Camilla Downs ~ Camilla is mother to two children, Thomas, six years old, and Lillian, nine. She is a Special Needs Life Coach and author of D iz for Different – One Woman’s Journey to Acceptance. They call themselves Team TLC and love adventures. Lillian was born with a chromosome abnormality called 18p- which primarily manifests in communications deficits. 18 p deletion affects 1 in 50,000 children. Lillian has inspired Camilla to be a proponent for non-verbal and speech-impaired individuals, their families and caregivers in using technology and social media to communicate and improve quality of life. “Opportunities exist as never before for speech-impaired individuals to be business owners and entrepreneurs because of social media and technology”.
Geri Kochis ~ I am married and have 4 wonderful children. My family and I live in Boise, Idaho, and yes our football turf is really blue. My youngest daughter Emily is my inspiration for contributing to this blog. Emily was diagnosed with a rare genetic syndrome 18p- which effects 1:50,000 live-born infants. My personal blog details how I feel about raising a child with special needs and how I navigate various systems to better my daughter’s future.
Sara Jackson ~ By day a TV executive and in my spare time a mum to two wonderful boys, wife to wonderful man, writer of kids stories and novice blogger. My youngest son Louis has a rare genetic disorder called 18p- and was diagnosed at 9 months old. He and his big brother Jacob are the lights of my life and the reason why I no longer have any existentialist angst, because I was born to be their Mummy. I will be popping in to Different Iz Good every now and then to think about all the things that this blog inspires, and scribble some words and thoughts in my quest to help the amazing Camilla make the world a better more tolerant place.
Alisha Marie Peters ~ I am a full-time Title One preschool teacher at a school for children with special needs. I do love my job, but my true passion is being a mother to one most amazing little girl. I feel that is my true purpose in life, and I would like to educate anyone and everyone I can about her. My daughter Emarie was born on the early morning hours of Christmas Eve 2007, and changed my life for good. For better.
She was diagnosed 2 weeks after her birth with the rare chromosome abnormality of 18q deletion syndrome. It is so rare, that not even any of her doctors here in our state of Utah know much about it, or have ever seen it.
I knew from the moment that her personality started to show around 2 or 3 months, which is always happy, that she could be someone to change the world. I’m doing everything in my power to help her along the way.
She is so amazingly resilient that it just blows me away! She will have undergone 12 surgeries before she even reaches three years of age. Her dad and I love her endlessly and are doing everything in our power to give her the best life possible!
Catherine Burzio – Catherine is currently the Transition Coordinator of the NEXT STEPS Transition Parent Center funded by the U.S. Department of Education Rehabilitation Services Administration (RSA). She served previously on the PEATC Board of Directors (past President) and as a PEATC Regional Trainer. She is a former Transition Specialist for Clarke County Public Schools and volunteers with The Chromosome 18 Registry & Research Society as the Vice President for Member Relations.
Catherine was appointed by former governor Tim Kaine to serve on the Virginia State Rehabilitation Council for the Blind and Vision Impaired. She also serves on the Alumni Board of Directors for Shenandoah University. Through her work in Transition, Catherine has established national working relationships with the IDEA Partnership Community of Practice, National Association of State Directors of Special Education (NASDSE) and the National Secondary Transition Technical Assistance Center (NSTTAC). Through these partnerships, Catherine has worked with several states and territories, including Wisconsin, Delaware, Pennsylvania, California, the Virgin Islands and the Bureau of India Education to provide technical assistance regarding transitioning youth and their families.
In May 2011, Catherine will complete her Masters degree in Transition Special Education with an emphasis in Collaborative Vocational Evaluation Training from The George Washington University in Washington, DC. Using both personal and professional experience, Catherine encourages families to take an active role in advocating for their children. She is the grateful mom of four children – Ashton, Pauline, JB and August.
Susan Moran – I am the mother of 2 daughters. One is 17 years old and one is 7 years old. Both are very special girls. However, IM, the 7 year old has some extras in her package. She has Chromosome 18p-. What this means for IM is she has many medical concerns. She sees lots of doctors and goes to OT, PT, and speech. What this also means is that we are challenged daily to celebrate life as she does. There are MANY celebrations often. And we happy dance for them all. She loves to sing, dance, run, jump, play with friends and play pretend and teach us all about life in IM’s world! In spite of the long list of might nots and probably wonts, she is a very bubbly and verbal and active girl. We celebrate life and differences daily. Thanks IM for helping us to focus! Hugs all!
