The Studio Blog Archive
A few posts we've written over the years
Rainbows Run Family Story
Elza Henry is a Warrior Princess in every sense of the word. Elza’s mom Joice said, “Elza has been a light in our lives, and if sharing her story helps anyone else out there, let’s share it. Let’s shout it off the rooftops! She is amazing and we can’t imagine our lives any differently.”
“Elza’s start was precarious to say the least,” said Joice. “She had a ‘floppy larynx’, labored breathing, sleep apnea and failure to thrive, on top of her Hemifacial Microsomia. Her breathing structures (nose and throat) are atypical so it was a challenge to even breathe in the beginning. When Elza was 6 months old, she had surgery to repair her larynx, and went from 2% weight to a now healthy 65%.”
At 3-weeks-old, Elza began receiving services in her Butler County home with a Rainbows’ therapist. “Elza was literally fighting to live her first few months of life, but now she is just like any toddler,” said Joice. “We worked diligently to get her to where she is today. Her dad, Michael, and I work as a team, and we are incomplete without each other. Her speech is coming along. She is almost caught up thanks to her therapist Joanna and all the tools we have been introduced to through her.”
Elza is in the middle of her two brothers, William, 5, and Walter, 1. She is as loving as she can be and holds her own with both little and big brother. Everyone in the family loves the theatre, playing outside, taking walks and going to the park.. “We travel as a family,” said Joice. “Our goal is to visit all 50 states before each child is done with high school.”
“I absolutely adore the families I work with,” said Joanna Wiebe, Butler County Early Intervention Speech Language Pathologist. “Elza’s family has stolen my heart. I’ve been working with them since she was a young infant. Her mother, Joice is insightful and positive in every step of Elza’s journey. It has been an honor to support them.”
“Any chance we get, we tell people about Rainbows,” said Joice. “Joanna has been a godsend. Her quiet demeanor and positivity have been a force in Elza’s life. Even when it seemed bleak and discouraging, she was always there to pick up our pieces. We are and will be forever grateful, not only for her “work” but for her heart being in our lives.”
Today, Elza is the most independent 2-year-old you’ll ever meet. Her favorite thing to do is to dance. “The fears I had of whether or not she’d be okay are quieted immensely now that we know her personality and know that she is in our lives to teach us so much more than we ever knew the day she was born,” said Joice.
Why Do I Support Rainbows United?
When I was asked to share why I support Rainbows in a post for this blog I began thinking about when I first became aware of Rainbows, and why I felt strongly that it was the type of organization I wanted to be involved with and support, and it became obvious that I really couldn’t pinpoint the actual time or event that lead to my involvement but that it was a series of events.
I first met Linda Weir Enegren and her husband Phil in the late 70’s. We were members of First United Methodist Church as were the Enegrens. The Church had a unique program, The Religious Nurture Center, that provided alternative programing on Sunday mornings and throughout the week for individuals with special needs. Each Sunday Linda and Phil would come to church in a large van and bring all of their children, several had special needs.
It was during that time that I became aware that Linda had founded Rainbows. Sometime during that period, I also learned that the impetus for Linda founding Rainbows was impacted by knowing a family who had a child with special needs that was facing a decision to institutionalize their child instead of caring for them at home because they simply could not care adequately for the child at home.
That hit home for Susan and myself because Susan’s family faced that same issue in the 50’s when her younger sister Sheryl Linn was born with Spina Bifida which quickly caused Hydrocephalus and multiple physical and mental health issues. There was no Rainbows United at that time and her parents had to make, what must have been one of the most difficult decision parents must ever make, to institutionalize their child as the only alternative to provide the care Sheryl needed.
Over the next 30 years I was aware of Rainbows, knew generally what they did, but was not directly associated with the organization. As a United Way Board Member and Chair of the Allocations Committee, I became more aware of their programming and contribution to the community.
The event however, that brought all of these bits of prior knowledge about Rainbows into a clear focus for me and made me want to become actively involved occurred in July 2009. I read an article in The Wichita Eagle about Rainbows needing to engage in significant restructuring of operations and reduce staff if they were to survive.
