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Building a Safe Place for Ethan & Bianca

By: Justin Waters

Think about this scenario: You have a big meeting with your boss first thing in the morning. You’ve prepared all week, laid out your clothes the night before and got your 8 hours of sleep. You plan to wake up early to make sure you have plenty of time to get ready and make final preparations. Next thing you know, it’s 6:45 am. Your alarm was set for 6:00 pm - not am. GO.

You’re definitely going to be late. Throw on your clothes and sprint to the car. Bah! Forgot the keys. Now you’re sprinting back to the house. SPLASH – didn’t see that puddle. Now you’re late and soaked. What do you do to calm down? You’ve got a few minutes in the car before you walk in. Do you listen to music? Sit in silence and collect your thoughts? To some, this is simply known as calming down. To the world of people with autism, this is known as regulating.

Imagine if you didn’t have the ability to calm down on your own. Imagine the frustration, fear, and anxiety of not being able to regulate. With all that in mind, I’d like you to meet the Wolk family.

Joel and Christine Wolk have two children, Ethan (17) and Bianca (15). They have been residents of Bolingbrook since 2003. They closed on their first home on Ethan’s
first birthday.

Christine remembers Ethan being a bit colicky as an infant. As he got older, he wasn’t as responsive like other kids. “I thought everything was fine, he and I would have gibberish conversations back-and-forth when he was about a year old,” said Christine. During a playdate, I noticed the mom talking to her son and he was responding back clearly understanding. That was the point where I told myself this is past the “he’ll get it eventually” stage. Ethan was diagnosed with Autism. Two years later, Bianca was born. She eventually received the same diagnosis.

Indicators of autism usually appear by age 2 or 3. This was the case for the Wolk family. Ethan and Bianca are very different in how they regulate. Bianca has “stimming” episodes, where she flaps her hands and becomes very vocal as she moves through the house. This is Bianca’s way of helping her body regulate. When Ethan needs to regulate, he jumps up and down. This can be a challenge. As Ethan has grown, he’s gotten so big and strong that he has caused damage to the sub floor from jumping in
his room.

With the stress that autism brings, the Wolk family feels there is a lot of joy. There is so much more to Bianca and Ethan than autism. They are two kids whose parents love them dearly. Bianca is a collector. She likes to name all of her crayons and beads. She has a set of marbles that she likes to carry around and is very attached to them. When it’s warmer, the family sets up a trampoline in the back yard. “Bianca just likes to lie on the trampoline. She will sit and take her marbles out and have them roll around. Sometimes we’ll just see her lying in the grass,” said Christine.

Joel and Ethan have a very typical father-son relationship. Joel likes to talk about how they ride their Razor Scooters together for up to 5 miles at a time.

"When I’m working in the front yard, he’s really good at hanging out with me. He’ll toss a ball on the roof and have it roll back to him,” said Joel. “He’s a big physical kid. He enjoys the outdoors and motion-oriented things. Before we had kids, I used to play disc golf. While playing in the backyard, I noticed he wasn’t so much interested in throwing things back-and-forth. He was more interested in me throwing it and having him chase it. It hit me like a thunderclap – that’s disc golf! Now, we can go play 18 holes on a Sunday, walking around, throwing the discs and being more physical.”

At their home, the Wolk’s have a limited number of sensory resources. Ethan likes towels that he’ll shake and water beads that he can put his hands in. Bianca has her collections. Many families look for outside resources to help manage sensory needs. Sensory rooms have become a vital tool for families like the Wolks.

Sensory rooms have specialty equipment that is designed to help with regulating. For example, take what’s called a “Bubble Tube.” It’s exactly how it sounds. It’s a big tube with water and bubbles pumped through them with changing colors. The purpose of this is to encourage tracking, turn-taking, eye contact, and it has a calming effect. This is an over simplification of the technology housed in a sensory room. Other equipment often includes:

  • Interactive Panels
  • GestureTek
  • Fiber Optics

Both Ethan and Bianca could benefit from this. Ethan could use it as a communication tool and be encouraged to describe what colors he sees. Bianca could primarily use it to help her focus and relax. The end result would be the ability to focus. Similar to what a massage or music can do for you.

“Everybody regulates,” said Joel. “For one person, it’s chewing a piece of gum. For this population, it’s not as simple as chewing a piece of gum, or going for a walk, or counting backwards from 10. It’s the same thing, just more extreme.” A sensory room is life-changing.

Lily Cache Special Recreation Association (LCSRA) serves the Bolingbrook and Plainfield special needs population. They’ve recently launched their Sensory Room Campaign with a goal of $75,000 to equip a sensory room at the Annerino Community Center in Bolingbrook by June of 2020.

“I don’t take my kids to the grocery store, so we’re pretty much home any time they have school off.” If we had a sensory room in the community where the special recreation programming and there’s support if something happens would make my week a heck of a lot more pleasant and easy,” said Christine.

At the end of the day, Joel and Christine want what any parents want for their kids: to be happy. “Our hope is that in their mid-20’s that they’re placed in to a supportive living situation where they can have friends, jobs, be productive and close to home. I’d like to see them come over for dinner, have sleepovers, go on family vacations, then send them back to their own happy place and know that they’re going to be ok.”

Having a sensory room for families like the Wolks to use regularly would make the world of difference. They are one story of many. Sensory rooms are also an important part of helping people suffering from PTSD and anxiety issues. The number of people in need of regulating is increasing. Please consider donating to this amazing project. Any dollar amount makes a difference. Rest assured, 100% of the money donated will go directly into the sensory room to help families like the Wolks.

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