I was born in the early 1970s with spina bifida when not much was known about it and life goals for me were rather limited. However, my mother, even then, lived in the thought of possibilities on my behalf, raising me to be the best I could be. It was stressful. She strived to gain all the knowledge she could about my disability, my development and open all the opportunities life had to offer me despite doctors’ diagnosis that I might not be able live beyond a few days, sit up, respond to her voice, live away from an institutional setting, go to public school with typical children or be independent. Today, because of her “warrior advocacy” and her refusal to limit my growth because of my disability, I’m an active, full-time wheelchair user and thriving, married woman with my own life coaching service with a mission to motivate other people with disabilities and chronic illness of all ages to be the best they can be.

All parents want to have a family that meets the needs of their children, regardless of any disabilities. Children with disabilities are family members who bring challenges and responsibilities to their families that can be positive as well as negative. The life is bittersweet, colored with sad diagnoses, missed opportunities to catch something early and the happy moments of a child going beyond what was first expected of them by all the “experts”.

Members of a family influence each other, and the presence of a child with a disability in a family has an impact on family dynamics. There is an unqualified belief that all families respond in the same way to a child with a disability, but we know that families respond in many different ways because every family is so different. A number of factors affect how a family responds to a child’s disability, and it is important that families are armed to the teeth with all the tools and information that can help them make good decisions for their children—both mindfully and regardless of a disability. Most important, although families differ in the way they adapt to the challenge of having a child with a disability, most families can meet this challenge successfully. If you are a new parent, you may not know it yet, but you can do this.

Consider several things that impact parenting your child with a disability, address areas where all families have common experiences, and strategize for a sucessful parenting experience for both you and your child with a disability.

The Factors Involved Raising a Child With a Disability

Type of disability
Each type of disability has its own characteristics and behaviors that affect the family’s functioning. For example, an obvious disability (such as a physical impairment) may affect not only the way a child feels about himself or herself, but also the attitudes of parents, brothers and sisters, and others in the community when you are out and about. Profound disabilities that are more visible may cause others to excuse inappropriate behavior or may lead to a child being isolated socially. Language and speech disorders may affect everyday communication and be frustrating for both the child and others in making sure the child is not only heard, but understood. Emotional disorders, autism, and Attention Deficit Hyperactivity Disorder (ADHD) often prompt behavior concerns and embarrassment for family members.

Disabilities with uncertain outcomes may be emotionally stressful for families. Parents may keep searching for appropriate treatment and isolate themselves and the child from the outside world out of convenience or to conform to societal norms.

Cultural background
Culture refers to beliefs, attitudes, and values of a family and may stem from ethnic background and/or religion. Culture also relates to geographic location, and different regions of the country may have different values.

Culture is part of all aspects of living as a family including how the child is raised, and beliefs about education, health care, and seeking support outside the family. Some cultures are more accepting of disability than others, and still other cultures view disabilities as a private matter or may even consider them shameful or a curse on their family. Cultural groups that place great importance on their place of worship may find their church, synagogue, or mosque helpful for social support in times of need. Still today, houses of worship may not be as understand as we’d hope when regarding a child with a disability as a full part of the worship family. My mother went to several churches with me before we found one that was welcoming to me among the other youth. Educate and open dialogues to those ready to listen.

Family dynamics
There is considerable variation in families as well that can shake up a family, including single parent, two-parent, same-sex parent, and stepparent families, as well as grandparents and unrelated live-in members. The number of children and their ages also contribute to different types of families. Family structure refers not only to its members, but also to how the family is organized. Each type of family has characteristics that will affect the attention and time spent toward caring and nurturing the child with the disability.

For example, while the responsibilities of the single-parent family are the same as the two-parent family, there is only one parent available to do the work of two. This may result in great strain on the family system because of other child responsibilities, work schedules and financial constraints. Or, the presence of an older or younger sibling may mean that child has more extensive caretaking responsibilities or may receive less attention. It can be quite a balancing act. What’s important is that all parties feel they are part of a team and all are important even when it seems full attention isn’t paid in their direction.

Developmental stage of family and child
There are going to be major points where parents must confront limitations and strengths of all their children. These are at preschool age (3–5 years), school age (6–11 years), adolescence (12–18 years), and adulthood (19–21 years). Each stage requires different responses from different members of the family.
During the early years, for example, parents of a child with delayed development are concerned about physical health and safety, as well as readjusting their expectations. That does not mean you should not strive for the best in your child, though.

