Wayne gave Sherri’s website a new look! Check it out, share and subscribe to her blogs!
The Adventures of Pumpkin and Cookie
Wayne gave Sherri’s website a new look! Check it out, share and subscribe to her blogs!
The Adventures of Pumpkin and Cookie
Derek and Mandy both have stories that are no less than amazing and spectacular!
In 2006, Derek was tossing around a football a a get together with friends. He decide to catch the ball as he jumped into the backyard pool. Unfortunately, he was in the shallow end and got a serious concussion. After being examined and treated at the hospital, his mom took him to her house and he slept for days. Soon after, he went to visit a friend. He was sitting there talking and found himself drawn to his friend’s keyboard. Though he had tinkered around with the guitar and he loved music, he didn’t know how to play the piano. Finally, he couldn’t resist the pull, walked over and sat down. He placed his hands on they keys and began playing fluidly and beautifully for hours!
Somehow Derek’s brain injury unleashed a composer within, as the music just bursts from his being. Derek says the notes float across his vision all day long, so he eventually has to stop to play and let them out. There have been reports of others who have received head injuries who became various types of artists. However, he is the first known to have, “acquired musical savant syndrome.”
Along with Derek’s incredible new abilities, he also battles insomnia, along with some memory and cognitive dysfunctions.
Derek is the first one to tell you he has been given a gift and he is determined to use it to make a difference! Derek brings awareness to children and adults living with cancer, autism, mental illness, homelessness and people with disabilities. Derek is on the Executive Board of the Invisible Disabilities Association, a non-profit organization that encourages, educates and connects people and organizations touched by illness and pain.
Derek Amato on Ingenious Minds
Derek heard Mandy sing and was quite impressed with her amazing voice and style. Several years later, he felt compelled to get in touch with her. At that point, he learned Mandy’s story.
Mandy had a passion for singing and music at a young age. Though she began having trouble with hearing loss, she kept pursuing her dreams. She went to Colorado State University for music education, but while there, lost the rest of her hearing and was removed from the program.
This, of course, was devastating to Mandy! Nevertheless, her father encouraged her to continue her love for music and not give up on her dreams. She began training herself how to sing without her hearing. She does so through muscle memory and with the help of an app on her phone to help her find “middle c.” Mandy takes off her shoes and feels the rhythm of the music through the vibrations on the floor.
In addition to her new single release, “The Script,” Mandy also just released her third album, Download Mandy’s new album, “All of Me!”
Derek and Mandy were guests on the Steve Harvey Show on 2/11/15
Derek Amato’s thoughts about “The Script”
TEDx Talk with Derek Amato
The moment you all have been waiting for!! OK maybe not, but here it is! The video of me speaking at the 2013 Invisible Disabilities Association Awards Night. Special thanks to CBS4 Ed Greene for helping me out!
In the past 18 months our family has been through some very serious tribulations. As you may know, I fight for my life daily due to Progressive Multiple Sclerosis, Chronic-Late Lyme Disease, Chemical Injury and Brain Injury.
In 2011, our mom, Carole was diagnosed with lung cancer. She is still battling it and we are both unable to care for our daily needs.
Later in 2011, our brother, Jim, unexpectedly passed away. Our family has been in deep mourning for his loss. Jim was one of those men who was always there for his family and friends. He was our champion, protector and I can’t even begin to express what a hole he has left in our lives.
Now, in December 2012, my sister was diagnosed with cancer. At first, they thought removing the tumors and having treatment would be the plans. But after her surgery, there was concern about the lymph nodes. She underwent a mastectomy and had over 20 lymph nodes removed (about half were malignant).
Everyone who knows my sister, knows she is a very strong and courageous woman! What some may not realize is that she is the glue that keeps everyone together. She is the one who “gets things done” in our family, with her grand-kids, friends and in her business. She is Superwoman!
Like many, with the economy, Deb and her husband’s businesses have been down (she is a graphic artist and he owns a drywall company). However, now they also have the added burdens of medical bills, deductibles, co-pays, coinsurance and expensive out of pocket medications.
Currently, she is now receiving chemo. As many experience, she lost her hair and struggles with debilitating fatigue, which is cutting further into her work and time with family.
I am trying to set up a fundraiser for my sister on Indiegogo. Thank you so much for considering helping me help my sister get through yet another major life challenge for our family.
Ask anyone living with illness or pain and they will probably be eager to share what many people have said to them over the years that they didn’t feel was very encouraging. In fact, many will tell you that they were very hurt by something someone said.
It is true, that some people in this world may say something that is intentionally judgmental or negative. Nonetheless, we believe that in many cases, friends and family really do want to be supportive, but simply don’t know how.
Some people choose to ignore the issue or person; some toss out platitudes like simple fix-its and others share what they feel is the right thing to say with an expectation that it will be met with appreciation for their insight. However, loved ones often they find themselves perplexed or even angry when instead of being elated by the comment, their friend or family member is clearly frustrated by what was said. Sadly, these encounters can lead to the breaking down of communication and the relationship as a whole.
The Invisible Disabilities Association Founder and President, Wayne Connell and his wife, Sherri, know all too well how relationships can suffer or even end. Wayne believes that loved ones need to learn what he calls, “The Language of Invisible Disabilities.” People can learn these communication and support skills by learning what to say and what not to say and why.
When they can discover why a certain comment or suggestion is not well received, they can gain a better understanding of their loved one’s perspective. This allows them to ascertain how and why certain comments may cause their loved one to feel misunderstood, judged or as if their situation, losses and perseverance are being minimized. As a result, they can move on to learning what kinds of interchange and assistance gives hope, encouragement and the strength to keep fighting.
