About
FOUNDER
Living With Special Needs was founded by Valerie (valmg). Valerie is mother of two boys – a 14 year old and an 11 year old with Down Syndrome. Valerie HATES the misuse of the word retarded. She takes it personally and finds it very offensive. After sitting on this domain for almost a year Valerie decided she wanted to create a site that could make a difference. Valerie can be found blogging at Mom Knows It All and From Val’s Kitchen.
CONTRIBUTORS
Meet our contributing authors, listed in alphabetical order.
Ali
Ali Foley Shenk lives in Charlottesville, Virginia with her husband Bob and their two boys, Cole (3) and Dean (15 months). Dean has a rare genetic disorder called Prader-Willi syndrome. Ali and Bob are expecting their third child in late January! Ali has her M.A. in Counseling and a B.A. in Early Childhood Education and Human Development. She recently has become involved as a volunteer with the Foundation for Prader-Willi Research (www.fpwr.org) and maintains a blog about life with her two boys: www.divingintothewaves.com. She has done various other freelance writing and has been published on the web and in print. Ali can be contacted at acfshenk@gmail.com or on Facebook.
Amanda
Amanda is a wife and mother raising three children in sunny Central Florida. She has been an Early Childhood Professional for 13 years with a personal interest in emotional/behavioral disorders. Of the three children that she and her husband of 14 years have together, the youngest (LeBella) was diagnosed with Bipolar Disorder, ADHD, and ODD when she was 5.
Amanda is working towards her goal of being a child advocate by being an Ambassador for Kids Are Heroes, using her blog The Motherhood Umbrella to network with and support other special needs parents, and launching her own Support Community; “My Kid’s Bipolar, Now What??” (www.mykidsbipolarnowwhat.ning.com).
Amanda is a passionate preschool teacher, avid reader and writer, Flybaby, and general WDD (Wanna-Be Domestic Diva). In her spare time she enjoys watching movies with LeDaddy, playing with her kids, scrap booking, needle point/work, and learning about…everything. You can always find Amanda on Twitter (she’s a self-professed addict): @mommylebron.
Amber
Amber lives in Kansas City, Missouri and is married to James. Her husband is in the United States Air Force and is currently away at training. He has spent more than half of the year away from his family, which makes life very interesting since two of her children have special needs. She has a degree in Criminal Justice which she just obtained last year, but prefers to be a stay-at-home mom until her youngest is old enough for school.
Amber’s oldest son is 9 years old and was diagnosed with High Functioning Autism when he was 2 years old. Her son hit his normal milestones and had quite the little vocabulary on him until one day it all disappeared. He did not become verbal again until he was about 7 years old. Each day he appears to make a little bit more progress! Amber also has a 3 year old daughter and a 2 year old son. Her daughter just started Preschool and loves it. Her youngest was diagnosed with Epilepsy at 15 months old, but develops normally despite his seizures.
Cheryl
Who am I? My name is Cheryl, I’m a 29 year old mother to 2 beautiful little girls, Lauren who is a “typically” developing active little girl and Jillian who was diagnosed with Cerebral Palsy as a result from prematurity. Jillian was born 10 weeks early and spent 5 weeks in the NICU where we really didn’t expect any long-term “issues”. Jillian stopped meeting milestones at about 6 months old. I’m married to Adam and we’ll be celebrating 10 years together, 5 years married this year. I’m a medical advocate for Jillian and trying to spread awareness about Cerebral Palsy after hearing SO many off the wall comments about it. Join me while I describe our life, as a family of 4 with a “Special needs” child.
Cheryl can be found blogging at The Beautiful Side Of Hectic.
Christy
My name is Christy. I’m a 20-something mama of 2 beautiful boys, LJ and Noah, and long-time girlfriend to Louie. Noah is our 1 year old, “typical” wild-child. LJ is 3 and has Cerebral Palsy as a result of oxygen deprivation at or around birth. Despite what everyone asks, he was born at 41 weeks gestation after an uneventful pregnancy.