I had retired from INTRUST Bank a few months earlier and was “getting antsy” to get involved in something other than golf and travel. I called Steve Cox, whom I had known since high school and who was Chairman of the Rainbows’ Board at that time and asked if there was anything I could do to help. With my Human Resources background, I thought I might be able to help with the multitude of issues related to restructuring.
What I have learned first hand since that day is that Rainbows is an organization that provides a vital and unique source of assistance, resources, training and hope for children with special needs and their families within our community.
In visiting with community members about Rainbows during the restructuring and since one sentiment is virtually universal and that is that the community wants and needs the services that Rainbows, and in many cases only Rainbows, can provide.
That is why I support Rainbows.
“I am the gatekeeper for Bright Beginnings,” said Stephani Gallion, Social Worker at Bright Beginnings in Butler County. “When our office receives a referral, I schedule time to visit the family at their home. I complete the intake paperwork and begin gathering information to help evaluate the child’s qualification for our program. If they still need services as they age out of our program, I assist in getting them plugged in to the appropriate service for them.”
“I love helping people. I especially enjoy helping kids,” she said. “I want to see them get the best possible start in life that they can. I love meeting the families and helping them get the right tools to help their children.” Stephani joined the Butler Babes in December 2018. “I have always admired Rainbows and thought I would greatly enjoy working for them. I love the team I work with. We are a family. I am very glad to be here now!”
“Stephani is a great addition to the Butler Babes. She is eager to work and assist the families seeking Rainbows’ services,” said Susan Harsh, Coordinator for Rainbows’ Bright Beginnings Infant/Toddler Services in Butler County. “Stephani is also available and willing to help her team access resources for the families on their caseloads.”
Stephani has a Bachelor’s Degree in Psychology and Film Studies and a Master’s Degree in Social Work from the University of Kansas. “I am a cowgirl and a Jayhawk,” she said. “I love to be outside with animals, especially horses. I love to watch sports, especially my Jayhawks. Rock Chalk!”
Rainbows Run Ambassador Family 2019
REGISTER TODAY and join Rainbows United for the 8th annual 5K and 1-mile walk to support kids like Canyon:
Canyon Stephenson is 2-years-old, and loves rough housing with his 2 brothers. His mom Rachael had a normal pregnancy and Canyon was born right on time. He proceeded to wrap his family around his little finger with his smiles and cute baby laugh. When he was 2 months old, his mom noticed that his eyes were moving unusually fast and she became concerned. Canyon was diagnosed by a local pediatric ophthalmologist with congenital nystagmus, a condition that causes the eyes to look involuntarily from side to side in a rapid, swinging motion rather than staying fixed on an object or person.
At 9 months Canyon received an evaluation through Rainbows’ Infant/Toddler Services of Butler County and he qualified for services. Joanna, a Rainbows’ therapist began seeing Canyon in the family home and working with him to meet age-appropriate developmental milestones. With Joanna’s help he used a few signs with gestures for communication while learning words. He quickly progressed to imitating words and now she models phrases to prompt him and he talks more. “Joanna gives me tools to work with him,” said Rachael. “I’ve learned to take smaller steps for him to learn. I now speak one word, then two words at a time to help him process what I am saying. These suggestions make a big difference in his understanding.”
“I love working with Canyon and his family,” said Joanna, Speech-Language Pathologist. “He has progressed quickly and now communicates so much more, which cuts down frustration for him and his parents.”
“He can now see and follow an airplane in the sky,” said his dad, Christian. “I know he is able to focus his eyes so much better now, I see progress in my son.”
Rachael also now understands that she knows Canyon better than anyone. “Through these regular visits, I’ve learned to trust my gut,” said Rachael. “It’s been so helpful to have Joanna to share ideas with as we work together to help Canyon progress.”
While surgery and eye glasses may be in Canyon’s future, his family knows the services provided through Rainbows have made a big difference in getting him off to a good start.
Rainbows Run is Icing on the Cake!
By Susan Harsh, Butler County Infant/Toddler Services
Join me for all the fun at the 2019 Rainbows Run to benefit children and families served by Rainbows’ Butler County Infant/Toddler Services on Saturday, May 4. You can register for the Rainbows Run here.
This family friendly event includes a 5K timed race, a 1-mile family fun walk, kids’ activities, music, food and is home to some of my favorite memories.