All of these things are addressed in IDA’s book, But You LOOK Good! How to Encourage and Understand People Living with Illness and Pain, written by Wayne and Sherri (all proceeds go to IDA).
This book gives practical tips on what to say, what not to say and how to help. It also gives insight into why, we as humans, often respond the way we do to debilitating conditions that are not readily obvious. It shares how we may protect ourselves and try to protect our loved one with denial. And it explains how a loved one may appear as if they do not care, when in fact they do. Yet, they just find it too painful to acknowledge the situation, because they don’t want to see their loved one suffer. These points not only help friends and family, but they also help those living with illness or pain better grasp where their loved one is coming from as well. These are the first steps to restoring relationships.
The video below is from the Online Seminar, What to Say, What Not to Say and How to Help People Living with Illness and Pain with Wayne and Sherri Connell. It was presented during the 2012 National Invisible Chronic Illness Awareness Week (NICIAW), founded by Lisa Copen. Wayne and Sherri were Special Guests for the NICIAW Seminar, Invisible Disabilities and the Husband as Caregiver in 2010 that was also featured in 2011. IDA has been involved in the NICIAW week since it’s inception in 2002.
This article first appeared on the Invisible Disabilities Association Website.
Chronic Illness Tips: 263 ways to more than “just get by.” Available to download for FREE! Tips adapted from IDA’s booklet, But You LOOK Good! into a collaborative project by NICIAW Founder, Lisa Copen.
IDA Founder Guest Speaker for National Invisible Chronic Illness Awareness Week. IDA Press Release. July 15, 2012.
Invisible Disabilities and the Husband as Caregiver. IDA Founder and President, Wayne Connell. Interviewed by Lisa Copen on BlogTalk Radio. National Invisible Chronic Illness Awareness Week Online Seminar. September 16, 2010. Featured again September 2011. Listen Here
What to Say, What Not to Say and How to Help with Wayne and Sherri Connell. Online Conference Guest Speakers for the National Invisible Chronic Illness Awareness Week. Founded by Lisa Copen of Rest Ministries. Video.
Snickers is not only my pet. She is my precious baby and she alerts me when I have anxiety, stress, blood pressure, heart rate and sugar changes. She paws me, nudges me, sits on me and licks me until I calm down. When I am on the ground and need help, she barks and goes to get my hubby. She also alerts me when there are gas leaks or other smells in the house. Most importantly (tee hee), she barks (relentlessly) when she is out of water or food. Good thing! Cuz I’m doing good to remember mine!
An Alert Dog is just one type of Service Dog, which is trained to assist a person with a disability, by performing tasks that mitigate their disability. There are many specific requirements and qualifications for being a Service Dog.
Alert Dogs help many with PTSD, TBI, Diabetes, Autism, anxiety disorders and more. Many can even remind people to take their medicines, wake them up from nightmares, retrieve items and even call 9-1-1.
Although Snickers can perform several tasks for me, I do not take her to restaurants and such. She does not at this time have the proper behavioral training required to stay focused on me. However, we did take her on our latest trip out of town, in which she was a huge help in keeping me calm and watching out for me in the car and where we stayed.
Therapy Animals and Emotional Support Pets are not the same as Service Dogs and are not granted entrance into public places. However, Therapy Dogs that have had specific training can receive permission to enter such places as hospitals, long-term care centers and schools for therapy purposes.
Read about Service Dog guidelines and requirements from the Invisible Disabilities Association.
NOTICE! I do my best to relay information, despite my severe cognitive dysfunctions. Yet, I may not always convey what I intended to say. Please remember that I am not a medical or legal professional! Seek legal or medical advice from an expert. Thanks!
As you probably already know, I live with horrible pain, flu-like symptoms and cognitive disorders 24×7, due to Multiple Sclerosis and Lyme Disease.
I may flash a split second smile for a photo or turn on the video camera for a few minutes once in a great while. But very few people have ever seen behind the scenes of what I live with daily. They don’t see me before or after a video, phone call, visit, etc.
People may see me on a video and think, “Wow! She doesn’t LOOK sick!” But they have no idea how trying to think, talk and articulate for just a few minutes sends me into instant, unfathomable agony! I have so many ideas for videos, but they are lethal!
It just makes me so angry that I can’t do the littlest things without feeling like I am being beat by baseball bats and dragged by a truck!
Serious subject, but I tried to toss in a little humor!
Meet my new friends, Luis and Tuesday! Let his story take you on a journey of how this soldier sustained debilitating, invisible injuries that nearly left him a prisoner in his own home. Luis lives with Post Traumatic Stress Disorder and Traumatic Brain Injury.
It wasn’t until Tuesday, a Service Dog, came into his life and rescued him that Luis was able to live again. He is the author of the book, Until Tuesday: A wounded Warrior and the Golden Retriever Who Saved Him, which debuted at #18 on the New York Times Best Sellers List! Luis and Tuesday are bringing awareness and hope to those with PTSD and TBI.
Luis will be the Keynote Speaker for the 2011 Invisible Disabilities Association’s Honor Awards Banquet on October 2, 2011. He will also be in Denver at the Tattered Cover Bookstore on July 12th. See their site to find out when he will be in a city near you!
Watch Luis and Tuesday’s Story
Facebook: Luis and Tuesday on Facebook
Official Site: Until Tuesday
See Luis and Tuesday on CNN: Fmr. Army Captain: Dog saved my life
See Luis and Tuesday on CNN: Service dogs essential to military. CNN. May 6, 2011