Alysia Butler

Alysia is a stay-at-home mom living in Massachusetts with her husband and three boys, ages eight, four and two. Her middle son has sensory processing disorder and was diagnosed with autism spectrum disorder in December 2009 at age 3 ½. She currently writes at Try Defying Gravity, her personal blog recounting the joys and challenges of raising three boys.  Her work has been published in The Boston Globe and Bay State Parenting Magazine. She has had various jobs in her lifetime, but with all due respect to the Peace Corps, being a parent is the "toughest job you'll ever love".  Alysia is also a regular contributor to the website Hartley's Life With 3 Boys, a website dedicated to helping families dealing with sensory processing disorder.

Bennie

Bennie is a part-time professional artist and full-time stay-at-home dad. He and his wife Joan are closing in on two decades of marriage. They have two beautiful children: their 13-year-old daughter Jessie who is destined to become a fabulous dancer and their 10-year-old son, Ben. Ben was diagnosed at nine months of age with Pallister Killian Syndrome, a rare genetic disorder that affects the 12th chromosome. Despite a plethora of physical challenges Ben and Bennie have a very special bond through their love of painting. It is because of this unique connection and love for each other that they began blogging at A Work of Art: Raising Our Exceptional Son.

Carrie Link

Carrie Link is a Portland, Oregon former elementary teacher, turned stay-at-home mom, turned writer. She has taught memoir writing as a means of personal transformation.

Children with special needs and special spiritual gifts, are of particular interest to Carrie, and she is at work now on her second book, which explores this connection.

Carrie's blog can be found at love.

cms8741

cms8741 lives in Chicago with her two boys, E-Niner and T-Bone. She and her husband Joe adopted E-Niner at birth. He has a whole host of special needs -- developmental delays, SPD, ADHD, and anxiety that can lead to psychotic breaks. Her youngest, T-Bone, is a patient and understanding sibling -- and about as active as a kid can be without clinically qualifying for hyperactivity. Together, they make-up a multi-racial family of African American, European and Asian heritage. Can we say never a dull moment?

Deborah Nickerson

Deborah, once a police officer, is now a computer professional who balances her work life and her very busy home life as the single parent of five unique children.

Deborah’s birth son, Chip, is 20 years old and in college.  Her daughter, Ashley, adopted at age 2, is now 15 years old.  Ashley is diagnosed with several severe disabilities.  Jessica, adopted at age 9, is now 20 years old and is testing her wings as an adult. Jessica also has multiple, severe disabilities.  Corey, 18 yaers old, is a senior in high school who aspires to join the military. Corey is diagnosed with Asperger's syndrome.  And Ronnie, just adopted in 2010, is 15 years old, deaf and diagnosed with spina bifida.

Needless to say, Deborah’s life is very busy and never boring. In addition to her job as a computer engineer and her single parent responsibilities, Deborah is president of a state-wide family support group for families whose lives are touched by deafblindness, and is a tireless advocate for all people with disabilities. She can often be found lobbying her state lawmakers and serving on many boards and commissions serving people with disabilities.

She does find time to write her blog, pipecleanerdreams.blogspot.com, five days a week, and her writing has also been featured in local Virginia magazines and newspapers. Ashley’s story has also been chronicled in a book by Jonathan Mooney titled “Short Bus Stories”. Ashley’s chapter in that book is titled “How to Curse in Sign Language”.

Elizabeth Aquino

Elizabeth Aquino is a writer living in Los Angeles with her husband and three children. Her oldest child, Sophie, has a severe seizure disorder and developmental disabilities. Raising Sophie and her two little brothers is Elizabeth's life's work and pleasure. She is currently finishing a memoir about raising a child with a serious disability and has had her work published in several magazines, literary journals and anthologies, as well as The Los Angeles Times newspaper. She posts regularly at her blog, a moon, worn as if it had been a shell.

Ellen Seidman

Ellen Seidman is mom to seven-year-old Max and five-year-old Sabrina. In her so-called spare time she writes the blog Love That Max, an inspirational, informational, occasionally irreverent blog about kids with special needs (and the parents who adore them). Love That Max has won the Best Special Needs Blog Award from TheBump, and is currently a finalist for Best Parenting Blog at Nickelodeon Parents Connect.

A longtime magazine editor, Ellen has held top-level positions at Redbook, Good Housekeeping, SELF, Teen People (RIP!) and most recently at Glamour, where she was deputy editor for eight years and relaunched Glamour.com. She also contributed to the widely-acclaimed anthology The Elephant in The Playroom. She is currently a freelance editor who's worked with Martha Stewart Living, Body & Soul, In Style, American Baby and Redbook. She contributes to MomLogic, iVillage, Traveling Mom, 5 Minutes For Special Needs, Hopeful Parents and The Huffington Post.