It warms my heart when I get to see our talented professional therapists interact with the children they serve in homes across the County. I see the faces of toddlers light up when they recognize their therapist - the person who comes to their home and “plays” with them as they learn new skills and become stronger through speech, occupational and physical therapies.
In my role, I see the child and family on paper, I don’t often go to the home or provide early intervention services on a regular basis. At this event, I not only get to see the child and their family, but I get to see my staff interact and enjoy the families who attend the event. They play together, they walk with the families through the course, they participate in activities and each year, my cup overflows and I am thankful I get to be a part of something so transformational.
Etched in my mind forever is the time that one of our moms stood to tell her Rainbows’ story to the group of participants and their compassionate therapist calmed her child during a meltdown. This mom had been through a lot and had summoned the courage to share her experience. Right then and there, staff went into action, calming this screaming little one during a time of stress for the family and allowed this parent to share about what it meant to have Rainbows’ services helping her child make developmental progress in her home and how she learned to be the parent she wanted to be.
Another highlight is when children we served as infants and toddlers come to the event as preschoolers and school-aged volunteers or participants. To see that the children are doing well and thriving after a rocky start is such an encouragement.
At this event, the community gets to participate in and donate to support services, so that more children and families are able to be served in Butler County. It is an opportunity for families to enjoy activities with their children and learn of great things that are happening for others in their communities. The Rainbows
Run demonstrates to Rainbows’ families that others in their community support them and their children.
This year’s event will be held on May 4th starting at 9 a.m. at Lincoln Elementary in Augusta. This special day means fun and funding, but it is truly “icing on the cake” for me.
Rainbows Run 2019
REGISTER TODAY and join Rainbows United for the 8th annual 5K and 1-mile walk.
The Rainbows Run benefits children with special needs, ages birth – 21, and their families in Butler County. The officially-timed 5K course features gorgeous lake views and the 1-mile course is perfect for the whole family.
Register by April 14 to guarantee an event t-shirt and to save $5 on all 5K registrations! A full pricing breakdown is available on the registration site.
Want to go the extra mile? Become a fundraiser and tell your friends and family how they can join you in supporting children with special needs and their families served through Rainbows United. You can earn prizes and awards by fundraising, and you don’t have to register for the walk or 5K to take part.
New for 2019!
T-Shirt Options: Participants who register prior to the t-shirt guarantee deadline (April 14) can choose their t-shirt design. To choose during registration, select the option from the dropdown menu during sign up that reflects your desired shirt style AND size. Participants who register after the t-shirt guarantee deadline will select from the available sizes and styles during packet pick up; first-come, first-served.
Referral Rewards: Refer 5 or more participants and get a refund of up to $5.00. It really is that easy - if at least 5 of your friends or family register using your referral code, you'll get a $5 refund!
If you have questions about the registration process, reach out to Rebecca Saxton, Rainbows’ Development Assistant, at firstname.lastname@example.org or 316-558-3406.
Stigma and Treatment
Alice Boutz, LMSW, Mental Health Specialist
Mental health problems can and do occur in early childhood. Young children express and process emotions and events in ways that are very different from adults and older children. Some symptoms of mental illness that can occur in early childhood include agitation, often talking about fears and worries, difficulty making friends, or complaining about stomach aches or headaches with no medical cause. Often times stigmas prevent parents from seeking mental health treatment for young children, as they fear that the child will be labeled with a diagnosis that they may carry around for life. However, by not seeking treatment and early intervention, mental health symptoms can grow into major life challenges not only for the child, but for the whole family unit.
Stigma is when someone views you in a negative way because of a characteristic or trait that is thought to be a disadvantage. Mental health diagnosis is often surrounded by cultural and personal stigmas. However, in seeking mental health treatment, diagnosis do matter. Just as a physical health diagnosis, such as diabetes, helps doctors with treatment, a mental health diagnosis helps mental health professionals with treatment options. Health insurance companies also require diagnosis to show that there is a need for mental health treatment.
Early intervention is very important to mental health treatment. With early intervention, children can learn skills to overcome symptoms of mental illness. Mental health treatment can include play therapy, therapeutic groups, case management, medication management, family therapy, and parent coaching.