When I was going through puberty, however, my parents became more concerned by the differences between my physical appearance, my scholastic performance and social skills. Since my disability is primarily physical, making sure I was dressed like the other kids in an economical way over leg braces and crutches (which I don’t use now as an adult) was a concern to me as a growing teenager. I wanted to look cute. My mother wanted functional, so we had to meet in the middle when it came to form, function and budget.

If your child is not able to indicate an opinion with sounds, hand signals or facial expressions, try your best to dress your child in a way you can afford, that is easy to get on and off for hygienic reasons and is in line with your values and budget. Looking as much like the other kids is important to any child. Why not take that consideration in for a child with a disability?

I love purple and red, so my wheelchair has always been either red, or in more recent years, purple. I would dress up my crutches with bandanas and clip on stuffed animals I liked that wouldn’t impair my mobility and looked cute. It’s all about encouraging the development of a child’s personality.

Coping skills
Families have a variety of coping styles that vary in their effectiveness. There is research evidence that children with disabilities are more likely to be neglected or abused than other children. Children with behavioral difficulties are even more likely to suffer from maltreatment. Some characteristics that are associated with healthy coping include open and direct communication among family members and supportiveness of family members toward each other.

Common Issues for Families of Children With Disabilities

Families of children with disabilities have a number of common experiences that have economic and social consequences as well.
Economic concerns. Usually a family spends more money on their child with disabilities than on their other children because of adaptive equipment needs and medical expense. Expenses related to a child with a disability often result in financial hardship.

Even with insurance, there is medical care, therapy, childcare, adaptive equipment, transportation, laundry, and structural modifications for the home to accommodate a child or to repair damage from bumps and scrapes from crutches, walkers and wheelchairs, not to mention tutoring or summer programs or a specialized computer.

Often there is lost work time or interference with career advancement for a family member as well. Depending on the needs of the child, the hours of off-time can be stressful. Establish a relationship with your boss, neighbors and extended family members so there is a greater sense of understanding and support when you need to take time off for the care of your child with a disability.

Daily care needs
The physical and health needs of children with disabilities often require some effort depending on the level of the child’s independence, particularly when the disabilities are significant or the illnesses chronic. Daily care might include bathing, dressing, toileting, and feeding as well as cooking, cleaning, washing, and taking care of the entire household. Going to the doctor, to the supermarket, or to a fast food restaurant may be a major undertaking, but teamwork is key in creating a plan that works for everyone involved. As children get older, it may become more difficult for parents to accomplish certain tasks such as dressing, moving the child in and out of transportation, helping with toileting and bathing, and moving from place to place. Daily care can lead to increased stress and outside help might be needed.

Don’t be afraid to ask for it. If you qualify for a program or can afford it, it’s not a sign of weakness to ask for help, but a sign of great strength and support for your child’s continued growth. Remember that teamwork, though. You’re all in this together to win for everyone involved. You are a family, come what may. Stick together through the good and tough times. Seek supportive counseling from clergy and professionals for coping. Rally your friends and extended family. My grandparents were tremendous support while both my parents worked or were going through school.

Social and recreational opportunities Parents who have a child with a disability do not have as much leisure time and have fewer social interactions with friends if the child needs a lot of care. Still, that’s no reason to neglect things like alone time and date night. Respite is important, not just for the child, but for parents as well. Often, parents have a feeling of isolation; it is more difficult to go on family trips, out to dinner, or to the movies. Be creative and reach out to other families in the same boat to get a sense of how they keep it together. Schedules and consistency are important as well.

Parents may have difficulty finding a babysitter or caregiver who is specially trained. Also, negative attitudes of community members may be a barrier to families. Parents are often concerned that their children will be rejected by other children, but that’s no reason to give up. Educate the community. Get the child involved in mainstream, as well as disability-specific activities as they are able. I was involved in swimming lessons, art lessons, Girl Scouts and the like. I also had a play group of other kids with disabilities I enjoyed. It certainly broadened my horizons and my true sense of self as a whole person.

Future planning considerations
Concern about the future begins when parents first suspect that something is wrong. Parents are uncertain about their child’s future with regard to employment, social life, legal and financial needs, and what will happen if something happens to them. However, that concern can be a good thing. It can instill in parents the need to strive for the most with their child’s progress in life.

Certainly, parents are concerned about the future health and safety of the child. Thus, a major issue for all parents is planning for the child when he or she becomes an adult or is no longer eligible for mandated educational services. When the child moves after age 21 to adult services, the parent often has to contact each agency individually to inquire about services. Agencies in your family’s area such as the Autism Society, UCP Easter Seals, The Arc and Centers for Independent Living are certainly good resources to seek as the child grows into an adult and may voice the need to be more self-sufficient.

