Welcome to family fun, family health, family life, and disability support for the special needs family.

This website is dedicated to my daughter Monica. She was born with a life-threatening neural tube defect, called an occipital encephalocele. This encephalocele contained a substantial portion of her brain. We were given a dire prognosis for our newborn. Two days after birth, on Christmas Eve, Monica underwent surgery. After 6 hours, we were given the news - Monica survived the brain surgery - our own Christmas miracle!

Monica is now 22 years old. She had multiple disabilities (cortical blindness, cerebral palsy, developmental delays, and a seizure disorder.) Despite these disabilities, she is a healthy young woman who is rarely ill. She has tremendous motivation and continues to learn and enjoy life. Monica is a delight and inspiration. Being supportive is crucial at all child development stages.

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A message from Mary - a website visitors: "I am an adult with mild CP. I wanted to let you know that I've tried a LOT of things to make movement easier and one of the best has been music therapy."

Games, life and what I see around me - a blog that gives honest and unbiased reviews of video games and other elements of media.

The Child Development Institute organizes rehabilitation stays for disabled children, providing therapy for children with the following impairments: cerebral palsy, autism, ADHD, Down’s syndrome, Asperger syndrome, epilepsy, speech disorders, abnormal posture

Children can have strokes, often caused by birth defects, infections (e.g. meningitis, encephalitis), trauma, and blood disorders such as sickle cell disease.

Asbestos exposure has been linked to the development of a myriad of illnesses and is known to cause mesothelioma and lung cancer - get the facts on asbestos and cancer.

Therapy dogs are trained to allow people it doesn’t know to make physical contact with it in hospitals, retirement homes, nursing homes, and doctors’ offices.

Family fun brings not only enjoyment but BIG family health benefits, too. And if you look carefully, you can find fun in whatever you do... it is only a matter of attitude.

Adventures with Monica - a young woman with multiple disabilities

Early pregnancy fetal tests showed no abnormalities. Mom is a nurse and was strictly following safe pregnancy practices. There were no warnings that this was a special needs pregnancy. Three days before Christmas, Monica was born with a life-threatening neural tube defect called an occipital encephalocele.

Within hours after birth, Monica was rushed by ambulance to a neonatal intensive care unit (NICU) at a large city hospital. After examination, the neurosurgeon gave us a dire prognosis - a short lifespan with multiple and severe disabilities. The encephalocele was "leaking" and chance of infection and death were imminent. Brain surgery with a 50/50 chance of survival was the only chance to save her life. Life or death - the choice was given to the parents. For me, there was only one option - do whatever could be done to save Monica's life.

Not knowing if she would live or die, family and friends quickly came to the NICU and visited Monica. With aching hearts, exhausted from days without sleep, their eyes red and faces swollen from crying, the parents bonded with their first born baby and gave her all their love.

Two days later, on Christmas Eve, after 6 hours of surgery, we were given the news - Monica survived the brain surgery - our own Christmas miracle!

The surgery removed a large part of her brain - dead gray matter inside the occipital encephalocele - presumed to be mostly from the occipital and parietal lobes. The missing portion of her occipital lobe would effect her eyesight and balance. Monica was subsequently diagnosed with multiple disabilities and disorders including cortical blindness, cerebral palsy and mental retardation. The neural tube defect had also caused malformation of the skull.

Amniotic band syndrome caused a constriction in the upper left arm and loss of middle and ring fingers on the left hand and deformity of her little finger. The constriction was so tight around her upper arm, that blood had to flow through the humerus to reach her lower arm and hand. Monica was fortunate not to have lost her left hand and forearm. Within the year, Monica had surgery to relieve the constriction and reconnect blood vessels to her left forearm.

Monica had more surgeries in the coming years, including hand surgeries and a spinal fusion, but after each one she recovered remarkably fast. As her early years passed, we did not see the bleak prognosis that had been given to us. Monica thrived. So, I decided to share Monica's success story to provide hope and help for other parents of special needs children. Thus was the concept and construction of the Family-friendly-fun website in 1997.

Monica has several disorders, including sensory, cognitive and motor impairments, blindness, mental retardation, and chronic complex partical seizures. While her cognitive and physical development is slow, it is steady and I am so delighted by what new thing she has learned and accomplished. For example, through her own determination and daily effort, she learned to walk at age 7.

