Sweet and Sassy little Olivia has a lot to say – just can’t say it!
“We were blessed to meet our little Liv at two days old when she was in the NICU at Children’s Mercy, we were blessed to be able to fully adopted her 13 months later. Liv spent seven weeks in the NICU where she struggled with feeding, maintaining her core temp, breathing and a few other life threatening conditions. Coming home on oxygen and continuous G-tube feed, little Liv fought hard and within a few short months she was able to only need PRN oxygen and only need continuous feeds over night. She had several inpatient stays the first few years of her life, it felt like at least once a month we were at Children’s Mercy for almost a week.
The various hospital stays always left us with something new to overcome. Whether that would be a surgery, new diagnosis, and one time sending us home palliative care. Liv needed open heart surgery in June, 2019 to repair one of her two congenital heart defects. Since then, Liv has had so much more energy and more lively, but the difficult part is that Liv is non- verbal. When she is upset, in pain, happy, hungry, sleepy, or just wants some quiet time – she is unable to communicate that to us, she school team, hospital staff, anyone. So being able to have Liv communicate to us would mean the world and much more.
It’s hard to describe as a mother feeling so helpless not being able to figure out what your child needs because they are unable to communicate their wants and needs. Our family truly believes a communication device will change all of our lives and caring for Liv!”
Variety donors understand the importance of giving a child a voice! Olivia will get hers! Help us to ensure all kids have a way to communicate, donate today at VarietyKC.org/donate
Thank you so much!
|You’ve just gotta love a kid whose best friends are stuffed snakes and his big sister! Here’s the family’s story:
“Easton has a smile that brings smiles, warmth, and love to all those around him. He finds the simplest things in life interesting and worthwhile. Easton is two and half years old and was diagnosed almost a year ago with autism spectrum disorder and global developmental delays; Easton is non-verbal. Since his diagnosis, Easton has been receiving speech and occupational therapy services from an in-network provider almost an hour from our home. We make multiple trips per week (1 hour each way) to get him these services. With the transportation costs, time I must take away from work, and the in-network cap of 20 speech visits per year (Easton receives 3-4 a week), my husband and I spend a significant amount of our income to provide our son the services he desperately needs. Easton has also been on an ABA therapy waitlist for almost 8 months. With our hope of finding Easton a BCBA anytime soon, my husband and I are looking into trying to hire a RBT to work with Easton in the home. Easton’s speech therapist has strongly urged us to purchase an AAC device. Easton trialed another child’s device and responded very positively to being shown how to use it. Within two sessions, he had already mastered pressing the “help” selection. After seeing his face light up and the smile on his face, I knew we needed to do everything we could to obtain a device of his own. A device to give him a voice in his own life; a device that will allow him the ability to say, “I love you too, Mom.” Unfortunately with all the above listed expenses, in addition to our four year old daughter’s medical needs, we cannot to afford to make up the difference that the insurance company will not pay for.
Our daughter Emery also has autism spectrum disorder, as well as apraxia of speech. Emery has also been receiving extensive speech and occupational therapy services for the last two years. Due to our constant battle with insurance companies, we uprooted our daily life to move into a school district that could provide the appropriate IEP services. This move has also affected our family financial situation. I know there are so many families out there experiencing these same financial struggles, and you cannot possibly provide for them all; but whatever you can spare to help my family would be greatly appreciated and truly impact my child’s future. There are not enough words to describe what this would mean to us.
Some fun facts about Easton – he has three major loves: his big sister, the outdoors, and his stuffed snakes (stuffed animals). Easton and his sister are inseparable. While Emery’s speech still has much progress to be made, she is able to help communicate with others what her brother needs; Easton knows he can always rely on his sister to help him (even when it’s getting into trouble!). They will spend hours outside every week exploring their surroundings, playing in mud puddles, climbing into their treehouse, and laying on the trampoline. Easton is attracted to anything he can drag or whip around in the air…like his stuffed snakes. His snakes, as Emery says, “are his best friends”. He has five snakes, each 4-5 feet long. They go with him everywhere. The bring him instant happiness, calm him when his is upset or scared, and keep him company in his cubby hole (he climbs into his cubby hole when overstimulated). And only the snakes are allowed in the cubby hole.”
Giving a child a voice is really a gift for not only the child, but for their family, friends, and teachers. To help us give Easton and all non-verbal kids a “voice” – please donate today at www.varietykc.org/donate.
