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 (Hunters iPad is outdated, has battery troubles and a cracked screen.)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.
Alyssa is a charming little girl with the best eye lashes and gorgeous curly brown hair. She is always laughing and smiling, and truly cherished by her family and friends. Alyssa had a stroke in utero, (cerebrovascular insult) the results were global developmental delays – Alyssa is non-mobile and non-verbal. We’re sharing a letter from her mom:
Taking care of a special needs child doesn’t come with a handbook. No parent gets the chance to prepare for their life to change when their special needs child is born. While I was fortunate to have a great and healthy pregnancy, what I had not idea was my daughter Alyssa had a stroke. When we noticed Alyssa started having spasms, we weren’t sure what to do or where to go. Once we got help from her pediatrician and met a neurologist, an MRI confirmed she had a stroke in utero. Who knew that kids, let along newborn babies could have a stroke.?
My perspective on life has completely changed with my special needs daughter. Our family struggles daily with just the little things that we took for granted, like going to the store or out to dinner. Being able to get help from Variety KC will make our life a little simpler by providing us with a sense of security for our family as well as know that we are loved by others.
And Variety KC was able to provide that support and love through the gift of a communication device that gives Alyssa a “voice.” Now she can use the device to let her family, friends, therapists, and teachers what she wants and needs. It’s a life-changer! Through her “voice,” Alyssa can more closely engage with others and experience less frustration. Please help Variety KC to give every child a voice! Donate today at varietykc.org/donate/
Can you imagine being so frustrated that you hit yourself? Alyssa is non-verbal and as a result, she can’t communicate what she wants or what she needs – so she lashes out at herself because she doesn’t know what else to do.
Alyssa is a stroke survivor. When she was four months old, she started having infantile spasms and from there she became non-mobile/non-verbal. Today, Alyssa is starting to ‘scoot’ on her bottom to go from room to room. She’s determined! She’s also a sweet little girl who loves her family and looks forward to going to Pre-K to see her friends and teachers. A communication device will provide Alyssa with a better quality of life because she will be able to better engage with everyone in her life and communicate her wants and needs. Best of all, it will reduce the frustration that leads Alyssa to harming herself and will ease the frustration of her family and friends when they don’t understand her.
Variety KC believes every child should have a voice! Alyssa is getting hers, help us make sure every child gets the communication device they need. Donate today: https://varietykc.org/donate/