Erik Linthorst

Erik Linthorst is a filmmaker and father to Graham (formerly diagnosed with autism, revised to Sensory Processing Disorder with seizures).   His award-winning documentary film "Autistic-Like: Graham's Story" (www.autisticlike.com), has been featured on Good Morning America/Health, the Documentary Channel and in a front page article in the Atlantic Online.  Erik travels and presents Graham's Story at conferences and events around the world, including the World Forum on Early Care and Education, the National Association for the Education of Young Children, the Alberta Teacher's Association, the Interdisciplinary Council on Development and Learning Disorders, the Sensory Processing Disorder Foundation and nine US film festivals.  Erik also has a part-time practice counseling parents of children with special needs. For more information contact erik@autisticlike.com.

Heather Innis

Heather is a former middle school teacher and now full-time stay at home parent to her one and only child, Ethan Charles. Ethan was born in 2005 with cytomegalovirus (or CMV), which resulted in a handful of issues that include: mild ataxic cerebral palsy, profound bilateral hearing loss, sever GERD, apraxia, and autism. Ethan sees many doctors and therapists and is thriving in spite of his many challenges. Heather also can be found at her blog "Ethan's World" which she began in October 2006. 

insideout510

Terri and her husband raise their daughters in the Midwest. The realm of disability annexed her family when Terri's younger daughter was diagnosed with Rubinstein-Taybi Syndrome. Since then, the family has been active  promoting awareness of disability issues and advocating for quality community and educational inclusion for all.  Through her roles as mother, coordinator of an annual Rubinstein-Taybi family gathering, District Parent Liaison, North Shore Parent Network leader and and founder of Citizens for Inclusive Thinking (C-FIT), she focuses on constructive communication and collaboration between families, schools and community entities, serving as support to all of these on their paths. Have a glance into Terri's foremost role as an escort to her daughters' potential by visiting: http://www.farmerjohncheeseandotherjoy.blogspot.com/

J.

J. is a parent to two wonderful boys through older child adoption. She is elementary school  teacher by profession but has choosen to stay home with her sons for the time being. Both of J's boys struggle with a variety of issues related to the neglect they suffered as young children. Parenting them is an adventure that keeps her on her toes and usually gives her lots of great writing material. She blogs at Stellar Parenting 101 and can be found as Stellarparent on Twitter.

Janis Marie

Janis Marie is a full-time mom, freelance writer and blogger. Highly regarded and respected for her ‘tell it like it is’ approach; she created and maintains a blog, Sneak Peek at Me to chronicle her son’s life and medical journey.

Along with being a featured blogger on Support for Special Needs, she has written numerous guest posts for popular special needs blogs such as Praying for Parker and the award-winning Love That Max.

Through her blog and affiliations, Janis works year-round to promote awareness and acceptance for those living with a rare disease diagnosis.

She’s also a contributing writer to several online media outlets. Her published work can be found at She Posts, 5 Minutes for Special Needs, Hopeful Parents, Kidz, Complex Child and RARE Blog (Children’s Rare Disease Network). 

Janis, a self-proclaimed social media junkie, can also be found on Twitter and Facebook: sneakpeekatme

Jen Bush

Jen Bush put her high tech career on hold to become a stay at home mom to two little ones: a preschooler, affectionately referred to as Moe, and a baby girl, Jelly Belly. Moe was diagnosed with autism at age two. He was her inspiration to start writing, as well as to learn sign language, which she now teaches to babies.

Jen also writes about her experiences with a baby, a preschooler on the Autism spectrum, and a dog on Prozac, at her personal blog, Anybody Want A Peanut? She lives with her family in San Jose, CA.

Jenabur

Jenabur is the mother of two young daughters, who have Alpha-1 Antitrypsin Deficiency, a genetic disorder of the liver/lungs. In addition, both of Jen's daughters were born prematurely due to preeclampsia. Grace was born in 2002 6 weeks early, weighing in at 3 lbs. 14.5 oucnes. Meghan arrived 13 weeks early in 2004, and weighed a scary micropreemie weight of 1 lb. 9.5 ounces. Not only do Jen's girls contend with Alpha-1, but they also contend with former preemie issues of which the largest issue is sensory processing disorder. As their mama, Jen also contends with her own post traumatic issues along the way.

Writing is a passion of Jen's, and she often documents life with the "Alpha Girls" on her personal blog, Unique But Not Alone...Life with the Alpha Girls. In her professional life, Jen is a multimedia instructional designer for a financial services company, where she creates adult learning content for her company's clients.

Jessica McGuffey

Jess lives in the Pacific Northwest and is a full-time mom to Connor, an awesome little guy born in April of 2006 who is the only known living person with his specific genetic condition [46xy der t(1)(1;15)(q42;q26.2)].  He has (among many other things) global cognitive and physical delays, progressive hearing loss and seizures that require mouth-to-mouth resuscitation.  He is also ridiculously cute and does a mean velociraptor impression. 

On August 11, 2009, Jess’s life became even more complicated when her husband Jeremy— an army officer serving at that time in Afghanistan— came home ten months early from his deployment when his armored vehicle ran over an improvised explosive device.  Jeremy’s heels were shattered into about two hundred pieces and he lost a large portion of his left calf muscle.  His recovery process has been slow but steady, and he is now walking completely unassisted and has returned to work.

Jess and Jeremy are also in the process of adopting an older child with special needs from Thailand.  They will hopefully travel to meet their daughter, who is profoundly deaf, and bring her home sometime in the fall of 2011. 