Monica McDivitt – Monica is married to her best friend, John, and is a proud mommy to her sweet, beautiful 10 year-old daughter, Samantha. Samantha was born with multiple disabilities as a result of a chromosome 18q- deletion. Samantha is Monica’s inspiration for the many volunteer projects that she participates in for children and adults with disabilities.
Her current project is a buddies program she created in 2007 for Samantha’s elementary school in Katy ISD. The program is slowly expanding and now exists in one other elementary school and two middle schools. The motto is “It’s not the little ways we are different. It’s the big ways we are the same.” Her vision has been to create an environment where differences are accepted and attempts are made to educate those who may be fearful or unaware in relation to the culture of disability. She is achieving this by teaching all children and teens, with and without intellectual and developmental disabilities, to embrace differences and become caring friends.
Monica has a background in ER Nursing and Cardiology Research Nursing and she is honored to be a contributor to Different iz Good.
Loni Scovill Smith – I am a stay-at-home mom to three awesome kids – Alayna, Audrey and Ian. In my free time, I’m a photography enthusiast.
My son Ian has been diagnosed with Childhood Apraxia of Speech. It has changed the dynamics of our family in a lot of ways, but we all have special, fun ways of coping with it.
Ian is such a monkey and has a bright attitude, perfect laugh and a stubborn streak like no other. His two older sisters adore him like crazy and oftentimes become his translator.
My goal with being a contributor to this blog is to give other parents of speech-disabled children (particularly apraxia) a reason to hope, a reason to laugh and a little peace of mind that their child/children will be okay.
Maria Barber – My name is Maria and we have a little girl with cerebral palsy, Lila (4 1/2 yrs. old). We are trying to raise awareness as to the struggles and blessings of CP, as well as raise funds for stem cell therapy. We hope that we can help families/individuals around the world in our situation, and be able to inspire others to make a difference, be it small or large! Our blog is Mommy You Know What.
Andy Flowe – I was born in 1989 with the best big sister anyone could imagine. Sammie, who was born with Tetrasomy 18p, is my best friend, one of my biggest influences and certainly my biggest fan. Growing up with a sister with special needs certainly had its challenges, but I certainly wouldn’t trade my sister for anything. When I was younger, my friends used to ask me if I ever wished Sammie was “normal,” and I would always grin and correct them: “Sammie is normal, are you asking if I wish she was different than she is now?” (The answer to that by the way, as if you even have to ask, is absolutely not).
I’m extremely fortunate to have Sammie as a sister, she has taught me countless valuable lessons about tolerance, friendship, love, happiness, responsibility and more. That’s not to say growing up with a sister with special needs is not without its struggles. But all siblings have their problems, and I’d wager a guess that we have far less of them than your average siblings.
In 2007, I graduated High School and went off to college, and Sammie and I were forced to learn to live without each other for the first time in our lives. We’ve learned to adjust, she calls me several times a day to check up on how I’m doing, and I go to Lehigh University, a short 3 hour drive from my home in Maryland, so I get to visit her fairly often. Still, I miss her a lot, and I hope to be able to live much closer in the future. I’d like to use Different Iz Good as a platform to describe what its like growing up with a special needs sibling so that hopefully other siblings, parents and potential parents can learn from my experiences what a great thing it is. Please feel free to contact me on twitter @ABCFlowe or by email if you have any questions!
Torrie Bryant – Torrie J. Bryant is a 32 year old freelance writer. She was born with 18q- syndrome, which causes moderate to severe hearing loss, among other manifestations too numerous to list here. She is also an inventor working on several inventions. Her interests include writing, reading, foaming at the mouth about various and sundry liberal causes, biking, skiing, kayaking, ASL and Deaf culture. She is a radical feminist, and disability and Deaf rights activist. She is a graduate of Westfield State University (Communications with a minor in Women’s Studies),as well as Bristol Community College (General Studies) and is thinking about attending RIT for a Master’s Degree in Product Development.