My Extraordinary Little Man
by Barbara Murphy
by Barbara Murphy
I am a mom to a wonderful little man named John, who was born with a rare birth defect called Congenital Diaphragmatic Hernia (CDH). We had no clue there was anything wrong until the day he was born. He also came along with several other issues that landed him in the hospital for 13 months after birth. He was born March 29, 2005 and came home to us on May 3, 2006. We call May 3 his second birthday! John was ventilator dependent, oxygen dependent and tube fed when he came home. Today, at the age of six years old, he is only on the ventilator at night and no longer has tube feedings and starting first grade with his trusty nurse. His medical history is complicated and I am willing to bet his records are about three to four inches thick, maybe more.
by Rachel Zook
I will never forget the day I bought Emma's baby book. I was so excited to be having my first precious child, and I spent an hour picking out the perfect baby book. I took it home and started filling it out that night with all the information I already could fill in. Then came the day of Emma's birth, and, well, things went a little crazy from there.
I remember wanting so badly to fill in more details in her book, but where was the spot for the length of NICU stay, first MRI, first IV, first ambulance ride, or number of surgeries? There were no blanks for those types of things, but I did fill in her birth stats and put a few pictures in before sadly closing the book, with hopes that someday soon her medical history would be behind us.
by Colleen M. Proctor
I had come in contact with many families of children with special needs during my nursing career, and read widely about family experiences with these children. When I and my mostly grown daughters decided to sign up to provide foster care, I anticipated providing long-term foster care for some of these children, figuring those were the type of children likely to be hard to place for adoption. But most of the kids we received were in foster care due to neglect rather than physical abuse, and had, at least initially, some developmental and speech delays. Almost without exception, these kids had been exposed to illicit drugs and tested positive for alcohol, marijuana, methamphetamine and other substances at birth or when taken into the foster care system. The long term effects are still being studied and we don't know what lies ahead of us, but we will continue looking forward rather than back. They were otherwise beautiful, typical kids.
Kimberly
Focus: Being Positive
by Rachel Nichols
There is no parenting book that can even come close to describing the rollercoaster of a journey you will embark on when you have a child with special needs. Even the section of the parenting book that mentions disorders and syndromes is laughably sparse. There is no book that can tell you how rewarding, heartbreaking, inspiring, and empowering being the mother of a child with special needs can be. When you have a child with special needs you throw those parenting books away and write your very own.
by Lynn Rickert
I have a tendency to be a hair-on-fire kind of person. I like to be busy, have a project or two going, read a couple books at the same time. I like to have fun, I like to be productive. I get bored easily. And I LOVE to relax. I love to sit on my deck and just watch the wind move the branches in the trees. I like naps. But mostly? I like to do stuff. I sew, knit, cook, try to build things out of wood, speak publicly, and write.
So, how does all this work with a 13-year-old daughter with special needs? My daughter, Natalie, is very cute both in appearance and personality. She is also sweet, determined, generous, funny, bossy, loving and talkative. She has hypotonia, sensory processing dysfunction, is fed through a tube, has cognitive impairment, and visual-spatial struggles. Her needs require a parent with time.
by Erin
Alice Kingsley: I'm not slaying anything. I don't slay, so put it out of your mind
The Mad Hatter: ...Mind?
[Hatter stops, puts Alice down on a log, and continues walking]
Alice Kingsley: Wait! You can't leave me here!
The Mad Hatter: You don't slay? Do you have any idea what the Red Queen has done? You don't slay.
Alice Kingsley: I couldn't if I wanted to.
The Mad Hatter: You're not the same as you were before. You were much more..."muchier." You've lost your "muchness."
Alice Kingsley: My "muchness"?
The Mad Hatter: [Points to Alice's heart] In there--there's something missing.
In Tim Burton's remake of Alice in Wonderland, this statement by the Mad Hatter is in response to Alice's expression of her own doubts about whether she is truly the slayer or champion many of the characters around her assume she is. This exchange struck a chord that resonated loudly with me because I have personally experienced powerful self-doubt as the "imposter syndrome," a phenomenon I learned about in graduate school. With my inner imposter in control, I too had lost my "muchness."
Junior
Specialty Article
Car Seats for Children with Special Needs
I Am a Warrior; I Am a Mother
Many children with special needs require a specialized car seat due to positioning issues, problems with muscle tone, cognitive or developmental issues, and other problems. This article will present some of the most commonly available car seats for children with various special needs.
Feature Article
by Michele Rolfe
I realize it's hard for people to understand what life is like when you have a child with special needs. They see you doing a thousand things and give you credit for your strength and perseverance, but they don't really know the depth of your struggles. There is a constant theme of hitting roadblocks when dealing with the medical community and insurance companies. Cutting through all the red tape is no easy task and some days you're left feeling completely overwhelmed, defeated and down right depressed. It's hard to express in word the dedication, determination and tolerance you have to find within yourself to help your child recover. And somehow still maintain your sanity and sunny disposition!