When not running around like crazy managing her son’s care, Jess spends her days feeding her rampant tea and book addictions, chasing after her two insane cats, and journaling her daily experiences over at her blog, Connor’s Song.

Julia Roberts

Julia is a mom, wife, marketing account executive, advocate and volunteer raising two kids – Gage and Quinnlin – who’ve needed (and still do) a lot of services from the medical, mental health and public school communities. Their histories include a vision disorder, developmental delays, and kidney failure due to ARPKD, dialysis, kidney transplants (each at the age of 8) and therapy for the side effects of medical trauma. She recently learned that the kids have a newly found syndrome only documented in three kids in the world. She fields calls from parents of children diagnosed with PKD. Never wanting another parent to feel alone in what can be the isolating world of special needs parenting and realizing the special needs world is bigger than failing kidneys, she co-founded a social networking site for special needs families.

She is a writer for She Posts, Parenting Children with Special Needs Magazine, Support for Special Needs, PKD Progress Magazine and . She advocates for the rights of all kids with special needs through her volunteer efforts on Children’s Health of Atlanta Parent Advisory Council, ARPKD Chapter for the PKD Foundation where she also serves on the Board of Trustees. Julia speaks to groups on various topics surrounding raising kids with special needs.

She chronicles her family’s journey at Kidneys and Eyes and is site Co-founder of Support for Special Needs. She is on twitter at @juliaroberts1 and @supportSN



Karen Gerstenberger

Karen Gerstenberger is the wife of Gregg, and the mother of David and Katie. She lives in the Puget Sound region of Washington State. Karen attended college in California and Illinois, and graduated with a Bachelor’s Degree in Fine Art. Her professional background includes work in sales, securities and finance, volunteering, pastoral care-giving and writing. She is the president of Katie’s Comforters Guild, which she founded at Seattle Children’s Hospital.

When Katie was 11 and a half years old, she was diagnosed with adrenocortical carcinoma, a very rare cancer. Katie was immediately admitted to Seattle Children’s Hospital for treatment, and her family moved from their home into the Ronald McDonald House in Seattle. After five rounds of chemotherapy, Katie had a successful 18-hour surgery to remove her primary tumor. After six weeks of recovery in the hospital, Katie and her family went home, hoping for a new life for Katie in remission from cancer.

Tragically, Katie relapsed a few months later, and was in hospice care at home until her passing in August of 2007. Karen began writing in September of 2007 as a way to actively and creatively live with her grief.

Karen writes a blog (www.karengberger.blogspot.com), created and maintains the blog for Katie’s Comforters Guild (www.katiescomfortersguild.blogspot.com) and the blog for the Katie Gerstenberger Endowment for Cancer Research at Seattle Children’s Hospital, and writes a monthly column for the Hopeful Parents website (www.hopefulparents.org). She creates and implements marketing strategies for the guild, and works for pediatric cancer-related issues. Karen’s work has been published on the Blissfully Domestic website (www.blissfullydomestic.com), and in Redbook magazine.

Karen’s hobbies include sewing quilts for Katie’s Comforters Guild, reading, writing, beachcombing and travel.

Katie Pasque

Katie's son Lively developed infantile spasms when he was 6 months old. An MRI indicated a stroke, which likely occurred around the time of his birth. Treatment began, and complications ensued, as chronicled in Katie's blog, Highway Lively. When Lively is out of the hospital, Katie works as an obstetrician-gynecologist in Ann Arbor, MI. In her free time, Katie tries to give as many smooches as possible to her husband Pete, daughter Annie (3), and Lively (1). Katie is thrilled to be given the honor to write for Hopeful Parents.

K-floortime-lite-mama

I am the mother of a charming 5 year old who is on the Spectrum and has Apraxia.

We do Floortime, Speech therapy, Occupational Therapy, Verbal Behaviour

Life is full of hard work and very wonderful

Kirsten

Kirsten Isgro is the mother of 4-year old twin girls, Uma and Sylvie. She and her family live in the beautiful Green Mountain state of Vermont, where they enjoy hiking, biking, swimming, and eating excellent local produce and dairy products with great regularity.    

When Sylvie was almost 1 year old, she began to lose her fine motor skills; her developmental disabilities are caused by a rare and degenerative disorder of the central and peripheral nervous systems.  This disease, Krabbe, is part of a group of leukodystrophies caused by a deficiency of an essential enzyme for myelin metabolism. Most children do not live to see their second birthday with this disease--Sylvie is really 1 in a million!  While non-verbal and non-mobile, Sylvie is a lively, vibrant young child. 

When Kirsten is not writing for Hopeful Parents, she works as a professor of Communication Studies at the State University of New York.  Her academic interests include critical cultural studies; media, religion and culture; and health communication.  She has worked for a number of non-profit
organizations that focus on social justice issues and public policies.

Ironically she does not have her own blog, given that she is a teacher of communication/media.  However, she is grateful that online forums, such as Hopeful Parents, exist for those who are doing the best we can given the resources and circumstances we have been given!