Parents’ roles may need to be even more proactive because the educational system is no longer involved. Get involved; find out what other parents are doing. Be active in your parent/teacher organization if you have the time.

Strategies for Parents to Help Children with Disabilities

Although each family situation is unique, there are some strategies that can help parents of children with disabilities address the concerns described above. Network, network, network! Think outside the box.

Family Relationships
• Share both verbal and physical affection within the family. Assuming your child doesn’t hear you or understand doesn’t mean they don’t deserve lots of affection.
• Provide unconditional love for children; accept and appreciate them whatever their disability as a whole person with potential.
• Identify your family’s strengths and where help is needed the most.
• Keep communication lines among family members open. For example, make sure brothers and sisters are kept informed of their sibling’s care, schedule and needs. Encourage problem-solving discussions with the whole family. The other children may have thought of something that your weary mind may not have.
• Be involved in decision making for your child’s needs.
• Support all members of the family. Recognize natural issues related to brothers and sisters including feelings of resentment, responsibility, concern about the future, embarrassment, or loneliness. Outbursts among siblings are common. Address the reason for the behavior as well as the behavior itself.
• Take care of your own social and emotional health. You need you just as much as the rest of the family does. Schedule breaks and time on your own as you can so you don’t short circuit yourself and short change the family.
Economic and Daily Care Needs
• Identify areas of need (medical services, childcare) and form a game plan to satisfy those needs.
• Identify resources available to the family in your state or community.
• Arrange for financial planning. Get information about financial benefits the family is entitled to receive (Social Security)
• Identify and contact resources for health care (medical insurance companies, Medicaid, Medicare, etc.).
• Identify organizations that provide support services. Use the Internet to find support groups and services (vocational rehabilitation services, independent living services, respite care, etc.).
• Seek legal advice about special needs trusts designed for families of children with disabilities when children are young. These trusts provide for children when parents are no longer alive and require specific legal language for the trust so that doesn’t impact your child’s benefits later.
Socialization and Recreational Needs
• Join a support group for parents and special needs play groups if they exist. If none exist, be a trail blazer and start one!
• Identify support networks that fit your needs including family, the schools, disability and chronic illness groups, religious organizations, and government services.
• Locate respite services through local organizations.
• Share babysitting with another parent whenever possible.
• Identify local organizations that have recreational activities such as integrated, accessible day camps, special needs summer camps, the YMCA, Boy Scouts & Girl Scouts or a Boys or Girls Club.

Educational Needs
• Have clear information about the disability, as well as the educational and behavioral implications.
• Have clear information about your legal rights as a parent and your child’s right to a free, equal education in the least restrictive environment. If you don’t know your rights, ask a community legal center, another parent or tap into an advocacy organization for special education and accommodation needs.
• Maintain good communication with the school and the classroom teacher. Keep everybody in the know about when your child will be out for a doctor’s appointment, brace fitting, developmental evaluations, etc. Ask for homework or class project and trip schedules in advance, if available.
• Be involved in school decision making for your child. And, ask the child, if he or she is able, if he or she is interested in being present at these meetings. When my mother had IEP meetings at school, she brought me with her. I might’ve been coloring at the end of the table, but I was there to respond as I could if I wanted to about physical therapy, bathroom break time or where I sat in the classroom so I could see and hear better, etc. I felt from an early age that my feelings about my experience at school and independence mattered. That boosted my self esteem, decision-making skills and maturity.

Not every situation is the same, but remember that you are not alone. You have quite a few resources out there within your family and your community to support you and your child with a disability. You will have to develop a tough skin and filters for the negative people and naysayers. Don’t get me wrong, illusions about your child and your life as a family aren’t helpful, but be open. Be open to the possibilities and try new things as your child grows. What works for one child may not work for yours and vice versa. To a child’s core, all we really want is to be loved and accepted for who we are and encouraged to be the best we can be.

Certainly, there are limitations to always keep in mind, but within that fence is a wide world for your child to test and reach for. It is better to have tried than to be afraid of trying at all, sealing the child away in a protective bubble of seclusion.

In the end, it’s up to your family. Remember that it isn’t the years in your child’s life that most matters, but the life in your child’s years.

Author's Bio: 

Monica, a certified life transition coach on wheels, has lived with spina bifida since birth. She is a full-time wheeler and positive motivational dealer for anyone living with the stressors of disability or chronic illness. She thrives on showing you how to harness the energy and resources within you and around you to be your best self in life, work and while seeking your optimal wellness. Please visit butterflywheel.com.