Franklin’s mom shares the first three years of her sweet son’s life:
“My kind affectionate son had an interesting first two years of life. Just a few months old, he was diagnosed with Cutaneous Mastocytosis a rare skin disease with clusters of allergy cells on the surface of his skin. He has approximately 20 clusters. Around 6 months of age we began to introduce foods starting with baby cereal, and he threw up until it was blood. He was then diagnosed with FPIES and had to be on a grain free diet. By 16 months he was receiving MO First Steps speech therapy, occupational therapy, and feeding therapy. At 26 months old, MO First Steps began providing ABA therapy. Franklin finally began to make progress in therapy and our incredible ABA provider recommended Ability KC for an ACC device fitting. My son understands direction and attempts to communicate through nonverbal cues, screeching, minimal sign language, and has less then 10 unprompted words. A communication device with the program touch chat would be giving a voice to my son. This would empower him to ask for what he wants, to consent to activities, to tell us what hurts when he is in pain, and to simply tell us what’s on his mind. In November, my son turns three and will start special education preschool and a device now would assist in his learning at school.”
It’s hard to imagine all that Franklin’s family has gone through in just three years, and what incredible gains! Variety KC donors know just how important the proper tools are in helping kids to keep moving forward and Franklin is getting his device and apps. There are so many young kids who would benefit from their own communication device, you can help Variety KC give them a voice – donate today at varietykc.org/donate. Thank you!
Samuel was diagnosed as Level III on the Autism Spectrum last fall. He participates in multiple therapies and works so hard. His hard work is especially noticeable in Speech Therapy where he is beginning to verbalize a bit when using an iPad and apps. Like so many kids, when Samuel can’t make his needs and wants known, he has tantrums and outbursts. Who wouldn’t? Can you imagine – no way to let somebody know you were uncomfortable, thirsty, or in pain? The iPad therapy is showing so much promise that Samuel’s therapist recommends having one at home to reinforce his therapy sessions and reduce frustrations in communication at home.
Variety KC donors understand this need and they want Samuel to find his voice! He’ll be getting his iPad and apps – won’t you help us to make sure every kid that needs one gets an iPad too? Donate today www.varietykc.org/donate
Thank you from the bottom of our Variety Heart!
Graham’s mother shares his story:
“Around 18 months at Graham’s checkup we mentioned that he didn’t have too many words. He grunted a lot. We applied for First Steps to get some speech assistance; however, he was denied. He was barely passed. We tried again 6 months later, and he got into the program. He did so great! He started learning to say one syllable words. He was in the program for a little over a year. At that time, he started putting two words together. He still had trouble putting whole words together. For example, he would say “bu” for “bug” and “dah” for “dog”. He kept dropping either the first sound or the last.
We put ourselves on a waiting list for Children’s Mercy for their speech program. It took several months, but by the time First Steps ended, we were able to keep going in therapy. His speech pathologist at Children’s Mercy diagnosed him with speech apraxia. Childhood apraxia of speech (CAS) is a speech disorder in which a child’s brain has difficulty coordinating the complex oral movements needed to create sounds into syllables, syllables into words, and words into phrases. Typically, muscle weakness is not to blame for this speech disorder.
Graham is a hard worker. He tries and tries. He is persistent and he doesn’t give up. He is great at imitating sounds but getting some of the sounds to come out is still a struggle for him. He has been in the school district preschool for little over a year and has made so much progress. Many still can’t understand what he is saying, but that doesn’t stop him from trying. He is great at either acting out what he needs, or he will show you. He may not be able to speak at our level, but that doesn’t stop him from trying. I’m so proud of our little dude. I spoke with his speech teacher Ms. Julie at his preschool and they have been using TouchChat HD with him to help with communication. She has said he has made great progress with the application. He will put sentences together and he will say them back. The audio helps him listen to the sounds and helps him say them out loud. She recommended that we should use it at home as well. This application would be so helpful for Graham. Graham loves to draw and make things. We spend hours doodling and using our creativity. He enjoys playing with his robots.”
This little guy is working so hard and it sounds like they have made such great progress with TouchChat HD. Especially now, during home isolation, it’s so important to make sure that kids in therapy have the equipment they need to use at home! Help us to give Graham his voice. Donate today at varietykc.org/donate/ Thank you!
Now, that’s a smile! Tatem is a young woman with spastic, dystonic cerebral palsy. Tatem and her twin brother were born 3 months premature (26 weeks old) and are both miracles. Tatem is unable to walk, or perform fine motor movements, so she moves in her wheelchair. She needs assistance with toileting, eating, writing and other small tasks. She is smart and adaptive, so Tatem uses technology to overcome some of the physical challenges she faces. For example, an iPad w/ a microphone handles Speech to Text conversions. This allows her to attend standard classes with her fellow students.
In order to know and understand Tatem, you have to understand just how fiercely independent, driven and hardworking she is. Throughout her academic career she has worked very hard to keep her in the advanced classes that can challenge her. Tatem is attending Oak Park high School and maintains a 4.0 Grade point average. She is enrolled in Honors classes and has ambitions of going to college to become a writer. Over the course of her student career, she has received Student of the Month four times and was awarded the “Hope Award” in 2012 at the Liberty School District. She enjoys being a part of school activities like theater and clubs such as “Blue Ink Society.” Her proudest achievement is being elected to student counsel her 8th grade year. She worked on a speech and ran every year for four years. Each year she would be disappointed and frustrated but vowed to keep trying until she got it. The student council story is what personifies Tatem. She struggles with physical disability; yet her spirit, work ethic and positive attitude is her gift. She inspires everyone she comes in contact with and brings out the best in everyone around her.
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!
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/
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