Coming up this December, and FOR THE FIRST TIME EVER, we’re opening the Liberty Cafe at Discovery Middle School. This pop-up style cafe offers a chance for students to practice job skills (serving Roasterie coffee) and get therapy at the same time.
Students move out of their wheelchairs and are situated in the upright portable harness system. This allows them to interact with “customers” at eye-level and experience the world from a different perspective. Our therapists point out it also is beneficial in strengthen muscle groups and for circulation.
Building strength, skills, and confidence! Variety KC’s sponsors and generous supporters have made this possible for the first time ever, in any school!
Boston was diagnosed with autism and has not used any words for communication. His ABA Therapist has been working with him using the Touchchat app on her iPad and he is responding really well to it!
His parents have tried using pictures to help him communicate at home, but is just isn’t working as well as Touchchat and they simply can’t afford a device at this time. Their hope is that he continues to understand the pictures on the app and can translate that understanding into speech. The beauty of Touchchat is, even when speech begins to develop, the app is beneficial in adding new words.
All they really want is to know what Boston wants and needs!
Variety KC partners believe every child should have a voice and a way to be heard. Boston received his device, but there are so many more kiddos who need them. Can you help? Donate today at varietykc.org/donate/
Noah is a young boy with autism spectrum disorder (ASD). ASD refers to a broad range of conditions characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication. According to the Centers for Disease Control, autism affects an estimated 1 in 59 children in the United States today.
Noah is non-verbal and has a busy schedule. Noah splits time between mom’s house, dad’s house and daycare… as well as extended family members houses who help with childcare. At school, Picture Exchange has proven to work for him, but it is extremely hard to manage and keep the hundreds of pictures organized and together between location transfers. A communication device would be ideal for Noah to express his wants and needs.
Despite both parents working,(they are raising 4 children, one with special needs), and it’s difficult to find the extra dollars for a communication device such as an iPad with Touchchat.
Variety KC partners believe that every child deserves a voice, a way to communicate and alleviate the frustration of not making their needs, wants, and thoughts known. Noah is getting is device, but there are so many more who need them. Please help us give every child a voice – donate today at VarietyKC.org/donate/
McCoy was diagnosed with these disabilities: 1q43-44 Deletion Syndrome, Complete Agenesis of the Corpus Callosum, Microcephaly, and Global Delays. However, McCoy’s conditions don’t begin to describe the determined young man you see here! Just read what his mom has to say:
McCoy is the most determined person I have ever had the pleasure of meeting. From the moment he was born he has had to work very hard to learn skills like sucking, swallowing, smiling, reaching out, grasping items, sitting up, and many others skills that come so easily to most of us. Although he is non-verbal, it is clear by simply looking into his smiling eyes that he has so much to say! It is a real struggle to see your child full of personality, but not have a voice or physical ability to convey his needs, feelings and opinions. Having a way for him to express things like wanting a drink of milk, or if he is ready to get our of his stander, would also be giving him the gift of independence. If eyes could speak his would be that of a million words. Providing him a tool like Touch Chat with a unit that is easy to handle and use like the iPad Mini with keyguard could open up his world to so much possibility!
Variety KC wants to help McCoy express those million words and he is getting his communication device. Every child needs a voice….a way to connect…to express wants and needs. Won’t you help us to help others like McCoy? Please donate today at varietykc.org/donate/
Variety KC recently received this letter on behalf of Hunter, a teenager going through a number of life changes:
Hunter is nearly a teen and has been diagnosed with severe autism, simple complex seizures,impulse control disorder, ADD, feeding difficulties with feeding tube.and pervasive developmental disorder.Even with these challenges, he is in main stream courses for science and math (for just the second time ever!)
At school they work online with Mac computers and when they send home homework, he is having trouble with the different formatting on his old iPad. His autism team confirms that newer device will help Hunter out, but his school doesn’t provide devices for home use. (Hunters iPad is outdated, has battery troubles and a cracked screen.) A bigger screen will help him out because he has glasses, which are hard to keep on him.
Hunter also has noise sensitivities like most autism kiddos, and it’s been suggested that we try the noise canceling earphones so that the old big earphones don’t call attention to him at social events or in the school setting. Hunter is very excited about electronics and he will work on other projects in exchange for time on youtube. We also use the electronic device to encourage communication with other peers his age. Hunter has extreme social behaviors he tends to stay to himself unless he is prompted by parents with what to say. This would change both Hunter’s life and his parent’s lives during his hard transition to teen years and to middle school main stream classes.