LJ cannot walk, talk, sit or crawl, although he can sit with some assistance. He has a g-tube (a feeding tube located in the stomach) but we are still working on oral feeding. He also has Cortical Visual Impairment (CVI, which basically means the visual problems are brain related as opposed to the eyes) along with more typical visual issues such as strabismus and near sightedness.
In between working at home, therapies, doctor’s appointments, researching medical information and the normal child rearing and household duties, I like to read, scrapbook, read, and blog. Read more about our family at Our Yellow Brick Road.
Debbi
My name is Debbi and I am a wife, and a mother to two children. My youngest, Gracie, has cerebral palsy and a chromosome disorder (dup15q26.1). She is eight years old, ambulatory, cognitively delayed, non-verbal, has some traits of autism (though no formal diagnosis), and is the happiest little girl I have ever seen. Gracie has an amazing big brother who loves to tease her and a daddy who loves to roll around on the floor to make her laugh.
Our world was changed when Gracie was born and later diagnosed. She has changed all of us for the better. I write with lots of love and honesty about the struggles and triumphs that having a child with special needs brings.
Read more at The Henry Family, Since 1997.
Devon
Hi! I’m Devon, and I am the proud mother of a small superhero. My son Dakin has SMARD (Spinal Muscular Atrophy with Respiratory Distress), a rare genetic neuromuscular disorder. Though his body cannot move the way he wants it to, he joyfully faces life head on. Through blogging, we hope to help others understand that just because you’re in a wheelchair, it doesn’t mean you have to be defined by it.
Devon can be found blogging at The Daily Dakin.
Jackie
Jackie is a SAHM and with her husband Jeff are raising 3 wonderful children. All three of Jackie’s children, Jeffrey (5), Jaylin (4) and Jaxon (1) have a speech delay with Jeffrey having the added benefit of an as yet undiagnosed behavior problems.
Jeni
Hi, I’m Jeni! I’m a 39-year-old mom of three. My two older kids are grown and really only need me for advice and cash, but provided good practice for the challenges I would face with my youngest. Joy Daisy is 9 and has Down syndrome. From the minute I found out I was pregnant with her, I knew she would have special needs. Still, when she was diagnosed, my life was turned upside-down. It took a long time for me to find North again, and an important mission of mine is to help new parents of babies with Down syndrome who are terrified and don’t know what to do. Early intervention was truly a Godsend for my family, and I believe that Joy wouldn’t be the bright, happy 3rd grader she is today had it not been for the army of therapists that marched through our home and told us what to do. Joy struggles socially, and needs a lot of extra help in math. She reads at a 5th grade level and writes fantastic stories! She has ADHD and chronic insomnia, which is a fun combination — uppers by day, downers by night! I am excited to be blogging here, and promise to always be honest, even when it hurts.
Jessica
In 2007 our third son was born. He was diagnosed with a very rare syndrom, and has had many struggles along the way. Despite the struggles he has taught all of us so much! We are forever changed because of Alex…..
Jessica can be found blogging at A New Kind Of Normal.
Kelly
Kelly is the mother of an adopted son with attention deficit/hyperactivity disorder inattentive type (ADHDi). She works from home as a freelance writer and designer while trying to teach her son the strategies and skills he’ll need to succeed in a world that neither excuses the downsides of ADHDi nor rewards the benefits, which include creativity, out-of-the-box thinking, and hyperfocus on the things he enjoys. Kelly blogs about family issues, casual environmentalism, backyard chickens, and more at www.themillermix.com.
Kim
Kim lives in New Jersey and is an actress, model, autism advocate and proud mom of a 2 year-old daughter on the autism spectrum. Upon her daughter’s autism diagnosis in October, 2009, Kim decided to educate herself and blog about her experiences and findings on http://allaboutavajolie.blogspot.com. Kim is overjoyed to be a contributing writer on Living With Special Needs, because it allows her the opportunity to read about others’ experiences and gain knowledge in the world of special needs.