We are not experts on raising a disabled child, but through this website and blog, we will share what we know and what others have taught about parenting a disabled child and disabled parenting. There is more work involved in effectively caring for and raising a developmentally disabled child, so we have to be aware of how to balance work, play, and leisure to maintain our own health.

Unfortunately for Monica, my father died when she was only 3 years old and my mother died in childbirth, so Monica missed growing up with both sets of grandparents. My father loved her so very much. I still feel his presence and know that his spirit is still with Monica and I.

Living in a rural community with a special needs child, we encountered obstacles that initially impaired our ability to participate in "normal" family activities. As we overcame these obstacles, we added this information to our website.

Family support is invaluable and is cherished. Support groups for parents with special needs children were non-existent at the time in our area, so we started an online community to provide a forum where special needs families can meet and share information, stories, questions, concerns and support. Here is some information on how to start a support group for parents.

Monica participated in early intervention programs from age 1 to 6. We wanted Monica to be integrated in the public schools so her peers would get to know her. She was delayed entry into elementary and middle school by two years as they prepared each school to accomodate her special needs. We are gratified to know that Monica has "paved the way" for future children with developmental delays and disabilities.

In her early years, we discovered she had a food allergy to red dye (found in many food products), and this made her metabolism hyperactive and often did not sleep at night. By her early teens, she no longer had this response.

Every year we celebrate Monica's birthday. I distinctly remember her first birthday. Monica was then a plump baby and she was seated at the head of the dining table with a birthday hat on, birthday cake lit, and her family around singing her "Happy Birthday"... and she fell sound asleep right in the middle of the party.

Originally, we considered homeschooling for Monica, but we thought it was more important that Monica socialize with her peers in public school, so that they would get to know her and and be accepted by the community. We wanted Monica to attend integrated classrooms as much as possible, as well as the special education classes. In the elementary school, she was integrated into all classes. When she reached middle school and high school, she attended less "regular" classes and spent more time in a special education class.

In addition to vocational training and special education, Monica received speech therapy, occupational therapy, and physical therapy at least once every week in school. We also considered massage therapy for her. All these services were facilliated in our iep meetings with teachers and therapists.

Ever since Monica was a baby, she enjoyed music. I will never forget one evening. Monica was sitting next to me on the sofa. I was channel surfing when suddenly she became very attentive when I tuned to a channel that was showing an orchestra playing classical music.

As time has gone by, we discovered new fun activities, including games, coloring, crafts, developmentally appropriate toys and some movies that Monica enjoys, including Raggedy Ann and Curious George. We have also started a scrapbooking project to display our family adventures. Monica loves to be read a variety of childrens books and poetry.

Although Monica does not participate in adapted sports, we do play some unique family fun sports and we faithfully watch together the UConn women's basketball games.

Monica has used a variety of adaptive equipment, including a spoon with a built-up handle and a plate with high sides (to scoop against). Monica continues to participate more with her care - dressing and undressing, soaping up in the shower, bringing food to her mouth with a spoon, and brushing her teeth and hair.

Because Monica is non-verbal, she is learning basic sign language, such as "shower", "all done", "bed", "more", and "dad." She also uses assistive technology and augmentative communication devices at day program and at home.

To assist other families, therapists and teachers, we have researched and compiled a report on where to find and apply for funding for assistive technology, also ADA Ramps and treatment of veterans of any/all disabilities.

Monica also benefits from sensory activities and sensory integration therapy, which can be facilliated by a sensory room.

Monica loves to explore her surroundings, whether it be school, a respite center, grocery store, restaurant, home or vacation condo. She will wheel herself around and want to look in every room. She has a good memory so when we visit the same place again, she is able to navigate to where she wants to go.

Travelling with Monica has gotten easier over the years as we have learned what to bring, vacation planning, and what to ask for when arranging accomodations. Her disposition in the car has much improved, from kicking the back of our seats and vocalizing to relative peace and quiet. Albeit a surprising sensation for her, Monica enjoyed air travel to the Bahamas.

For physical fitness, Monica often takes short walks (with someone holding her stability and direction). She has a scooter that she sits on and uses her legs to propel herself around the kitchen. She also has a 4 wheeled walker and only requires someone in the front to guide it. At day program she pedals around the corridors on her adapted tricycle.

We have to manually stretch her heal cords which tend to be high tone and do passive range of motion on her upper extremities.

