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The evolution of this Website

On December 22, our first-born child came into this world with disorders including multiple birth defects of the skull, arm and hand and an occipital encephalocele. Within two hours of birth, she was rushed to the NNICU at a larger hospital.

That day we were told that Monica needed brain surgery to remove the occipital encephalocele, or she would die from infection. We were told that Monica's chance of survival was 50/50. The hospital could only provide two pages of bleak information regarding her diagnosis and prognosis

Two days later, on Christmas Eve, baby Monica survived the life-threatening brain surgery that removed the - our own Christmas miracle!

As her early years progressed, we did not see the bleak prognosis that had been handed to us. Monica had thrived. She has had more than her share of surgeries, but after every one, she was a very cooperative patient and recovered remarkably fast.

Monica has several disabilities, including sensory, cognitive and motor impairments including blindness, mental retardation, seizure disorders and cerebral palsy. While her developmental progress is slow, it is steady and we are always delighted by her new accomplishments.

We decided to share her story and as much information that we could find about encephaloceles on the Internet so that other families would have more information than the two pages we were given. In 1997, construction of this Web site began. Here is our privacy policy.

Support groups for parents with special needs children were non-existent in our area. As a small family with a special needs child, we encountered many obstacles that initially hindered our ability to participate in "normal" activities. We wanted Monica to be known and accepted by her peers, so it was important to us that she be integrated into the regular classrooms. So, this Web site expanded to include information on accessibility and integration.

Ever since Monica was a baby, she enjoyed music. I will never forget one evening that she was sitting next to me on the sofa as I channel surfed and watching her suddenly becoming alert and attentive when I tuned to a channel that was showing and orchestra and playing classical music, much to the delight of her mother who plays classical viola.

Before we decided to have a second child, we had some genetic testing done, a review of our family history and counseling. An occipital encephalocele is a type of neural tube defect, and neither side of the family had any history of problems with this.

As the years have gone by, we discovered and Monica has enjoyed various therapeutic and fun activities and games, including arts & crafts, massage, and music. We live in a small rural town and have a wildlife preserve across the street. We also created a backyard wildlife habitat that encourages birds and small animals to visit our property. She enjoys sitting outside in the shade and enjoys the sounds of nature.

Monica loves to be read various childrens books that we have described in this section.

Soon after Monica started attending school, we discovered that our home and location were not suitable for Monica's needs. Our driveway was too steep and in the winter mom fell while trying to bring Monica back up to our home. So we decided to design a home that was accessible for wheelchairs.

Originally, we considered homeschooling, but we thought it was more important that Monica socialize with her peers in public school, so that they would get to know each other and be accepted by the community.

In addition to vocational training, range of motion and special education, Monica receives speech therapy, occupational therapy, and physical therapy in school.

At home and at school, Monica uses a computer program from RJCooper that uses large pictures and interesting sounds, music and voices to learn how to use a track ball - assistive technology

Monica has used a wide variety of adaptive equipment, including a spoon with a built-up handle that is easier to hold, a plate with high sides to scoop against.

We continue to add inspirational stories, submitted from other families with special needs, to inspire and motivate other families with disabilities to strive for and achieve their dreams.

We currently have three pets, cats named Tattoo, Noah and Moe. Although still apprehensive, the cats are starting to be more comfortable with Monica, and likewise, Monica has been more interested in them.

Monica loves to explore new surroundings, whether it be a new school, home or vacation condo. Travelling with Monica has gotten easier over the years, as we have learned what to bring, what to be prepared for, what to ask for when arranging accomodations and her disposition in the car.

When Monica turned 18, we went through the legal process of legal guardianship.

To plan for her care and enjoyment of life after we have departed, we have set up a special needs trust

Monica is now 19 years of age and continues to learn how to take care of herself and enjoy life.

We have continued to expand our site to include more areas of concern for families with special needs and disabilities, including adopting children, parenting a disabled child , dating, disabled parenting, disability rights, relationships, health, and disability insurance, divorce in families with disabled children, sports for the disabled, special needs pregnancy and maternity, and family health news.

We added topics related to family fun activities, such as family celebrations , get togethers and party planning, healthy diets and nutrition, accessible gardening, work, play, leisure, and recreation.

We added topics related to difficulties that are particularly prevalent with families with special needs, such as depression treatment, food allergies, anxiety, health and fitness,

We added topics related to family life activities with a special orientation for families with special needs, such as family budgets and finances, grandparenting and senior health, organizing family medical records, relationships advice, self improvement, self defense, teenage stress, religion and faith.