Working with renown KC Children’s Fashion Photographer, Colleen Christi, Variety KC is holding a fashion photo shoot, showcasing Variety KC kids with special needs.
The photos will be used by Variety KC to celebrate the beauty of all children! The children featured in the photos will be photographed with the mobility and communication devices they use each day. One inspiration for the effort is the recent attention to the bullying of kids with disabilities. Variety KC wants to shine a light on the true faces of disabilities and help to build the confidence of these beautiful children who deserve the same love and respect that all children do. It’s too often an “invisible” population and Variety KC wants to be sure they are truly seen.
“All kids shine, and they all deserve their moment in the spotlight,” says Deborah Wiebrecht, Executive Director of Variety KC. “Colleen Christi’s photography is powerful and memorable. Through her lens, she is able to show that Variety KC Kids are amazing and kids with special needs should be included in marketing messages and campaigns to help create a cultural change of inclusion.”
In 2019, Colleen Christi was honored with and International Variety award for her first KC photoshoot.
Employees at Russell Stover recently held a fundraiser raising $4,500 for the Logan Baker Foundation. Logan’s life was cut short at just 17 months due to Congenital Muscular Dystrophy, and a foundation was formed in his name. Logan’s mom works at Russell Stover.
Looking to change the life of another area child, the Logan Baker Foundation turned to Variety KC and learned of a young man named Caleb. Caleb has spina bifida and uses a wheelchair for mobility. He has become something of a local star playing wheelchair basketball and was asked to represent KC in a national basketball tournament this month.
The problem is, Caleb wore his old previously owned sports wheelchair and coming from a family with nine children, finances just weren’t there to purchase a new one. As a result, Caleb has tried to use parts of his regular wheelchair in combination with his sports wheelchair – a temporary fix that became dangerous when a wheel fell off during a game.
The Logan Baker Foundation stepped in just in time, and Caleb will have a chair for the upcoming tournament. The chair will be awarded tomorrow in a surprise presentation at Russell Stover’s.
Jonathan was born at 24 weeks and spent his first 6 months in the hospital. Because of his prematurity, he was diagnosed with periventricular leukomalacia (PVL), which resulted in him also being diagnosed with cerebral palsy, cortical vision impairment and feeding issues that require a GJ tube. On the GMFCS scale that ranks severity of cerebral palsy (1-5), Jonathan is a 5. He will always rely on a wheelchair for mobility, full lift and positioning by a caregiver. Please read what Jonathan’s mom has to share:
“As a parent of a child with special needs, you pray that your child feels loved and included when he’s away from you. One of the hardest things to do as a parent is trust your child with another individual and it’s even more difficult when your child has special needs, is non-verbal and relies upon others for everything. Letting go of that need to be there to help him through everything has been difficult this first year of Kindergarten, but I’m trying. My biggest desire for my child is for him to know he’s loved by his Creator, by his family and by his peers. Part of this includes him feeling comfortable and fitting in.
Typically developing children his age are usually able to climb into their own car seats and in some cases, buckle themselves in. For Jonathan, it’s not. When I load Jonathan into my van, he’s a full lift into a 5 point harness car seat into the van. While it’s not the most important reason to require a wheelchair accessible vehicle, the idea of not having his peers see him handled like a toddler or infant is important. There’s also the safety consideration for Jonathan. Right now, he weighs about 40lbs. As he’s gotten bigger, I’ve been able to adjust to handling him, but it’s getting trickier with his weight gain (about 5 lbs in the last 6 months) and his feeding tube and venting tube lines. He is fed about 20 hours per day, so he is almost always hooked up. I’m consistently worried that I’m going to catch his feeding tube extension on his chair. It’s happened a few times already. If his tube comes out or bursts from tugging, it requires a trip to the downtown hospital ASAP.
The practical consideration with acquiring a wheelchair accessible van is that Jonathan’s chair will soon outgrow our van. We have less than half an inch left in the rear of a our van once Jonathan’s wheelchair is placed inside. As Jonathan grows bigger, his wheelchair will widen as well. It will be extremely difficult to transport him, along with his two younger brothers if we do not have space for his chair.
The reality for our family is this: as Jonathan grows, our vehicle will have to change. Our current van is 15 years old and becoming more tired. We are hoping that we can keep it going for 6-12 more months. We simply can not afford a wheelchair accessible vehicle without financial assistance from organizations like yours. To have a reliable vehicle that could safely transport all of our children would be life-changing for us. We understand that this is a large thing to ask for, but I’ve also resisted applying for assistance from Variety in the past because I’ve known that this would be a large, pressing need for us in the future.
Jonathan is a happy child who loves to interact with his peers. He has the sweetest giggle that is infectious because you never know what’s going to set off a giggle-fest. He loves music, being silly, taking walks outside and swimming. He loves to go to the park, take walks and simple things, like going to the store with mom. My favorite of Jonathan’s qualities is his joy in life. His smile can light up any room.”
When Variety KC received this letter, we knew we had to help – and we knew that Variety partners would want to help Johnathan! Having a safe vehicle that fits children and equipment is an absolute must! Transportation means access to medical services, to community involvement, and to inclusion! Help us to help Johnathan by donating in his name today – www.varietykc.org/donate/
Thank you for being part of the #inclusionrevolution!
