We appreciate the referrals from our partnering organizations, like this one from AbilityKC – about a little boy named Johnier.
“Johnier attends AbilityKC for outpatient services in both occupational therapy and speech therapy. He has a medical diagnosis of Autism Spectrum Disorder and developmental delay. Johnier is a pleasant, curious and motivated 5-year-old boy who is functionally nonverbal and requires the use of an ACC (LAMP Words for Life) device to effectively express his needs and function in daily activities. Johnier is currently learning to communicate through a loner ACC (LAMP) device at home, school and during therapy sessions. Johnier is not yet an independent user with his device and relies on contact gestures for immediate needs. He is able to communicate preferred wants on the device with visual or verbal prompting. He has the fine motor skills required to isolate his index fingers and accurately push on a selected icon for independent use of the device. An AAC device such as (LAMP) is the most appropriate mode of communication that will allow him the greatest independence to participate during learning, socialization and everyday activities considering his fine motor abilities.
LAMP Words for Life requires the use of distinct motor patterns to access and grow one’s vocabulary. Johnier had delayed motor skills, play skills, developmental and cognitive delay and problems with sensory processing. Since he is experiencing such delays, he requires consistent motor patterns for accessibility to vocabulary without a demanding cognitive load when participating in activities. Without access to a device, Johnier is unable to fully participate in occupational therapy sessions as he cannot verbalize wants and needs or distinguish between choices, which leads to temper tantrums that can take extended time to recover from. It is medically necessary for him to have a device to participate in school and everyday activities because communication is required for learning, socialization, and basic living needs.”
We agree! And Johnier is getting his device. Communication is required for learning, socialization, and basic living needs for all kids! Won’t you help Variety KC to help give all kids a voice? Donate today, www.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/
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.
Declan is on the autism spectrum and is nonverbal. His family is seeking a device to help him communicate his needs. KCDT proposed to use the LAMP program and we are excited to try it for him.
Here’s what his KCDT therapist says:
Declan makes limited verbal sounds and does not make any sounds or oral motor movements in imitation. He is very sweet and loves to swing and listen to mom sing songs. When KCDT first started with Declan, he had PECS available to him in order to make some choices for requests. As he was toilet training, mom wanted him to be able to tell her when he needed to use the bathroom. Mom started wearing pictures attached to her clothes in order to help him communicate his wants and needs. This of course was limited by how many pictures she could fit on the small board she attached to her shirt. This also limited him to request objects (toilet, drink, snack, tv). As KCDT started to get to know him more, they suggested trailing a more robust system of communication. We decided to use LAMP Words for Life as he demonstrates some motor planning difficulties and this system is specifically designed for language acquisition through motor planning. Declan’s mom has been a great advocate for the use of the device and has even started programming different boards with the loaner device. She understands the importance of aided language stimulation and models often for him. Our hope is that once he has his own device he can use it at home, in school, and in therapy in order to help him communicate his thoughts, ideas, wants, needs and dislikes. I would recommend a regular size iPad with LAMP app in a protective case.
Variety KC applauds Declan’s creative mom – what a problem-solver! And our donors want to help DeClan get the device he needs! Help other kids like Declan to get a voice – donate today at varietykc.org/donate/ Thank you!
What is it like to raise a child with the following disabilities? Severe autism, pervasive developmental disorder, unspecified (F84.9), Sensory processing disorder, Impulse control disorder, ADHD, Charge syndrome, Sleep disorder; At risk for elopement; Chronic idiopathic constipation; and Eczema. Read the letter below from Isabella’s mom and you’ll see that Isabella has a very full life and lots of interests, and just needs some special equipment to make the world easier to navigate.
Isabella Is a 6-year-old with severe autism. She is not potty trained, and has communication difficulties along with anxieties in the community. She is an active child who is currently dealing with chronic bathroom issues that has resulted in hospital stays last year and it looks like there is another one potentially in her future.
Isabella has impulse control disorder she will take off without a notice we use her medical stroller for most of her outings to help with her anxiety and wandering. Isabella has multiple doctor appointments which we use the iPad as a distraction she currently has a iPad 3 that is on its last leg with cracks on screen case nearly falling off battery life is nearly just enough to handle a small outing. Isabella uses gun ear muffs for noise control, but that buts a big target on her at school for bullying we are wanting noise canceling headphones to allow her to look and fit in with the crowds to allow “normalcy” even for a bit. She uses them all the time from severe storms, trash trucks picking up trash, mowers, stores etc…….
She LOVES sports from Baseball, Hockey Mavericks (hockey horse) and football. Isabella is also a technology kid – she LOVES music and is always singing in her own Bella way. Her fav tune is “Baby Shark Metal Version” – it’s so cute she has learned a lot of social cues from videos and apps which is wonderful.
As a family with multiple children with special needs, it makes it difficult to provide everything that is needed for them to succeed. We have two severe autism kiddos and a developmental disorder kiddo – it makes for a fun day in our household especially when a beloved item isn’t working right causing meltdowns and fits. Isabella loves to ride her trike which is getting small for her but loves to put the tablet in her basket and just jam as we ride the tricycle its adorable to see her confidence grow over the years. We travel to Columbia Missouri every month for MU Childrens hospital and Thompson Center to get the kids the best care available for autism and etc. The thompson center is the number 1 autism center in Missouri and worth the drive and money it takes to go out there multiple times a year we use the iPad for those long trips along with waiting room waits which are difficult for Isabella we have a travel bad just for her to help sometimes. Isabella loves video games especially Minecraft I may not get the concept of the game but she loves it just destroying the blocks and building them over and over lol the average cost of one special needs child is like 3 normal children cost and our family we have 3 special need children every cent is tight and accounted for to provide for Isabella and her siblings
isabella’s personality is spunky and sassy. She loves to jump on the trampoline, ride her trike, and she is a heavy sensory seeking kiddo – she loves tiny figures to just carry in her hands (safety blanket type) she loves video games and her all time fav therapy to do was dancing and bowling.
An iPad would allow her, along with us, to use school apps in classroom to work on at home to help her keep up with classmates. Currently she is being placed In a regular classroom and pulled for special education classes to fit her learning plan.
Variety KC’s donors believe that all kids need a voice – and Isabella is getting her iPad. Please help us to make sure every child has a way to communicate their needs and wants. Donate today at varietykc.org/donate. Thank you!