Lisa
Lisa lives in Minnesota with her husband Andy and their three-year-old son, Elijah. Deprived of oxygen at birth, Elijah has cerebral palsy, cortical visual impairment, reflux, microcephaly, and pervasive developmental disorder (which puts him on the autism spectrum). He is an active, nonverbal, challenging, amazing little boy. Lisa has been blogging about Elijah since his difficult start at www.elijahland.com
Maggie
By way of introduction, I was asked to write a blurb about who I am… That’s not as easy as it would seem. Let’s assume you don’t much care who I was before I had children with special needs… though admittedly my old corporate pit-bull personality (not at all vicious just dogged) has occasionally served me well in my “real” life, as has my undying love for SCUBA diving… going where few others have dared to venture. Certainly, these traits have contributed to making me the person that I am now: the mother of 2 children with special needs! But I am so much more than that… and it is (usually) so much less complicated and scary than that sounds. I am Maggie. Mother to 3 beautiful children for whom I would give my life (feels like I do so on nearly a daily basis, LOL); 3 children I would not change a thing about (except maybe how well they listen to me); 3 children who have needs (just like everybody else’s kids); 2 of whom have needs that are considered “special” by the powers that be. Yes I have been doubly blessed (and totally blown away) with identical twins who were graced with an extra 21st chromosome, a condition known as Trisomy 21 or Down syndrome. Some say I was “chosen” to have these amazing kids… That’s so true! Weren’t we all?
First and foremost, I am a parent – proactive or reactive, whatever it takes on any given day – which is synonymous, for me, with being an advocate. By definition, that means I act on behalf of my children’s well-being not just privately but publicly. Specifically, according to Webster, it means that I am ‘a person who speaks or writes in favor of; supports or urges by argument; and/or recommends publicly; in support or defense of a person or cause; one who pleads for or on behalf of another.’ Yes, it’s all true! By definition, I am an advocate! Daily! I advocate for my children and for all people with Down syndrome or any other special needs. I fight for whatever it is that my children need (‘cause Mama knows best) and I do my best to educate folks on the beautiful nuances of life with Down syndrome. And I hope that my one small voice can help you find your voice and that you can help the next parent find theirs and so on until the whole world realizes that a child with special needs is just a child who wants, deserves and has a right to the same opportunities that a child without special needs has.
“One drop of water raises the ocean!” Imagine what we can do together!
Maggie can be found blogging at Take A Walk On The Happy Side.
Marissa
I am a mom of 4 wonderful boys ages 12, 4, 4 and 2. Our youngest has a genetic syndrome called 16p11.2 duplication, PDD_NOS, and intellectual disabilities. Our twins also have learning difficulties and we are in the midst of discovering their “why”. I have a degree in Special Education and taught for 7 years before stopping to have our youngest son.
Marissa can be found blogging at 4 Little Monkeys.
Mary
Mary Peret a/k/a Barnmaven blogs at http://www.barnmaven.com about about being a mom with ADHD and a single parent to two wonderful children with ADHD/Bipolar/Anxiety Disorder. She lives in central Washington State with her kids and her dogs, cats, chickens, horses and two betta fish whose days are likely numbered.
Michelle
Michelle is a proud mother to two boys, 7 and 4, that keep her on her toes (and love to challenge her sanity). There family was blessed with a child with Down Syndrome (4 year old Cody) and he is a constant teacher in strength, courage, tenacity, persistence, laughter and love. A new blog dedicated to her son, Cody, was recently born, http://downsyndromediaries.blogspot.com/, and the hope is that once Cody is able to write he will take over the blog and chronicle his life with Down Syndrome and allow people to see life through his eyes.
Her children inspired her to start a photography business that specializes in showing the beauty of all children, especially those with special needs. Becoming a parent to a child with Special Needs opened the family’s eyes to a whole world that was unknown to them. The photography blog not only shares images, but also shares their life as a family with a child with Special Needs. Their hope is that by sharing their experience, they can help others that might be going through the same experiences they went/are going through.
