The immense love between parents and their child

My husband Tim and I first experienced the immense love between parents and their child when our daughter Gracie was born on January 11, 2005. She was our first child and allowed us to experience all the amazing firsts of being a parent.

Gracie has always been funny and the type of kid that captures your heart. As her mom, I have always felt she was special and strong. I never imagined that we would face cancer with her – I guess no parent does.

A few months before Gracie’s 3rd birthday, she began to limp slightly. I took her to the pediatrician thinking I was probably playing the overly cautious parent. The pediatrician thought maybe Gracie had sprained something while playing and instructed us to keep an eye on her. About a week later, the white of Gracie’s eyes began to have yellow tint. I took her back to the pediatrician, who seemed a bit more concerned. We were sent for blood work and an ultrasound of Gracie’s abdomen. The pediatrician’s phone call the morning after the ultrasound revealed that Gracie had a tumor growing from her bile duct into her liver. The feelings that followed that phone call cannot be [...] continue the story

Refrigerator Mothers

It is America of the 1950s and 1960s, when a woman’s most important contribution to society is generally considered to be her ability to raise happy, well-adjusted children. But for the mother whose child is diagnosed with autism, her life’s purpose will soon become a twisted nightmare. Looking for help and support, she encounters instead a medical establishment that pins the blame for her child’s bizarre behaviors on her supposedly frigid and detached mothering. Along with a heartbreaking label for her child, she receives a devastating label of her own. She is a “refrigerator mother”.

Refrigerator Mothers paints an intimate portrait of an entire generation of mothers, already laden with the challenge of raising profoundly disordered children, who lived for years under the dehumanizing shadow of professionally promoted “mother blame.”

Once isolated and unheard, these mothers have emerged with strong, resilient voices to share the details of their personal journeys. Through their poignant stories, Refrigerator Mothers puts a human face on what can happen when authority goes unquestioned and humanity is removed from the search for scientific answers.

Birthing Plan

After our daughter Regan was diagnosed with Full Trisomy 18 at twenty weeks our lives completely changed forever. The emotions you experience are unexplainable – even to your partner who is going through the same thing. I had been pretty lucky throughout my whole life to manage every challenge I was given. Well, that hot day in July proved to be the end of the control that I thought I had over my life. Here we were receiving the most precious gift two people could ever hope for, and she was going to be taken back. This was inconceivable for a control freak like me. I once told my husband that getting a diagnosis of Trisomy 18 was similar to being told your child has an incurable Stage IV cancer. You don’t know how long you will have this child, and you have to choose how you are going to embrace the time that you do have. There is no right or wrong decision when it comes to deciding what is best for your child because it was all done out of love. Every choice you make following this diagnosis is what is right for your family and your child.

After [...] continue the story

John’s Story

John was diagnosed with autism in 1988 at about 3 1/2 years old. At the time, we were as sad as if he had died. Now that John is 25, he’s happy, helpful, and, most importantly, still making progress in many areas. He may not have the life that we envisioned when he was born, but it’s still a meaningful, productive one. I think that’s one of the biggest life lessons that autism has taught me: that ultimately, we can all be contributing members of society.

Mac’s Story

My name is Mac and I was diagnosed with Asperger’s Syndrome in 5th grade. Much of elementary school I spent frustrated and angry at my inability to understand my peers and converse with them. The diagnosis finally gave me a reason for my struggle; it galvanized me to work hard in trying to learn how to imitate and eventually understand the behavior of other people. It also helped when I started playing the “World of Warcraft” video game. When playing this game, I could see how people conversed in text form and was able to take the time to edit my responses without the awkwardness of making eye contact or the pressure to respond quickly. I began to improve socially and soon found I had made some good friends who understood I had difficulty, but thought no less of me. Though I now was able to talk to others, I still found it stressful. Something that has helped is my archery, which has taught me to keep calm and not let emotion get to me. I am currently a sophomore in a charter high school. Many of the negative symptoms that once plagued me have either disappeared from view or [...] continue the story