Hunter’s personality is spunky! He enjoys electronic items, trains and nerf guns. His meds make it hard for him to be out in the sun because he can come down with heat stroke faster…so he tends to stay inside where its cooler. We enjoy watching learning shows, how-to shows, shows about trains (lots of shows about trains, he is so fascinated by them! You would be shocked to hear the amount of knowledge he has discovered about trains over the past 10 years.
Variety KC partners have seen tremendous benefits from the use of communication and assistive technology devices and Hunter is getting his new iPad. Please help us to make sure that every child has the tools they need for success at school and home. Donate today at VarietyKC.org/donate/ Thank you!
A loving letter from Oliver’s Mom:
“Oliver has Kabuki Syndrome (read more about this syndrome below), he spent almost three months in the NICU due to hyperinsulinism, and with a high arch palate, he couldn’t do oral feeds. We didn’t know he had kabuki syndrome until we had been home a few months. He learned to walk at age 26 months after lots of therapy. He is non-verbal and communicates using an IPAD at the new B.E Smith Family center. He is also going to start some therapy at our local elementary school and they also have access to an IPAD/proloquo2go. He has low muscle tone, as well as developmental delays. He is in therapy 4 days a week and works really hard, but communication is our biggest struggle. We have taught him some signs as well.
Oliver is the youngest of five and tries really hard to keep up with his siblings. Our biggest goal is to help Oliver be able to communicate what he needs/wants to us so that we can better help him. Oliver is a determined, hard working boy who goes to therapy several days a week to try and work on speech, feeding, physical therapy and occupational therapy. He works very hard and we know that this would be a great resource for him. When you watch Oliver use the IPAD at school to communicate with his speech therapist you see his face light up as he hits the button and can hear the app saying what he wants to say. It is like he is saying YES that’s what I have been trying to say. He gets frustrated easily with us when we don’t know what he wants and that is hard to watch.
Our biggest goal for Oliver will be to have him in a regular class setting in two years when he starts Kindergarten. How great it will be to watch him communicate with his peers through this app on the IPAD. We have four other children that just want Oliver to be treated like everyone else and we want nothing but the best for him. Communication is such an important part of life, this gift would be such a blessing to our entire family. Thank you for giving Oliver the gift of communication, we can’t thank you enough.
Oliver is such a fun loving kid, he loves to laugh and play with his siblings. Our favorite quality is his determination. We have had doctors tell us Oliver would never crawl, walk, eat orally…..but just watch him defy odds and prove everyone wrong. This is priceless for us, we have no limits set on what Oliver can accomplish. We are just along for this amazing journey. Every milestone is a BIG deal in our house.
His favorite things to do are jump on the trampoline and swing on the swings outside. Garfield is his absolute favorite and he could watch that crazy cat all day if we let him. Music is Oliver’s absolute favorite and he will do anything for music.
Variety KC is in awe of Oliver and all he’s accomplished – and Oliver will get his communication device. Help other young heros like Oliver to be able to communicate their wants and needs. Donate today at varietykc.org/donate/
About Kabuki Syndrome: Kabuki Syndrome, a disorder that affects many parts of the body. It is characterized by distinctive facial features including arched eyebrows; long eyelashes; long openings of the eyelids (long palpebral fissures) with the lower lids turned out (everted) at the outside edges; a flat, broadened tip of the nose; and large protruding earlobes. The name of this disorder comes from the resemblance of its characteristic facial appearance to stage makeup used in traditional Japanese Kabuki theater. People with Kabuki syndrome have mild to severe developmental delay and intellectual disability. Affected individuals may also have seizures, an unusually small head size (microcephaly), or weak muscle tone (hypotonia). Some have eye problems such as rapid, involuntary eye movements (nystagmus) or eyes that do not look in the same direction (strabismus).
Other characteristic features of Kabuki syndrome include short stature and skeletal abnormalities such as abnormal side-to-side curvature of the spine (scoliosis), short fifth (pinky) fingers, or problems with the hip and knee joints. The roof of the mouth may have an abnormal opening (cleft palate) or be high and arched, and dental problems are common in affected individuals. People with Kabuki syndrome may also have fingerprints with unusual features and fleshy pads at the tips of the fingers. These prominent finger pads are called fetal finger pads because they normally occur in human fetuses; in most people they disappear before birth.
A wide variety of other health problems occur in some people with Kabuki syndrome. Among the most commonly reported are heart abnormalities, frequent ear infections (otitis media), hearing loss, and early puberty.