Mindy
After 15 years of marriage to her husband, Mark, and 10 years of mothering the easiest, kindest child on the planet (Hi, Connor!), Mindy found herself in unchartered, and frightening waters after giving birth to a baby with rare, life threatening, metabolic disorder. Though life, for the past two years, has been full of vigilance and worry, the Mooney family has tried to stay focused on the blessings of their lives and not let Corrigan’s diagnosis of Citrullinemia (a Urea Cycle Disorder) overwhelm them. Now a stay-at-home mom, Mindy navigates the journey of special needs parenting as openly as possible, documenting as much as she can through her photography and words, on the family’s blog mooney=mc2.
Nancy
My Name is Nancy and I am a mom to a child with Special needs. He was born as a Micro-preemie at 25 weeks gestation. He has brain bleeds that caused Hydrocephalus and cerebral palsy. He walks, and just recently started to talk. He is almost legally blind. We blog about Miracles, and that they happen. Because Miracles DO happen….. Read more at Because Miracles Happen.
Sarah
I am Sarah and I run Caiafa Craziness. I am married to Paul and together we have two children. Blake is 7 and has Aspergers. Nathan is five and PDD-NOS. I blog about Autism and the school system. Along with tips on how to travel with your special needs child. We also deal with day to day and being a new military family. I had to opportunity in January to do the red carpet event for Dear John. Which had a little boy Braden from SC. He has autism. Read more at Caiafa Craziness.
Shannon
Shannon is a stay at home mom of two little boys born a year and a day apart in 2007 and 2008. Kieran turned three in April and is constantly on the go. He loves to run, explore and entertain. He is a comedian in every sense of the word.
Finley turned three in April and has a smile and laugh that will light up a room. After a lot of tests and doctors’ visits, he was diagnosed with a rare chromosomal syndrome called Chromosome 22q11.2 Duplication Syndrome this past February. He has also been diagnosed as on the spectrum. With not a lot known about his syndrome, it makes it difficult to get information and resources for him. He has struggled for every milestone and now walks without a walker and even dances to music. He is delayed in his speech but makes progress every day with lots of therapy and love. His younger brother is speech delayed as well and has started speech therapy.
Shannon has been married to Andrew for five years and they live in Texas. She is happy to finally have an outlet to express her day to day struggles, joy, triumphs and worries. She looks forward to the day where she has to ask the boys to quiet down because they are talking too much… something parents of neurotypical children sometimes take for granted. Every sound, every word, every hug and every kiss is a blessing.
You can check out her blog at www.PotamusPrefers.com.
Stephanie
I am a SAHM of one amazing little six year old boy. Christopher has multiple medical issues including Pediatric Stroke, Seizures, CP, Congenital Heart Defect, pulmonary, and G.I. issues. Oh yeah, he also happens to have Down syndrome. Doctors believe that there is another “syndrome” but it is undiagnosed so far. He is non-verbal, wheelchair bound, and severely hypotonic. He is missing between 40 and 60 percent of his brain tissue. He is our miracle. He knows MUCH more than he can express, and can figure out how to get somebody wrapped around his finger in 10 seconds flat! We are also homeschoolers – and our program can, at best, be described as eclectic. I love to share what we have learned the hard way, and to empower others to advocate for their children. You can read more at Our Little Man.
Tracy
Tracy is happily married with three amazing sons, including Nolan who was diagnosed at age 3 with high functioning autism, or Aperger’s Syndrome. He shows us how to be joyful every day with his wisdom and big heart. She founded Book Room Reviews in early 2008 as a book review website. It has since grown to include reviews on a wide variety of family and kid-friendly products, along with fun stuff. Tracy has a professional background in social work and early childhood education and holds a Bachelor’s Degree in Psychology.
Tracy’s reviews have been published through syndication at The Huffington Post, Chicago Sun Times, USA Today and Reuters.
Tricia
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Tricia is a work at home mom of a 17 year old daughter, a 14 year old stepson and an 8 year old daughter born without fingers on her left hand due to Amniotic Band Syndrome. Throughout the day, she can be found baking cookies with her little one, while both dressed as princesses or running around the house trying to win a game of tag. Life is full of fun and laughter in this household of – special needs, teen times and blended family.
