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!)
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!