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Behavior

My Distance Learning “Secret”

April 21, 2020 by Molly Williamson

By Karen Houston

What does meaningful participation in online school look like for your child with a disability these days?  Perhaps you have a child that can attend to video calls with their teacher and then complete worksheets and other assignments with your guidance. You may be more like my child, who struggled with participation in a brick and mortar setting with one-on-one assistance and now is expected to complete school online. Maybe your story lies somewhere in between.  Wherever you fall along the spectrum of online learning, for kids with a disability, the one thing we parents all do have in common is that we have suddenly become the one and only teacher for our child. My son has ten adults on his IEP team at school. TEN. At home, with my husband working, it is just me; one person. I have become the SLP, OT, behavior specialist, general education teacher and learning specialist, just to name a few. How do I wear all these hats and make sure my child is meaningfully participating in online school alongside his peers? Well, I will tell you my secret. 

I don’t.

I simply can’t. I stepped away from my job at FACT Oregon during these unprecedented times to focus on my children and make sure they are safe, fed, healthy and yes, educated. I am lucky to be able to take this time with them. My daughter just logs on to her Google classroom and does her assignments and manages her own time. My son takes every second of every day and everything I’ve got. I had to decide early on how to manage all the video calls and emails and tele-therapies that were coming flying at me from every direction. Everyone wanted to help.  Everyone wanted to make sure he wasn’t left behind. My heart swelled with all the thought and care people were pouring into my son and my family, but my head felt like it was going to explode.

So, I read the emails, we attend his online classroom meeting each day and then we just kinda do our own thing. He listens to books and I read to him every day, some days that is 10 minutes total and on a good day an hour. We type on his adapted keyboard when he’s in a good space. I have no idea how to approach math in a meaningful way. We follow a visual schedule, on hard days we follow it loosely.  I am not hard on myself about him not meaningfully participating in online school because I am too busy celebrating the other things we are working on that have nothing to do with school.

woman and boy at kitchen table looking at laptop computer and using AAC device
My son and I working through one of his assignments.

One example is neighborhood walks. Pre-COVID-19, whenever my son would go out our front door he just wanted to load up into the car and go somewhere. If you tried to go for a walk around the neighborhood he would scream and fall to the ground. When the stay at home orders came through I knew that we’d both need to get out of the house, even just for a walk around the block, if we were going to maintain our sanity. The first two walks were not pretty, but by the third walk he was having fun. We work on him carrying his AAC device, stopping and looking before crossing the street and saying hi to neighbors (from 6 feet away). We are also learning how to do chores, get dressed and brush teeth independently, use and carry his AAC device all day and ride a bike. Our family started an AAC only dinner time where everyone has to use his program on a device to communicate, no talking! So many things we have always just done for him because we were in a rush and had no time.  Now all we have is time.

Family outside on sidewalk, father holding son as he rides a bike, daughter walking behind them.
My daughter, son, and husband out for a walk/bike ride around the neighborhood!

Having a child with significant communication and sensory needs makes online school extremely difficult. However, the stay at home conditions we currently find ourselves in also gives us opportunities we have never had before. We are doing our best to participate in online school in a meaningful way, but I’m much more excited about his meaningful participation in our family.

Filed Under: General Tagged With: AAC Device, Assistive technology, autism, Behavior, communication needs, Community, Community Building, Covid 19, crossing the street, disability, Distance Learning, Dream Big Dreams, family, meaningful participation, online school, OT, personal story, safety, school, sensory needs, siblings, SLP, visual schedule, whole life

Making Sense of Sensory Showings

April 16, 2019 by Molly Williamson

By Nicole Silverman

“There’s no adult special needs grocery store, restaurant, or post office.”

I’ve heard this phrase several times and it used to HAUNT me! Especially at a time in my life when I already felt like we couldn’t leave the house for ANYTHING because of my son’s behaviors and medical issues. I remember the day my husband and I called “being out in society” quits! It was summer, we had just moved into a new neighborhood and my son was 3 years old.  We were walking a few blocks to a neighborhood picnic… our first one! My son, Benjamin was in the wagon and as soon as we got to the small park with all the people – his screaming began… and didn’t stop. It felt like all 50 some people fell completely silent and were just watching us. I remember sweat literally pouring down my face and so were the tears. Nobody said hi, nobody came over to see if they could help, we were like weird aliens coming to earth for the first time. But what happened next, really sealed the “never leaving our house again” for both of us. Benjamin had severe acid reflux and when he became really upset, he would throw up! And he did… loud and lots and all three of us were covered in it. We could not leave the park soon enough. Walking quickly back to our house we decided we were done going out in public. We’d just stay home… FOREVER!

This is such a bad place to be… and if you are in this place right now in your journey you are not alone. But do not give up hope! Although it’s not for the faint of heart and it’s certainly not easy, COMMUNITY is worth it! Living a WHOLE life is worth it and your child learning to do hard things to be included in society is worth it the most!  

One of the reasons I LOVE working at FACT Oregon is how we partner with communities to provide what we call “soft landings”.  Our next one is April 28th at Northwest Children’s Theatre, for their sensory showing of Tenali, the Royal Trickster. What is a sensory showing? Basically, the lights are dimmed, the sound turned down, often times it’s a shorter time frame and ANYTHING goes. Seriously. It’s the perfect place to come and do something that might be very hard and I promise, you will not have 50 strangers looking at you like aliens! I remember our first time going to a sensory showing… just coming into the doors and taking a seat was a success for us. Literally, we left after 10 minutes. Now, we can come to the shorter plays and stay the entire time. We invite friends to go with us and practice keeping our shoes on the ENTIRE time. (my kid is still the loudest one there!)

Benjamin and our family at a sensory showing

So what happens for our family at those events that aren’t sensory? Sometimes we’re successful, and sometimes it’s really hard, dare I say disastrous.  But we are working daily towards getting to all events through many avenues. Does society need to be more accepting of those who need different supports to be involved in community? Absolutely! And I will continue to advocate and educate in every way possible. My goal as Benjamin’s mom is to never stop trying, learning, exploring ways to help him overcome some of his own obstacles and keep moving him forward with the right supports to be as successful as possible in the future.

My biggest encouragement to all families, especially with those who deal with big behaviors like we do… Don’t give up! Keep moving forward! Try it! And when it goes terribly wrong, take a break, call us here at FACT, investigate and rethink strategy… and try it again from a different angle.

p.s. My son’s 10 now… last summer at our neighborhood picnic we walked there with our neighbors/friends we now know, stayed and ate dinner and had a blast! Don’t give up! Want to join us on April 28th for NWCT’s sensory showing of Tenali, the Royal Trickster? Click for free tickets and details!

 

Filed Under: General Tagged With: Acceptence, advocacy, advocate, autism, Behavior, Belonging, Building Community, Cerebral Palsy, communication needs, Community, dignity of risk, Event, FACT Oregon, family, friends, Future, inclusion, meaningful participation, Northwest Childrens theater, personal story, sensory needs, Sensory Shows, support FACT, Supports, try hard things, When we stretch we grow, whole life, you can do hard things

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