Kye is a sweet little boy who is also a fighter! He was prenatally diagnosed with a heart condition (hypoplastic left heart syndrome). After birth, he had a stroke. In spite of all of his diagnoses, he is pleasant and a go-getter. He has received therapy since he was three months old and it’s suspected Kye has apraxia of speech, which limits his ability to motor plan in order to produce speech.
Because he can’t communicate his needs, Kye will whine and cry from the frustration.
In the area of speech and expressive language, Kye’s verbal communication skills are significantly limited, and he is primarily non-verbal at this time. He has some occasional “pop out” words, but he does not typically use verbal skills as a means to communicate his wants, needs or thoughts. Kye is beginning to communicate through non-verbal means such as taking the therapist to what he wants or by making choices with the use of pictures of objects. The therapists have introduced Proloquo2go (P2G) on an iPad from Marian Hope Center that is used during his therapy sessions. Kye demonstrates an understanding of how to use P2G. With some assistance and when motivated, he is beginning to be able to scan the page and find the corresponding picture. Kye uses P2G to work on labeling pictures and objects as well as to make requests. It should be noted that Kye’s receptive language skills appear to be higher than his expressive language, but are also limited, when compared to same age peers.
The gift of a communication device would greatly assist his communication efforts. Although he is young, he has had experience communicating with an ipad using Proloquo2go and has had good success. His family says it would be an absolute blessing for him to have his own iPad to communicate in all of his environments.
Variety KC hears this story from about so many kids. Right now, while quarantined at home, the frustration from communication struggles is especially hard for kids and families. Variety donors are helping Kye, but we have so many more on the list. If you can help, please donate at www.varietykc.org/donate
Arthur’s mom explains:
“Art has a speech delay along with sensory and behavioral concerns. His primary communication is by pointing or directing you to his wants/needs, however lately he is showing an interest in using an app to point to pictures on my phone and that directs us to what he wants. This has helped calm down his tantrums and physical outbursts. We are currently a one working family of six. I have stayed home to take care of four kids, and both of our youngest have speech delays and multiple therapy sessions each week.”
They are attempting to purchase a family home and just don’t have the budget for a personal device and apps right now but know that it would make a world of difference for Art!
This letter was written before the #stayhome order was in place. Can you imagine being isolated with a young child who can’t communicate their needs and wants? The personal devices they work on in therapy stay in therapy and when they get home, the frustration comes out. In this case, there is no scheduled therapy because of COVID-19, so the lack of a device means the lack of progress for Art. Please help Variety KC make sure that all kids have a voice! Donate today at varietykc.org/donate/
Recently we heard from Silas’ therapist. He’s a three-year-old with a diagnosis of Autism Spectrum Disorders and is nonverbal, but he’s been working really hard at that. In fact, he has been involved in toddler and preschool classes, individual speech-language therapy, and ABA services since February 2018. He has participated in the Pathways program since August 2019, where he receives daily, intensive interventions for speech, occupational therapy, physical therapy, music therapy and behavior. Here’s what his speech therapist told Variety KC:
“Over the course of the treatment sessions, I have introduced Silas to the iPad with the ProLoQue application, and he has shown the ability to attend to and imitate my models. Additionally, he has retained knowledge from previous modeling, to then use some of those words spontaneously on the device at a later time. I am recommending the Apple iPad with ProLoQue augmentative communication application for Silas. Having access at all times (home, school, community) to a robust communication system will allow Silas to communicate more of his wants/ needs, and be able to increase the variety of communication functions he uses, such as giving directives and making comments.” Karianne Radovich, M.S., CCC-SLP
Karianne brings up a really critical need, the need for access at all times, not just school. With our schools closed, so many kids are going without the therapy they need and devices they use. Variety KC is reaching out to donors and families to make sure every child has a voice and a way to be heard. Please donate today at www.varietykc.org/donate/ Thank you!
Variety KC Installs Inclusive Communication Boards in Playgrounds
Above and beyond what is considered an inclusive playground (physically allowing all kids to engage and play together), Variety KC is installing inclusive communication boards to aid engagement between kids and parents or caregivers, kids and other kids, and between participants speaking different languages.
Deborah Wiebrecht, Variety KC’s Executive Director, explains the impact of these boards, “By pointing or even simply gazing at the various symbols and pictures on the board, even young kids or children with limited expressive language ability can clearly express their needs and wants. It’s just one more way to remove barriers and make our playgrounds as inclusive as possible.”
Currently, you will find a communication board at the new Variety KC Hospital Hill playground in front of Children’s Mercy. Eventually the boards will be available at all six of the Variety KC playgrounds, plus playing fields and community facilities. For more information, contact Deborah Wiebrecht at 913-559-2309 or through email at email@example.com