Adventures with Monica - a young woman with multiple disabilities

Early pregnancy fetal tests showed no abnormalities. The mother 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 - 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 the parents a dire prognosis - a short lifespan, 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 the father, 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. The father called his employer and asked coworkers for their prayers. 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 had survived the brain surgery - our own Christmas miracle!

The surgery removed a large part of her brain - dead gray matter inside the occipital encephalocele - mostly from the occipital and parietal lobes. The missing portion of her occipital lobe would effect her eyesight and balance. It wasn't several weeks before Monica was subsequently diagnosed with multiple disabilities and disorders including cortical blindness, cerebral palsy and mental retardation. The neural tube defect 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 pinkie. 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 and 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 handed us. Monica had 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 conception and the beginning of 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 we are always 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 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 all her grandparents. My father loved her so very much. I still feel his presence and know that his spirit is still with Monica and I.

As a small family in a rural community with a special needs child, we encountered many 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 families with special needs 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. 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, she 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 reaction, although we still have to avoid a particular brand of soft-serve ice cream.

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 birthday hat on, birthday cake lit, and all her family around singing her "Happy Birthday"... and she went 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, she attended less "regular" classes, and now that she is in high school, she unfortunately only attends chorus and occasionally a physical education class.

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

Ever since Monica was a baby, she enjoyed music. I will never forget one evening with Monica 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 - much to the delight of her mother who plays classical violist.

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 that is easier to hold, a plate with high sides (to scoop against). Monica continues to help more with to her self care - dressing and undressing, soaping up in the shower, bringing food to her mouth with a spoon, brushing her teeth and hair.

Because Monica is non-verbal, she is learning basic sign language, such as "shower", "all done", "more", "mom" and "dad." She also uses assistive technology and augmentative communication devices at school and at home for learning. To assist families and teachers, we have researched and compiled a report on where parents and teachers can find and apply for funding for assistive technology. 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 constantly complaining 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 outside (with someone holding her hand for stability and direction). She also has a scooter that she sits on and uses her legs to propel herself around the kitchen. Occasionally, she will attend physical education class at school, but if not she pedals around the corridors on her 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. I try to stay fit with my occupational therapy work, yoga and have also considered taking self defense for the sake of physical fitness.

Monica eats a healthy diet with proper nutrition every day. She basically tolerates and eats only pureed food. She starts the day with oatmeal, fortified with calcium, and orange juice with liquid vitamins and minerals added. Mid morning snack may be a flavored apple sauce. Lunch is often yogurt, a nutritional supplement drink, thickened soup, pureed fruit and/or vegetable. Afternoon snack is prunes and dinner is often yogurt, vegetable, fruit, juice and pudding for dessert.

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 continues to serve our family well to this day.

We live in a small rural town and have a wildlife preserve across the street. In our yard, we created our own backyard wildlife habitat that encourages 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 currently have three indoor pets - cats named Tattoo, Noah and Moe. Although still apprehensive, two of the older cats are starting to be more comfortable around Monica, and likewise, Monica has 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. I had inherited PKD from my mother (who died from a brain aneurysm in childbirth), 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 - perfectly healthy.

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 have set up a special needs trust.

As Monica approaches her 21st birthday (when she will no longer be eligible to attend public school), we are working with the school on transition planning to find Monica a suitable day program.

Monica is currenly employed by the high school cafeteria. Every morning she is responsible for taking frozen cookies out of large boxes and putting them on baking trays to be baked. She often does 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.

One of my 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 and the possibility of turning our home into a group home to ensure that Monica could live in her own home for the rest of her life until death.

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.

Despite some state assistance, family budgets are particularly important for family finances. I joined a wholesale club and also save money with discount coupons.

While family relationships and roles often change as children get older, here are some basic family values that promote a healthy family life.

My wife stayed home until our girls started to go to school. Now she works full-time and I have a more flexible job so I can take Monica to medical appointments. I also make money working at home and take care of much of the day-to-day chores around the house, and I have dinner ready when my wife comes home.

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.

Unlike my youngest daughter Martha, Monica has not gone through the same teenage stress, rebellion, and dating concerns. I think the most valuable thing a parent can strive to do is maintain open and honest communication with your teenager.

Roll away the stone and let the love of Jesus shine in your heart. Spirituality, religion and faith have always been of interest to me, but I have learned much about what is most important and satisfying in life from my daughter. She has helped to refocus my career goals to helping other in a personally meaningful way. Her brush with death has taught me to cherish our time together. Everything that Monica learns and does is a blessing and miracle in my eyes.

Monica has been a big factor in my self actualization, but I occasionally see a psychology to help overcome some of my fears and anxieties, cope with stress, and depression, which I have to contend with on almost a daily basis.

Here is some information on adopting a child with special needs ( which is not as difficult as it used to be.)

We also offer inspiring stories submitted by other families with special needs and a listing of link resources 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 please click on the red tour bus (top right on every page) and begin the family tour.