Monica eats a healthy diet with proper nutrition every day. She basically tolerates and eats only pureed food. She starts the day with oatmeal with a banana and scrambled eggs, and orange juice with liquid vitamins and minerals added. Mid morning snack may be a fruit cup or yogurt. Lunch includes a pureed vegetable and fruit, yogurt, and a nutritional supplement drink. Afternoon snack is fruit. Dinner is often yogurt, cottage cheese, vegetables, fruits, and juice or nutritional drink.

Our first single-family home had a very steep driveway and when Monica went to school in the winter, my wife often had to bring Monica down and up our steep driveway (in a wheelchair) because the school bus could not make it up due to snow or ice. When Monica was 6, my wife fell on the driveway trying to push Monica in her wheelchair, so we sold the house. We bought a flat lot and designed a safe and secure, handicapped accessible home that served our family well for many years.

We lived in a small rural town and have a wildlife preserve across the street. In our yard, we created our own backyard wildlife habitat that encouraged birds and small animals to visit or live on our property. Monica enjoys sitting outside in the shade or in the enclosed porch and enjoys listening to the sounds of nature, while dad either mows the lawn or works in his accessible garden.

We had three indoor pets. Two of the older cats were starting to be more comfortable around Monica, and likewise, Monica had been more interested and become more tolerant of their presence.

Before we decided to have a second child, we had genetic testing performed to avoid birth defects due to chromosomal abnormalities, a review of our family history and counseling. An occipital encephalocele is a type of neural tube defect, and neither side of our families had any history of this. Don't rely on your doctors and specialists to maintain family medical records - get your own copies of your medical tests, keep your own records and organize them for future reference.

I had inherited PKD from my mother, but no history of neural tube defects on either side of the family. My wife always wondered if her train trip by the Three Mile Island nuclear power plant during its meltdown accident may have caused her some chromosomal damage.

Martha was born 3 years later. Although she was surrounded by amniotic bands invitro, she was perfectly healthy. She now attends Wagner College in Staten Island and studies Performance Administration.

When Monica turned 18, we went through the legal process of legal guardianship in the Probate Court. To plan for her care and enjoyment of life after we have departed, we set up a special needs trust.

Monica was employed by the high school cafeteria. Every morning she was responsible for taking frozen cookies out of large boxes and putting them on baking trays to be baked. She often did 5 to 7 large trays, making several hundred cookies for the hungry teenagers at lunch. We are unsure at this time if Monica will be able to continue to work after she graduates from school, but we have included some employment resources for people with disabilities, such as creating an effective resume , disability rights, disability insurance and networking.

As Monica approached her 21st birthday (when she will no longer be eligible to attend public school), I worked on transition planning with the school and the State Department of Developmental Services to find Monica a suitable day program. Monica now attends an Easter Seals day program.

Unlike my youngest daughter Martha, Monica did not have the same teenage stress, rebellion, and dating concerns. One of the most important things a parent can do is try to maintain open and honest communication during the turbulent teenage years.

One of my long-term concerns is what will happen to Monica when I can no longer take care of her, so I am looking into senior health care options. The possibility of turning our home into a group home is no longer possible so I will eventually have to look for a group home where she will live until death.

Despite some state assistance, family budgets are particularly important for family finances. I have a flexible job as a COTA so I can take Monica to medical appointments and care for her during the day when she is sick or a caregiver is not available. Here is my COTA resume. I also make money working at home part time.

While family relationships and roles often change as children get older, here are some basic family values that promote a healthy family life. Divorce is higher than it should be. If only parents of disabled children could learn and embrace what is truly valuable in this world, then self sacrifice would be a joy and not a duty.

Roll away the stone and let the love of Jesus shine in your heart. Spirituality, religion and faith have been an important part of my life. I have learned much about self sacrifice and values and what is most important in life from my daughters. Monica has been a big factor in my self actualization. Monica helped to refocus my career goals to helping other in a personally meaningful way as an occupational therapy assistant.

For families with special needs, here are some resources on dealing with fears and anxieties, how to better cope with stress and depression.

Here is some information on adopting a child with special needs. This website offers inspiring stories submitted by other families with special needs as well as links to other websites on a wide variety of family-related subjects.

We hope you will enjoy your visit and come back often, as we are always adding new family-related information, activities and resources. Now, click the red tour bus (top right corner of every page) to start the family tour.