Maddison is a lovely 8-year-old who has two siblings with severe autism. Maddison herself has been having difficulty in school and home with social skills and learning. Maddison has been diagnosed with ADHD, severe anxiety, failure to thrive, and reading impairment. She has medication, but her anxiety prevents her from willingly taking it, so it’s always a struggle..Maddison is a spunky sassy girl who loves being girly, but also loves sports and Pokemon. Maddison loves ice skating, watching sports, drawing and swinging outside and in the playroom to get the sensory regulations she needs. She loves to color with smelly crayons and markers even drawing her own scenes. The family’s favorite activity together is going to the Variety playground which allows mom to let all three kids simply themselves with the safety of the fence.
Maddison loves school but comes home crying because other kids bully her do to her learning disabilities and language disorder. She tries her best, but her grades are falling and mom is pushing the school to provide everything Maddison is entitled to. Unfortunately those services are delayed while waiting for another IEP meeting. Maddison uses a touch screen laptop at school and has difficulty transitioning to a PC computer with mouse for her homework.This transition causes her anxiety to flair up and leads to meltdowns and incomplete school work. A tablet of her own would allow her to practice more at home with text to speech and speech to text, allowing her to complete her learning websites provided by the school. She was making great progress with one program, but that program alone costs $155 each year. Every cent counts when a family is raising three kids with special needs!
An iPad will allow her to have something to help her with her anxiety when out in the community. It would provide a communication safety net for those times that she is overwhelmed. She has tried these programs before and it has helped her in the classroom and home. Because she has been diagnosed with failure to thrive, Maddison has a feeding tube. Her anxiety makes tube feedings very difficult and an iPad would provide a great distraction during feedings.
Maddison’s anxiety causes her to chew anything she has access to – she has chewed car doors after leaving the doctors, chewed her sleeves during school and on the bus. The noise canceling headphones would allow her to self regulate in the classroom, bus and home community setting. Finally, a car harness would help with anxiety and impulse control in the car – currently she gets out of her seat belt and distracts the driver.
These items would improve Maddison’s education and life so much allowing mom to work more with her to get her to be able to read at grade level instead of kindergarten level with peer classmates are reading at 3rd grade levels, allowing her to have confidence to no be bullied for her disorders we deal with extreme bullying daily with her. The iPad headphones and car harness will provide her a safety net for her anxiety out in the community.
These aids would be life changing for Maddison, helping her advance in school and gain confidence.
Can you help this family who is challenged with so many extra costs while raising three kids with special needs? Please donate today at varietykc.org/donate/
Liam is an amazing kiddo! His condition, Spastic Quadriplegic Cerebral Palsy, has created a number of challenges for Liam. One of those challenges is safely maintaining a comfortable position. In the past, Variety KC was able to help Liam by providing a “Tomato Chair.” These chairs are designed by therapists and engineers – creating a comfortable way to position Liam….and because of it, he has been doing great things! He has some movement in his hands and legs, and is now able to communicate visually.
Like all kids, Liam is growing. He has outgrown his old chair and needs help with a new one in order to continue participating and engaging from a safe position. Variety KC was there for Liam then and is there for him now! Sometimes a mobility need is something as basic as helping a child sit up correctly….that may seem like second nature to you, but for some Variety Kids, it’s next to impossible. Let’s make the seemingly impossible POSSIBLE for all Variety Kids. Donate today at VarietyKC.org/donate/
Variety KC partners with not-for-profit organizations around the area, and we were impressed by this request from a very caring teacher at Blue River Elementary.
“I have the privilege of teaching two students who are diagnosed with Cerebral Palsy. Our Physical Therapist provides the students with different positioning that is necessary for proper growth and range of motion. However, it is noticed that the general education population is uncomfortable with some of this equipment, such as a stander, because it makes the child taller and the amount of space it takes up prevents general education students from getting closer to their special peer. With this system, mobility disadvantaged students will now be capable of group interaction with peers, compared to the restraint of a wheelchair or stander, which limits independent interaction.”
This PUMA device would improve classroom connectivity for those with mobility deficits and peers. The harness system will allow students with mobility deficits to work together at the same level as peers allowing enhanced independence/social interaction. Research shows that improved mobility leads to greater learning for all populations. We would like to purchase the PUMA system and harness to accommodate elementary sized children, while the flexibility of the portable system will allow for utilization in all environments which will increase learning and social opportunities for all students.
“Both of the students at Blue River Elementary school are social and engaging. One has the most beautiful smile, while the other is a little ornery and laughs at teachers when they do things wrong. Watching them more closely connect with other students would be amazing!
For example, how exciting to see a table set up with a train set (one student just loves to play with Thomas the Tank trains) – and now, he can move independently move around the area to play with his friends without the restraint of his wheelchair!”
Variety KC knew we need to make this happen for all the kids at Blue River Elementary, and through generous donors and supporters like you – it was made possible! Help all kids to connect at school, at home, and wherever possible – donate today at varietykc.org/donate/ #inclusionrevolution