate these processes. On top of that, there is often uncertainty of what the future will look like for their child. How does a parent know what to expect? How does a parent develop expectations for their child? The reality is, our norms were set up years ago by the community in which we grew up. For most of us, that norm did not include high expectations for people who experience disability.
When I learned of Lizzie’s diagnosis of Down Syndrome an hour after she was born, I had absolutely no context for what her capabilities might one day be. My norms were set up 30 years ago based on my experiences, or lack thereof, of interacting with people experiencing disability. I literally did not know if she would be able to walk, to talk, to count to three. If she would make friends, play sports, do homework. When my first daughter was born, all I saw was her unlimited potential. When Lizzie was born, I saw the opposite. Looking back, my ignorance is astonishing, but not surprising. I was a product of my community. My norms were those of my community.
What FACT Oregon does for parents like me is to organize and disseminate information, and empower us to have high expectations for our kids. To teach parents how to navigate bureaucracies and work productively to access resources. To teach professionals how to work with parents to help their kids lead whole lives. To be those senior members of the club who have been there and done that, to train, to teach, to connect with each other.
Lizzie started Kindergarten this fall. She is in a typical Kindergarten class of 22 kids, with the same Kindergarten teacher her big sister had in our neighborhood school. She is the first person with Down Syndrome to attend this school for as long as anyone can remember, maybe ever. And that didn’t happen by accident. It happened because we had people helping us figure out how to make it happen. And encouraging us to honor the expectation that she should have the opportunities her sister and brother will have, for school, for sports and activities, for play dates and for everything.
Lizzie is going to do whatever she sets her heart on – and not because my wife and I are great parents. Actually, it is not about our parenting. It is about our community. Your and my community, and the expectations we each have. Really, it is because of this club, and the examples parents before us have set. Early in our membership, our family connected with people who helped us to understand it is possible to have high expectations, who understand that disability is natural, and who are those senior members of the club who are going to help us navigate the next step for Lizzie and the step after that. That’s FACT Oregon. FACT Oregon is at the forefront of changing the norms of our community by raising the expectations for us and for our loved ones experiencing disability.
Because of all that I have learned, I am excited about Lizzie’s opportunities to lead a whole life in our community, and importantly, I am also excited for her classmates this year and all the years from here. They will have a completely different experience and set of norms around experiencing disability than we do. They will change their communities because of their experience.
This holiday season and beyond, I am asking you to join me in supporting FACT Oregon’s mission and become a regular monthly donor at $25 a month or whatever level fits you. Supporting FACT Oregon has ripple effects far into the future. We know that 1 in 5 people experience disability, and the issues are bigger than all of us, yet each of us can make a difference. Please join me in helping FACT Oregon reach more families!